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

[Andy]

ME/CFS is a serious and complex chronic multi system illness that can profoundly affect the lives of people who develop it.

BACME fully supports research into the biological causes and mechanisms of the illness.

There is evolving evidence to indicate a dysregulation of multiple dynamic physiological systems in explaining the symptom picture seen in ME/CFS. Research has demonstrated changes in Immune System responses, Autonomic Nervous System function, Neuroendocrine pathways including the Hypothalamus-Pituitary-Adrenal axis along with cellular metabolic changes.

BACME supports clinicians to underpin rehabilitative and therapeutic processes with a grounding in dysregulation principles.

BACME does not support the deconditioning model of ME/CFS as a primary cause for the condition. It is recognised that deconditioning may be, for some, an additional complicating factor of living with any disabling chronic health condition.

BACME believes that patients should have access to the best available clinically effective treatments, therapy and support with rehabilitation to relieve, reduce and manage symptoms where possible. This will allow patients to make informed choices as to how to manage the impact of ME/CFS on their quality of life and optimise the potential for recovery.

https://www.bacme.info/sites/bacme.... on the Management of ME-CFS October 2020.pdf

Available directly from their home page, https://www.bacme.info/

My guess (I have no insider knowledge) is that this gives a strong indication of how the revised NICE guidelines are going to be. This looks like they are trying to reposition themselves in line with the changes in the guidelines while keeping hold of as much as they can of their previous position.

 

[ME/CFS Skeptic]

My guess (I have no insider knowledge) is that this gives a strong indication of how the revised NICE guidelines are going to be.

Agree but I really hope not. This isn't good enough and nonsensical.

I have seen the same argument in Belgium: they want to strip GET/CBT of its extreme and nonsensical aspects while maintaining that there is some evidence-base for graded activity or CBT for ME/CFS.

The fact is that those randomized trials of GET and CBT where about inflexible therapies based on the reconditioning model. So if you reject those models, you'll also have to reject the randomized trials. You can't have your cake and eat it!

 

[Sly Saint]

I don't see any real change in their position.

BACME does not support the deconditioning model of ME/CFS as a primary cause for the
condition

is this just playing with words; ie 'cause' as opposed to 'perpetuating'?

BACME supports grading activity strategies when delivered by an ME/CFS specialist clinician to
make increases and improvements in physical, cognitive and emotional function from an identified
stable baseline. BACME does not support inflexible Graded Exercise Therapy (GET) built on a
primary deconditioning model. A deconditioning based approach would involve an inflexible,
structured approach where regular increases in activity are encouraged regardless of how the
patient is responding.

so it's GAT instead of GET.

BACME supports the use of Cognitive Behavioural Therapy (CBT) strategies and other
psychological interventions with the aim of developing management strategies delivered by a
specialist ME/CFS clinician who has a good understanding of ME/CFS. BACME does not support
the use of inflexible CBT programmes delivered by practitioners who do not have a good
understanding of the biological aspects of ME/CFS.

so again its OK so long as it's done 'correctly'.

at least they have put their names to it (previously it was quite difficult to find out who the board members were).
I see there are two from Bristol

Peter Gladwell
BACME board member, Specialist Physiotherapist/Team Leader Bristol
Rhonda Knight
BACME board member Patient representative North Bristol NHS Trus

(Peter Gladwell being the main guide of AfMEs literature on pacing. )

 

[Trish]

BACME does not support the use of inflexible CBT programmes delivered by practitioners who do not have a good understanding of the biological aspects of ME/CFS.

That a double negative and therefore a double edged sword:

So does BACME support inflexible CBT programmes delivered by practitioners who do have a good understanding of the biological aspects of ME/CFS.

Or does BACME support the use of flexible CBT programmes delivered by practitioners who do not have a good understanding of the biological aspects of ME/CFS.

Or perhaps they mean both provisos must apply:
BACME supports the use of flexible CBT programmes delivered by practitioners who do have a good understanding of the biological aspects of ME/CFS.

