Adrenal Fatigue: A Possible Element of ME/CFS?

November 2, 2012

By Jody Smith

ME/CFS is not the only condition that the medical community can’t seem to reach a consensus about. Adrenal fatigue is another topic that raises conflicting opinions from different quarters. Is it a valid diagnosis? Is it not? Is this the paradigm of how the adrenals work? Is that paradigm closer to the truth? The debate goes on.

But let the argument continue in medical circles. In the meantime sick people are trying to find ways of getting well. The following paradigm for adrenal function and fatigue is one that has brought some healing for many that are ill.

Whether you’re experiencing adrenal fatigue or adrenal insufficiency, many symptoms associated with ME/CFS are also symptoms of adrenal glands that aren’t functioning properly. Exhaustion of the adrenals can result in low production levels of cortisol and DHEA. And this may be a factor for some who have ME/CFS.

Your adrenal glands produce more than 50 hormones. The adrenals regulate the body’s hormonal stress response. Their arsenal includes adrenaline for instant stress responses, as well as cortisol and DHEA for short-term and long-term stress responses. Depleted adrenals are low in some hormones, especially cortisol.

Cortisol is a glucocorticoid. Glucocorticoids metabolize food, regulate blood sugar and stress response. They control the inflammatory response of your immune system.

Mineralocorticoids include aldosterone. Mineralocorticoids control blood pressure and blood volume, as they also regulate potassium, sodium and water.

Adrenaline speeds up your heart and regulates the flow of blood to brain and muscles. It causes glycogen to be converted to glucose in the liver.

According to Dr. Joseph Mercola, as many as 80% of American adults may suffer from some degree of adrenal fatigue at some point in their lives.

Mercola goes on to say that if you’re suffering from adrenal fatigue your exhaustion and weakness may be worse in the morning and into the afternoon. You may have trouble getting up in the morning and what sleep you do get does not refresh.

If you have adrenal fatigue, headaches, joint pain and a sore throat are common symptoms. You may also experience dizziness, dehydration or low blood pressure. Maybe you have difficulty in maintaining or gaining weight.

Unrefreshing sleep, post-exertional malaise as well as impaired cognitive processes are all too common. You may become lightheaded when rising, or while standing. Maybe you’re unable to handle stress like you used to.

And your memory? Forget about it.

Your immune system may be suppressed, and allergies may increase or appear for the first time. Autoimmune disorders may emerge or worsen. Noticeable muscle weakness may afflict you. Bone density, which is not noticeable but is nevertheless dangerous, may be diminishing.

You may be depressed. Perhaps your sex drive has taken a nose dive. Increased or new menopause or PMS symptoms may have cropped up.

You could be living with a strong need for caffeine to keep going, and suffering wild ups and/or downs from abnormal blood sugar levels. You may crave fat, salt or sugar like your life depended on it.

Mercola describes a common pattern experienced by the person with adrenal fatigue. They may enjoy (if that’s not too strong a word) an increase in energy around 6 p.m., and a dip at 9 or 10 p.m. A rebound of energy may hit at around 11 p.m. which lasts till about 1 a.m. Sleep may or may not come through the night.

Many may find themselves experiencing a reversal of normal day/ night cycles, finally falling asleep as dawn begins to peep. These may also find themselves sleeping through the day and awakening at dusk.

Mercola says that the commonly-used ACTH test will merely show extremely high or low hormone levels. Instead, he recommends a salivary cortisol test which can be purchased without prescription and can be performed at home.

Dr. Sarah Myhill has said that levels of cortisol and DHEA can be measured with an adrenal stress profile (ASP) test. The ASP test involves samples of saliva. If inadequate levels of DHEA are found, a supplement can be purchased over the counter in the United States.

Cortisol is trickier to evaluate because its level will go up and down through the day. Cortisol tends to be higher in the morning and lower later in the day. It will rise and fall according to stressors as the day wears on. Chronic stressors can be mental, emotional, physical or financial pressures. They can be physical strain, dietary issues, or lack of sleep. They can be anything that causes you to feel powerless or in danger.

If the ASP test shows high cortisol and low DHEA this indicates that the body is not able to produce enough DHEA, and is the initial indicator of adrenal exhaustion. This can be normal. For a while. But if the stressors causing this scenario continue indefinitely the adrenals will be hard pressed to return to proper functioning.

If the ASP test shows low cortisol and low DHEA, this could indicate that exhausted adrenals are unable to keep up with production of either hormone. If levels are extremely low, the adrenals may be vulnerable to Addison’s disease which is complete adrenal failure. If Addison’s is not treated, it is fatal.

If the ASP test shows low cortisol and normal or low-normal DHEA, this may be encouraging since it may indicate that adrenals are beginning to recuperate.

If you are experiencing any or all of the symptoms mentioned above, your adrenal glands could be impaired, and might benefit from support. Adrenal support may not cure your ME/CFS but it may make you a little less sick and a little more well.

Sources:

Adrenal Depletion: The Most Commonly Missed Cause of Fatigue
http://www.prohealth.com/fibromyalgia/library/showArticle.cfm?libid=16769&B1

Common Hormonal Problems in CFS – Adrenal
http://drmyhill.co.uk/wiki/Common_Hormonal_Problems_in_CFS_-_Adrenal

Adrenal Fatigue in Fibromyalgia & Chronic Fatigue Syndrome: Is It Real?
http://chronicfatigue.about.com/b/2010/11/13/adrenal-fatigue-in-fibromyalgia-chronic-fatigue-syndrome-is-it-real.htm

79 comments

{ 79 comments… read them below or add one }

Enid November 2, 2012 at 1:32 pm

But it is Mark – we know it.

Ema November 2, 2012 at 1:40 pm

I wish that we could stop using the term "adrenal fatigue" which means nothing and has a horrible reputation as being part of the worst of "alternative" medicine. Let's instead refer to the condition properly as HPA Axis Dysfunction – a signalling problem in the brain that is VERY common in ME/CFS and is usually untreated or improperly treated.

For most of us with ME/CFS, our adrenals are structurally fine. They simply do not process signals from the brain appropriately. This is in contrast with autoimmune diseases like Addison's where there is structural damage to the gland.

Unfortunately, most mainstream medicine does not recognize any other type of adrenal dysfunction other than Addison's. Thankfully many more open minded doctors are starting to recognize endocrine disruption for what it is and are treating patients with the appropriate hormones. These interventions often provide great symptomatic relief for some of the most disabling symptoms like fatigue, pain, sleep problems, and metabolic issues.

It's also important to note that many infections (Lyme in particular but viral infections as well) can also disrupt the endocrine system. Replacing those hormones helps the body fight the infections.

Enid November 2, 2012 at 2:17 pm

Interesting Ema – of course much more complex than your run of the mill ignorant Doc – do you think one day they will be able to take on real medicine – one can but hope – got a feeling we are depending you US wise.

AFCFS November 2, 2012 at 2:20 pm

Adrenal Fatigue: A Possible Element of ME/CFS. Spot on. Call it what you like, but that is why I have the AF (Adrenal Fatigue) in front of the CFS in my username. I got the Dx for CFS first actually by a pdoc. But he just wanted to try psych meds to "fix" it. I said no thanks and then found an Integrative Internist who specializes in such things.

The thing is, I suppose if one's symptoms are cured by treatment for Adrenal Fatigue, then technically they may never have had CFS. On the other hand, it could be that CFS is just unsatisfactorily diagnosed/treated Adrenal Fatigue.There is a lot going on to investigate.

Also of note is besides blood cortisol and DHEA-S tests, can also get a Pregnenolone tests as well as GH (Growth Hormone), IGF-1 (Insulin-like growth factor 1), and aspartate aminotransferase/alanine aminotransferase (AST/ALT) ratio.

Here is a pretty good overview of Adrenal Fatigue and Hormone Therapy. I think it is tricky business though. I also think many people have a misconception about adrenal fatigue. It seems like they assume the adrenals act in a vacuum or function in the body in a one-way closed loop.

My morning cortisol was low, DHEA-S was in normal range, Pregnenolone low, AST and ALT high, IGF-1 high.

My Internist has me on a relatively high dose of Pregnenolone (500 mg) and DHEA (100 mg) for the hormonal part as well as a relatively high dose of N-Acetyl-L-Cysteine (NAC – 2400 mg) and Boron (90 mg) for the cognitive/memory issues. My lab work did not detect any boron in my system.I also take other complimentary supplements.

On top of that I had previously been Dx'd for hypothyroidism and take 88 mcg of SYnthroid for that. The Internist put me on the iodine protocol to see if that could be rectified and I might be able to get off the Synthroid or at least lower the dose.

Also got an MRI ordered for pituitary as well as an abdominal CT scan for potential liver issues.

Would like to hear anyone one else's experience.

AFCFS November 2, 2012 at 2:28 pm
Ema

For most of us with ME/CFS, our adrenals are structurally fine. They simply do not process signals from the brain appropriately.

This is interesting. Is it anecdotal or other source(s) to back it up?

nanonug November 2, 2012 at 2:41 pm
Ema

I wish that we could stop using the term "adrenal fatigue" which means nothing

Indeed!

Ema

Let's instead refer to the condition properly as HPA Axis Dysfunction

Amen to that!

nanonug November 2, 2012 at 2:46 pm
AFCFS

This is interesting. Is it anecdotal or other source(s) to back it up?

There is no such thing as "adrenal fatigue" in medical science. You can test for adrenal insufficiency (primary or secondary) by performing an ACTH challenge. If, after being inundated with ACTH, your adrenals don't release any cortisol, then you have primary adrenal insufficiency. Otherwise, the problem lies elsewhere.

nanonug November 2, 2012 at 2:47 pm
AFCFS

AST and ALT high

This is serious stuff! The abdominal CT scan is a good idea. Have you been tested for Hepatitis (A, B and C)?

AFCFS November 2, 2012 at 3:12 pm
nanonug

There is no such thing as "adrenal fatigue" in medical science. You can test for adrenal insufficiency (primary or secondary) by performing an ACTH challenge. If, after being inundated with ACTH, your adrenals don't release any cortisol, then you have primary adrenal insufficiency. Otherwise, the problem lies elsewhere.

No doubt – but that really does not answer the question, which was in reference to:

Ema

IFor most of us with ME/CFS, our adrenals are structurally fine. They simply do not process signals from the brain appropriately.

Could you tell me when CFS became known – when it was definitively adopted by all "medical science"? What did people call it before CFS or did they just spew out a list of symptoms? Seems there are still Controversies related to chronic fatigue syndrome, all of which have much to do about naming.

In similar parlance, Adrenal fatigue is a collection of signs and symptoms, known as a syndrome, that results when the adrenal glands function below the necessary level. I don't feel the need to wait around for the CDC to name what I might be experiencing.

AFCFS November 2, 2012 at 3:22 pm
nanonug

This is serious stuff! The abdominal CT scan is a good idea. Have you been tested for Hepatitis (A, B and C)?

Yeh, it is odd because I also think it is serious stuff but the doc seems less concerned about it. He thinks it might be fatty liver from being ore-diabetic (althought A1C was fine, but had slight high glucose on last test -102, which I really do not see as a problem).

I have not drank alcohol very much in my life and seldom now, so it is hard to see as fatty liver form that. There could be tumor, or cancer, will not know until they run it. Was tested for Hepatitis (A, B and C). Never been exposed. Was also tested a slew of other viral and bacterial infections, past and present. Nothing of consequence. Think was exposed to epstein barr, but it never manifested is not currently present.

It is very complicated when you get into this stuff and I start to have a greater appreciation for docs that can figure it out and less of an appreciation for those who just play by the book. I doubt that many docs would have bothered with the AST and ALT and I had to explain to my pdoc what the IGF-1 was.

nanonug November 2, 2012 at 3:27 pm
AFCFS

Could you tell me when CFS became known – when it was definitively adopted by all "medical science"? What did people call it before CFS or did they just spew out a list of symptoms? Seems there are still Controversies related to chronic fatigue syndrome, all of which have much to do about naming.

CFS is just a list of symptoms, nothing else. Same applies to ME.

AFCFS

In similar parlance, Adrenal fatigue is a collection of signs and symptoms, known as a syndrome, that results when the adrenal glands function below the necessary level. I don't feel the need to wait around for the CDC to name what I might be experiencing.

It's called primary adrenal insufficiency by medical science. And it's testable by medical science.

AFCFS November 2, 2012 at 3:44 pm

Interesting enough Acromegaly (essentially anterior pituitary gland defect/benign tumor) can cascade down to cause just about every adrenal related symptom as well as CFS symptoms. But not likely the cause of CFS as it is about 3-4 cases per million population per year. The mean age at diagnosis is 40-45 years. That is what the MRI is for (because of elevated IGF-1). I think what I was trying to get across (above^) is that with CFS, the etiology, and causative element(s) are uncertain. So while trying to get better, why not investigate other avenues – be they medically accepted or not – that actually do have a cure. I figure that if I stumble across one and then lose the CFS diagnosis, I will be OK with that :)

AFCFS November 2, 2012 at 3:55 pm
nanonug

There is no such thing as "adrenal fatigue" in medical science. You can test for adrenal insufficiency (primary or secondary) by performing an ACTH challenge. If, after being inundated with ACTH, your adrenals don't release any cortisol, then you have primary adrenal insufficiency. Otherwise, the problem lies elsewhere.

