Patients with severe ME/CFS need hope and expert multidisciplinary care, 2025, Miller et al

[forestglip]

For what it's worth, the author of the "AI-like" RR responded:

Thank you for your message. I can confirm that the three rapid responses were indeed authored by me. Although these topics fall outside my core research, I occasionally contribute to broader discussions in health communication and public health policy―especially when invited by colleagues to share practical insights. I hope this clarifies the matter; please let me know if you need any further information.

 

[Joan Crawford]

Rapid response published today:

https://www.bmj.com/content/389/bmj.r977/rapid-responses

Lack of definition of cardinal features of ME/CFS, use of subjective outcomes, and bias in opinion piece

Dear Editor,

In their opinion piece, Miller, Symington, Garner, and Pedersen [1] do not define or acknowledge post exertional malaise (PEM) along with post-exertional symptom exacerbation (PESE) as the cardinal and unique features of ME/CFS (WHO, G93.3), differentiating this from chronic fatigue (CF, WHO, F48.0). Conflating the later with the former reduces the validity and therefore generalisability of their arguments.

Severe ME/CFS is defined by NICE (2021) [2] as: “People with severe ME/CFS are unable to do any activity for themselves or can carry out minimal daily tasks only (such as face washing or cleaning teeth). They have severe cognitive difficulties and may depend on a wheelchair for mobility. They are often unable to leave the house or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed and are often extremely sensitive to light and sound”.
What Severe ME has in common with wider, less reliable general concepts of the diagnostic category chronic fatigue is impossible to ascertain with any accuracy, clinician relevance or coherence.

The authors of the Leeds inpatient facility use subjective outcome measures to evaluate the effectiveness of their service. For example, the primary outcomes measure used is the Clinical Global Impression (Improvement) Scale - CGI-I. This “is established by consensus within the multidisciplinary team, at the point of discharge” (Leeds, 2021) [3], not by the patients. Further, there are no objective outcome measures used, for example, “….the unit is ideally placed to help patients re-engage in normal activities in the wider community as and when possible and appropriate.” The readers are not appraised of what objective, normal activities in the wider community patients were they able to do post admission. Were they, for example, able to return to work, study, caring responsibilities for children and grandchildren, to walk unaided, exercise, or self-care?

As the number of patients who completed further subjective questionnaires was only N=9, it is hard to draw any credible conclusions from the authors’ arguments from this small sample. The risk of expectation bias and placebo effect using such measures is high. These issues have been raised multiple times specifically in relation to ME/CFS (Journal of Health Psychology (2017) – Special issue on the PACE trial) [4].

Patients and clinicians need objective, real world evidence of consistent improvement and recovery rather than subjective opinions. This ensures that treatment approaches are supported by measurable outcomes which can effectively guide patient care and clinical practice. Thorough and systematic reviews by the IOM (2015) [5] and NICE (2021) [2] are clear that this objective, real world evidence does not currently exist.

It is incorrect for the authors to state, “the UK is following an outdated model, leading NICE to disallow cognitive approaches to help recovery or bespoke programmes designed to increase activity.” On the contrary, NICE (2021) [2] encourages supportive cognitive approaches as appropriate, depending upon the level of severity and highlights that the use of such should be personalised to the individual's needs and not based on the assumption that ME/CFS is caused by incorrect beliefs or behaviours, because that is an honest appraisal of the evidence base.

1. Miller, A; Symington, F; Garner, P; Pedersen, M. Patients with severe ME/CFS need hope and expert multidisciplinary care. BMJ 2025;389:r977. doi.org/10.1136/bmj.r977
2. NICE Guideline on ME/CFS: Diagnosis and Management [NG 206]. Oct 2021. Downloaded from, https://www.nice.org.uk/guidance/NG206
3. Leeds and York Partnership NHS Foundation Trust. National Inpatient Centre for Psychological Medicine: annual review 2020-21. May 2021. https://www.leedsandyorkpft.nhs.uk/our-services/wp-content/uploads/sites...
4. Marks DF. Special issue on the PACE Trial. Journal of Health Psychology. 2017;22(9):1103-1105. doi:10.1177/1359105317722370
5. Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; Board on the Health of Select Populations; Institute of Medicine. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington (DC): National Academies Press (US); 2015 Feb 10. PMID: 25695122.
Competing interests: No competing interests

 

[Trish]

Thank you, @Joan Crawford. That's an excellent response. I'm particularly pleased to see you clearly picking apart the Leeds evidence.

