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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Being Goldilocks - too much, too little, and "just right"

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Empirically based treatments and science based treatments are not synonymous, though related.

There are many facets of evidence based medicine. Most of it practiced today is more Evidence Based Medical Management. Its NOT science. Its managerial.

There is a growing conflict between Evidence Based Medicine and Evidence Based Medical Practice, or just Evidence Based Practice. Much of EBM is irrational when you use the rules of EBP. EBP is about applying reason and evidence to clinical decision making. EBM is largely, due to pervasive institutional influences, about how to manage or promote treatment choices, with a particular emphasis on economic factors, either directly or implicitly.

I do agree that its important to research obvious toxicology from supplements and drugs ... all of them. I do agree that the pattern of poor response to supplements or drugs could be a clue. I do agree that full genomic analysis is useful in many cases.

However there are other issues here. Even with training and resources not everything is always obvious. Science is a work in progress, and the information needed might not even be available yet. Cost can be a huge factor ... many of us could only do these things if they were free or very very cheap. Many of us have issues with interpreting the results .... and that is not just about intelligence, brainfog or lack of training. Its also that the science is not evolved enough yet. This kind of investigative approach to medicine is the future, but we are only just starting down that path. When we have Star Trek Medicine, and a doctor can just wave a technomagic wand at a patient and the device does the testing and the doc reads it on his computer screen .... that is when this becomes universally available to all patients.

Used responsibly most supplements and herbs are safe most of the time. Minerals are less so as the tolerance ranges are often small, and impacts on one mineral might affect tolerance to others.

Used excessively anything is dangerous .. even water or oxygen.

One of the issues we face is that ideal nutrient values need to be established empirically. RDAs are only for avoiding deficiency, and aimed at being 95% effective at doing so - which means that potentially 5% of patients (and there are confounds here) will not get enough at RDA levels.

RDAs are not about optimum nutrition. Optimum is probably over the RDA levels by quite a lot.

Drugs are a huge issue though. The body has mechanisms that can deal with nutrient imbalances within reasonable ranges, but this is not the case for drugs. We have not had millions of years to adapt to prozac, for example.

Drugs are indeed about risk/benefit ratios. So is vaccination, though the argument is slightly different there. Yet one of the driving forces behind EBM is that many drugs have been found, through later studies, to be harmful or fail, despite very good initial results. This applies even to dbRCTs.

EBM is great for well developed established areas in medical research. I think its a nonsense for cutting edge, muddled and under-researched areas of medicine. Its like saying its OK to come to a definitive decision with only X% of the knowledge needed, where X is largely unknown and might be 1% or 90%. This is fancy managerial guesswork, not science.

There are isolated cases of patients doing well with simple therapies. Several times this is just vitamin B1, or B12, and there are other examples. Yet such isolated cases tell us little about the mechanistic impact and how that relates to the broad majority of patients.

At the moment I am investigating the literature surrounding ACE inhibitors and bradykinin, largely due to something @MeSci wrote. I am beginning to question the whole notion of giving ACE inhibitors to anyone with CFS or ME. With no exceptions, every single worsening symptom I have had back to about 1998 coincides with the use of ACE inhibitors, and the symptoms are known side effects. Every single doc has missed this, and I have seen many, and indeed when in hospital and they switched me to Ramipril, and I had increased neuropathic problems, and asked the hospital pharmacist, they had no idea. There are even grounds for thinking ACE inhibitors can make OI worse. The test for me is simple: I will be investigating and eventually trialling alternative medications. If many of my symptoms go away then I have some confirmation. This already happened while I was in hospital on Ramipril, which was not my usual prescription. My symptoms changed.

I may say more later, this is getting too long and I need a break.
 

GracieJ

Senior Member
Messages
772
Location
Utah
ACE for me was like water on a dying plant. Cannot even imagine an ACE inhibitor.

Paraphrasing this - Linus Pauling once commented on RDAs, saying that they are just enough to keep a person in a state of ill health, never getting worse, never getting better.

An ill body may need megadoses of specific nutrients to recover fully. I am intrigued by what is being done with ascorbic acid via IV for several maladies, and wonder if it is one of the missing pieces, a possibly vital one, for ME/CFS.
 

GracieJ

Senior Member
Messages
772
Location
Utah
Which brings me to some sincere questions for @Dr. Frost :

What DOES work, in your opinion? You know a lot, have read a lot; so far, we are hearing thou-shalt-nots. What has your personal experience been? What is the nature of the ailments? Do you have or have you had ME/CFS? If so, where does it fit with the ICC definition? I think many here would find that a useful read. You have mentioned a few things. Can you write a more detailed intro and share the link here?
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Treating the root cause has been mentioned a few times, sounds great in theory but what do you do if you can't find the root cause.

