Chronic fatigue syndrome and co-morbid and consequent conditions...

[jimells]

but my second attack 3 years later was blamed on me overusing a drug and drinking too much fluid, despite my repeated denials of both.

Don't you know that patients are all liars until the lab tests say otherwise?

 

[MeSci]

Since being approved for disability benefits I no longer have suicidal ideation every day. I once told a therapist that the best antidepressant for me would be cash. That was the wrong answer, of course!

It's exactly the right answer. I have often said that what I needed was an injection of money. It could have prevented a lot of the worsening. I could have paid for people to do essential stuff so that I could rest. I could have bought more supplements. I could have had my heating on instead of having to scavenge firewood from the fields. I could have stopped exhausting myself physically - growing and selling plants, and mentally - doing scientific research for charities (although I really really wanted to do the latter).

Then more money in proper ME research might mean that we were all in recovery or remission by now...

We seem to have gone a bit off-topic!

 

[MeSci]

Don't you know that patients are all liars until the lab tests say otherwise?

But then it would help if they actually DID the lab tests in my case, instead of making assumptions based on the fact that they had decided I was just a neurotic middle-aged woman!

 

[jimells]

We seem to have gone a bit off-topic!

Not completely. Every topic comes around to the same destination: we need policymakers to decide to actually help us.

 

[Aurator]

Don't you know that patients are all liars until the lab tests say otherwise?

And for PWME, the "otherwise" generally turns out to be "neurotic" or similar.

We seem to have gone a bit off-topic!

No, I think your point is of immense relevance. Many of us try to keep up a semblance of normality for as long as we can,
a) because it's expected of us
and
b) because for financial and family reasons we often have no alternative.

All the time we know we're slowly going down the plughole. If we'd had some kind of rest therapy shoved at us instead of GET, maybe we'd have stood a better chance. As it is, we're like owls forced out into the daylight, and the world wonders why we don't thrive on it.

 

[Sean]

Since being approved for disability benefits I no longer have suicidal ideation every day. I once told a therapist that the best antidepressant for me would be cash. That was the wrong answer, of course!

It would be an interesting experiment to have added a 5th arm to PACE in which patients were simply given extra income, enough to neutralise the main effects of poverty.

Bet they would have improved on the magical subjective self-report scores at least as much as in the CBT or GET arms. Probably more.

Like to see the full cost-benefit analysis for that.

 

[Dolphin]

Chronic fatigue syndrome and co-morbid and consequent conditions: evidence from a multi-site clinical epidemiology study

Lucinda Bateman, Salima Darakjy, Nancy Klimas, Daniel Peterson, Susan M. Levine,Ali Allen, Shane A. Carlson, Elizabeth Balbin, Gunnar Gottschalk and Dana March

http://www.tandfonline.com/doi/abs/10.1080/21641846.2014.978109#.VISPUeF87CK

This article is now open access http://www.tandfonline.com/doi/abs/10.1080/21641846.2014.978109#.VLlsZSusVp8

 

[beaker]

HERE is an article on the HF site about adrenal surges. Of course, one of the major consequences is anxiety.

I also wonder if there was ( in the study I know there is in everyday ME medical dealings) a discernment between what someone was diagnosed with by a doctor and if they doctor was correct. Were these physicians only counting what they had dx'd on these patients or had confirmed w/ the patient ? Or was it just some doctor gave me this dx ?
There's such a difference in this illness between what one has and what a doctor says one has. For example there is feeling down and sad and grieving and then there is depression. Not the same thing. Wondering how much confirmation of dx was made by the docs doing the study .

 

[Sing]

It would be an interesting experiment to have added a 5th arm to PACE in which patients were simply given extra income, enough to neutralise the main effects of poverty.

Bet they would have improved on the magical subjective self-report scores at least as much as in the CBT or GET arms. Probably more.

Like to see the full cost-benefit analysis for that.

Funny! So a new name for our illness could be Lack of Cash Syndrome or LOCS. @jimells Years ago I heard a story about how the iconoclastic hypnotherapist Milton Ericson treated a very suicidal woman, with similar thinking: He did not argue with her about her plan to commit suicide at all, but accepted it. Then he asked her if she had any money in savings. She said she had and told him how much. So then he said, "Well, how about before you commit suicide you take that $ and spend it." She decided that was an okay idea and said she would. He asked her to come back and see him after she had spent it. When she did come back, she said that as a result of spending that money on travel, etc., her life had completely changed for the better, and she said she had decided that she no longer wished to kill herself.

 

[Sing]

Another thought on Lack of Cash Syndrome or LOCS, Leonard Jason found that CFS is more common in people with low income than in other groups.

 

[jimells]

There's such a difference in this illness between what one has and what a doctor says one has.