 

[Sasha]

Further, there are no objective outcome measures used, for example, “….the unit is ideally placed to help patients re-engage in normal activities in the wider community as and when possible and appropriate.” The readers are not appraised of what objective, normal activities in the wider community patients were they able to do post admission. Were they, for example, able to return to work, study, caring responsibilities for children and grandchildren, to walk unaided, exercise, or self-care?

Well done, @Joan Crawford!

This bit made me wonder whether it would be possible for a research group to do a post-treatment, possibly long-term follow-up audit of any of these clinics' patients. Such patients are in an extremely vulnerable position when their clinicians are asking them whether their BPS therapies have helped them. Honest answers seem unlikely to me, and I see a big need for patients to be able to say what they really thought about their treatment - especially once they've had long enough to really see the harms.

 

[Utsikt]

For what it's worth, the author of the "AI-like" RR responded:

Se they shared «practical insights» based only on the literature of the original article, about something they have no expertise in, and at the request of «colleagues»?

 

[Utsikt]

For what it's worth, the author of the "AI-like" RR responded:

Would you be able to ask them who requested that they responded?

 

[Joan Crawford]

Well done, @Joan Crawford!

This bit made me wonder whether it would be possible for a research group to do a post-treatment, possibly long-term follow-up audit of any of these clinics' patients. Such patients are in an extremely vulnerable position when their clinicians are asking them whether their BPS therapies have helped them. Honest answers seem unlikely to me, and I see a big need for patients to be able to say what they really thought about their treatment - especially once they've had long enough to really see the harms.

I am sure that an organisations such as the National Audit Office could be looking at this.

My colleague Mike Scott tried re IAPT. Perhaps the message is getting through - IAPT's budget has been cut by 20% in current NHS shake up.

 

[Sasha]

I am sure that an organisations such as the National Audit Office could be looking at this.

That's an interesting suggestion. They include health and social care as a topic (presumably through a 'value for money' lens). A quick look at the first page of such projects doesn't throw up anything similar to what we'd need but I don't have the energy to look further. I'd like to get a sense of whether they'd have the competence to tackle such an area, and without BPS influence and interference. I wonder if they'd work with us? Or at least be guided in what searching questions to ask?

The whole thing really has been a massive waste of public money, quite apart from the destruction of health.

My colleague Mike Scott tried re IAPT. Perhaps the message is getting through - IAPT's budget has been cut by 20% in current NHS shake up.

Did he get the NAO to look at it?

 

[forestglip]

Would you be able to ask them who requested that they responded?

Response:

This response were written at the suggestion of a colleague involved in public health advocacy, who was coordinating an effort to raise awareness around the topic. While I was not directly commissioned by a formal organization, I agreed to contribute based on my background in health communication and interest in responsible discourse on underrepresented conditions such as ME/CFS.

 

[Utsikt]

Thank you.

Response:

I take this to mean «I’m happy to put my name to anything of asked to do so». It’s also a non-response.

But if true, someone are working on a PR campaign.

 

[InitialConditions]

Response:

Thank you.

I take this to mean «I’m happy to put my name to anything of asked to do so». It’s also a non-response.

But if true, someone are working on a PR campaign.

These are 100% AI responses. I stand by my claim that these are not real people.

 

[Joan Crawford]

Did he get the NAO to look at it?

Not sure. It was a while back.

 

[hinterland]

For what it's worth, the author of the "AI-like" RR responded:

Thank you. I agree this does look awfully like an AI-generated response again.

 

[rvallee]

Good rr from a now medically retired former NHS consultant in rehabilitation: https://www.bmj.com/content/389/bmj.r977/rr-12

Good one. Those are important:

My deterioration occurred despite a strong belief in the importance of exercise and rehabilitation background

Unfortunately, psychobehavioral quacks do not respect the scientific method and its need for falsification, because they hold irrational beliefs. If all it took was beliefs, then all who believe would do it easily. But they are not serious people and so they do not care. What's more disturbing is that the rest of the profession is OK with this blatant BS.

