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

[hinterland]

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

But I think it does matter. If there are fake actors involved with ulterior motives it undermines the integrity of the whole process. Most people reading that response will feel that there’s something off about it. This could cause them to lose motivation and become less receptive and open to genuine responses. It's demoralising for real people who have gone to the effort of writing genuine, informative and insightful responses.

 

[hotblack]

My point is about the use dehumanising language particularly on top misunderstandings of other people and in this case cultures and countries. As soon as you take a disagreement and instead dismiss because others are not or are less than human I am concerned we are slipping into dangerous territory. I hope people can be mindful of this.

 

[InitialConditions]

But I think it does matter. If there are fake actors involved with ulterior motives it undermines the integrity of the whole process. Most people reading that response will feel that there’s something off about it. This could cause them to lose motivation and become less receptive and open to genuine responses. It's demoralising for real people who have gone to the effort of writing genuine, informative and insightful responses.

That's how I feel after spending time on a response. It's clear that the BMJ does not screen these responses, even minimally, despite having a letters editor. I get that none of this is peer-reviewed, but it does undermine the whole rapid response thing if non-genuine (whether produced by a bot or a real person using AI) responses are published.

My point is about the use dehumanising language particularly on top misunderstandings of other people and in this case cultures and countries. As soon as you take a disagreement and instead dismiss because others are not or are less than human I am concerned we are slipping into dangerous territory. I hope people can be mindful of this.

I don't really follow what you're saying here. I can't tell if this is aimed at me or not. I suspect you might be saying I've dismissed the comment because it's from a Chinese person (or bot, or AI, or whatever).

To be clear: I'm about 97% sure that this is not a genuine response, and that is based on my assessment of numerous factors, including spending an hour last night delving into this person's publication list and other details available online. The fact a Chinese address — which doesn't even seem correct — was given is one of those factors. That's because China has a problem with paper mills and fraudulent / fake science, and this can extend to journal commentaries and responses because these can often be classed as publications. The scale of this problem is not appreciated by the general public https://www.ft.com/content/32440f74-7804-4637-a662-6cdc8f3fba86

I don't want this thread to stray further from the main topic, so I will not comment further on the response from 'Xu Qi'.

 

[Utsikt]

As soon as you take a disagreement and instead dismiss because others are not or are less than human I am concerned we are slipping into dangerous territory.

In a post-AI and papermill world, I think it’s paramount to be able to question the authenticity of media.

I don’t see that as questioning the degree of humanity of people, rather it’s questioning if the output we see is a result of humans or if it’s a result of AI. Any human and culture can use AI.

In this context, dismissing something that is reasonably likely AI, is warranted because we have limited time to invest in the things we engage with, and AI can be used to produce a practically infinite amount of media. If we can’t sort and prioritise, we will essentially dehumanise ourself by denying ourself intellectual and meaningful interaction with other humans at the cost of interactions with machines.

Regardless, the AI-red flags for this comment; completely off topic for the author, only citing references from the original article, and making arbitrary connections to unrelated subjects like tele-medicine, makes it reasonable to dismiss the comment for other reasons; as a PR favour (like the author said themselves), or just publication-padding. So the conclusion is much the same.

 

[MBailey]

It's clear that the BMJ does not screen these responses, even minimally, despite having a letters editor.

Just to be fair to The BMJ*, they do screen at least some of the responses. Our (MEAction UK) response had a bit of back and forward with requested edits and removal of sections from the BMJ over areas they thought were likely to:

1. Cause distress (there was originally a bit more in there around Maeve) and
2. Several parts they suggested would be defamation of the authors (especially where we suggested they were not evidence based and promoted misinformation).

We pushed back on some of the wording and they did compromise slightly.


* Not really sure why I'm being fair to them...

 

[InitialConditions]

Just to be fair to The BMJ*, they do screen at least some of the responses. Our (MEAction UK) response had a bit of back and forward with requested edits and removal of sections from the BMJ over areas they thought were likely to:

1. Cause distress (there was originally a bit more in there around Maeve) and
2. Several parts they suggested would be defamation of the authors (especially where we suggested they were not evidence based and promoted misinformation).

We pushed back on some of the wording and they did compromise slightly.


* Not really sure why I'm being fair to them...

Yes I saw that your comment was submitted several days ago and thought that they may have screened it. But they don't seem to screen everything, nor do they seem to make appropriate edits, such as to obvious typos.

 

[Utsikt]

Just to be fair to The BMJ*, they do screen at least some of the responses. Our (MEAction UK) response had a bit of back and forward with requested edits and removal of sections from the BMJ over areas they thought were likely to:

1. Cause distress (there was originally a bit more in there around Maeve) and
2. Several parts they suggested would be defamation of the authors (especially where we suggested they were not evidence based and promoted misinformation).

We pushed back on some of the wording and they did compromise slightly.


* Not really sure why I'm being fair to them...

Good luck arguing legal defamation based on the things you describe! Apparently, the BMJ doesn’t support free speech.

 

[JellyBabyKid]

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.

Their response always seems to be incoherent anger and attack, though - and getting more and more mad at the patients - they people they claim they want to help - to anyone who will listen.

I cannot understand how anyone outside their echo chamber looks at their research, the complete lack of results and that numbers of patients are rising and instead of thinking "hang on a minute..." Says instead "yep, that tracks it's those scientifically literate patients with referenced critiques and papers that at the problem for not (checks notes) believing hard enough"

It's like believing that someone really did walk into a door every night for years without asking any questions at all.

