BACME: Position Paper on the management of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS), Oct 2020

Yes, could suggest the BPS crew add the following tag line to all of their papers: "Science is whatever you want it to be".

 

I feel a calypso coming on...

 

TC explains the 'biology' of CFS.
From TC & Mary Burgess book 'Overcoming chronic fatigue'

 

Such an elegant theory....and such a pity that it bears so little relation to the evidence.

 

also very dangerous, as many newly diagnosed patients are directed by the NHS to read this book.

 

Such determinism is persuasive for the newly diagnosed.

It us impressive propaganda, weave a sprinking of truths into a narrative that seems to explain things when people are desperately looking hor explanations.

We still don't know how many body systems function fully, yet here we scrape the surface and pull together a unifying theory that could just as easily be found on a touchy feely pseudo scientific , middle aged second careerist blog ......

 

“What may happen is an infection, a very stressful life
event, or an accumulation of persistent stress causes worry
and disturbs sleep at night. This leads to irregular times of
getting up and going to bed, and more rests taken during the
day. Thus the usual daily routine and normal sleep–waking
cycle, both needed to reset the biological clock, are disrupted.
The biological clock then loses control over body rhythms,
resulting in the mental and physical symptoms of CFS.”


In my previous life I was a teacher of 4 to 5 year olds. I was ill for a while before I realised there was something going on, but thought it was stress - I was going to bed at 10pm, waking up at 3 or 4 am in a cold sweat about work, and then unable to get back to sleep before getting up at 6am ready to be at work for 7.30am. Funnily enough, people who work tend to have very set bedtimes and rising times because, y’know, they have jobs with set times and they need to be able to function at said jobs, and, in my case, it’s strangely hard to make up that lost overnight time by taking day time naps when you’re in charge of 30 4 and 5 year olds for 6 hours a day and have at least another 6 more of work to do outside that....

Patronising rubbish.

 

Patronising rubbish.[/QUOTE]

That's a very polite way of putting it @Blueskytoo

"In a study where the sleep patterns of healthy volunteers
were deliberately disrupted to make them similar to those
of people with CFS, they developed symptoms similar to
those of CFS, including feeling unrefreshed and physically
weak, sleepiness, poor concentration, and muscle aches.
However, when they were allowed to sleep undisturbed,
their symptoms subsided. This study indicates that a
disturbed sleep pattern can cause some symptoms of CFS,
but that these symptoms are reversible."

OR, to anyone with any inkling of science or physiology, it could mean that there is a disruption to the circadian rhythm in people with ME as even when they are allowed to sleep undisturbed they still show severe abnormalities in their sleeping pattern which results in unrefreshing sleep etc.

I think some copies of this section of this book could usefully be sent to some of the GDL committee to assist them with finalising the NICE Guideline and clarify some of the issues with advice being promoted by the "Specialist Clinics"

 

I prefer scientists who don't make stuff up, i.e. real scientists. Every single detail in Chalder's Tall Tales is made-up bespoke to fit the conclusions, not a single bit of this has anything to do with reality. This is exactly equivalent to inventing the celestial spheres. It explains nothing, has nothing to do with reality, it's just a story made-up to explain the most superficial features, as long as you don't actually care about accuracy.

 

Correlation ≠ causation.

Well, yes they would because they are healthy volunteers.

Oh no it doesn't. It demonstrates that using healthy volunteers to try to mimic symptoms of a chronic illness doesn't work. If anything it might suggest that the sleep disruption in ME isn't behavioural nor is it amenable to the standard sleep hygiene guff because following the standard advice at best makes no difference but, usually, makes the ME patient worse.

 

This.

From all the nonsense in her book TC seems to honestly believe that CFs = feeling very tired & sleepy, and a bit achy, and generally mentally & physically sluggish. Plus anxiety.
It would be hysterical if it werent so catastrophically unfunny.

 

Don't you mean it would be functional..? We must keep up with the times.

 

When I wrote about the FINE study, I came across a presentation by Alison Weardon, the lead investigator, in which she described CFS as comparable to really bad jet lag. The FINE trial was also the one which generated a qualitative report that quoted one of the therapists or providers involved as saying something like "the bastards just don't want to get better."

https://www.virology.ws/2015/11/09/...-sister-trial-been-disappeared-and-forgotten/

 

The BPS "reasoning" is so simplistic.
If ME physiology was so straightforward everyone would get better, easily.

My daughter and I had jet lag following an overnight flight back from USA in 2018. (Longstanding friend in US who I hadn't visited for 30 years).
I was pretty good after my first good, long sleep, my daughter took a few weeks to recover to her usual (aka baseline as per clinics).

 

The hallmark of a true BPS zealot.

Take a symptom of an illness and make a confident declaration that it is comparable to something a healthy person experiences and recovers from.

This is then seen as proof the issue is behavioural and ignores that the same proof can be used to say the symptom is not behavioural as altering the sick person's behaviour doesn't significantly improve or cure, but often makes matters worse.

Attempt to hide the proof that you've interpreted the information wrongly by not gathering accurate and meaningful data on harms.

Also, rather conveniently, the comparison to something relatively trivial, though annoying, to a healthy person conveniently diminishes the impact that symptom has on the function and quality of life of the patient.

Surround yourself with people who will faithfully fail to ask any difficult questions, intimidate, smear and seek to damage the reputation of anyone cheeky enough to have an independent thought.

 

But do we ever get to honestly hear the counterpart to that, the people who were not helped or were made worse by it, but dismissed as simply not following the "expert" advice?