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

Why haven't people like Gladwell and BACME been publicly calling for CBT/GET to be dropped years ago and for the current NICE guidelines to be dropped until new guidelines are published?

Seems to me they only speak out now to save face/keep their jobs?

Or perhaps the pressure on them to maintain the status quo has been too great, however their first duty should have been to patients.

Could they not have come together and spoken out to protect patients? They should have.

I wonder if those in charge of these clinics should be replaced by new blood, by people untarnished with BPS view of ME/CFS and all that goes along with it.

I guess forty years of this disease and counting has made be pretty cynical of all who've made their careers out of these fraudulent treatments at the expense of so many.

 

Exactly. If they really had the integrity they pretend to show now, then they would how spoken out for what is right long before now.

 

Journalists were provided embargoed copies in advance of the release, so they could have stories ready when the guidelines were posted. The SMC would have been as well, so it's not surprising they would be able to organize the statements from Wessely etc beforehand--nothing remotely suspicious in that. Whether BACME saw it in advance or just had inklings of what was coming is a different issue.

 

Zugszwang. I came across this word in an article about something else recently, although I can’t remember what it was – probably politics/covid. I wonder if we were reading the same article.

 

https://www.s4me.info/threads/nice-...-10th-november-2020.17687/page-18#post-303214

 

In my view any of the people who were pro CBT & GET or who were responsible for delivering those treatments need to openly admit they were wrong and acknowledge the mistakes & misjudgements. If they're just letting it slide and hoping to quietly move on then they simply cannot be trusted.

I'm not being vindictive - it's more important we get decent support and, hopefully one day, treatment for pwME. This is more important than revenge and punishment however satisfied that might make me feel.

No, it's because these individuals have proven themselves so slippery over the years. The old " We said this but we meant that & by that we mean this" gibberish. Lift one rock and they simply slide seamlessly under another.

 

Were these BACME members of the NICE ME/CFS committee sitting with their fingers in their ears, shouting, 'La, la, la, I'm not listening', when the patient survey evidence was being discussed??? Sorry, for the outburst, but I'm feeling pretty fried thinking about the loopholes in the draft guidelines (definitely not the fault of the patient reps, who are Herculean heroes (and heroines) for achieving what they have done so far, considering the balance of members on the committee).

https://www.meaction.net/wp-content...-ME-services-Survey-report-by-MEAction-UK.pdf

 

Yup. There will be no smooth transition to the opposite with a "oops, oh well". Truth and reconciliation. Or ideally, truth and never hearing from those responsible ever again.

Many people were wrong, had no evidence, were told plainly, and did all of this anyway. They did harm in such a way that they cannot claim not to have known, many have publicly voiced their frustration at being told they were doing harm. There has to be a correction from it, reform, compensation and blame where it lays. Which isn't strictly at the hands of the BPS researchers, many other people, systems and institutions failed in allowing this astrology-level horseshit to harm millions.

Because this smooth transition attempt has already started. And there will be none of it, this is all too well-documented over decades, across multiple countries. This isn't about retribution, it's Justice, capitalized.

 

If course they were, metaphorically at least.

This is why, even if we haven't a hope of seeing real justice served, any of them who don't retract, renounce and correct their incorrect assumptions and conclusions of the past they cannot be trusted.

They will simply try to carry on doing what they've always done - hurting patients and getting away with it by changing their definitions more frequently than their underwear.

The patient reps have my undying gratitude but, however good a job they do & whatever the actual guidelines end up saying - even if they're better than we could expect or hope, we have to closely watch how that translates into clinical practice. This is purely because the likes of BACME are about as trustworthy as a double glazing salesperson trying to make their commission.

 

That is why we need to re-present the patient survey evidence (and any other relevant evidence) back to them as part of the stakeholder response. Because at least this time they will have to publish their response to the stakeholder comments, for the historical record.

 

Absolutely @Simbindi.

Get as much proof and evidence to back our case as we can in there. At least it's in record then and if they ignore it when releasing the final guidelines they can't claim ignorance later.

