An Open Letter to BACME re ME/CFS Guide to Therapy 2025

[Sasha]

Dr Sivan has responded again. I am not sure what, if anything to say at this point.
It is defined by WHO as "set of interventions to optimise functioning or improve functioning", and that is 90% of any healthcare activity. A person has hip replacement to reduce pain and improve function - that is rehabilitation. A person with cancer has tumour debulking and chemo for improving symptoms and function - that is rehabilitation too.

I sent a brief second reply to Dr Sivan just suggesting he read this thread.

If he does (particularly if he joins in), I'd be curious to know what is in the 10% of healthcare activity that lies outside his definition of rehabilitation.

 

[Jonathan Edwards]

https://web.archive.org/web/2014081...al.net/downloads/CFS patient presentation.pdf

Thanks. I have never had sight of that. It is quite extraordinary.

So the recent BCAME Guide to Therapy 2025 is just a maximal watering down of the same fiction, still designed to 'educate' patients into recovery. Like the therapy itself, it barely has any content but still goes through the motions of pretending that there is some expertise to offer.

The historical perspective is very telling.

 

[bobbler]

If he does (particularly if he joins in), I'd be curious to know what is in the 10% of healthcare activity that lies outside his definition of rehabilitation.

Palliative?

Ok that’s interesting

I just looked the question of what % of medicine is palliative and even ai ducked that question with ‘it’s an area not a fixed percentages’

But the went in to describe it

And that definition explicitly talks about pain and quality of life and how it [palliative medicine] is commonly given alongside life saving/changing cures.

I don’t know if it’s that the layperson definition assumption of palliative of mine or in uk is just now wrong then or if the Uk health system is out of kilter with other countries in having a different definition of what palliative medicine is

But I was surprised by this - as its focus includes treating serious illnesses alongside curative or life-changing medical treatments. Rather than being limited to ‘end of life’

 

[Utsikt]

https://web.archive.org/web/2014081...al.net/downloads/CFS patient presentation.pdf

Yikes! Apparently, ME/CFS is just what happens when you don’t sleep enough!

So let’s put this altogether.

Your bottom line problem is :

( Point to notes to draw all points together )

The body clock has lost control of body rhythms.

A sleep disorder develops.

With Daytime fatigue.

And with these other rhythms affected.

It’s hard to be as physically active.

Which over time leads to deconditioning of the heart, lungs and muscles.

Daytime fatigue and deconditioning, frustration and striving to get back into life arousers the nervous system and produces adrenaline which hits the patient’s weak spots (heart, muscles).

These are the problems.

Even if we ignore how wrong all of this is, there is something deeply unethical about telling people that they already know that at treatment they are trialling is guaranteed to work:

ROUSING REASSURANCE

From the moment you walk out of this room your recovery is beginning.

Every exercise is strengthening your body.

Exercises need to be paced.

To do too much will drain your powerhouses.

Stop before you hit the brickwall.

There is no disease.

Go for 100% recovery.

 

[Jonathan Edwards]

It is unbelievable that anyone should have fabricated all that FINE stuff.

Is there any way of knowing who was responsible for writing it?

 

[Nightsong]

Is there any way of knowing who was responsible for writing it?

PDF metadata shows the Author field as being "Aintree Hospitals NHS Trust". It may have been Dr Powell, as she is listed as the author of the FINE patient manual.

I can't find archive.org links for these but here are the patient manual and a presentation for therapists that were previously available to download from the trial site (long since defunct).

 

[rvallee]

Where did it say that exactly?

It's quoted by @dave30th as being from a 2004 presentation, but it looks like fine-trial.net no longer works. Could be on the internet archive.

Anyway, lots of quotes to that effect elsewhere. Most of Wessely's early writings revolve around that notion.

 

[Jonathan Edwards]

The FINE authors seem to be all psychologists and academic GPs, including Chew-Graham?
I wonder where the pseudophysiology came from. It may have come from the Liverpool muscle unit I guess.

 

[Jonathan Edwards]

PDF metadata shows the Author field as being "Aintree Hospitals NHS Trust". It may have been Dr Powell, as she is listed as the author of the FINE patient manual.

OK it looks as if this is from Dr Pauline Powell who worked with Richard Edwards in the Liverpool muscle unit. So this comes from Richard's work after leaving UCL. I can understand that he concluded that there was deconditioning but this document seems to go beyond anything I would have expected Richard to have wanted to justify. I need to look more carefully.

