Royal College's Report on CFS (1996)

[RogerBlack]

I am very skeptical about the idea that anyone could truly harm themselves by deciding to rest far too much. Resting more than what your brain thinks is appropriate means going against your instincts every day. It is a form of abstinence from pleasure and takes a lot of willpower.

Not being able to do things because of a symptom flareup, or not being able to do them because you are encouraged to stay in bed is similar. (this happened for a month or two early on in my disease due to my parents beleiving it may help.)

It has also at times happened to me that I can't get up the mental energy to do things due to depression - and it would (and has) at times helped to be forced to be active.
Most of the time though, my problems are entirely the opposite.
Especially since my mom passed, self-care seems to be an unending round of forced overexertions, with increasingly poor ability to tell when I've done too much.

Pacing, and remaining in my energy envelope seems best.
But.
Should I attempt to stop 40% or 60% into my maximum energy? Should I be monitoing any particular physical signal (from nerve conduction to swaying on standing). Should I start doing things again at what time post-fatigue, and at what level.
These are all things that are very unobvious, and I would be truly startled if I (and, indeed most people) were doing them right. Even without a cure, or even effective pharmacological treatment, simply being able to work out what the 'best' trajectory to follow would be would be an enormous benefit.
Especially if it was scientifically backed, so I could say to external parties 'As recommended by X, I was unable to attend to day as my Y score was Z and was likely to provoke a response lasting X days severely worsening my condition'.

 

[flybro]

I think some people may take advantage of the cfs diagnosis basket case, without biomarkers!

However I find it hard to imagine that anyone would be able live the act for very long.

I'm sure there are easier ways of conning the system, in phone camera world, with instant uploads, the chances of being exposed as a cheat must be quite hihg.

Plus the disease takes so much away from people and families, it seems such a counter-productive con.

 

[mermaid]

I had a friend who had a diagnosis of CFS/ME (as the 'powers that be' like to call it over here in the UK - anyway, I know that she rested a lot, as I had my CFS/ME diagnosis at around the same time and we talked about how we were. She used to improve a little, do a bit more, then get flu or a virus and go backwards. She did a lot less than I did, physically.

Eventually we got to talking about the dreaded Lightning Process, and I am afraid it was me that told her about it, not that I wanted to do it myself, but just pointed out that it existed. Much to my amazement she went to do it, and decided to use it differently to how she was trained to do, but use it a bit like GET I suppose. Anyway within weeks she was cured... and still is 5 years later. So did she have deconditioning I wonder?

Meanwhile, my approach was very different. I have always overdone things - not paced well and suffered the consequences. I have been ill for 10 years, and have had a few relapses in that time, but never severe. However recently I have been able to gradually extend my activity and am now better than I was a few years ago. My secret? Well I have tried just about everything bar LP, ha ha! I changed my diet, take many supplements, use herbalism, had some private testing done, do gardening, and some dancing. I think the herbalism probably has helped the most actually - along with the basics of methylation.

 

[Snow Leopard]

there is a clear chronology that is easy to follow

I think you're giving Wessely far too much individual credit.

Does 'deconditioning' have any physical basis?

Plenty of patients have normal cardiovascular fitness regardless of how long they've been ill (from 6 months to 15+ years). I've done the 2-day exercise tests to prove it.

 

[RogerBlack]

However I find it hard to imagine that anyone would be able live the act for very long.

To be clear - this is NOT what I was talking about.
There are some people that try to do too much, and their condition is worsened due to that.
(including me).
The notion that nobody tries (in an attempt to heal) to do less than they could is ridiculous, simply because they can't know what their disease would be like if they did more.

Especially when the disease differs so dramatically between people, with seemingly such disparate triggers. What helps for one will not help for another.

I was encouraged - with the best of intentions - to stay in bed for several months - which lessened the amount I could do (because obviously I was in bed) with the best intent by my parents.
It is very easy to be wrong about the amount you can do, and what your exercise envelope should be.

 

[flybro]

To be clear - this is NOT what I was talking about.
There are some people that try to do too much, and their condition is worsened due to that.
(including me).
The notion that nobody tries (in an attempt to heal) to do less than they could is ridiculous, simply because they can't know what their disease would be like if they did more.

Especially when the disease differs so dramatically between people, with seemingly such disparate triggers. What helps for one will not help for another.

I was encouraged - with the best of intentions - to stay in bed for several months - which lessened the amount I could do (because obviously I was in bed) with the best intent by my parents.
It is very easy to be wrong about the amount you can do, and what your exercise envelope should be.

Sorry was reply to @Glycon but coudlnt reem name,

 

[Glycon]

People respond differently to their CFS/ME.
This is due to many factors.
Being instructed that GET is a cure.
Being unable to avoid heavily fatiguing activities.
Being unwilling to avoid them.
Having someone encourage them to rest all the time (yes, it happens).
Doing that on their own initiative.

The notion that people with CFS/ME automatically know what will best result in their condition stabilising or improving is almost as silly as GET.

There have been limited to no proper studies on this - and it seems clear that some approaches are clearly bad (encouraging vigorous exercise, CBT for physical symptoms).

What you'd really need at minimum is unfortunately horribly complex - either a large observational trial with actiometers and a 'how fatigued are you', 'why did you stop moving' buttons, or a clinical trial lasting several months in-patient with challenges and various approaches with hundreds of people.

Self-reports may not be that useful, if you want to actually work out what is the best course for someone to follow. They may work somewhat for finding what causes crashes.

Thank you!

Everything you're saying is so obvious that it's really unfortunate that it needs to be spelled out.

 

[Keith Geraghty]

Just to add the latter part of this chronology; Wessely and White and the CDC moved ME (1950s) from hysteria (McEvedy and Beard), towards affective disorder and somatoform disorder, reconstituted as CFS (a mash of neurasthenia, deconditioning, dysfunctional beliefs, and personality traits and risk factors ) --

the refinement of the CFS model comes with the 3-Ps framework - predisposing, perpetuating and so on; which comes directly from the BPS model approach (there is some biology eg a virus, then illness, then beliefs, and then behviours) - this gives a famework of CBT and GET interventions and makes a nice framework to hook all of your ideas on at conferences and so on.

Wessely, White and Sharpe often spend time trying to substantiate the model by showing audiences data on correlations between the numbers of patients with CFS who also have depression or anxiety, co-morbid and pre-morbid (the affective disorder part); they then go on to talk about somatic symptoms and health care use by CFS patients, pre-CFS even (the somatoform disorder part) and they look at how these patients repond to symptoms (catastrophizing); the narrative is skillfully built up in the minds of the listeners that this all sounds very conviencing - throw in a bit about high childhood abuse rates, childhood illnesses and so on and you have a lovely model of Illness By Association.

Now, its not enough to just give a model of what might be happening, the next step is to offer health bodies and other doctors a "cure"; - in pops Becks CBT model; that can alter beliefs and GET to alter behaviours - and White, Wessely and Sharpe throw in a range of RCTs that show benefits (never really delving too deeply into what exactly these do - or never really mentioning RCTs that show negative outcomes eg FINE or other); the audience is led through an amazing catelogue of science and statistics - that are used to offer an impression that their model must be correct given the treatments that alter beliefs work.

But wait - what of all the patients that complain or reject this model: ah well we have an explanation - they are led by a small militant group of patients who are opposed to Psychiatry - they try block anything we do and they try spread false claims on the internet. We have received death threats and hate mail but we keep going despite this - we only care about patients and science.

CFS - an illness of association wrapped up in a web of scientific narrative.