I do appreciate this info – out of all test, ACTH challenge was never mentioned. Will have to ask the doc about it when I see him in a week or so. Just bookmarked it to the Doc Discussion folder

heapsreal November 2, 2012 at 5:19 pm

I think adrenal dysfunction is a good term as it doesnt refer to the adrenals as being fatigue as generally its a problem with signalling from the hypothalamus that signal to the adrenal glands to produce cortisol and dhea. Generally western docs say it cant be diagnoseed accurately and its just a group of symptoms but i say it can be diagnosed by testing cortisol and dhea together with symptoms.

The problem with western medicine is that anything they dont recognise as being diagnosed through a test is classed or diagnosed as depression, its their go to diagnosis when they dont know what to call something and of cause they know how to treat it, there heaps of things to use starting with prozac etc serotonin fixes anything, just a pity they cant test ones levels of serotonin like cortisol and dhea.

Ema, one problem with calling it HPA axis dysfunction is that the psychobabblers are already onto that term and is their reason to use antidepressants as they say serotonin can fix it. I have never heard of a psychobabbler or doctor measure one hpa axis function or measure ones serotonin and or noradrenaline. I think theres more hochus pokus going on treating depression etc then there is with adrenal fatigue. If cortisol function is measured then it only recognises obvious defiencies, so those who have some type of dysfunction but arent in the obvious dysfunction/defiency, theyare left floating around feeling like crap with a script for the latest antidepressant.

I think treating hormonal dysfunctions can help improve how one feels, if one could get their serotonin levels measured and if low treated then i think this could help but i think blindly increasing serotonin without testing it is why so many people react poorly to this type of treatment.

cheers!!

Mattman1 November 2, 2012 at 5:37 pm

Also a big problem is that we technically don't have experts solely on fatigue itself– there are so many causes, yet experts on what create it are pretty nonexistent; I mean, many know the basic ones- cardiac, pulmonary, anemia, ect. But one can't help but wonder how many in the CFS boat are really victims of lesser known disorders like disbiosis or some form of parasite. So many have gotten lost through the cracks, and therein lies another aspect of the tragedy– simple solutions that some never are lucky enough to find, and continue to suffer. The truth is, a free forum like this is many's only hope to finding better care. There is no one waiting in the wings for many in the area they live.

heapsreal November 2, 2012 at 5:41 pm
Mattman1

Also a big problem is that we technically don't have experts solely on fatigue itself– there are so many causes, yet experts on what create it are pretty nonexistent; I mean, many know the basic ones- cardiac, pulmonary, anemia, ect. But one can't help but wonder how many in the CFS boat are really victims of lesser known disorders like disbiosis or some form of parasite. So many have gotten lost through the cracks, and therein lies another aspect of the tragedy– simple solutions that some never are lucky enough to find, and continue to suffer. The truth is, a free forum like this is many's only hope to finding better care. There is no one waiting in the wings for many in the area they live.

We do tend to bag doctors alot but they are only human and cant expect to know everything. we need more docs who specialise in this stuff, i suppose the specialists for this are intergrative docs??

Ema November 2, 2012 at 6:12 pm
Enid

Interesting Ema – of course much more complex than your run of the mill ignorant Doc – do you think one day they will be able to take on real medicine – one can but hope – got a feeling we are depending you US wise.

Yes, I do think that there will be a sea change before too long. The current medical paradigm is unsustainable in my opinion and will collapse under the epidemic of chronic illnesses that we are setting ourselves up for with our use of pharmaceuticals and our destruction of our food and water supply. In the wake of that destruction, there will be room for new ideas to emerge and a more holistic outlook of how our body systems all work together will again be common sense.

Ema November 2, 2012 at 6:21 pm
heapsreal

We do tend to bag doctors alot but they are only human and cant expect to know everything. we need more docs who specialise in this stuff, i suppose the specialists for this are intergrative docs??

Sorry, heapsreal, you and I agree on a lot, but I have a bone to pick with you here.

Doctors are highly educated and specialized in the area that they practice. If I pay them hundreds of dollars an hour, I expect them to know (if not everything) a lot more than they do usually!

If buildings I designed fell down, no one would call me human. They would sue me for gross negligence. And they would be right! Doctors are charged with protecting our most precious asset. If they do not have the temperament and intellectual curiosity to do their jobs with the necessary degree of rigor, they need to find alternative careers. Too many doctors actively hurt people with their ignorance and egotism. These doctors need to find themselves unprotected by medical associations living in the distant past and funded by pharmaceutical giants and start to remember their responsibilities to the populations that they are meant to serve.

I am lucky that I have some financial resources in order to search out good doctors but it is hard! But what about the people who don't have those options? They shouldn't be saddled with second rate, only "human" doctors. It's time for doctors to start being part of the solutions instead of the problems.

satoshikasumi November 2, 2012 at 6:36 pm

The question is, does the treatment work?

Hydrocortisone was one of the first treatments studied for ME/CFS in a double-blind fashion. As far as I am aware, the results were: low dose replacement was ineffective, high-dose replacement was effective (from a statistical standpoint) but it caused adrenal suppression.
The researchers concluded the risks outweighed the modest clinical benefits. To my knowledge, all the top ME/CFS docs, such as Dr. Peterson, agree with this conclusion and never use oral corticosteroids for this disease.

To my knowledge, DHEA has little to no evidence to support its use here.

Ema November 2, 2012 at 6:48 pm
satoshikasumi

The question is, does the treatment work?

Hydrocortisone was one of the first treatments studied for ME/CFS in a double-blind fashion. As far as I am aware, the results were: low dose replacement was ineffective, high-dose replacement was effective (from a statistical standpoint) but it caused adrenal suppression.
The researchers concluded the risks outweighed the modest clinical benefits. To my knowledge, all the top ME/CFS docs, such as Dr. Peterson, agree with this conclusion and never use oral corticosteroids for this disease.

To my knowledge, DHEA has little to no evidence to support its use here.

Hydrocortisone will not fix ME/CFS and should not be administered without appropriate testing. If anyone expects a miraculous recovery from hormone replacement, they will likely be disappointed. But for me, significant reduction of symptoms such as fatigue and pain and a return to life out of bed have been *enough*.

There are no well designed current studies aimed directly at this issue. No one wants to fund them because there are no financial benefits.

No one wants to talk about the benefits of low dose (defined by conventional medicine as less than 40 mg of HC per day) steroids because everyone gets nervous about adrenal suppression. But doctors ARE using them in their practices because they realize that it is a Goldilocks problem – too little is just as much of a problem as not enough. And other doctors are trying to treat the underlying brain dysfunction, and other doctors try to use herbal remedies to avoid the stigma of steroids.

It would be amazing to have a one-size fits all solution, but it is unwise in my opinion to discount the anecdotal evidence of many patients who have been helped by steroids by discounting them based on antiquated research that is limited in scope at best.

DHEA has been shown conclusively to benefit patients with Addison's when levels are low. I personally have also benefited from raising my DHEA levels from 6 to around 150. My eyes were so dry that I spent a fortune on drops before DHEA. I rarely use them anymore and that is just one benefit.

heapsreal November 2, 2012 at 7:15 pm
satoshikasumi

The question is, does the treatment work?

Hydrocortisone was one of the first treatments studied for ME/CFS in a double-blind fashion. As far as I am aware, the results were: low dose replacement was ineffective, high-dose replacement was effective (from a statistical standpoint) but it caused adrenal suppression.
The researchers concluded the risks outweighed the modest clinical benefits. To my knowledge, all the top ME/CFS docs, such as Dr. Peterson, agree with this conclusion and never use oral corticosteroids for this disease.

To my knowledge, DHEA has little to no evidence to support its use here.

Theres little evidence on dhea because theres little research being done on it as the pharma companies cant patent it. I dont agree with taking these things blindly but if tested low then supplementing these to get them to a normal level i think is sensible. DHEA is quite safe if taken for the right reason and it doesnt have any negative feedback issues like alot of hormones like prednisone etc.

Low cortisol i think can be improved with other tretaments, i use pregenolone which has no negative feed back issues like dhea and for me can help increase cortisol and energy. hydro cort probably should be only used if other treatments have failed. there might not be alot of evidence for increasing cortisol but for those who have low levels, improving their cortisol to normal seems to help alot of people. Its not a cure but a piece of the puzzle i think. Also about balancing hormones back to normal.

heapsreal November 2, 2012 at 7:23 pm
Ema

Sorry, heapsreal, you and I agree on a lot, but I have a bone to pick with you here.

Doctors are highly educated and specialized in the area that they practice. If I pay them hundreds of dollars an hour, I expect them to know (if not everything) a lot more than they do usually!

If buildings I designed fell down, no one would call me human. They would sue me for gross negligence. And they would be right! Doctors are charged with protecting our most precious asset. If they do not have the temperament and intellectual curiosity to do their jobs with the necessary degree of rigor, they need to find alternative careers. Too many doctors actively hurt people with their ignorance and egotism. These doctors need to find themselves unprotected by medical associations living in the distant past and funded by pharmaceutical giants and start to remember their responsibilities to the populations that they are meant to serve.

I am lucky that I have some financial resources in order to search out good doctors but it is hard! But what about the people who don't have those options? They shouldn't be saddled with second rate, only "human" doctors. It's time for doctors to start being part of the solutions instead of the problems.

Yes and no, problem is they arent taught anything about these issues and there are no specialists to refer us to. I suppose just dont put your hand up to build buildings u dont have experience with. All this is why many of us become our own doctors. Doctors can get in trouble for treating beyond their scope of practise, probably because it makes the bad docs look even worse??

We do agree alot on things dont we :thumbsup:

taniaaust1 November 2, 2012 at 7:55 pm
heapsreal

We do tend to bag doctors alot but they are only human and cant expect to know everything. we need more docs who specialise in this stuff, i suppose the specialists for this are intergrative docs??

I agree they cant be expected to know everything but so many doctors deserve getting bagged as they arent honest at all about that medicine dont know everything and they go around acting like Gods and not listening to those who are experiencing illness.

Ema November 2, 2012 at 7:56 pm
AFCFS

I do appreciate this info – out of all test, ACTH challenge was never mentioned. Will have to ask the doc about it when I see him in a week or so. Just bookmarked it to the Doc Discussion folder

Most people with ME/CFS related adrenal issues would do better with a low dose stim test. This will still miss about half of the people with secondary adrenal insufficiency but it is a better choice than the full dose test. You can google ACTH stimulation test. The Wikipedia article is pretty reasonable in this case.

taniaaust1 November 2, 2012 at 7:58 pm
satoshikasumi

The question is, does the treatment work?

Hydrocortisone was one of the first treatments studied for ME/CFS in a double-blind fashion. As far as I am aware, the results were: low dose replacement was ineffective, high-dose replacement was effective (from a statistical standpoint) but it caused adrenal suppression.
The researchers concluded the risks outweighed the modest clinical benefits. To my knowledge, all the top ME/CFS docs, such as Dr. Peterson, agree with this conclusion and never use oral corticosteroids for this disease.

To my knowledge, DHEA has little to no evidence to support its use here.

For me with low dose hydrocortisone.. the answer is no I didnt feel any change at all (even thou my test results showed out of normal range low cortisol). There is a possibly thou that maybe I wasnt put on a high enough dose of hydrocortisone.

heapsreal November 2, 2012 at 8:04 pm
taniaaust1

I agree they cant be expected to know everything but so many doctors deserve getting bagged as they arent honest at all about that medicine dont know everything and they go around acting like Gods and not listening to those who are experiencing illness.

Agree, i have more respect for i doc thats say they dont know then one who just makes crap up pretending to know better.

caledonia November 2, 2012 at 10:48 pm
Ema

I wish that we could stop using the term "adrenal fatigue" which means nothing and has a horrible reputation as being part of the worst of "alternative" medicine. Let's instead refer to the condition properly as HPA Axis Dysfunction – a signalling problem in the brain that is VERY common in ME/CFS and is usually untreated or improperly treated.

For most of us with ME/CFS, our adrenals are structurally fine. They simply do not process signals from the brain appropriately. This is in contrast with autoimmune diseases like Addison's where there is structural damage to the gland.

Unfortunately, most mainstream medicine does not recognize any other type of adrenal dysfunction other than Addison's. Thankfully many more open minded doctors are starting to recognize endocrine disruption for what it is and are treating patients with the appropriate hormones. These interventions often provide great symptomatic relief for some of the most disabling symptoms like fatigue, pain, sleep problems, and metabolic issues.

It's also important to note that many infections (Lyme in particular but viral infections as well) can also disrupt the endocrine system. Replacing those hormones helps the body fight the infections.