Since nobody has a good understanding of the biological aspects of ME/CFS, the logical deduction of that linguistic contortion act is that BACME doesn't support any CBT done by anybody.

 

[Hoopoe]

My take. This position paper says some nice things to appease critics and then makes the same old errors.

The authors appear to believe that they understand the condition well enough to be able to design and deliver effective treatments. I think they're being disingenuous or naive.

They also appear to believe that there is sufficient evidence to say that correctly delivered CBT and GET are safe and effective. I think that means they can't tell reliable evidence from junk science.

Summary: the CBT/GET therapist association wants to continue giving CBT/GET to people and is happy to talk about dysregulated biological systems if that is what it takes.

 

[Simon M]

"BACME believes that patients should have access to the best available clinically effective treatments, therapy and support with rehabilitation to relieve, reduce and manage symptoms where possible."
The "clinically effective" bit might be a problem for them, whatever the rest of the language.

It does look promising that NICE will say something useful, at least about GET. And there will be a consultation process to address faux repositioning. Could get interesting.

 

[Jonathan Edwards]

This is an admission of complete failure to understand both the scientific background and the need for an evidence base for treatment. It reads like homeopaths trying to justify keeping there Royal Hospital open in the face of threats of closure. There are no validated treatments and BACME need to facie up to that.

I doubt this tells us anything much about NICE.

 

[cassava7]

The front page of the memo reads:

Our Mission is to support health care professionals to develop and deliver clinically effective and holistically informed practice for children, young people and adults with ME/CFS and primary fatigue conditions.

No need to read further: they still support the BPS model and its clinically uneffective practices, as the rest of the document confirms.

BACME supports grading activity strategies when delivered by an ME/CFS specialist clinician to make increases and improvements in physical, cognitive and emotional function from an identified stable baseline. BACME does not support inflexible Graded Exercise Therapy (GET) built on a primary deconditioning model

Just a few days ago, talking about long COVID on Twitter, Simon Wessely was arguing that GET was never about pushing through but that it should be flexible. This attempt to transition from GET to GAT, which is just as ineffective and harmful, is ridiculous.

BACME supports the use of Cognitive Behavioural Therapy (CBT) strategies and other psychological interventions with the aim of developing management strategies delivered by a specialist ME/CFS clinician who has a good understanding of ME/CFS.

CBT for ME instructs to keep pushing through symptoms and increase activity regardless. A clinician psychologist with a good understanding of CBT for chronic illnesses (i.e. coping with secondary psychological consequences) is safer and more effective than a "specialist" ME/CFS clinician delivering CBT.

Not sure what this says about NICE. It seems they will pull the plug on GET but they will keep CBT, as Dr Jo Daniels' recent tweet seemed to suggest (she is a member of the guidelines committee).

I have seen the same argument in Belgium: they want to strip GET/CBT of its extreme and nonsensical aspects while maintaining that there is some evidence-base for graded activity or CBT for ME/CFS.

The fact is that those randomized trials of GET and CBT where about inflexible therapies based on the reconditioning model. So if you reject those models, you'll also have to reject the randomized trials. You can't have your cake and eat it!

Now they can argue that trials for GAT and CBT with a "flexible" approach are required! They only need to rename them to something fancy and change the dressing on the word salad they use to explain the principles of GET and CBT for ME.

 

[Esther12]

Seems that this helps show how they think changes to NICE guidelines can be sidestepped to avoid any real change in how patients are treated. Given the way the system is stacked against us I think that there's a danger that new guidelines might help cover-up the problems with giving people like this money and leave new patients even less likely to be aware of the problems with them.

 

[rvallee]

OK. Now admit loud and clear that you were WRONG, this is not it. You pushed this model, despite countless complaints, despite there being no evidence for it, despite having to cheat simply to pretend there is something there. You were told it was wrong and you knew it was wrong, thought you'd figure it out along the way. As professionals it is not acceptable to just do a quick turnaround. You caused death, suffering and misery by pushing this. This blood on your hands is not going away. You have to say it. LOUD. Admit to being completely wrong.