Most people now treat symptoms and abnormal lab values, this can help people reduce suffering and increase their level of function.

it's an individual decision if one wants to sit on their hands and wait for a diagnosis of the root cause and a treatment or to try something and get some relief.

There are some people, probably many who don'thave a doctor ,I don't blame them for trying something. If they didn't try something then I think many would have lost hope. I think those who have good medical care don't realize how desperate many are without a good doctor.

It's not good enough that when one sees a doctor they get advised to take some over the counter pain killer and wait for a cure. Then rushed out of the consult room. That is a very common scenario many of us have been in. Imagine being an original from Lake Tahoe and taking that advice. One would still be waiting and probably a stomach ulcer from the otc pain killers used since the mid 1980s.

We don't have alot of options other than experiment or just wait in a hopeless frustrated life and probably end up with worse complications of untreated ME.

I say go for it and try whatever you can to help. Research it and way up the risks.
 

GracieJ

Senior Member
Messages
772
Location
Utah
The reality of ME/CFS for many is loss: Jobs, homes, cars, relationships, quality of life, self-respect, sense of self-worth.

Yes, I was my own guinea pig with herbal remedies. At stake in that? The chance to keep a roof over my head and food on the table. Have been without one or both at times.

I was a guinea pig every time I used a prescription, as no one could have told me the outcome. If there was an odd and rare side effect, I had it. If there were ten bad side effects, I had nine. Scared several doctors good, the outcome was always so off the path.
 
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alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
There are some people, probably many who don'thave a doctor ,I don't blame them for trying something. If they didn't try something then I think many would have lost hope. I think those who have good medical care don't realize how desperate many are without a good doctor.

This is a big part of it for some of us. Hope can sustain us, emotionally, through crises that would be demoralizing otherwise.

In my case I am also insatiably curious. I want to know what is what. I want to know the mechanisms. Given that, though I do believe in being cautious, I want to tinker with those mechanisms. People like me will do that so long as there is no definitive treatment. We are still years, at a minimum, from having a definitive treatment.

The issue here though is that, within a medical environment of high uncertainty, some risks are more calculable, and some less, and some risks are more or less worth taking. Investigating enough so I can form a preliminary judgement, and updating that as new information becomes available, are mandatory for me.

Given my situation if I had sat back and done nothing, not sought answers, while I would be financially better off I might also have been driven to severe depression.

Life often sucks, and without hope what is there to sustain us?
 
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brenda

Senior Member
Messages
2,266
Location
UK
I hav e experienced a set back recently and have pinned it down to overuse of essential oils which l was using for sleep, as an anti- bacterial agent in my zeolite home made toothpaste and a food grade frankincense for DNA repair. I had not realised just how powerful they are and l think that l have stressed my liver though being in the UK l cannot just go and get a liver test.

I had ignored some discomfort around my right hand rib area which l am guessing is it and feeling rougher than usual and more toxic. So l am just using the oils for now as a mix for an anti -bacterial house cleaner using the Thieves mix and use it all over work surfaces, in the washing machine and dishwasher. It is so useful as a spray cleaner when l don't have much energy and means that l don't have to do a 60 degree wash to keep my washer from smelling.
 

adreno

PR activist
Messages
4,841
@alex3619

Sorry if you have missed this, but there is nothing new about the connection between ACE and POTS/OI. Look at this thread for example:

http://forums.phoenixrising.me/inde...n-angiotensin-system-for-low-flow-pots.14160/

The thread mentions how ACE / angiotensin inhibitors could help low flow POTS. I would suspect that they then have the capability to make high flow POTS worse. I tried angiontensin II inhibitors years ago and they made my OI worse, so I dropped them. In fact, everything that inhibits angiotensin one way or the other makes my OI worse.
 

adreno

PR activist
Messages
4,841
Thanks for the link @adreno, but what is new is a lot more than just OI. The OI link is quite old. Its all the other links that interest me, but this is not the thread for it.