"For most of us with ME/CFS, our adrenals are structurally fine. They simply do not process signals from the brain appropriately. "

I believe this is true. Rich Vank said that the signalling is lost because of glutathione depletion in the hypothalmus and pituitary (which control the adrenals). This is due to a partial methylation cycle block. Restoring methylation and raising glutathione should restore adrenal signaling.

Case in point – my adrenals have been flatlined on adrenal saliva tests for many years. However, I can't tolerate any amount of any kind of adrenal supplement. Everything is too overstimulating. The best I can do is replace the salt and magnesium that are massively lost due to this problem.

Last year I went through horrible SSRI withdrawal. Within a few months my adrenals went from almost zero across the board, to extremely high across the board. I had to take Relora to lower them back down! If my adrenals were truly "fatigued" there would be no way this could happen.

I have been tested and do have methylation problems. I'm currently working on methylation treatment in the hopes that this will ultimately fix the adrenal signalling and a multitude of other problems.

This is not to say that some people may not have actual adrenal fatigue. I don't know how you tell the difference because on an adrenal saliva test, they look exactly the same -maybe by how they respond to glandulars? Some people do tolerate and get benefit from them.

LisaGoddard November 3, 2012 at 6:29 am

This article made shocking reading as I identified with many of the symptoms. I always wondered wondered why in the early evening, around 6ish, I suddenly felt better for a while.
I did try pregnenolone which helped my cognitive function but made the inflammation much worse so had to stop.
Does anyone know if 7 keto DHEA would be an option? I don't know if it helps the immune system as DHAE does?
I am highish risk of breast cancer so am a little reluctant to take DHEA.

Mattman1 November 3, 2012 at 7:34 am

I also wonder, did Rich ever get to do tests on normal, non-CFS patients in relation with those who have CFS concerning the Methylation block? Wanted to know the ratio of the block and severity of it in relation with 'healthy' people.

nanonug November 3, 2012 at 7:42 am
Mattman1

I also wonder, did Rich ever get to do tests on normal, non-CFS patients in relation with those who have CFS concerning the Methylation block?

As far as I know, no.

AFCFS November 3, 2012 at 7:54 am
caledonia

"For most of us with ME/CFS, our adrenals are structurally fine. They simply do not process signals from the brain appropriately. "

Has anyone had this checked, or heard other studies of similar content?

Small adrenal glands in chronic fatigue syndrome: a preliminary computer tomography study.

"The right and left adrenal gland bodies were reduced by over 50% in the CFS subjects indicative of significant adrenal atrophy in a group of CFS patients with abnormal endocrine parameters."

nanonug November 3, 2012 at 8:15 am
AFCFS

Has anyone had this checked, or heard other studies of similar content?

Psychosom Med. 2005 May-Jun;67(3):433-40.
24-hour pituitary and adrenal hormone profiles in chronic fatigue syndrome.

Di Giorgio A, Hudson M, Jerjes W, Cleare AJ.
Source

Department of Neurological and Psychiatric Services, University of Bari, Bari, Italy
Abstract

OBJECTIVES:

Disturbances of neuroendocrine function, particularly the hypothalamo-pituitary-adrenal (HPA) axis, have been implicated in the pathophysiology of chronic fatigue syndrome (CFS). However, few studies have attempted to measure blood levels of pituitary or adrenal hormones across a whole 24-hour period in CFS, and those that did so have used infrequent sampling periods. Our aim was to assess 24-hour pituitary and adrenal function using frequent blood sampling.
METHODS:

We recruited 15 medication-free patients with CFS without comorbid psychiatric disorder and 10 healthy control subjects. Blood samples were collected over 24 hours and assayed for cortisol, corticotropin (ACTH), growth hormone (GH), and prolactin (PRL) levels on an hourly basis during daytime hours (10 am to 10 pm) and every 15 minutes thereafter (10 pm to 10 am).
RESULTS:

Repeated-measures analyses of variance were undertaken using hormone levels averaged over 2-hour blocks to smooth curves by reducing the influence of sample timing relative to secretory burst. For ACTH, there was both a main effect of group, suggesting reduced mean ACTH secretion in patients with CFS over the whole monitoring period, and a group-by-time interaction, suggesting a differential pattern of ACTH release. Post hoc analysis showed reduced ACTH levels in CFS during the 8 am to 10 am period. In contrast, there were no significant abnormalities in the levels of cortisol, GH, and PRL in patients with CFS over the full cycle compared with control subjects. Cosinor analysis found no differences in the cortisol circadian rhythm parameters, but the ACTH rhythm did differ, patients with CFS showing an earlier acrophase.
CONCLUSIONS:

Patients with CFS demonstrated subtle alterations in HPA axis activity characterized by reduced ACTH over a full circadian cycle and reduced levels during the usual morning physiological peak ACTH secretion. This provides further evidence of subtle dysregulation of the HPA axis in CFS. Whether this dysregulation is a primary feature of the illness or instead represents a biologic effect secondary to having the illness itself remains unclear.

PMID: 15911907

MishMash November 3, 2012 at 4:20 pm

Adrenal fatigue is not a "possible element" in my opinion. It is a huge factor. It is as true as the day is long. Unfortunately, we do not know why.

jimells November 4, 2012 at 10:05 am
heapsreal

… problem is they arent taught anything about these issues

The medical industry never hesistates to use this as an excuse for inaction. I don't think it holds much water. If all I knew about computers came from the programming school I attended in 1974 – 75, I'd still be using punched cards. Is there much demand for punched cards today?

I find the phrase 'adrenal fatigue' to be problematic, and about as useful as the phrase 'chronic fatigue syndrome'. It doesn't really tell us anything. I suppose one could say that a heart with blocked arteries is tired, but I have never seen this described as 'cardiac fatigue'.

I have many of the symptoms associated with a screwed up cortisol cycle. For reasons that were unclear to me (the cortisol blood test was 'normal') an endocrinologist ordered the ACTH stim test. The results didn't show a problem. The endo never investigated potential problems further up the HPA axis, and simply wrote a report claiming I was 'seeking attention' and needed antidepressants.

My personal opinion is that I don't have 'adrenal fatigue', but there is an HPA axis problem. I've just received the supplements for the Simplified Methylation Protocol, and I'm hoping that will help.

Enid November 4, 2012 at 11:28 am

Well different problems at different stages and this was one of mine. Check it all out.

globalpilot November 4, 2012 at 12:01 pm
Mattman1

I also wonder, did Rich ever get to do tests on normal, non-CFS patients in relation with those who have CFS concerning the Methylation block? Wanted to know the ratio of the block and severity of it in relation with 'healthy' people.

No, but the lab that runs the test – Health Research and Diagnostics – did. He refers to it in his paper.

nanonug November 4, 2012 at 3:27 pm
jimells

My personal opinion is that I don't have 'adrenal fatigue', but there is an HPA axis problem.

Inflammation/infection appear to "modulate" the HPA axis. Therefore, one needs to look elsewhere for answers, in my opinion. For example: "Immune Modulation of the Hypothalamic-Pituitary-Adrenal (HPA) Axis during Viral Infection."

valentinelynx November 4, 2012 at 10:53 pm
satoshikasumi

The question is, does the treatment work?

Hydrocortisone was one of the first treatments studied for ME/CFS in a double-blind fashion. As far as I am aware, the results were: low dose replacement was ineffective, high-dose replacement was effective (from a statistical standpoint) but it caused adrenal suppression.
The researchers concluded the risks outweighed the modest clinical benefits. To my knowledge, all the top ME/CFS docs, such as Dr. Peterson, agree with this conclusion and never use oral corticosteroids for this disease.

To my knowledge, DHEA has little to no evidence to support its use here.

Actually I believe the studies showed the opposite. Looked this up a while ago when I started on low dose hydrocortisone (5 mg twice a day – which has helped my tolerance for stress signficantly). I did find this letter which summarizes some of the results well, it is from THE LANCET • Vol 353 • May 8, 1999, p 1618.

"Sir—Anthony Cleare and co-workers1 report that the use of low-dose hydrocortisone (5 or 10 mg daily) is associated with substantial reductions in self-rated fatigue and disability in patients with CFS. Their regimen was not complicated by suppression of endogenous adrenal glucocorticoid secretion. McKenzie et al,2 however, obtained less impressive results with daily doses of 25–35 mg of hydrocortisone in CFS, and their doses led to endogenous adrenal glucocorticoid hyposecretion. These workers2 refer to Jefferies’ report3 in which 371 patients were treated with 20 mg or less hydrocortisone daily in divided doses and at maximum intervals of 8 h. They summarised the findings of Jefferies as follows: “Low- dose glucocorticoid replacement, defined as 20 to 40 mg of hydrocortisone in divided daily doses, was felt to be safe, to cause no symptoms other than occasional gastric distress, and to benefit patients with chronic fatigue”. The dosages McKenzie et al used were larger than Jefferies recommended. Also, none of Jefferies patients were treated for CFS, hydrocortisone was used for up to 9 years, and patients withstood major surgical procedures and acute severe illnesses uneventfully without change in dosage.3 The findings suggest an adequate stress response.
The features of CFS and fibromyalgia overlap greatly,4 and these two conditions may well be different presentations of the same illness.4 Cortisol secretion is reduced in both
CFS1,4 and fibromyalgia.4 Adrenal androgen secretion is as impaired in fibromyalgia as in CFS, as shown by reduced serum concentrations of dehydroepiandrosterone sulphate (DHEAS), and this decrease probably contributes to fatigue and pain in fibromyalgia.5 Serum DHEAS constitutes a more sensitive indicator of adrenocortical hypofunction than glucocorticoid secretion. Hydrocortisone at dosages of 20 mg daily (or even less) suppresses adrenal dehydroepiandrosterone secretion.3 These data implicate the beneficial effects of low doses of hydrocortisone in CFS as being attenuated by their suppressant effect on adrenal androgen secretion. The potential role of adrenocortical hypofunction in these often disabling conditions could be examined in a controlled trial of hydrocortisone in combination with DHEA supplementation in patients with CFS or fibromylagia, or both.
*Patrick H Dessein, Edward A Shipton
*Rheumatology Unit, Milpark Hospital, Johannesburg 2109, Republic of South Africa; and Department of Anaesthesiology, Baragwanath Hospital, Pain Relief and Research Unit, University of Witwatersrand, Johannesburg
1 Cleare AJ, Heap E, Malhi GS, Wessely S, O’Keane V, Miell J. Low-dose hydrocortisone in chronic fatigue syndrome: a randomised crossover trial. Lancet 1999; 35 3: 455–58.
2 McKenzie R, O’Fallon A, Dale J, et al. Low- dose hydrocortisone for treatment of chronic fatigue syndrome: results of a placebo controlled study of its efficacy and safety. JAMA 1998; 280: 1061–66.
3 Jefferies WM. Low-dose glucocorticoid therapy: an appraisal of its safety and mode of action in clinical disorders, including rheumatoid arthritis. Arch Intern Med 1967; 119: 265–78.
4 Buchwald D, Fibromyalgia and chronic fatigue syndrome: similarities and differences. Rheum Dis Clin North Am 1996; 22: 219–43.
5 Russell IJ. Neurochemical pathogenesis of fibromyalgia syndrome. J Musculoskeletal Pain 1996; 4: 61–92."

Shell November 5, 2012 at 5:51 am

The place of Hydrocorisone in HPA-axis interests me a lot. Now that my POTS is finally to be investigated it willmost likely be hyperadrenergic pots I am landed with (or combo).
As a kid and teenager I was frequently given IV hydrocortisone in hosptial because of status asthmaticus. I spent a lot of time on antibios and oral prednis due to repeat chest infections.

Even these days I find that once I've kicked the worst of the infection I feel so much better generally when on pred.
But – have all those high steroid doses over the years kicked my HPA into the gutter, or did it help put off the inevitable?

HowToEscape? November 5, 2012 at 8:20 pm

"According to Dr. Joseph Mercola, as many as 80% of American adults may suffer from some degree of adrenal fatigue at some point in their lives."

One should regard anything from Mercola with great caution, or better yet spend your energy elsewhere.

Mercola is famous for
i) combining medical knowledge with quackery ("adrenal fatigue", as discussed in the first post).
ii) campaigning against medicine, except his "special" version
iii) having a practice directed to patients with high disposable income offering expensive water (homeopathy), chiropractic (pt with a side possible spine damage), "emotional freedom technique" and digestive enzymes for pets.
iv) promoting his brand of cure-all herbs and supplements, which are good for everything you might imagine ails you*
Far below, in thinner type, one sees where the asterisk leads: *"This product is not intended to diagnose, treat, cure or prevent any disease."

What kind of doc has a website with branded cure-everything products and a disclaimer?
What kind of doc has an FDA order to stop making false and deceptive statements?

Jody November 5, 2012 at 8:29 pm

HowToEscape?

I can't speak to your concerns about Dr. Mercola. I just know that I have read things in his articles that I have tried personally that made a difference for me.