 

[MrMagoo]

Palliative?

Ok that’s interesting

I just looked the question of what % of medicine is palliative and even ai ducked that question with ‘it’s an area not a fixed percentages’

But the went in to describe it

And that definition explicitly talks about pain and quality of life and how it [palliative medicine] is commonly given alongside life saving/changing cures.

I don’t know if it’s that the layperson definition assumption of palliative of mine or in uk is just now wrong then or if the Uk health system is out of kilter with other countries in having a different definition of what palliative medicine is

But I was surprised by this - as its focus includes treating serious illnesses alongside curative or life-changing medical treatments. Rather than being limited to ‘end of life’

Yes I understand “to palliate” but I’ve been around a lot of medics. I wouldn’t say it in front of a HCP treating me. I dropped anthropometric in by mistake the other day. Fortunately it went right over their head.

 

[MrMagoo]

It’s an interesting way of looking at it, so I am deconditioned, because I’m severe, but I cannot recondition, because I’m severe. Then there are people, who are less severe and are not deconditioned, so don’t need to recondition. Maybe they think there’s some magical person that is half severe and half not severe so these cancel each other out and rehabilitation becomes appropriate?

As for what I’d do in a fire, probably try to crawl out the window and hope I didn’t fall off the roof while curled up in the resultant mess. I’d be screwed. As I would in most circumstances and often am. Which is why I need real practical help not someone telling me I need rehabilitation!

I assume with a fire it goes one of two ways - crazy superhuman adrenaline ability to escape, or not.

 

[MrMagoo]

If he does (particularly if he joins in), I'd be curious to know what is in the 10% of healthcare activity that lies outside his definition of rehabilitation.

I hope it’s Botox. My guy has retired.

 

[JellyBabyKid]

There is no disease.

Or there is currently no suitable test?
Absence of evidence is not evidence of absence

Go for 100% recovery.

If 100% recovery is possible, according to this, why do definitions of recovery so often equate to "adapt to a smaller life" instead of the dictionary definition;

recovery; a return to a normal state of health, mind, or strength.

 

[V.R.T.]

Yikes! Apparently, ME/CFS is just what happens when you don’t sleep enough!

Even if we ignore how wrong all of this is, there is something deeply unethical about telling people that they already know that at treatment they are trialling is guaranteed to work:

This makes me want to be sick.

 

[Hutan]

We have some threads on the FINE Trial:

Fine Trial Patient Booklet 29 04 05 Pauline Powell
which notes that this was the trial where a supervisor was concerned about some of the therapists getting angry at the patients for not getting better:

There are indications that this has happened, such as a paper from the FINE trial which quotes a supervisor saying: “There have been one or two times where I have been worried because they have got angry at the patients…that anger has been communicated to the patients. Their frustration has reached the point where they sort of boiled over… there is sort of feeling that the patient should be grateful and follow your advice, and in actual fact, what happens is the patient is quite resistant and there is this thing like you know ,“The bastards don’t want to get better””

Fine Trial Step Data Reeased in 2017
@Woolie's summary of the trial:

The Fine trial (PACE’s ‘sister study’, looked at more severe patients):
Nurse led, home based self help treatment for patients in primary care with chronic fatigue syndrome: randomised controlled trial.
Wearden AJ, Dowrick C, Chew-Graham C, Bentall RP, Morriss RK, Peters S, Riste L, Richardson G, Lovell K, Dunn G.
BMJ. 2010 Apr 23;340:c1777.
link to article The published study protocol is available here.

This trial has been called the “sister trial” to PACE. Nearly 300 individuals diagnosed with Oxford-defined CFS (which considers only fatigue) took part, including a sizeable number described as “non-ambulatory”. The group was, on average, more severely affected than the group that participated in PACE. Participants were assigned to three groups: a) pragmatic rehabilitation; b) supportive listening; or c) medical treatment as usual. The two therapy programmes consisted of 10 sessions and were delivered at home by general nurses. At the completion of the programmes, self-assessed fatigue – but not physical function - was marginally better for the pragmatic rehabilitation group than for the other two groups. However, at the trial’s primary endpoint which was a year later, there were no longer any significant group differences.
A 2015 paper attempted to explore the psychological factors that predicted improvement at the primary endpoint (which is puzzling, given that the trial did not yield any reliable treatment effects).This also reported that there were no group differences on an objective measure of fitness (based on the step test).