Think bradykinin.
I looked it up on wikipedia, and it looks interesting (bradykinin is involved with inflammation, pain and excitotoxicity). Hopefully you can make a post about it when you get an overview.
 

brenda

Senior Member
Messages
2,266
Location
UK
@GracieJ

I know what you mean, I have often thought of leaving because of the heavy bias towards pharmaceuticals and doctors, both of which I have found more than useless, even a so called environmental doctor treating allergies. I have preserved my functioning with a pure diet with no processed food, clean water, and natural remedies and household products and have been able to do without anti-biotics for over 15 years or any other meds. treating infections when they arise with natural remedies or just even steam for chest infections. I don't think that I would have been alive still if I had gone down the allopathic route due to my extreme sensitivities. I have also preserved my brain function to a great extent.

I agree about caution being necessary when using naturopaths and their treatments and have never found one with enough knowledge to treat me. I use extreme caution with whatever I put in my body (apart from my latest error).
 
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GracieJ

Senior Member
Messages
772
Location
Utah
@brenda

Glad someone else understands. It is a hard discussion when people want modern medicine to solve this. It may not come in my lifetime and I am not waiting!

I still consult one doctor, an MD running an alternative clinic. I see him maybe once every two years. It gets to where I am sharing new information, then paying. Hmm... we get along well, though; I pick his brain about possible treatment regimens, he lets me know if he is willing to follow me on the experiments and breaking information. (Hasn't turned me down, but I have not been able to do anything new testing wise for years now.)

I love essential oils!

They also happen to fit right in with the warning on this post. They have gotten to be popular again, and get mis-used. I am the person no one invites to sales parties, because my line is dilute, dilute, dilute, and do not use internally with few exceptions. They are rough on the liver. Those three points slow sales!

I use them around the house daily, diffusing or cleaning, and several times a week topically. Love 'em!
 

brenda

Senior Member
Messages
2,266
Location
UK
It gets to where I am sharing new information, then paying. Hmm..

@GracieJ

Yes I know the feeling. Whoever I have consulted ended up being educated by me but I have given that up. The environmental doc showed me respect and was blown away with my knowledge I think (but obviously not on here!) but the hour long phone consults ended up consisting of no input from her, and lots of information from me on nutrigenomics and methylation.

Essential oils are amazing aren't they. I had no idea they were so potent. Lavender is amazing for sleep and relaxation. I got the 5 oils for Thieves (avoiding the Young Living prices) as it is supposed to stop Ebola in its tracks and am finding it useful for spraying all sorts things where microbes will be growing and it smells divine. I am avoiding inhaling it though at the moment.

I don't think that modern medicine will ever solve this as more and more toxins are added to the environment daily. We are not supposed to get well.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
One thing I do take issue with is the word "homeopathic". To me, this is a prime example of how snake-oil has slipped into science-based treatment.

Homeopathic remedies are not useless. They are sometimes a little better than useless. They are often worse than useless, because people turn to them instead of something which actually works.

You do know what homeopathy is about, right? It was dreamed up before we knew about bacteria and viruses. People thought that water had a "memory" effect. Homeopathy is simply the practise of putting some of the poison in water (in your case, mercury) and then distilling it out over and over again until not one atom of that poison is left. In other words; they're selling you nothing.

The idea is that water's "memory" magically tells your body how to fight the poison. Why water would be so specific is not explained... why would it be teaching me to resist mercury, and not resist (say) clouds, or glass beakers, or the squirrel's kidney it was previously in? Homeopathy is mute on that obvious flaw in the logic.

By the standards of homeopathy, drinking a cup of water from an average lake should confer me immunity to pretty much everything in nature. And yet, it doesn't.

The whole thing is made even more laughable when you see the array of homeopathic pills on sale. That's right: not only did they have distilled water, they're now selling you a dry pill with all the water evaporated from it. Since homeopathy itself is based around the "memory" theory of water, how could a dry pill possibly be of any benefit? It defies even its own weird logic.

The effect of homeopathy is therefore the effect of placebo. And indeed, many many large-scale studies have found its impacts to be precisely on par with placebo.

While placebo might be helpful for some ailments, there is no way that placebo is going to help you excrete mercury. You are literally wasting your money there. And the person who is prescribing it to you, by definition, has absolutely no idea of either medicine or science. You should not be trusting anyone who peddles homeopathy with your health.

The only reason that homeopathic remedies are even permitted to be sold, is because of a dirty deal that was done over a century ago - when medical regulations were being brought in, and where the "bacterial theory of disease" was still in competition with quack cures like radiation therapy and electrical shock cures.

I am all for new therapies, but it must be science-based. There must be solid evidence of effect, backed by a plausible mechanism that fits current, proven science. Homeopathy has neither of these things.