Bed rest and sensory deprivation are not a choice that severely unwell patients can avoid

Also very important, on the topic of beliefs. The quacks have those beliefs, that this is a choice, and those beliefs have in turn become commonplace in the profession. Those are wildly irrational beliefs. Beliefs have no place in medicine. All this talk of beliefs is actually a sign of a severely dysfunctional profession that is incapable of dealing with the limits of its expertise. It's what you find not when a system has completely lost its connection to reality, but after it's been so long that it can no longer reconnect to it, no matter how blatant, even ostentatious, the harmful consequences are.

This can accurately be compared to prosperity gospel, a religious business movement that preaches how praying for wealth will be richly rewarded. As long as you donate as much as you have to the preacher, because it is that that you will get back a million-fold. And if you don't get rich, well you didn't believe in it enough. It's exactly the same thing. It's a giant scam.

Although the general evidence-based medicine can better be described as "Imagine a world"-based medicine (movie trailer voiceover: "imagine a world in which you can imagine a world in which you are not ill, then you will no longer suffer from the illness you incurred on yourself by imagining a world in which you have an incurable illness"), the clinical approach is best described as Goldilocks-centered medicine.

If you did not recover, it's because you didn't do it "just right". You may have overdone it, you may have underdone it, you didn't do it "just right". If you believed you would recover, but didn't, you didn't believe in it "just right". If you did not believe you would recover, and did, you did it "just right", even if you did the exact opposite of what they baselessly assert. If you did not believe you would recover, and did not, you didn't do it "just right".

What is the "just right" way? The one that leads to recovery. Whatever it is. Could be taking a hobby. Talking to strangers. Exercising more. Eating less. Working more. Playing less. Whatever it is, you need to it "just right", or it will fail. You can do the "just right" way on your own, or you may need guidance, but if you don't do it the "just right" way, it won't work. Even if you follow everything they tell you, it's irrelevant anyway.

And you know you have not done it the "just right" way if you don't recover. And if you try it all over again and it "works" (i.e. the passage of time did its thing to a natural recovery, how it actually happens), then it was always the "just right" way and you were just not ready for it. And if you did recover, and relapsed, then it wasn't "just right" yet, or you weren't yet ready for it yet. And if you do recover and relapse and did all the same things and it fails, then it can't have been "just right", you will need guidance, or maybe thoughts and prayers. Or whatever.

Any serious professional is expected to be angry at bullshit like this being involved in any part of their job. And yet it is a requirement in the medical profession. What a freaking disaster.

 

[rvallee]

I’m glad she called them out on «finding their own path». Ironically, what they mean by that is «follow our path, and only our path». Orwell might have a thing or two to say about that..

Just like the "free speech" crowd: their right to speak freely, even talk over you, and your right to listen to them, agree with them, and shut up.

 

[rvallee]

Well done, @Joan Crawford!

This bit made me wonder whether it would be possible for a research group to do a post-treatment, possibly long-term follow-up audit of any of these clinics' patients. Such patients are in an extremely vulnerable position when their clinicians are asking them whether their BPS therapies have helped them. Honest answers seem unlikely to me, and I see a big need for patients to be able to say what they really thought about their treatment - especially once they've had long enough to really see the harms.

I don't see any possibility that the clinics would agree to this.

They know their stuff is BS. They still believe in it, but think of it like someone selling a safety device who would never in a million years trust the device with their own life or that of their children.

It still should happen, so it would take that old long-forgotten concept called oversight, where someone above says to someone under their jurisdiction to shut up and comply, but I can't see that happening either.

 

[hotblack]

These are 100% AI responses. I stand by my claim that these are not real people.

Maybe we should focus on critiques of content rather than questioning if people are or are not people?

 

[rvallee]

Trying to think of the health equivalent of Prosperity Gospel and I think that Vitality Gospel captures it well.

 

[InitialConditions]

Maybe we should focus on critiques of content rather than questioning if people are or are not people?

I wouldn't waste time on content created by AI. The content adds nothing to the conversation because it's all generic stuff with a few things about telemedicine.

 

[Peter T]

I find myself incredulous that anyone one whose opinion piece was so effectively shredded by the rapid responses could feel anything other than excruciating embarrassment.

Obviously this is not the case, but despite the repeated precedents from PACE onwards of BPS advocates incapacity to understand or acknowledge incontrovertible critiques, I still can not understand such wilful blindness.

[edit - corrections in orange including a significant ‘not’]