And then say and do nothing. You will have nothing to do with this in the future, you do not have a basic understanding of what is going on and never will, the empty words here about CBT and whatever GAT is make it plain, you are unable to learn from experience, even with hindsight of having cause a massive disaster destroying millions of lives. Just. Go. Away.

 

[NelliePledge]

BACME position - guardians of the model retreat to the redoubt and don’t give up the fight for the true GET and the true CBT

 

[Simbindi]

CBT for ME instructs to keep pushing through symptoms and increase activity regardless. A clinician psychologist with a good understanding of CBT for chronic illnesses (i.e. coping with secondary psychological consequences) is safer and more effective than a "specialist" ME/CFS clinician delivering CBT.

Precisely! There is absolutely no need to have any 'specialist' training for therapists to give 'supportive CBT' for patients suffering from 'ME/CFS', beyond understanding how life-limiting all 'severe chronic illness' is. The only training that would be useful for them to have, is to understand that suggesting exercise as a coping mechanism or to help the M.E. patient 'feel better' is not appropriate.

Although, of course, 'supportive CBT' is a bit of an oxymoron, what most patients require is supportive counselling (if they lack the support of friends and family to offer supportive, non-judgmental listening and advice) and tangible practical support to manage their daily lives.

 

[cfsandmore]

Sir Simon Wessely is very cunning and updated his business model right before the public's eyes. He knew this was coming for some time.

The psychiatrists and psychologists are way out ahead of the patient advocacy groups. Have you noticed how easily and quietly the psychiatrists and psychologists updated their language to that of the patients and ME advocacy groups?

There are two approaches to CBT. The carrot and stick methods. Up first the stick.

BACME does not support the use of inflexible CBT programmes delivered by practitioners who do not have a good understanding of the biological aspects of ME/CFS.

Sir Simon Wessely deflects when confronted with using the stick approach on children with MECFS. Often times it is called tough love. Tough love is inflexible. BACME is saying the stick approach was incorrect.

BACME supports the use of Cognitive Behavioural Therapy (CBT) strategies and other psychological interventions with the aim of developing management strategies delivered by a specialist ME/CFS clinician who has a good understanding of ME/CFS.

Sir Simon Wessely proclaims to use the gentle non-aggressive approach. The grandfather teaching the child slowly and with lots of kindness. BACME is saying the carrot method is correct.

FYI: I was taught in CBT that when the abuser uses a mixture of kindness the psyche receives the greatest damage. I was told a story about how it was used on prisoners of war.

BACME does not support inflexible Graded Exercise Therapy (GET) built on a primary deconditioning model. A deconditioning based approach would involve an inflexible, structured approach where regular increases in activity are encouraged regardless of how the patient is responding.

Sir Simon Wessely told us he didn't use the stick approach when it comes to GET. Sir Wessely blocked me over mitochondria, but I saw a screengrab of this tweet.

My bolding.

BACME supports grading activity strategies when delivered by an ME/CFS specialist clinician to make increases and improvements in physical, cognitive and emotional function from an identified stable baseline.

Using activity is straight out of MECFS advocacy groups. Solve CFS has been using activity instead of exercise for over 30 years.

Dr. Leonard Jason's method is rejected. How do we know? Graded is the key. The psychiatrists and psychologists (specialist clinician) will use kindness and gentleness to persuade ME patients to slowly and gently increase activity. Trying to gradually force Dr. Janson's energy envelope to grow.

Rehabilitation is to be appropriately tailored to an individual’s needs and personal goals and provided within a holistic model. A flexible framework of monitoring and review is recommended and is best achieved by providing continuity of care.

The program of CBT & GAT will not stop quickly after a few months, you are in for the long haul. I would guess the program will be tired to financial benefits review. It will become tougher for UK patients to say NO to MECFS specialists. Patients will be in the program for life. Only restored health will free patients from the program.