 

[Yann04]

I cannot understand how anyone outside their echo chamber looks at their research,

The way I understand it, is in the age of the internet and quick answer they don’t.

The overworked GP just looks up:
“Cochrane CFS”
Read the first sentences of the review. And boom they’ve made their decision. They’re not gonna look much further.

Whenever they hear in the media they’re much more likely to click on and be sympathetic too stories about doctors/scientists being “abused” or “harassed” by patients than the opposite.

The google popup whenever u search ME recommending antidepressants and meditation is very likely a major reason behind this as well. (Though I think this has improved within the past two years).

 

[JemPD]

It's like believing that someone really did walk into a door every night for years without asking any questions at all.

while also being disgusted with their clumsiness

 

[SNT Gatchaman]

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.

An opinion piece that was commissioned by the BMJ.

Provenance: Commissioned; externally peer reviewed.

 

[Trish]

I wonder who was the commissioned author. Surely not Symington or Garner, since their only role in ME/CFS is as patient reps on COFFI as far as I know. Neither has ever treated ME/CFS in any ME/CFS specialist service.

And who peer reviewed this nonsense?

 

[Utsikt]

I wonder who was the commissioned author. Surely not Symington or Garner, since their only role in ME/CFS is as patient reps on COFFI as far as I know. Neither has ever treated ME/CFS in any ME/CFS specialist service.

And who peer reviewed this nonsense?

It could be Maria Pedersen, she’s one of the leaders of the Norwegian National Advisory Unit on CFS/ME (the direct translation from Norwegian is something like «Competency Service»).

Apparently it’s BMJ policy to not publish peer review reports on opinion pieces. And I doubt they’ll share who commissioned it, or who they contacted.

 

[Sean]

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.

Does a belief of irrational beliefs in others predict oneself having irrational beliefs about others?

 

[Jonathan Edwards]

I looked up 'those who think bad about others: quotes'

The best one is "Fake people always think others are fake"

 

[Trish]

Another rapid response. From David Putrino and 18 others:
Patients with severe ME/CFS need hope in the form of evidence-based interventions, not opinions.

In their opinion piece “Patients with severe ME/CFS need hope and expert multidisciplinary care” published on May 14, 2025, Miller et al. suggest that patients with severe ME/CFS are hindered in their recovery by a “belief” that they will not get better, and advocate for the use of Cognitive Behavioral Therapy (CBT) to “change their illness narrative.” As clinicians, researchers, and advocates with expertise in ME/CFS, we strongly disagree with this framing. It misrepresents the disease, revives discredited psychosomatic theories, and risks harm to patients.

more at link.

 

[Trish]

And a rapid response from Mark Vink:

Opinion based medicine supported by anecdotal evidence
Dear Editor,

We’ve read the article by Miller et al. with interest.[1] The authors state that if patients with severe and very severe ME/CFS stop believing that they won’t recover and simply change their mindset, that they can recover. Yet they only produce anecdotal evidence to back up this claim. They ignore that CBT and graded exercise therapy studies have proven that ME/CFS is a physical disease.[2] They also ignore that those studies have shown that changing your mindset, which is what CBT for ME is all about, have shown that that does not lead to objective improvement [2,3] and it has a negative effect on work and disability status.[4]

More at link.

 

[Utsikt]

Another rapid response. From David Putrino and 18 others:
Patients with severe ME/CFS need hope in the form of evidence-based interventions, not opinions.

Overall many good points. Went a bit beyond the evidence on findings. Also, apparently we can throw evidence out the window when it comes to support:

To be clear: In certain cases, psychological support may play a valuable role within a multidisciplinary approach to care management, especially in coping with stigma or isolation, but it is not a substitute for evidence-based treatment.

 

[Trish]

Another rapid response. From David Putrino and 18 others:
Patients with severe ME/CFS need hope in the form of evidence-based interventions, not opinions.

In their opinion piece “Patients with severe ME/CFS need hope and expert multidisciplinary care” published on May 14, 2025, Miller et al. suggest that patients with severe ME/CFS are hindered in their recovery by a “belief” that they will not get better, and advocate for the use of Cognitive Behavioral Therapy (CBT) to “change their illness narrative.” As clinicians, researchers, and advocates with expertise in ME/CFS, we strongly disagree with this framing. It misrepresents the disease, revives discredited psychosomatic theories, and risks harm to patients.

more at link.

One of the signatories, Binita Kane, has posted on Bluesky:
https://bsky.app/profile/binitakane.bsky.social/post/3lpoondopuc2n

Quotes from Binita Kane on Bluesky:

Our evidence-based rebuttal to *that* BMJ opinion piece published last week. This has been authored by a coalition of 19 doctors, scientists and patient advocates from around the world, with now 80+ signatures of support from the scientific community.

We hope it sends a strong message to those still pushing outdated dogma and non-evidence based opinions: It will NOT be tolerated by either the scientific or patient community.

It is these attitudes that have led to the dismissal and neglect of people with ME for decades and prevented the very progress needed to find effective treatments. We demand good quality research that can drive evidence-based treatments.

Thank you to
@putrinolab.bsky.social
for taking the lead and all the colleagues and patient advocates that gave up their time to pull this together. We had to slash it from 1700 words to 600 (we had a lot to say!)

Also to the additional 80+ signatories, we will be publishing a full list soon - will add to this thread shortly.

 

[Utsikt]

And a rapid response from Mark Vink:

Opinion based medicine supported by anecdotal evidence

That’s a brilliant headline to drive the point home.