Mainstream medicine and mainstream news did not carry that information until a few years later. I'm glad I didn't have to wait for that. I started using vitamin D a few years ago for instance, because of something I read only in one of his articles, and several of my most severe symptoms lifted because of this.

Other things are still not supported by conventional medicine, but they work for me and that's what matters most to me.

I have benefitted from chiropractic, finding relief from swelling and pain in arms and shoulders and knees after getting no help anywhere else. Chiropractic got me through a very bad winter last year, returning the use of both arms and hands to me.

A good friend of mine has experienced significant improvement in physical symptoms of ME/CFS from using EFT.

As with so many things related to ME/CFS, not everything is going to work for all of us. But when something works, it's worth talking about and sharing with others in case they might also benefit.

HowToEscape? November 5, 2012 at 10:46 pm
Jody

HowToEscape?

I can't speak to your concerns about Dr. Mercola. I just know that I have read things in his articles that I have tried personally that made a difference for me.

Mainstream medicine and mainstream news did not carry that information until a few years later. I'm glad I didn't have to wait for that. I started using vitamin D a few years ago for instance, because of something I read only in one of his articles, and several of my most severe symptoms lifted because of this.

Other things are still not supported by conventional medicine, but they work for me and that's what matters most to me.

I have benefitted from chiropractic, finding relief from swelling and pain in arms and shoulders and knees after getting no help anywhere else. Chiropractic got me through a very bad winter last year, returning the use of both arms and hands to me.

A good friend of mine has experienced significant improvement in physical symptoms of ME/CFS from using EFT.

As with so many things related to ME/CFS, not everything is going to work for all of us. But when something works, it's worth talking about and sharing with others in case they might also benefit.

-Jody

It's frustrating. A standard MD is often not only useless but harmful for us, so we look elsewhere. There's an entire industry of fake cure-all medicine targeted at people who conventional medicine can't help. So we can end up at slightly out-of-mainstream practitioners who can actually help us or con artists who are quite adept at their art. Not a great situation for folks with a disease which attacks the CNS and curtails cognitive ability.

There are also herbs and "supplements" (drugs), which work for some people some of the time, if only we happen on the right one before too many mishaps. I agree that among these substances some are going to help us; I despise the "miracle cure" push, which amounts to "buy more of my magic pills, you desperate fool".

Vitamin D deficiency does seem to be common with CF/ME folk – mine was low, which makes sense as I am forced to spend too much time indoors. I also used a chiropractor for a while, but now I'm going with massage, perhaps PT and if I recover a bit then Pilates.

"As with so many things related to ME/CFS, not everything is going to work for all of us. But when something works, it’s worth talking about and sharing with others in case they might also benefit."

Agreed, we have no other options. But this is can be misleading, as the disease ebbs and flows.
Example: After resisting for some time, I tried an OTC supplement, SAM-e, at the suggestion of a local CFID group member. The results were dramatic, and I posted to that effect on the group message board. A few months later the effect seems to have disappeared. SAM-e is biologically active, it's a real drug not magic dust, but I can't tell if it's any real help.

Oddly, I've found the same pattern with some prescriptions and vitamins. My GP theorizes that the body is reacting to an unfamiliar substance in a way that makes it a stimulant. Sort of like a fever.

Jody November 6, 2012 at 7:29 am

HowToEscape?

Yeah, it is really frustrating. We are stuck having to find our own paths. I think that means we have to consider everything, even if it's from a source that others don't find credible. Mercola was one of the only places I was hearing about omega-3s way back when. Then my naturopath suggested them. I have found in the last 5 yrs that when I take them my pain level is way down and my brain works better and my mood is less funky. It's all pretty experiential and anecdotal but it's working for me so I lucked out, you know?

That pattern you mentioned of something working for awhile and then quitting is something I remember Cort talking about a few years ago. It used to happen to him all the time. There's a thread somewhere about that. I don't know where or under which topic though.:D

I seem to recall having read something about this type of thing in a research article, again from a few years ago. If that memory returns to my cfs brain, I will post it here.

In Vitro Infidelium November 6, 2012 at 9:05 am
Jody

I can't speak to your concerns about Dr. Mercola. I just know that I have read things in his articles that I have tried personally that made a difference for me.

Is that not to seriously overstate the position ? Is it not more accurate to say about solipsistic anecdotes: "that I have tried personally .. which appeared to make a difference for me ? To do otherwise is to fall into the, "correlation implies causation" fallacy. None of us can ever be sure that our subjective experience of the illness is not affected by our expectations (placebo effect), nor that temporary improvement may spontaneously occur, nor that unconsidered or unrecognised changes in diet, environmental characterisitics or other 'inputs' are material to any improvements in function or sense of well being.

Of course from the perspective of the individual, to keep doing what is coincident with any improvement, makes sense, but extrapolating any broader meaning, or applicability to others will always be highly speculatative.

IVI

Jody November 6, 2012 at 10:36 am

In Vitro Infidelium

I take your point. I could not offer proof that these things are reasons for some of my improvement. Over a period of many years it certainly looks that way to me.

Mark November 6, 2012 at 9:00 pm
In Vitro Infidelium

Is that not to seriously overstate the position ? Is it not more accurate to say about solipsistic anecdotes: "that I have tried personally .. which appeared to make a difference for me ? To do otherwise is to fall into the, "correlation implies causation" fallacy. None of us can ever be sure that our subjective experience of the illness is not affected by our expectations (placebo effect), nor that temporary improvement may spontaneously occur, nor that unconsidered or unrecognised changes in diet, environmental characterisitics or other 'inputs' are material to any improvements in function or sense of well being.

Of course from the perspective of the individual, to keep doing what is coincident with any improvement, makes sense, but extrapolating any broader meaning, or applicability to others will always be highly speculatative.

IVI

In general, I think any reasonable person must accept and be aware of these points. You're right that a great deal of caution should be applied to such observations. But I don't think those principles mean that individual observations should be completely discarded and considered inadmissable evidence either. I don't think those cautions should prevent us from (cautiously and sceptically) experimenting on an individual basis and forming opinions based on our own experiences. Especially in situations where scientific evidence is completely absent, or can't be trusted to be unbiased, this can actually be the most scientific option available to us.

The measures that I have taken – and continue to take – are quite different to those discussed in this article, but to give just one example: I was informed by Biolabs that I had a number of sensitivities, including sensitivity to a family of chemicals found in pretty much all washing up liquids. I was very sceptical indeed about the tests, because my GP didn't trust them and I could tell they were not accepted by the NHS. And I had never stepped into the realm of medicine outside the mainstream before. But I had to try something, and these were the only vaguely credible sources of help and advice I was being offered, so I decided to experiment. I obtained some eco washing up liquid and compared my experience with that. I had already noticed that whenever I did the washing up I got a kind of burning pain in a particular area of my back (below the left shoulder blade). It was so painful that I was hopping around while washing up, and I had to do it in short bursts, for as long as I could bear. I had been experiencing that for a few years, whenever I washed up. I had assumed that was down to difficulty standing and leaning forward, or perhaps some toxin (maybe mold?) in that particular location. But the first time I tried the eco liquid, I didn't have that experience. For the first time in years, I was able to wash up without pain.

But that wasn't good enough for me to be confident that what I had observed was real. There could have been a psychological effect: I was very mindful of that. Because I was hoping for just that result, perhaps I might have deceived myself. Or perhaps it was a one-off. So I decided to alternate between the two, and see what I experienced. The difference was very stark and unmistakeable. Hands in conventional washing up liquid -> pain. Hands in eco liquid -> no problem.

But that still wasn't good enough for me. I could still be deceiving myself. So I decanted the liquids into two separate identical containers, and labelled them on the back where I couldn't see, and shuffled them blind each time I used them. I was still easily able to tell the difference, from my experience of the pain I felt when washing up, and I was able to predict and confirm which one I'd just been using.

And even then, I was still aware that this was not a test meeting scientific standards. I would need a second person to mix up and blind the samples for me, and monitor what I was experiencing. I didn't consider this a rigorous scientific test. But I was living alone and didn't have access to anyone who could help in this way. So I just stuck with the eco liquid, since it couldn't really hurt to make this choice.

That was several years ago, and I still use the eco liquid. It's actually much better value for money anyway – a big vat of it (refilled from a tank in the shop) lasts me nearly a year, and it cleans very effectively. And that particular back pain is now a thing of the past. I used to get it from a few other triggers as well (all of them linked to similar synthetic chemicals), but I've eliminated those triggers too, in a similarly slow, sceptical and questioning fashion. It's been a slow and gradual process over many years, with occasional recurrences. Last year I felt a strong recurrence of the pain (which shocked me because I'd completely forgotten about it) when I was holding a glossy book in a bookstore, which began to subside when I put the book back on the shelf, but that's the only time I've felt that particular pain in the last couple of years.

I'm still fairly tentative in my conclusions. I'm not sure exactly what's going on here. I know it's not just back pain because I've had years of other treatments for back pain, and still do, and this is quite different. But what it really is, I don't know. With other, similar pains, I've sometimes misunderstood the trigger. For example, I used to think that perfumes were a major problem, but now I realise that many other strong smells can also make me feel dizzy, nauseous and give me headaches. I try not to be dogmatic about my conclusions, and I aim to be as scientific as I can in my personal experimentation and observations. I don't expect my findings to be generalisable to everyone, but I do believe they may be useful for some people, so I offer them for free with lots of qualification. But many of these experiences, over decades, have been very stark, and very hard indeed to dispute: over years, certain results have been consistent, and for me at least that does count as evidence. For me, personally, it is a kind of scientific evidence that applies to me. It's very weak, as scientific evidence, but it's also very real for me. It's certainly infinitely better than any other approach on offer to me: conventional medicine just says "I don't know".

I think that personal approach, if the individual is cautious and sceptical and observes effects very carefully, is a valid one. I think that, when the question is something like the possibility of individual sensitivities to synthetic chemicals, the absence of any scientific authority who can be relied upon to produce unbiased scientific evidence (given that so much science is now funded by industrial interests), and the skewing of science overall by those industrial interests, means that – sadly – personal experimentation (informed by suggestions from people we trust who have similar untreated problems) is often the most rational and scientific option available to us.

jace November 7, 2012 at 3:46 am

I think that personal approach, if the individual is cautious and sceptical and observes effects very carefully, is a valid one. I think that, when the question is something like the possibility of individual sensitivities to synthetic chemicals, the absence of any scientific authority who can be relied upon to produce unbiased scientific evidence (given that so much science is now funded by industrial interests), and the skewing of science overall by those industrial interests, means that – sadly – personal experimentation (informed by suggestions from people we trust who have similar untreated problems) is often the most rational and scientific option available to us.

Indeed. For many of us it is the only road open. Love your care with analysing the washing up liquid effect, Mark. I have been taking a rainforest adaptogenic herb, Cats Claw. One time, I stopped taking it for a while to see what happened (one can get fed up with all the pills), another time I bought a cheaper version, a third time I plain forgot and ran out. On each of these three occasions, a rash appeared on my hand – I also felt a lot worse, but that's definitely subjective…

[​IMG]

Within three days of restarting the Cats Claw it subsided, each time. But, it's just another anecdote. What else do we have? Learned scientific studies, like PACE?

In Vitro Infidelium November 7, 2012 at 12:18 pm
Mark

In general, I think any reasonable person must accept and be aware of these points. You're right that a great deal of caution should be applied to such observations. But I don't think those principles mean that individual observations should be completely discarded and considered inadmissable evidence either. I don't think those cautions should prevent us from (cautiously and sceptically) experimenting on an individual basis and forming opinions based on our own experiences.

I don’t disagree with that at all, in fact were I to find something as simple as changing washing up liquid was of some benefit, no matter how unlikely I wouldn’t concern myself with need for proof or justification, given that the consequence of any change would be unlikely to have potential unrecognised negative impacts.

However there is a different set of concerns in relation to Jody’s article which actually go beyond the article because they have a fairly long history in discussions about M.E/CFS. The process has tended be – a general assertion is made about the aetiology of the illness, usually in terms (as here) of some kind of hypothesis, where the source for the assertion is of uncertain science (as here – Mercola). The person offering the hypothesis then validates the source by referencing their solipsistic experience. Many of these types of hypothesis are then subsequently ‘voiced back’ as though there were definitive science that supported them. Of course that simply is not the case, because solipsistic experience can not validate a scientific position.

Mark

Especially in situations where scientific evidence is completely absent, or can't be trusted to be unbiased, this can actually be the most scientific option available to us.

I think I know what you mean, but I can’t accept the split infinitive – something either is or is not scientific. Coming up with subjective orders of ‘scientificality’ where part of the reference is to solipsistic experience just takes us down a route that seems to me to have no sound meaning. Which is a difficulty where someone is proposing a hypothesis of scientific validity – which really then just becomes story telling. The story may be ‘plausible’ in terms of shared solipsistic experience but that is not science. People may choose to inform their own approach to the illness on the basis of such storytelling, and this may be the only thing available to inform individual actions, but describing this as science only further confuses a deeply confused situation.