We support the continuing development of specialist multi-disciplinary ME/CFS services and specialist clinicians to guide, support and advise patients towards optimal health, wellbeing, and recovery. This is a complex illness but given prompt specialised intervention we expect improved quality of life, understanding of living with the illness, and progress for each patient.

Isn't this the conclusion of the PACE Trial?

Psychiatrists and psychologists have a good business model. I bet NICE will buy right in, hook, line, and sinker.

 

[dave30th]

I have seen the same argument in Belgium: they want to strip GET/CBT of its extreme and nonsensical aspects while maintaining that there is some evidence-base for graded activity or CBT for ME/CFS.

The fact is that those randomized trials of GET and CBT where about inflexible therapies based on the reconditioning model. So if you reject those models, you'll also have to reject the randomized trials. You can't have your cake and eat it!

Exactly. It's ridiculous. "We don't agree with anything we said before, but we still believe in a softer version of our treatments to accomodate the change."

 

[adambeyoncelowe]

My guess is that this is actually about long COVID treatment in NHS fatigue clinics and not about the NICE guidelines at all.

NHS England is offering rehab clinics for long COVID, which this statement seems to create a rationale for. Long COVID patients also seem ambivalent about GET, and so this statement distinguishes rehab from GET. Ergo, the message, reading between the lines, is that rehab in fatigue clinics is fine for long COVID.

I don't think this should be assumed to be informed by the guideline, though perhaps it's a guess at what the guideline might include. Remember that sharing the guideline would get you kicked off the committee, and anyone who does so wouldn't get to input into the last round of edits after the consultation.

I don't think anyone would be stupid enough to do that, if they really wanted to influence the final guideline. Why would you work hard for two years to be heard, only to risk being kicked off at the last minute?

NICE knows who's associated with BACME on the guideline, so it wouldn't get past them. Hence why I think this is really about treating long COVID patients in existing 'CFS/ME' clinics.

 

[Adrian]

It is a really poor statement from them. Firstly they describe it as a position paper when really it is a one page statement with no attempt to relate their beliefs to the scientific literature or to try to justify what they are saying. This comes across as making them look weak, lacking in knowledge and unscientific - and certainly not the type of group that should be leading a professional body. (We would be disappointed if a student put together such a 'position paper'

Secondly it comes across as business as usual - change the words but to the same stuff. So GET (which always talked about activity) becomes GAT and hence it isn't clear what they see as the difference. They do talk about the deconditioning model but not the consequences, differences and implications. Also they try to label coping strategies under CBT and psychological treatments - they would be much better talking about say OTs helping with coping through looking for adaptations people can make (and suitable equipment) to make life easier. The concentration on CBT here suggests routine and a belief that it is necessary rather than occasional when people are having mental health issues coping.

It doesn't come across as well informed, professional and reflective on the evidence and therefore looking for good approaches.

 

[Milo]

Very honestly, if you do not have evidence that anything is working in terms of treatments, stop telling patients they need to try alternative therapies and supplements, because there is no evidence for that either. And if you are advocating for physician led group therapy and CBT, you better make sure that these sessions do not become all of what is offered.

At this point in time, when many patients have been sick for years if not decades, and with a new pandemic that will surely bring a new wave of patients, it is past time to find out what’s wrong, and what to do about it instead of teaching what patients are likely to know already.

 

[Amw66]

The king is dead... long live the king

 

[Milo]

One more comment: when health care systems adopt the bio-psycho-social model of care, it is very difficult to exit that model, which means it condemns patients to not get any other ‘care’ than education About their disease and CBT to learn to cope.

 

[Trish]

My guess is that this is intended to reposition themselves as the experts who are best placed to continue to lead whatever service the new NICE guideline recommends.

They will be well aware that GET won't be acceptable to patients and has probably been removed from the guideline, so want to show that they have expertise in ME 'rehabilitation'. Hence the slight shifts in terminology from GET to grades activity, and the emphasis on no longer accepting the deconditioning model. They want readers to think they know what they are talking about.
It's a blatant statement of intent to keep their jobs.