And here we have the exact problem of my original post: that manu people are choosing treatment options based not on research and proof, but on a recommendation or website or the fact that the physician is hunky and has a nice speaking voice. These factors have nothing to do with evidence, and everything to do with ignorance. Education is the key, and where education is lacking, prudence should reign.

The fact that homeopathy is still peddled as any kind of cure is a travesty; it is fraud and nothing but fraud. If I sold you water as medicine under any other name, I'd be arrested.

References:
  1. http://www.iflscience.com/health-and-medicine/meta-study-confirms-homeopathy-doesnt-work
  2. http://rationalwiki.org/wiki/Evidence_for_the_effectiveness_of_homeopathy
  3. http://en.wikipedia.org/wiki/Homeopathy
  4. http://news.discovery.com/human/health/uk-government-study-homeopathy-worthless.htm
  5. http://www.csicop.org/si/show/homeopathy_a_critique_of_current_clinical_research/

I agree with most of the points that you make, but there are some medical products that have been used successfully for a long time, even though for a long time it was not known how they worked. Anaesthetics are a prime example.

In another post you talk about being on the 'crest of a revolution'. A crest usually means the top, but I am guessing that you mean the start?

But this can only be known in retrospect. It brings to mind the oft-repeated nonsense we hear about research being 'on the cusp of a breakthrough'. Years - even decades later - that breakthrough has not happened. You cannot know that you are about to discover something, or that a revolution is about to take place.
 

NilaJones

Senior Member
Messages
647
One thing I do take issue with is the word "homeopathic". To me, this is a prime example of how snake-oil has slipped into science-based treatment.

One thing to be aware of is that the word has different meanings in different countries.

In the US, where I am guessing you live, "homeopathic" refers to extreme dilutions.

In many european countries, it means any naturally-derived medicine. I would argue that this includes penicillin, digitalis, etc.

It also includes many things which have not yet been verified by peer-reviewed studies, or only recently verified. For example, topical arnica which studies show is effective as topical ibuprofen. Those studies are fairly recent. Before the studies were done, arnica was just as effective as it is now after the studies have been completed.

Things do not magically become more effective after publication. Either they work or they do not, And, as you have alluded to, pretty much everything, pharmaceutical or otherwise, works for some people and not others, due to genetic, environmental, etc., variation. What we need is more funding for research into 'natural' medications, not more hand-wringing about how they are fake. That way we can separate what works and what doesn't, and define side effects. (Ephedra comes to mind.)
 

Jonathan Edwards

"Gibberish"
Messages
5,256
Interesting discussion. Although I think Dr Frost treads in some doubtful territory him/herself I am all in favour of this sort of cautious approach. People will have noticed that I have been trying to say something like this too but I have the disadvantage of being a 'mainstream doctor'. (I can handle it, I know we are a bad bunch.) I also agree that it is the pharmaceuticals that are even more dangerous, but 'natural' things can be dangerous too , I guess.

With regard to homeopathy: I think you are mistaken NilaJones to think homeopathy means something more general in Europe. This may be a popular way of using the word but the word has a very well defined meaning - set up by the inventor Samuel Hahnemann (I think from Austria) in around 1800 just after Jenner had published on vaccination. Hahnemann's idea of giving a very very small amount of something that caused the same symptoms as the disease (homeo = same) was of course a generalisation from vaccination which did just that. The problem was that this principle only applies to vaccination and is crazy for anything else, especially if you dilute out to nothing at all.

Having said that, since most other medicines in 1800 did more harm than good (this really did not change for sure until about 1970) Hahnemann may have been a benign fraud. But he was a fraud alright.

And on the point of water memory, Dr Frost, the interesting thing is that this idea was introduced, as far as I know, not by Hahnemann, but by a research biochemist called Benveniste around 1975. He published a paper in Nature claiming to show that mast cells were degranulated by the 'memory in the water' of a homeopathic remedy. The extraordinary thing is that eminent professors of pharmacology, including one at St Bart's I worked with, took this seriously. The craziness was being generated by the 'mainstream science community'. However, a few people realised this was rubbish and soon enough the paper was shown to be a fraud, yet again. As you say, it occurred to some people (including me, as an intern at the time) that if the pills were dried out there wasn't much memory left to chew on! Maybe the lesson here is that 'mainstream' thinking isn't necessarily what it is cracked up to be (not that that comes as news here). As you say, you need the evidence, but you also need to be able to evaluate it yourself because eminent professors sometimes fall prey to mass hysteria.