IVI

Little Bluestem November 7, 2012 at 3:14 pm

jace, anecdotal evidence is good enough for me. What brand of cat’s claw have you has success with?

P.S. Yes, IVI, I know that a sentence should not end with a preposition, but this has become so common that correct usage sounds stuffy.

Mark November 7, 2012 at 7:57 pm
In Vitro Infidelium

However there is a different set of concerns in relation to Jody’s article which actually go beyond the article because they have a fairly long history in discussions about M.E/CFS. The process has tended be – a general assertion is made about the aetiology of the illness, usually in terms (as here) of some kind of hypothesis, where the source for the assertion is of uncertain science (as here – Mercola). The person offering the hypothesis then validates the source by referencing their solipsistic experience. Many of these types of hypothesis are then subsequently ‘voiced back’ as though there were definitive science that supported them. Of course that simply is not the case, because solipsistic experience can not validate a scientific position.

You describe here a pattern you perceive in the history of many discussions about ME/CFS. Obviously you have a concern, predating this particular article, about that pattern. But is it really fair to say that Jody's article fits that pattern you describe?

Firstly, the article begins by acknowledging that there are conflicting opinions and controversy about the subject, and that the paradigm which is presented is just one of a number of paradigms, and one which has helped many people. That seems to me to give a reasonable context and provide some balance: there is no attempt here to mislead or pretend that this is the accepted scientific view

The article then describes the paradigm presented, and it does quote Mercola and Myhill's views. Yes, the hypothesis is one of uncertain science, as you describe – but that has been acknowledged, which I suspect is not typical of the pattern you would rightly criticise.

Next in your pattern is reference to "solipsistic experience". But in fact, there is no such reference in this article. Jody and others do mention their personal experiences later in the thread, but they do so in the context of a general discussion in which those with opposing views and experiences also share those experiences freely. There doesn't seem to be a strong attempt here to 'validate the source', or indeed the hypothesis or paradigm, but merely the sharing of an experience that says "in practice, this worked for me, but your mileage may vary".

And I must take issue with your use of the phrase "solipsistic experience" here. Solipsism refers to "The theory that the self is the only thing that can be known and verified" or "The theory or view that the self is the only reality". It's an extreme philosophical position, and doesn't seem at all appropriate as a dismissal of a person sharing their own personal experience with others. The simple description "personal experience" seems more appropriate and a more balanced description. The inappropriate use of the phrase "solipsistic experience" suggests to me a rather extreme characterisation of the concept of "personal experience" or "individual experience", perhaps as a rhetorical tactic to devalue such personal experience.

Next in your pattern is that the hypotheses are "‘voiced back’ as though there were definitive science that supported them". Again, I see no evidence that this has occurred in this article, nor in the following open discussion. It has been acknowledged from the outset that this hypothesis is not supported by definitive science, and it hasn't later been implied that it is.

So: while the pattern that you describe would indeed be a problematic one, I think it's something of a strawman argument when applied to this article, and to this discussion. This article and discussion just don't seem to fit the pattern that you're concerned about.

Having said all that, I am concerned that when Phoenix Rising publishes articles covering contentious or 'alternative' themes, we must take great care to do so in a responsible and honest way, and must be careful not to mislead people or to state things as facts which are not facts. So I value your presence here to critique and debate such articles, and any suggestions about how such articles might be improved in future will be welcome.

I think I know what you mean, but I can’t accept the split infinitive – something either is or is not scientific. Coming up with subjective orders of ‘scientificality’ where part of the reference is to solipsistic experience just takes us down a route that seems to me to have no sound meaning. Which is a difficulty where someone is proposing a hypothesis of scientific validity – which really then just becomes story telling. The story may be ‘plausible’ in terms of shared solipsistic experience but that is not science. People may choose to inform their own approach to the illness on the basis of such storytelling, and this may be the only thing available to inform individual actions, but describing this as science only further confuses a deeply confused situation.

I'm afraid this point could spark a quite deep conversation about the philosophy of science, which while it would be most interesting to me, is just the kind of thing that sadly I don't have enough spare time for these days. :(

Without having time to think about it ever so deeply, I think I would say (following wikipedia somewhat) that the word "scientific" to me implies a systematic attempt to build and organise knowledge in the form of testable explanations and predictions about reality. Given that definition, I personally think it is reasonable to say that an individual who forms hypotheses, makes predictions, tests them, and then continues to reason about the results and test further, is behaving, to at least some extent, in a scientific fashion.

For example, in my example about the washing up liquid, I did my best to test the hypothesis that using the eco washing up liquid removed the burning pain in my back that I was suffering from with the regular washing up liquid. I tested predictions about that, using the best of my abilities as an individual, and used my reason and scepticism to restrain the conclusions I drew – I did not conclude, for example, that everything the MCS doctors had told me was true, but I did take it as evidence that some of what they had told me was at least helpful to me as an individual, and might therefore be helpful to others too. My own experience was just one piece of evidence that confirmed the hypotheses of those doctors, but I would not expect it to be taken as evidence by others that these hypotheses were scientifically validated – that would require far more systematic study and far more evidence.

I think all of that was reasonably "scientific" behaviour on my part – I was led by reason, testing, and observation – but I would not dream of claiming that this was "as scientific" as a team of people systematically testing my experience blinded, recording the experiences in a rigorous way, and documenting their findings.

And I'm sure we can agree that any given scientific experiment, or any group of people experimenting in a given area, may make errors, may fail to control for some significant variable, or may misinterpret the conclusions of their own research. Research like the PACE trial, for example, may claim to be scientific, and in a sense it has some claim to be "scientific", but the methodology, the raw data hidden from public view, the transparently biased interpretation of the results and their politically-motivated presentation to the press and public, all suggest to me that it can reasonably be asserted that this work was very much "less scientific" than the experiments using the Large Hadron Colliider.

So I'm not sure I can understand or accept the 'black and white' categorisation that something either "is or is not scientific". I have a suspicion that this categorisation you're arguing for will boil down – if analysed – to a distinction that makes reference to institutions and to political structures of validation and authority, as the sanction for what can claim to be "scientific" or not, which philosophically I doubt I could accept. It seems to me that it's the activity of hypothesising, predicting, and testing that defines "scientific" behaviour, and if my own experiments to draw conclusions about my personal experience of my environment can't be defined as "somewhat scientific" or "weakly scientific" as I would prefer, and if they are either "scientific" or not, then I'd have to argue that they are "scientific".

As for the split infinitive, I could never complain about a fellow grammar pedant for pointing it out, but I do break the odd rule here and there for readability purposes. And I even start sentence with words I'm not supposed to, because I think it's fun to do so. :) But anyway, I'm concerned now that we are starting to take this thread off-topic, which wouldn't be fair to Jody or to our readers, so I hope the discussion returns to Adrenal Fatigue itself. I doubt I'll have time to write further on this subject, much as I'd like to, but if this 'philosophy of science' discussion does continue, perhaps someone can report and propose a spin-off thread?

jace November 8, 2012 at 11:24 am
Little Bluestem

jace, anecdotal evidence is good enough for me. What brand of cat’s claw have you has success with?

I'm in the UK, and I started with the Rio Trading Cats Claw – 500mg 3/day. I now save money by capping my own, using powder from Baldwins, which has cut the cost to 20% of the ready made version. Baldwins' search engine is hopeless – best to use Google.

barbc56 November 8, 2012 at 6:33 pm

I could write a book about so many of the issues brought up in this thread but at the moment I just don't have the energy. However, I do want to make a couple of points.

It's just as likely that withdrawal from a supplement causes a rash as the likelihood of that supplement being beneficial. In other words, we just don't know what is going on when it comes to anecdotal evidence, which highlights why it's important to go up the hierarchy of scientific credibility.

What really disturbs me about articles like this is that people might start self medicating or delaying getting appropriate medical attention. Some of these supplements do indeed stimulate the adrenal glands but like methamphetamines/speed/ steroids this causes more long time risks for your health than benefits. Check out:

http://skepticsonthe.net/whats-the-harm/

Lest I be accused of picking on you Mark, something like avoiding a type of laundry detergent is not on the same level of playing around with supplements and/or attributing what might or might not be going on with our illness without some type of credible scientific logic.

If you suspect something might be going on with your adrenals, ask your doctor for a referral to an Endocrinologist. They have years and years of specialized training far beyond medical school. They know the appropriate tests and would most likely be able to give you the most appropriate diagnosis as well as treatment if a treatment is indeed deemed necessary.

Barb C.:>)

Mark November 8, 2012 at 7:23 pm
barbc56

Lest I be accused of picking on you Mark, something like avoiding a type of laundry detergent is not on the same level of playing around with supplements and/or attributing what might or might not be going on with our illness without some type of credible scientific logic.

If you suspect something might be going on with your adrenals, ask your doctor for a referral to an Endocrinologist. They have years and years of specialized training far beyond medical school. They know the appropriate tests and would most likely be able to give you the most appropriate diagnosis as well as treatment if a treatment is indeed deemed necessary.

Barb C.:>)

No problem at all Barb, I've replied to your own posts quite often enough for you to be excused if you did pick on me:) , and you make a very fair and important point. Self-experimentation is clearly more risky with supplements, powerful herbs, or drugs than it is with avoidance of potentially harmful environmental factors. The more powerful the drug, the greater the risk – and perhaps also the greater the theoretical potential for benefit, up to a point (if something definitely can't harm you, it follows that it definitely can't help either). I don't see any particular difference in this particular respect between pharmaceutical drugs, herbs or supplements, by the way. In every case, if they are so bio-active that there is a potential for benefit, then there must also be a potential for harm. I think there's a validity – again up to a point – for distinguishing between 'natural' and 'synthetic' solutions, but there are pros and cons on both sides.

So I think it is right to caution about the risks, and I would agree that an appointment with a trained endocrinologist would be the most sensible first port of call if following this hypothesis. Having said that, I think it's also an individual right to make informed personal choices and to experiment individually, and I also think that the points I made about the potentially-somewhat-scientific nature of individual experimentation remain as valid for herbs and supplements as they are for washing up liquid.

I'm glad that you appear to support my concept of a 'hierarchy of scientific credibility'. In relation to that point I should add that the experimentation of a physician (or indeed any practitioner) with treatments for patients – over the course of a career – is a big potential step up that hierarchy. So long as the practitioner is open-mindedly, rigorously and objectively hypothesising, experimenting and observing, together with the patients (and openly), then that is also scientific behaviour, and for the patient, the involvement of an independent observer makes the process 'more scientific'.

Of course, there are significant ethical concerns that come in, in any such situation of self-experimentation or experimentation by a physician. That deserves some serious analysis, but I'll just make a couple of quick points.

Firstly: if the physician or therapist is doing anything at all, beyond a merely computerised task, and if their experience counts for anything, then they are always experimenting to some extent, and learning from their experience. So I'd argue that this is a question of degree, not black and white, because the situation of 'patient as experimental subject' is always present to some degree.

Secondly: there is a very real issue of the individual's right to be make decisions over treatment, and the important thing is that those should be informed choices: they should be fully aware of just how 'experimental' any given approach is, and what the potential risks may be, and should have information from a range of sources so they can make up their own mind.

Finally, and crucially for us: there are many of us who are in situations where the justification for the decision to experiment is considerable, especially in situations where we feel we have "nothing left to lose" due to age or severity of illness – and this situation is very much driven by the apparent indifference of mainstream medicine to our plight. This does of course also entail vulnerability, so it's especially important that practitioners and advisers should always issue appropriate caveats and ensure that patients are aware when a treatment is controversial, disputed, potentially risky or somewhat experimental. But I do believe that these informational issues are the key to the ethical issues, and that ultimately individual choice is worth preserving.

For those reasons, we've tried to enshrine appropriate cautions in our forum rules, in the form of the 'medical advice' rule particularly, and it will remain a guiding principle of Phoenix Rising to be similarly responsible in our articles and the related discussion threads. Accurate and reliable information, together with an openness to discussing a wide range of approaches from a wide range of perspectives, are key founding principles and they will remain guiding principles for the organisation. If we ever do fail to issue necessary or appropriate cautions, I'm sure there will always be plenty of people to highlight such failures and we'll always be open to correcting any mistakes we make.

heapsreal November 8, 2012 at 8:14 pm

medicine has failed many of us which is why many self treat. A specialist like an endocrinologist wont treat someone unless they have obvious clinical testing that shows abnormalities. Reference ranges are so wide that test results can show u testing in the so called normal range but in fact u do have a dysfunction going on but these so called specialist wont treat u and say nothing is wrong with you, but u probably get a script for an antidepressant. Very few good docs and many docs have their hands tied due to the health system not allowing them to treat patients with dysfunctions unless obvious. There is a big gap between preventative medicine and actual obvious illnesses, so basically u wont get treated until its too late??

GracieJ November 8, 2012 at 8:23 pm

What on earth has happened to using common sense in observing clinical evidence?

Especially in light of the growing prevalence of abnormal norms.

We all have eyes, ears, brains, the power of observation.

heapsreal November 8, 2012 at 8:25 pm
GracieJ

What on earth has happened to observing common sense clinical evidence?