I probably have at least a dozen diagnoses, few of them correct, none of them are 'ME':

Cervical stenosis - by a radiologist - neuro says image is "over read"
COPD - by a radiologist - I have no pulmonary symptoms
Medication Overuse Headaches - by a neuro who ignored my autonomic symptoms
Cannabis addiction - by a consultant hired to deny disability benefits
Hypertension - I actually have POTS
Depression, N.O.S.
Migraine with aura

I can't remember if the record actually says "Chronic Fatigue Syndrome" or just "chronic fatigue".

 

[jimells]

Another thought on Lack of Cash Syndrome or LOCS, Leonard Jason found that CFS is more common in people with low income than in other groups.

There's some useless "foundation" that advertises on NPR how they are attempting to discover the causes of homelessness. They've been looking for years. Doh! Here's a hint:

You don't find millionaires sleeping on subway grates...

 

[MeSci]

HERE is an article on the HF site about adrenal surges. Of course, one of the major consequences is anxiety.

I believe that it is likely that the anxiety many of us suffer is partly due to gut dysbiosis. Depression can also be caused by this. And of course the gut dysbiosis may also be at the root of ME for many of us.

Gut dysbiosis can lead to tryptophan being converted to kynurenine instead of serotonin.

High levels of interferon-gamma can cause depression.

I believe that both of these have been observed in ME. I have discussed them myself but of course can't remember the details (!) but here is some of my stuff on interferon and kynurenine.

There are also threads where people have reported remission/reduction of anxiety through dietary change and/or supplements.

So these, and other 'mental illnesses', may not be psychological in causation at all.

The study also doesn't chime with @Valentijn's poll on depression.

 

[Little Bluestem]

Lack Of Cash Syndrome is a consequent condition for many of us. It is a very serious condition which often prevents us from treating other co-morbid and consequent condition and can even cause us to get worse, so I am all in favor of treating it.

That probably wouldn't cure us, but it would certainly lead to a great improvement in quality of life. For some, the ability to treat the rest of the symptoms could lead to permanent remission.

 

[Sing]

Lack Of Cash Syndrome is a consequent condition for many of us. It is a very serious condition which often prevents us from treating other co-morbid and consequent condition and can even cause us to get worse, so I am all in favor of treating it.

That probably wouldn't cure us, but it would certainly lead to a great improvement in quality of life. For some, the ability to treat the rest of the symptoms could lead to permanent remission.

If you had an infusion of cash, what symptoms would you treat, and how, I wonder?

 

[MeSci]

If you had an infusion of cash, what symptoms would you treat, and how, I wonder?

My first choice would be to reduce workload, so get that vital but elusive treatment - REST. So I'd stop work, pay people to do chores, etc.

After doing that for a while, I'd get my blood nutrients, pH, etc., tested to see what I need to take.

I'd get any available tests done that might throw light on why I have high blood pressure, and tackle it at source instead of just taking a fairly-random drug.

I'd very much like a monitor that will measure a range of physiological parameters, so that again, I won't be just doing and taking this and that blindly, having to guess what's going on.

And right now, I'd sort out some decent heating - it's damned cold at the moment!

 

[Sing]

That is such a good answer! Being able to reduce exertions and to be at a better temperature--so helpful. But I still think there is guesswork, very often, in treatments even when working with better practitioners (when any are within one's range). Guesswork and then both upsides and downsides to various treatmetns and strategies.

I, for instance, limit my contact with people and pets--living alone with no pets anymore. I also live in a small, cleared out, organized space. These are strategies. But there are downsides in lack of companionship, lack of help sometimes and lack of room to accommodate all things that could be useful.

I have a bunch of pills and supplements which I have slowly worked out over the years--and they do help. I am also willing to try something new, and do from time to time. But I don't run after all the fads, having been disappointed too often.

I used to have Lack of Cash Syndrome--and then it was a different story--but now I don't. Yet, for me, the results are not outstanding--because of the reality of upsides and downsides, and the reality of the steady, underlying, low functioning state of my body which, every day, I have to cope with as well as I can.

Still, it is always fun to imagine, to think bigger and outside the box of whatever one's circumstances are. And it could prove helpful too--if not always to myself, then to someone else.

 

[Sean]

Lack of Cash Syndrome

Money can't buy you happiness, but it can buy you a better class of misery.

 

[Sing]

Sean, you nailed it. Let's go for high class misery!

 

[Little Bluestem]

But I still think there is guesswork, very often, in treatments even when working with better practitioners (when any are within one's range). Guesswork and then both upsides and downsides to various treatmetns and strategies.

If one could afford to see one or more of the better practitioners and get all of the relevant tests, the guesswork would be much reduced.

I recently had a NutrEval test done. It has given me a lot to work on. As I was leaving, the receptionist asked if I wanted to schedule a follow up test in 6 months. I said "no, I cannot afford it". I am a data-oriented person, so this is really frustrating.