However, there's the letter of the thing and the spirit of the thing. The BPS mob don't play by the Marquis of Queensberry rules or any other. They have acted in bad faith in the past and they will in the future. The establishment have permitted that. They will continue to do that. We will need to make sure we watch for it and highlight it.

 

Merged thread
It seems that this is a prevalent theme that will form part of—or perhaps the basis of—BACME's approach in the future. This has been brought up in a few threads already (including in the discussion threads on the new draft NICE guidelines), but it's probably deserving of its own thread.

The recent BACME position paper (https://s4me.info/threads/bacme-pos...ronic-fatigue-syndrome-me-cfs-oct-2020.17360/) states that:
"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."

I think most of us would agree with the first paragraph. The issue arises when one extrapolates from dysregulation of bodily systems exists to here's a model for rehabilitation with a grounding in dysregulation principles.

Aside from not knowing what 'dysregulation principles' are, it would seem that the evidence underpinning a dysregulation model for rehabilitation of ME/CFS patients is extremely thin. This leads me to several questions:

1. Why should it be assumed that patients have the power to re-regulate their bodily systems—systems that may have gone haywire overnight, or may have been haywire for many years? We don't know why this dysregulation occurs, so why should it be expected that patients can reverse it?
   
2. Is there any evidence that this can be achieved in ME/CFS patients? How is this done?—it would seem the approach is to be guided self-management with behavioural changes (such as regulating sleep time and duration, for example). Interestingly, the word dysregulation does not appear in draft NICE guideline, except in a couple of evidence reviews that included one study looking at 'emotional dysregulation', which is of course different but uses the same terminology.
3. Is this model applied to any other illnesses? Related to (2), 'dysregulation' often appears in the context of psychiatric illness and mood disorder. BACME has been clear that they are talking about dysregulation of bodily systems such as the immune system and HPA axis, but is this association troublesome?
4. Above all, do we even need a model for illness and rehabilitation at this time, given we no so little about the etiology of this illness, and given the heterogeneity in patient's symptoms and illness course? What would happen if the clinics didn't adopt a specific model, and just focused on symptom management and support (where needed)?

 

This simply emphasises the fact that BACME do not understand the difference between a theoretical science base and an evidence base. A theoretical science base cannot be used in the clinic unless there is an evidence base to support it IN THE CLINIC. So this statement indicates very clearly that those in charge information at BACME still have no idea what they are doing.

All the answers to your questions @InitialConditions are the ones you suspect, I suspect.

Moreover, it looks very much as if some' virtue signalling's gain on in terms of saying 'ah yes we are terribly keen on all the biomedical complex systemic disease stuff so please come along and see what we have invented off the top of our heads to suit it.

 

Yes, it remains just a theoretical model. What benefit will inclusion of the 'biomedical complex systemic disease stuff' bring to the therapy program? aside from perhaps giving the clinicians a slightly better medical education of how individual symptoms may be explained by dysregulation of [insert system of your choice]. They're still not doing a damn thing to try and treat it!

 

I have it figured out. The dysregulation they mean must be biopsychosocial dysregulation. It's whatever you want it to be at the moment.

Sleep dysregulation? Yes, why not.

Dysregulation of effort perception? Sounds like a clever idea!

Dysregulated behaviour? We're really good at figuring this illness out, aren't we.

Dysregulated immune responses? Luckily we have psychoimmunology for that.

Dysregulated cellular metabolism? We don't really know what is meant but exercise is obviously the right answer.

Dysregulated physiological responses to exercise? Nothing our clinical experience hasn't equipped us to deal with. We're just that good.

 

It would be ironic MEAction were t send out a memorandum saying that they did not really mean all that stuff about complex disease with well proven immunological and metabolic changes and did BACME really believe it all because as far as they know scientists don't? They just know that you need evidence in the clinic.

 

If that's not enough, they can call it 'quantum resonant biopsychosocial dysregulation' plus any other scientifically-sounding words that are popular with marketers.

 

An additional problem is that ME seems to be a abnormal state that other processes in the body then try to maintain. Lots of us have had treatments that work great the first few times, and then they stop working and never work again. Something in our ME bodies responds to those treatments to make them stop working. How are patients supposed to overcome that adaptive process?