Especially in light of the growing prevalence of abnormal norms.

doesnt exist, although the psychobabblers will put it down to a bad childhood.

barbc56 November 8, 2012 at 8:26 pm

I am not talking about taking away any individuals rights but Caveat emptor (let the buyer beware). I am not saying that all sides of a discussions should not be written about.

Experimenting withing scientifically validated information by doctors is called individualization and is in no way comparable to an individual who may be self medicating or self diagnosing.
I can't write too much more as I am having computer issues, one of which is my enter button just stopped working along with font issues.
I will come back later to address some of your responses. I wish I had the energy and wherewithal to write a blog here addressing why I believe in Science Based Medicine but wonder if it would be approved. Maybe I could collaborate with others?

Barb C.:>)

Hip November 8, 2012 at 10:38 pm

As is well known, enteroviruses (specifically Coxsackie B viruses and echoviruses) have been strongly linked to ME/CFS. Now interestingly, echoviruses are able to infect the adrenal glands.

I have always thought that an echovirus infection of the adrenal glands might well damage or disrupt the adrenals enough to cause hormonal deficits or dysfunctions. An echovirus infection might damage the hormone producing cells in the adrenals, either directly, or by indirect autoimmune mechanisms, thus leading to hormonal deficits or dysfunctions.

Hormonal deficits precipitated by echovirus infection of the adrenals might be analogous to the enterovirus model of type 1 diabetes, in which it is believed that a coxsackievirus B4 infection of the pancreas may destroy the insulin producing beta cells (reference: 1).

I doubt if any researchers have conducted studies that biopsy the adrenals in ME/CFS patients to see whether they harbor a chronic low-level echovirus infection, but a study like this might be a worthwhile undertaking.

Hip November 8, 2012 at 11:03 pm
In Vitro Infidelium

None of us can ever be sure that our subjective experience of the illness is not affected by our expectations (placebo effect), nor that temporary improvement may spontaneously occur, nor that unconsidered or unrecognised changes in diet, environmental characterisitics or other 'inputs' are material to any improvements in function or sense of well being.

Of course from the perspective of the individual, to keep doing what is coincident with any improvement, makes sense, but extrapolating any broader meaning, or applicability to others will always be highly speculatative.

IVI

In fact there is a lot that an individual can do to make their self observations more rigorous and scientific. Sure, the first time you get an improvement using a drug or supplement treatment, it might be just a coincidence, or might in fact be due to the other factors you mention, such as a change diet that you just happened to commence at the same.

However, the first thing I do when I note some improvements is stop the drug or supplement after a few weeks or months, to see if the benefits wear off, and if they do, then restart again to see if the benefits again reappear. If you repeat this several times with consistent beneficial results, you can start to become confident that it is indeed the drug or supplement that your are taking that brings improvements in symptoms, and not coincidence or some other factor.

The placebo effect is always a problem in scientific testing, but one thing that tends to control for the placebo effect is personally testing multiple supplements and drugs (at different times of course), as most people with ME/CFS tend to do anyway. How can this control for the placebo effect? Well presumably the placebo effect will be the same for each supplement and drug you test; so if only one or two of the many supplements and drugs you test bring noticeable benefits, but the others do not, you can be sure it is not the placebo effect, because clearly this benefit must obviously be over and above any placebo effect, which would be equally present for all supplements and drugs you tested. So in this way, you can quite easily control for and eliminate the placebo effect from your self-testing results.

So personal supplement and drug testing can indeed be rigorous and scientific, if you make the effort to verify you results by repeated testing, and by testing multiple supplements and drugs to control for any placebo effect.

barbc56 November 9, 2012 at 6:25 am

medicine has failed many of us which is why many self treat. A specialist like an endocrinologist wont treat someone unless they have obvious clinical testing that shows abnormalities.

(my bold)

Hmmmmm, if my tests are normal, I certainly don't want to be treated as if they weren't. The norms for a test are determined by a complicated scientific process. New scientific evidence is considered which may show a need for a change in the reference range of a test. Doctors may also go by relative changes in your test results. For instance, some people might test in the lower range of normal and at that point the doctor needs to keep a check to see if your level is dropping or if that is your "normal" range. Of course this is a simplistic example as there are even more factors that go into making a diagnosis using the input of blood tests and symptoms.

So personal supplement and drug testing can indeed be rigorous and scientific, if you make the effort to verify you results by repeated testing, and by testing multiple supplements and drugs to control for any placebo effect.

If I take uppers, they will give me more energy. When I stop taking them I have less energy. I can change the methodology of testing this a myriad of ways and still come up with the same results. However this does not address other issues such as risks vs. harm nor does it consider medical information about how our bodies work. You need these pieces and more to put together the puzzle of what is happening when you take these supplements.

Barb C.:>)

In Vitro Infidelium November 9, 2012 at 8:42 am
Mark

You describe here a pattern you perceive in the history of many discussions about ME/CFS. Obviously you have a concern, predating this particular article, about that pattern. But is it really fair to say that Jody's article fits that pattern you describe? Firstly, the article begins by acknowledging that there are conflicting opinions and controversy about the subject, and that the paradigm which is presented is just one of a number of paradigms, and one which has helped many people. That seems to me to give a reasonable context and provide some balance: there is no attempt here to mislead or pretend that this is the accepted scientific view.

The article fits the pattern because when a source was criticised, the author invoked solipsistic authority as validation of the source. The article isn’t a first person testimony in which solipsistic authority would stand as validation of itself, it’s an hypothesis (published as a PR front page article !) which proposes a scientific reality. Science (and the processes of reasoning which underly science) doesn’t command fairness but harsh rigour – I’m not being nasty to Jody, I’m just arguing for the use of rigorous logic when hypotheses about M.E/CFS are being advanced. Claims that “the paradigm …………….. is just one of a number of paradigms, and one which has helped many people" (who helped where ?) when advanced without supporting evidence, stand only as anecdote supported by implied crowd sourcing. Multiple solipsistic testimonies are still just solipsisms.

Mark

The article then describes the paradigm presented, and it does quote Mercola and Myhill's views. Yes, the hypothesis is one of uncertain science, as you describe – but that has been acknowledged, which I suspect is not typical of the pattern you would rightly criticise.

It’s not the ‘uncertainty’, it’s the lack of validity, that is the problem. Multiple rigorous studies may still only provide results that do not provide certainty – this is very different from the inadequacies of Mercola and Myhill, though I recognise that conflation of ‘uncertain science’ with ‘lack of validity’ is frequently used for arguments of equivalence. Those arguments are wrong.

Mark

Next in your pattern is reference to "solipsistic experience". But in fact, there is no such reference in this article. Jody and others do mention their personal experiences later in the thread, but they do so in the context of a general discussion in which those with opposing views and experiences also share those experiences freely. There doesn't seem to be a strong attempt here to 'validate the source', or indeed the hypothesis or paradigm, but merely the sharing of an experience that says "in practice, this worked for me, but your mileage may vary".

Well of course there’s no reference in the article because it doesn’t concern itself with validation of the sources. It’s only in the discussion when someone has questioned the validity of Mercola, that the validation by solipsistic authority has been given. Jody could have sought some other validation but didn’t either because it doesn’t exist or at least isn’t available – which is where my questioning came in, and in answer to which Jody ackowledged the limitations involved.

Mark

And I must take issue with your use of the phrase "solipsistic experience" here. Solipsism refers to "The theory that the self is the only thing that can be known and verified" or "The theory or view that the self is the only reality". It's an extreme philosophical position, and doesn't seem at all appropriate as a dismissal of a person sharing their own personal experience with others. The simple description "personal experience" seems more appropriate and a more balanced description. The inappropriate use of the phrase "solipsistic experience" suggests to me a rather extreme characterisation of the concept of "personal experience" or "individual experience", perhaps as a rhetorical tactic to devalue such personal experience.

Hmm – tedious little ad hominem thrown in there. I’ll answer it but I think it’s evidence this exchange has reached any useful limit. “Personal experience” is simply too imprecise to allow identification of the problem, which is why I deliberately used ‘solipsistic’. The issue is about validation – no individual has to justify to anyone else (at least not outside their immediate real world relationships) the choices they make regarding their own health – but that is not what is in question. What we have here is a purported process of presentation and argumentation that is apparently geared toward a reasoned outcome – in this case an informative hypothesis of illness causation. Either there are processes of validating references that are accepted as scientific – published peer review etc or we have anecdote.

Personal health anecdote – what ‘I’ observe about ‘my’ body from inside the experience of that body is unequivocally and utterly unavoidably ‘solipsistic’. I have the distinct feeling that someone will raise the self infection experiments of Marshal and Morris as support for ‘personal experience’ – lets be absolutely clear, those researchers used external references – knowledge of the organism, definitive testing etc, to raise their process of hypothesis formation far beyond any experiential validation by solipsistic reference.

There may be a useful role for the ‘expert patient’, but the usefulness will be entirely dependent not upon expressed solipsistic experience, but upon the capacity of the ‘expert’ to reference their illness experience to external sources which are demonstrable and communicable to sceptical audiences. Relyingsolely on solipsistic references produces not reasoned proposition, but story telling – the stories may be very attractive but that will never be science and they will frequently be sources of confusion if seen as anything other than what they are.

IVI

In Vitro Infidelium November 9, 2012 at 8:49 am
Hip

So personal supplement and drug testing can indeed be rigorous and scientific, if you make the effort to verify you results by repeated testing, and by testing multiple supplements and drugs to control for any placebo effect.

That profoundly understates the extent of the placebo effect. No individual can exclude the placebo effect – it will not matter how much testing you do – the individual will always be self referencing and therefore incapable of responding disinterestedly to the accumulating data. People are free to experiment upon themselves, but no one should be under the illusion that such experiment will have meaning beyond that one mind/body.

IVI

heapsreal November 9, 2012 at 2:17 pm

barb, the link to the video explains why normal lab values arent normal. Apparently normal lab values are selected from a wide range of ages as well as a wide range of people with different health issues, lab ranges arent picked from healthy people and definately arent correlated with age for many labs. So low normal lab value could be normal for a 70 y/o with underlying health issues, so the normal lab values are far from perfect. If u watch the video link it explains how they tighten the lab reference ranges to optimise health, there is a big grey area between healthy and disease, why wait to get to the disease end to treat it if it can be prevented. once again watch the video for a better explanation of what im trying to get at.

HowToEscape? November 9, 2012 at 11:34 pm
In Vitro Infidelium
Mark

You describe here a pattern you perceive in the history of many discussions about ME/CFS. Obviously you have a concern, predating this particular article, about that pattern. But is it really fair to say that Jody's article fits that pattern you describe? Firstly, the article begins by acknowledging that there are conflicting opinions and controversy about the subject, and that the paradigm which is presented is just one of a number of paradigms, and one which has helped many people. That seems to me to give a reasonable context and provide some balance: there is no attempt here to mislead or pretend that this is the accepted scientific view.

The article fits the pattern because when a source was criticised, the author invoked solipsistic authority as validation of the source. The article isn’t a first person testimony in which solipsistic authority would stand as validation of itself, it’s an hypothesis (published as a PR front page article !) which proposes a scientific reality. Science (and the processes of reasoning which underly science) doesn’t command fairness but harsh rigour – I’m not being nasty to Jody, I’m just arguing for the use of rigorous logic when hypotheses about M.E/CFS are being advanced. Claims that “the paradigm …………….. is just one of a number of paradigms, and one which has helped many people" (who helped where ?) when advanced without supporting evidence, stand only as anecdote supported by implied crowd sourcing. Multiple solipsistic testimonies are still just solipsisms.

Mark

The article then describes the paradigm presented, and it does quote Mercola and Myhill's views. Yes, the hypothesis is one of uncertain science, as you describe – but that has been acknowledged, which I suspect is not typical of the pattern you would rightly criticise.

It’s not the ‘uncertainty’, it’s the lack of validity, that is the problem. Multiple rigorous studies may still only provide results that do not provide certainty – this is very different from the inadequacies of Mercola and Myhill, though I recognise that conflation of ‘uncertain science’ with ‘lack of validity’ is frequently used for arguments of equivalence. Those arguments are wrong.

Mark

Next in your pattern is reference to "solipsistic experience". But in fact, there is no such reference in this article. Jody and others do mention their personal experiences later in the thread, but they do so in the context of a general discussion in which those with opposing views and experiences also share those experiences freely. There doesn't seem to be a strong attempt here to 'validate the source', or indeed the hypothesis or paradigm, but merely the sharing of an experience that says "in practice, this worked for me, but your mileage may vary".

Well of course there’s no reference in the article because it doesn’t concern itself with validation of the sources. It’s only in the discussion when someone has questioned the validity of Mercola, that the validation by solipsistic authority has been given. Jody could have sought some other validation but didn’t either because it doesn’t exist or at least isn’t available – which is where my questioning came in, and in answer to which Jody ackowledged the limitations involved.