 

[Felis Catus]

If he does (particularly if he joins in), I'd be curious to know what is in the 10% of healthcare activity that lies outside his definition of rehabilitation.

Might be prevention, using the same approaches - sleep hygiene, exercising, hydration and positive thinking. It's almost unbelievable how convenient and mighty those methods are.

 

[dave30th]

It's quoted by @dave30th as being from a 2004 presentation

Alison Wearden compared it to "very bad jet lag" in one presentation, if I remember correctly. This was the post I wrote about FINE shortly after I wrote my initial investigation of PACE.

I've also posted this interview that I did with Jonathan earlier today:

Trial By Error: Interview with Jonathan Edwards about "Therapy Guide" from British Association of Clinicians in ME/CFS | Virology Blog

By David Tuller, DrPH The British Association of Clinicians in ME/CFS, known as BACME, defines itself as “a multidisciplinary organisation providing informa ...

virology.ws

 

[bobbler]

Might be prevention, using the same approaches - sleep hygiene, exercising, hydration and positive thinking. It's almost unbelievable how convenient and mighty those methods are.

and I guess prevention that involves actual medical care like freezing off moles that might turn cancerous and other 'pre-cancer' type things, and screening?

Of course depending on how ambiguous one wants to be on how they draw a definition and say one thing is linked or comes under because it is in the same department or would be under x if it progressed then almost anything can get argued to be under some broad definition of if rehabilitation 'helps a better life' type widening of it.

But that's not the same as what actual things might a department of physical and rehab medicine offer themselves. And whether the rehab without replacing the hip is worse than replacing the hip and not having the physio after and how 'much' if we are talking % of medicine each then counts for. Is it done by 'contact hours' or more like a 'unique user' rather than 'unique visits'

But here I am taking the fishing bait of the distracting reply.. lots of interesting individual separate threads perhaps to be created off that?

 

[Sean]

Or well. That's another thing that is never part of the discussion.

I could technically do a work day. Maybe even a work week. Just don't expect me to deliver anything. I can be there. I can make it look like work, but both the performance output and quality would be atrocious. And it would fall over time, to the point where I would no longer be able to be present, but even the very first things I could do would fall well short of my normal performance, let alone my best performance, all of which is far below what any employer would pay a salary for.

This is usually what they lump under 'perfectionism'. We expect to perform at a normal rate, with enough left to live at least a quiet life. They think our expectations are that we expect to perform super-humanly, or something

This.

That was mostly Wessely's preferred framing.

The basic claim from the psychosomatic club has always been that the core – indeed defining – pathology in ME/CFS is the 'perpetuating' part of the 'Predisposing, Precipitating, Perpetuating' model, and that it is entirely psycho-behavioural, with no underlying primary biological pathology, and the predisposing and precipitating parts are incidental, and can be just about anything or even nothing.

Thanks. I have never had sight of that. It is quite extraordinary.

So the recent BCAME Guide to Therapy 2025 is just a maximal watering down of the same fiction, still designed to 'educate' patients into recovery. Like the therapy itself, it barely has any content but still goes through the motions of pretending that there is some expertise to offer.

The historical perspective is very telling.

One of the starkest and most disturbing truths about this whole shitty saga is that every detail you learn of its sordid history just makes the story worse. It never mitigates the culpability of the main offenders. There are no redeeming features.

Even if we ignore how wrong all of this is, there is something deeply unethical about telling people that they already know that at treatment they are trialling is guaranteed to work:

It is nothing less than brazen scientific, medical, and moral fraud, with horrendous consequences for patients.

 

[bicentennial]

Dr Janet Scott who is leading the NHS highland longcovid / ME care. I can't find a direct email for Her but somebody might be able to get it off LinkedIn. Thank you to all the authors for this epistle.

On Orcid

Orcid verified email addresses:

janet.scott3@nhs.scot

Covid Recovery Service and Long Covid clinic

News and research from NHS Highland's Covid Recovery Service

https://www.gla.ac.uk/schools/infectionimmunity/staff/janetscott/

janet.scott@glasgow.ac.uk

2025-02-01 to present:
- WHO Long Covid Informal Working Group
(Clinical Characterisation Committee)

2025-02-01 to present:
- WHO Long Covid Training Steering Committee
Writing team for WHO Academy Long Covid training module (WHO Academy)

2025-07-15 to 2026-03-31
Clinical Lead National Strategic Network for long term effects of Covid-19 (National Services Scotland) Service

on Research Gate