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

Yep. The ones on Bluesky were mentioning stuff like “psychological harm”, “psychological torture” etc.

But I don’t know what that actually translates to legally.

 

I'm not sure at this point we have a lot of legal ground or even willingness from potentially useful organizations to help. I mean some of you may know that recently the Hungarian ME/CFS consensus recommendation has completely misrepresented what the NICE guideline says (it said NICE still recommends exercise and still theorizes that deconditioning contributes to the disease, which is a complete lie).

I sent this to a few NGOs that deal with legal representation of disadvantaged groups/people (for example people with HIV, etc). I only got one reply that said this is a medical question and they are not interested in those. Even though this is a misrepresentation of what a prestigious medical authority says and it will affect many many people in the country. No, still a medical question, not a legal one.

So I don't expect a lot of action legally in connection with our disease at this point. Either not enough legal ground or not enough understanding of the problem.

 

Another excellent & well-argued rapid response (and, I think, the first cite for S4ME's PEM factsheet):

"Ignorance about post-exertional malaise and continued conflation of ME/CFS with chronic fatigue harms patients and stymies research progress" (Dom Salisbury)

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

 

Congratulations, @Trish!

 

I asked ChatGPT to write a critical response. After a few prompts, this is what it came up with:

To the Editor,​

The recent article, “Patients with severe ME/CFS need hope and expert multidisciplinary care” (BMJ 2025;389:r977), expresses concern for individuals living with severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). However, several claims within the piece lack support from robust clinical trial evidence and risk promoting interventions that may ultimately do harm.​

The promotion of multidisciplinary approaches, while well-intentioned, appears to rest on treatments such as cognitive behavioural therapy (CBT) and graded exercise therapy (GET), which have been the subject of substantial scientific and patient-led scrutiny. The 2021 National Institute for Health and Care Excellence (NICE) guideline (NG206) no longer recommends GET for ME/CFS, citing consistent patient reports of harm and a lack of high-quality evidence demonstrating sustained benefit [1].​

The PACE trial, previously used to justify the use of CBT and GET, has been widely criticised for its methodological flaws, including post-hoc changes to outcome measures and inadequate reporting of adverse events [2,3]. Reanalyses have demonstrated that the original claims of recovery were overstated, and many participants did not experience meaningful clinical improvement. Subsequent studies have highlighted that a significant proportion of patients report deterioration following GET, raising serious ethical and clinical concerns about its continued use [4,5].​

While the provision of compassionate care is essential, it must be underpinned by scientific integrity. It is psychologically harmful to suggest that patients can recover through their own efforts or attitude when there is no current curative treatment for ME/CFS and its biological mechanisms remain insufficiently understood. Implying that improvement depends on patient engagement with multidisciplinary strategies—without strong evidentiary support—risks placing undue responsibility on the patient, potentially leading to feelings of guilt, failure, and demoralisation when improvement does not occur.​

Patients with ME/CFS require honest, evidence-based information and access to supportive services that respect the severity and complexity of their condition. They also need significant investment in biomedical research to develop effective treatments. Offering hope that is not grounded in data may undermine trust and cause real psychological harm.​

References:​

1. National Institute for Health and Care Excellence (NICE). Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management. NICE guideline [NG206]. 2021.

2. Wilshire CE, Kindlon T, Matthees A, McGrath S. Can patients with chronic fatigue syndrome really recover after graded exercise or cognitive behavioural therapy? A critical commentary and preliminary re-analysis of the PACE trial. Fatigue. 2017;5(1):43-56.​

3. Geraghty KJ. ‘PACE-Gate’: When clinical trial evidence meets open data access. J Health Psychol. 2016;21(10):1176–1183.​

4. Vink M, Vink-Niese A. Graded exercise therapy for ME/CFS is not effective and unsafe. Healthcare (Basel). 2020;8(4):1-17.​

5. Twisk FN. A critical analysis of CBT and GET for ME/CFS. Neuro Endocrinol Lett. 2017;38(3):131-135.​

 

This would be a good place to quote that Swiss study by Rea Tschopp which found that being told your illness was psychosomatic was the main reason behind suicidal thoughs in pwME.

Ironically I think Garner, Miller et al actually cited that study in the original opinion piece (for different reasons obviously).

 

It really is heartwarming to see. Both the responses and the use of and reference to the S4ME fact sheet. Congratulations everyone involved and especially Trish.

 

Yes, excellent response once again from Michiel. Thank you.

My only very minor criticism is that I think the language could have been a little less conservative. Michiel writes: “This approach, however, is far from new and has been tested in randomized trials with limited success.” Whilst I appreciate the value in not overstating things, I think that is too generous to the authors. I might have said something like “with disappointing results”.

Some other excellent replies on there too. Thanks to all.

 

Yes, I think it would be useful if someone could submit a response making this point. If nobody else does in the next few days I may do it if/when I feel up to it, but would be pleased if someone else would like to do it.

 

I wonder if Peter Barry and Ilora Finlay could be persuaded to reply. If anyone else is writing, it might be worth citing their response to the JNNP anomalies article: https://jnnp.bmj.com/content/95/7/671

 

Can patients reply or is it just 'professionals'? Aware it's a long shot but my experience (like many others I'm sure) serves as a very direct rebuttal to the ideas expressed in this piece (although saying that I haven't made myself read the entire thing yet)

It might be valuble for doctors on the fence who read these rapid responses to know just how extreme the harm from these therapies can be, and how it is those who fully commit and trust who suffer the most.

Or perhaps like others have said we should just let these frauds enjoy their last moments in the sun.

 

Anyone can reply. Many of us on here who have had rapid responses and letters and articles published are patients with no medical or scientific qualifications. BMJ seems to publish nearly all rapid responses so it’s not a long shot. I’m sure people on here would be happy to give feedback on a draft if needed.

 

Thanks! Do you know if there is a time limit for responses?

 

I don’t think there is time limit.

 

It seems to me to be more of a case of "me, a horse, sees water, but, there, whiskey!, so, no water for me, only whiskey, sweet golden brain-addling whiskey".

 

Haven't heard about 'central sensitization' in a while, the label seems to have fallen out of fashion. First for 'functional this and that', and now it looks like it has quietly shifted towards "The Neuroscience", neuroplasticity and 'predictive coding'. All the same over-a-century-old idea with the same hat worn at a slightly different angle.

Both Brand NewTM and "rigorously tested in research and through decades of clinical experience"TM. Basically like the scion of a giant empire who is a dangerous maniac but every transgression and misbehavior is excused with "boys will be boys" and other crap.

 

It's hard to take a horse to water when people keep putting the cart in front of it.

 

Hm, I'd never heard of this group.

 

This is my gut feeling as well. I think it's very helpful to counter these things when they appear and post rapid responses and so on, but it's also important not presume that this one or the next one will really impact this ongoing struggle. Responding to each incident with maximal outrage doesn't seem like the best use of everyone's time and energy.