Mark

And I must take issue with your use of the phrase "solipsistic experience" here. Solipsism refers to "The theory that the self is the only thing that can be known and verified" or "The theory or view that the self is the only reality". It's an extreme philosophical position, and doesn't seem at all appropriate as a dismissal of a person sharing their own personal experience with others. The simple description "personal experience" seems more appropriate and a more balanced description. The inappropriate use of the phrase "solipsistic experience" suggests to me a rather extreme characterisation of the concept of "personal experience" or "individual experience", perhaps as a rhetorical tactic to devalue such personal experience.

Hmm – tedious little ad hominem thrown in there. I’ll answer it but I think it’s evidence this exchange has reached any useful limit. “Personal experience” is simply too imprecise to allow identification of the problem, which is why I deliberately used ‘solipsistic’. The issue is about validation – no individual has to justify to anyone else (at least not outside their immediate real world relationships) the choices they make regarding their own health – but that is not what is in question. What we have here is a purported process of presentation and argumentation that is apparently geared toward a reasoned outcome – in this case an informative hypothesis of illness causation. Either there are processes of validating references that are accepted as scientific – published peer review etc or we have anecdote.

Personal health anecdote – what ‘I’ observe about ‘my’ body from inside the experience of that body is unequivocally and utterly unavoidably ‘solipsistic’. I have the distinct feeling that someone will raise the self infection experiments of Marshal and Morris as support for ‘personal experience’ – lets be absolutely clear, those researchers used external references – knowledge of the organism, definitive testing etc, to raise their process of hypothesis formation far beyond any experiential validation by solipsistic reference.

There may be a useful role for the ‘expert patient’, but the usefulness will be entirely dependent not upon expressed solipsistic experience, but upon the capacity of the ‘expert’ to reference their illness experience to external sources which are demonstrable and communicable to sceptical audiences. Relyingsolely on solipsistic references produces not reasoned proposition, but story telling – the stories may be very attractive but that will never be science and they will frequently be sources of confusion if seen as anything other than what they are.

IVI

"but story telling – the stories may be very attractive but that will never be science and they will frequently be sources of confusion"

Story telling can take you places.
Worked for Ronald Reagan.

Mark November 10, 2012 at 12:06 am
In Vitro Infidelium

Hmm – tedious little ad hominem thrown in there. I’ll answer it but I think it’s evidence this exchange has reached any useful limit. “Personal experience” is simply too imprecise to allow identification of the problem, which is why I deliberately used ‘solipsistic’. The issue is about validation – no individual has to justify to anyone else (at least not outside their immediate real world relationships) the choices they make regarding their own health – but that is not what is in question. What we have here is a purported process of presentation and argumentation that is apparently geared toward a reasoned outcome – in this case an informative hypothesis of illness causation. Either there are processes of validating references that are accepted as scientific – published peer review etc or we have anecdote.

Personal health anecdote – what ‘I’ observe about ‘my’ body from inside the experience of that body is unequivocally and utterly unavoidably ‘solipsistic’. I have the distinct feeling that someone will raise the self infection experiments of Marshal and Morris as support for ‘personal experience’ – lets be absolutely clear, those researchers used external references – knowledge of the organism, definitive testing etc, to raise their process of hypothesis formation far beyond any experiential validation by solipsistic reference.

There may be a useful role for the ‘expert patient’, but the usefulness will be entirely dependent not upon expressed solipsistic experience, but upon the capacity of the ‘expert’ to reference their illness experience to external sources which are demonstrable and communicable to sceptical audiences. Relyingsolely on solipsistic references produces not reasoned proposition, but story telling – the stories may be very attractive but that will never be science and they will frequently be sources of confusion if seen as anything other than what they are.

IVI, you make a very strong argument indeed and I accept much of what you say. That includes your highlighting of an unintentional ad hominem of mine; given your clarification of the sense in which you describe this kind of description of personal experience as 'solipsistic' (with a real stretch I can now begin to understand what you mean by using that word here, even if I can't accept it as appropriate), I'll withdraw the 'rhetorical tactic' part of that sentence, and I apologise. You're right: I got carried away there. 'Tactic' was unfair.

However, although I accept the validity of the points you have made, I still think that when you use words like "solipsistic" and "story-telling", they very much over-emphasise those valid points – yes, in a rhetorical sense – because they tend to devalue that "story-telling" and unfairly characterise the "story-teller" as "solipsistic". The effect of that language (intended or not) is to suggest that the activity of "story-telling" is quite worthless because only "science" has any value at all, and to imply that the "solipsist" relating their experience cannot also see beyond that experience and put it in context.

"Story-telling" feels belittling, "experience-sharing" doesn't. "Solipsistic experience" suggests a dogmatic and individualistic disinterest in anything beyond the individual's own experience, "individual experience" or "personal experience" is more straightforwardly accurate and less loaded.

Again: solipsism is "The theory that the self is the only thing that can be known and verified" or "The theory or view that the self is the only reality". It's an extreme philosophical position, and when people share stories about their experiences with each other, they are not asserting that extreme position at all. By sharing stories, they are neither asserting that nobody else's existence is verifiable, nor that their sharing of stories is 'science', nor that they have 'proved' the hypothesis that seems to be supported by their experience, and they are not saying that the hypothesis couldn't be better known or verified by scientific research. You are quite right that people will tend to (often quite dramatically) overstate the value of the evidence they are sharing, but wrong in my opinion to assume that they are incapable of recognising the limitations of this activity.

As I see it, where we differ is that I do not believe that the quite valid cautions you have rightly pointed out mean that the 'story-telling' activity is worthless. As a vehicle for the pursuit of verified truth, it is indeed very strictly limited as you have described, but I see this quite natural human activity of sharing experience as a complementary process to the scientific pursuit of truth.

To illustrate the point: If, in a discussion like this one, we find that an overwhelming majority of the participants pop up to describe extremely positive experiences, and if then a large number of forum members experiment 'solipsistically' and report success, then yes, we should still be very cautious and note that there is a high degree of self-selection involved in that group, and we should apply our critical faculties and refrain from describing this as if it were as solid a result as a rigorous scientific evaluation, but neither should we dismiss our findings outright. I believe we are quite right to be more interested in such a scenario than in another scenario where few report benefit and those who experiment report their disappointment. I also believe that the knowledge we build up about each other as individuals gives us very useful additional clues that put the findings in context and gives them – and the process – more value to us than may be perceived from outside.

If we do find that some such approach gives overwhelming results, then the next step is to say: maybe this is something worth testing scientifically. We should of course be cautious again at this point not to assume that the original hypothesis is necessarily what should be tested: the apparently-successful treatments themselves are what our shared experience is pointing at, but if large numbers of people begin reporting positive results for a given approach there is at least a valid source there that suggests something worth exploring.

In other words: I do believe that the sharing of human experiences between humans has value. I have 'solipsistic' confirmation of this too since the treatment that helped me dramatically came from personal recommendation, from someone whose balance and objectivity I greatly respect, and he in turn got his recommendation by word of mouth. I do also accept that this 'knowledge source' falls well short of the potential power of science to deliver useful results to everyone. I would even go further, though, and suggest that the overall results of these popular shared experiences are quite likely a key source which does (or at least could) usefully inform the formation of actual hard scientific hypotheses. Perhaps sceptics, as they scrutinise and explore what seems to them questionable, are actually gaining useful information that informs (perhaps less than consciously) their hypothesis-generation.

So the way I see it, this ubiquitous phenomenon of humans sharing their individual experiences is, and always has been, a huge part of the environment within which scientists generate hypotheses, and in testing the hypotheses that attract the most interest, scientists find their raw material – it would be quite wrong for them to devalue all of that. As the quip goes: "What do you call alternative medicine supported by evidence? Medicine" – conversely, all of medicine and all of science was "alternative" once, and so completely writing off the entire "alternative" realm would be a little like cutting off one's own oxygen supply.

Perhaps I'm off track, and your main point is that however many people may report benefits from these treatments, this would still not scientifically validate the hypothesis described in the article. I can entirely agree with that point, and if you accept that sharing experiences of treatments is worthwhile then I may have been making that case unnecessarily.

But In the end, I suppose the reason why I am here arguing these points at all is because mainstream science and medicine (at least what is officially accredited in the UK) offers me nothing whatsoever for what ails me. Not only does it offer no treatment or pain relief, more importantly it offers me no research into my illness either. It's that lack of interest in our plight which creates this vaccuum, and so by far the best and most effective way to deal with the valid concerns raised by IVI and others about the 'alternative' world would be to advocate for medical researchers to fill that void themselves and take a scientific approach to the millions of people who are ill and who are being ignored by medical research. Far better to light a candle than to curse the darkness, after all, and it seems to me appropriate for scientists to address their own failure to provide answers rather than focusing their attention on the shortcomings of those who attempt to make up for their lack of interest. I'm sure you do both, IVI, and all credit to you for that, but there are far too many who seem to criticise those making an effort without offering any scientific path as an alternative. Offer us an alternative to the alternative, and this whole argument would simply disappear.

jace November 10, 2012 at 5:11 am

Barb C said, on the last page

It's just as likely that withdrawal from a supplement causes a rash as the likelihood of that supplement being beneficial. In other words, we just don't know what is going on when it comes to anecdotal evidence, which highlights why it's important to go up the hierarchy of scientific credibility.

But I had the rash before I'd heard of Cats Claw too. It's very like a lupus rash picture I found, it's similar to a parvovirus rash, and a HHV1 or was it 2 rash too. Cat's Claw has been used as an immune modulator and anti-viral for centuries, and is considered 'possibly safe' by WebMD. Cancer.org says

Thus far, animal studies suggest that it is unlikely to be very toxic to humans. Mild rash, lowered blood pressure, sleepiness, and diarrhea may be possible.

and that's in doses of twice to ten times as much as I take.

What choice do we have, Barb? Before I started experimenting for myself I was going downhill fast. I had vertigo, temporary paralysis, insomnia and brain pain like you wouldn't believe (or perhaps you would). Everything the docs gave me made me worse. Now my brain works the way it should, most of the time, and I do have some sort of life. No, you cannot tell us we should not try and treat ourselves, if we are careful and cautious and do our research. It's the only choice some of us have.

Cats Claw is not all I take. I have quite a protocol, which I test and record. It works, not perfectly, but better than anything medical advice has given me. It's my life. Warning, however, there are medical contra-indications to Cats Claw. Everyone must do their own research.

barbc56 November 10, 2012 at 10:12 am
heapsreal

barb, the link to the video explains why normal lab values arent normal. Apparently normal lab values are selected from a wide range of ages as well as a wide range of people with different health issues, lab ranges arent picked from healthy people and definately arent correlated with age for many labs. So low normal lab value could be normal for a 70 y/o with underlying health issues, so the normal lab values are far from perfect. If u watch the video link it explains how they tighten the lab reference ranges to optimise health, there is a big grey area between healthy and disease, why wait to get to the disease end to treat it if it can be prevented. once again watch the video for a better explanation of what im trying to get at.

Heapsreal, I have read enough of this kind of material ad nauseum so am opting not to watch the video. This type of "medical advice", as portrayed in books such as Stop The Thyroid Madness, is not scientifically sound as well as dangerous. I have seen forums where people are self medicating and experimenting with such things as upping their thyroid medication. Upping your thyroid medicine when you don't need it nor know about dosing will probably make you more energetic but it can also cause such things as heart attacks, high blood pressure and something called "thyroid storm". All of these conditions are lethal. I was hyperthyroid at one time and was hospitalized as it was giving me heart arrhythmia. which resolved once I was treated for this.

The endocrine system is a delicate balance and if you end up needlessly messing around with one part of this system it can have the effect of messing up your whole system.

Dr. Bryan P. Walsh is a naturopath and for me that says it all.

http://www.drbryanpwalsh.com/

We live in a society that wants a "quick fix" for whatever ails us. Look at all the ads that give out the message, have this symptom?, well just pop a pill or supplement and you will feel better.

The reality is that right now there's not a lot that can be done about our condition other than symptom control. So when a doctor says this we start doctor shopping and this is where the alternative medicine industry rushes in to fill this gap and we end up not only uselessly spending money but also possibly putting our health in jeopardy. This applies for other health conditions as well and the everyday aches and pains that come with life.

This is just being realistic. This is why it's important to advocate for more research about me/cfs.

I'll let others choose to go down this path.

Barb C.:>)

Valentijn November 10, 2012 at 11:01 am
barbc56

Dr. Bryan P. Walsh is a naturopath and for me that says it all.

Odd. Because where I live there is a naturopathic university that is as rigorous as the allopathic schools of medicine. And when they graduate, and pass whatever tests, they become licensed just like the allopathic doctors, with the same privileges. Naturopathic doctors are doctors, just with a different focus/view of health, which is actually pretty useful when you have a disease that isn't easily categorized.

The reality is that right now there's not a lot that can be done about our condition other than symptom control. So when a doctor says this we start doctor shopping and this is where the alternative medicine industry rushes in to fill this gap and we end up not only uselessly spending money but also possibly putting our health in jeopardy. This applies for other health conditions as well and the everyday aches and pains that come with life.

I don't think anyone is proposing that treating their adrenals has cured their ME – it's a temporary fix to keep us somewhat functional while waiting for something better. We see naturopathic doctors, try supplements, try herbs, etc, because allopathic doctors are often not even treating symptoms, certainly not adequately. If I stayed away from naturopaths and supplements, I would probably be bedbound, and definitely housebound.

Conventional doctors have failed us for decades and are still doing so. That doesn't mean we nod politely and go off to slowly die or lay down for a few decades while waiting for a cure. It's worth some risk to try things, preferably after researching them as best we can.

We don't do this because we want to – we do it because we literally have no choice. We're not qualified to be doing it, but in most cases, the professionals aren't doing it for us.

barbc56 November 10, 2012 at 11:06 am

This is something I just saw on the bottom on another forum for another health related issue:


Please remember…what is posted on these forums are our experiences, thoughts and opinions…it is not always 100% accurate.

I wonder if we had this posted on Phoenix Rising, people would feel more comfortable about expressing an opinion as well as reducing some of the defensiveness sometimes seen when posts have a different perspective than our own. I am not saying people shouldn't respond to posts but it might improve the tone. Please understand that I am not referring to specific people or topics. :) Barb C.:>)

barbc56 November 10, 2012 at 11:16 am

@Valjean

Not only do naturopaths not have to do a residence, but their training is not science based. D.O's, I believe, do have a more rigorous education. I find this rather concerning.

In jurisdictions where Naturopathic doctor (ND or NMD) or a similar term is a protected designation, naturopathic doctors must pass board exams set by the North American Board of Naturopathic Examiners(NABNE)[54] after completing academic and clinical training at a college certified by the Council on Naturopathic Medical Education (CNME).[50] Residency programs are offered at Bastyr University,[55]National College of Natural Medicine,[56] Southwest College of Naturopathic Medicine,[57] andUniversity of Bridgeport.[58] NDs are not required to engage in residency training.[12]
In 2005, the Massachusetts Medical Society opposed licensure in that commonwealth based on concerns that NDs are not required to participate in residency, and are trained in inappropriate or harmful treatments.[41] The Massachusetts Special Commission on Complementary and Alternative Medical Practitioners rejected their concerns and recommended licensure.[59]

http://en.wikipedia.org/wiki/Naturopathy#Practitioners

I think I have done enough posting for one day, LOL!!

Barb C.:>)

Valentijn November 10, 2012 at 11:23 am
In Vitro Infidelium

That profoundly understates the extent of the placebo effect. No individual can exclude the placebo effect – it will not matter how much testing you do – the individual will always be self referencing and therefore incapable of responding disinterestedly to the accumulating data. People are free to experiment upon themselves, but no one should be under the illusion that such experiment will have meaning beyond that one mind/body.

I think we'd all love some large double-blinded randomized studies on the treatments that a lot of us have found helpful – but it doesn't happen, especially not in the context of ME/CFS. Lacking that gold standard, we do the best we can with what is available – the experience of ME experts and the experience of patients, hopefully while using good judgement and reading between the lines as best we can.

Those self-experiments conducted by other patients have been helpful. I don't look at them and say "OMG, I have to try that because X said it's great!", but it does give me something to look into. I can evaluate the risks versus the benefits, discuss it with a doctor, and give it a shot if it looks workable. For example, fish oil – it gets rid of my ME headache 12 hours after I start taking it. If I stop taking it, the headache comes back after a day or so. There's no studies I know of regarding ME headaches and fish oil, but I heard about it, there's basically no risks, and it's' been extremely beneficial in reducing my pain.

Same thing with trying Strattera. I only know of one person who believes it helped them, but I had low blood platelet norepinephrine levels and low blood pressure, so it seemed worthwhile to try a low dose of an NRI that can raise blood pressure, even with the potential side effects. And as a result, I've not been housebound for the past month, and I can sit up all day, stand up for an hour or more, and think quickly and process things properly again. This has been objectively verified by my doctor to some extent by checking my blood pressure laying, sitting, and standing, before starting Strattera, after two weeks, and after 4 weeks. I went from a pulse pressure of 25 to 32 to 45.

If not for people sharing their personal experiences, my life would be far more limited and unpleasant than it is now. I'm always hoping for more quality studies, but I'm not going to discount other people's experiences or my own when I've experienced how helpful they can be. The alternative would be to sit around and wait X years for a drug company to repurpose some drug or other, and suffer a lot more than is necessary during the interim. Screw that :-P

Valentijn November 10, 2012 at 11:48 am
barbc56

Not only do naturopaths not have to do a residence, but their training is not science based. D.O's, I believe, do have a more rigorous education. I find this rather concerning.

It depends very much on the state. In Seattle we have Bastyr, which is mentioned as having residencies in the Wikipedia article, and if you look at the credits and courses required, it's almost identical to what is required by the University of Washington's medical school (I was rather skeptical too and did my homework before going to see a naturopath). Residencies probably aren't required for licensing because naturopathic medicine is a new area, and there probably aren't anywhere near enough residency opportunities for the students.

Their training most certainly is science based, unless you're talking about non-practitioners in states where they can't be licensed. For Bastyr the prerequisites are: a bachelor's degree, college algebra, 4 chemistry courses (2 organic or 1 organic and 1 biochem), 1 year of biology (including cellular biology and labs), physics, and psychology.

Bastyr's program is 4 years long, and the courses taken each quarter (and clinic requirements) are listed at: http://www.bastyr.edu/academics/are…naturopathic-doctor-degree-program#Curriculum

Some of the courses make me wince, but they're also studying the same systems the UW med students are.

Course descriptions are at http://www.bastyr.edu/sites/default…talog/2013-catalog/13-Course-Descriptions.pdf (includes non-ND courses).

heapsreal November 10, 2012 at 4:31 pm
barbc56

Heapsreal, I have read enough of this kind of material ad nauseum so am opting not to watch the video. This type of "medical advice", as portrayed in books such as Stop The Thyroid Madness, is not scientifically sound as well as dangerous. I have seen forums where people are self medicating and experimenting with such things as upping their thyroid medication. Upping your thyroid medicine when you don't need it nor know about dosing will probably make you more energetic but it can also cause such things as heart attacks, high blood pressure and something called "thyroid storm". All of these conditions are lethal. I was hyperthyroid at one time and was hospitalized as it was giving me heart arrhythmia. which resolved once I was treated for this.

The endocrine system is a delicate balance and if you end up needlessly messing around with one part of this system it can have the effect of messing up your whole system.

Dr. Bryan P. Walsh is a naturopath and for me that says it all.

http://www.drbryanpwalsh.com/

We live in a society that wants a "quick fix" for whatever ails us. Look at all the ads that give out the message, have this symptom?, well just pop a pill or supplement and you will feel better.

The reality is that right now there's not a lot that can be done about our condition other than symptom control. So when a doctor says this we start doctor shopping and this is where the alternative medicine industry rushes in to fill this gap and we end up not only uselessly spending money but also possibly putting our health in jeopardy. This applies for other health conditions as well and the everyday aches and pains that come with life.

This is just being realistic. This is why it's important to advocate for more research about me/cfs.

I'll let others choose to go down this path.

Barb C.:>)

If your happy with the health care your getting then i suppose thats fine and thats all that matters.

August59 November 10, 2012 at 7:27 pm
nanonug
AFCFS

This is interesting. Is it anecdotal or other source(s) to back it up?

There is no such thing as "adrenal fatigue" in medical science. You can test for adrenal insufficiency (primary or secondary) by performing an ACTH challenge. If, after being inundated with ACTH, your adrenals don't release any cortisol, then you have primary adrenal insufficiency. Otherwise, the problem lies elsewhere.

The one thing that most of the main stream and even some of the intergrative doctors don't seem to know is if the case of some that is probable for AF and if this patient is one of the subsets that have the the horrible unrelenting pain and is by chance on even low doses of opiate pain medication, the ACTH test is worthles due to the opiates blocking most of the receptors that ACTH uses to transport it's signal. Now there is a different stimulation test and I haven't found where it is affected yet.

jace November 12, 2012 at 4:26 am

Heapsreal, I have read enough of this kind of material ad nauseum so am opting not to watch the video. This type of "medical advice", as portrayed in books such as Stop The Thyroid Madness, is not scientifically sound as well as dangerous. I have seen forums where people are self medicating and experimenting with such things as upping their thyroid medication. Upping your thyroid medicine when you don't need it nor know about dosing will probably make you more energetic but it can also cause such things as heart attacks, high blood pressure and something called "thyroid storm". All of these conditions are lethal. I was hyperthyroid at one time and was hospitalized as it was giving me heart arrhythmia. which resolved once I was treated for this.

The endocrine system is a delicate balance and if you end up needlessly messing around with one part of this system it can have the effect of messing up your whole system.

Strange how many people have reported greatly improved health by following the model explained in STTM… your personal experience is anecdotal, and not necessarily relevant.

barbc56 November 12, 2012 at 3:57 pm


Strange how many people have reported greatly improved health by following the model explained in STTM… your personal experience is anecdotal, and not necessarily relevant.


My "anecdotal" reference may not have been relevant in the strict sense of the word but I used it to to show the dangers of getting too much thyroid which is a realistic medical based consequence if you take medications/supplements that stimulate part of the endocrine system when it's truly not needed and possibly creating an imbalance that does more harm than good. Look at steroid use by athletes. It may improve their performance in the short run but in the long run is very dangerous. Therefore it's important to get a doctor who knows how the endocrine system works, not just based on studies but also taking into account the latest scientific medical knowledge of which an endocrinologist has spent years studying.

If I had said this is my experience so it must be correct and stopped there it would have been purely anecdotal.

The following shows what I mean when I say science based medicine.

Good science is the best and only way to determine which treatments and products are truly safe and effective. That idea is already formalized in a movement known as evidence-based medicine (EBM). EBM is a vital and positive influence on the practice of medicine, but it has limitations and problems in practice: it often overemphasizes the value of evidence from clinical trials alone, with some unintended consequences, such as taxpayer dollars spent on “more research” of questionable value. The idea of SBM is not to compete with EBM, but a call to enhance it with a broader view: to answer the question “what works?” we must give more importance to our cumulative scientific knowledge from all relevant disciplines.

http://www.sciencebasedmedicine.org/index.php/about-science-based-medicine/

Is the system perfect? No. But I would rather choose a doctor who is a practitioner of SBM than a naturopath whose knowledge base, IMHO is within a framework of treatments based on antiquated and/or unsubstantiated theories of medical knowledge

If a medication is making someone feeling better that may or may not be meaningful and is rife with logical fallacies some of which are correlation does not mean causation, self limiting conditions, conditions that wax and wane and personal bias. It takes a lot more than just this one factor, feeling better, to come up with a definitive diagnosis and subsequent treatment.

Using this model, IMHO, is not only the better way for science to progress but ups the chance that a treatment will be developed that will really help a medical condition.

While this is my take on the matter what others choose is their business.
Barb C.:>)

jace November 14, 2012 at 12:41 am

While this is my take on the matter what others choose is their business.

Nice one, Barb :thumbsup:

Hip November 24, 2012 at 11:00 pm

It is interesting that cats with interstitial cystitis (a common comorbid condition in fibromyalgia 1) have shrunken adrenal glands, and may have mild primary adrenal insufficiency:

Small adrenal glands in cats with feline interstitial cystitis

Since interstitial cystitis (and the similar condition of overactive bladder) involve urinary tract abnormalities, and since the adrenal glands sit on top of the kidneys (the kidneys being the beginning of the urinary tract), it may well be that whatever process (perhaps an autoimmune process?) is damaging the urinary tract in interstitial cystitis and overactive bladder, this same process might also be damaging the adrenal glands.

Steve Boyle November 28, 2012 at 6:45 am

Acknowledging that there is a percentage of ME/CFS sufferers who have severe sypmtoms all the time, it is fair to say that a greater percentage have fluctuating symptoms [frequently referred to as 'good days' and 'bad days']. In some people these changes are very marked [I'm one of those] which could be one of the reasons some of the non-believers point the finger at us; "how can you do that if you are so ill ?". They don't think we should have any sort of a life when we are well enough to do so.
Is there anyone out there who, like me, wonders why there isn't more research on what happens to our metabolism to give rise to such significant changes between good days and bad days ? I've been tested ad nauseam, but I've never been tested on a good day then on a bad day, then the results compared, despite requesting this be done on more than one occasion. Yet on one occasion I was diagnosed with Addisons, only to be told two weeks later following a second [blood] test that there had been a mistake.
The adrenal stress profile test is reputedly very accurate – I would very much like to have that test done on a good day, then a bad day, but can't afford to do that. And I'm not well enough to keep abreast of all the research that goes on, so if work has been done on the lines I'm suggesting, I'd be very grateful if someone would post the details on here.
I found the reference to damaged/atrophied feline adrenal glands most interesting; another bit of research I'd not come across before – has similar research been conducted on humans ?
O'baoighill.

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