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

[Jonathan Edwards]

I'd disagree that this should not be responded to - a lot of ordinary doctors will see this, and the implicit message the article is sending - to stand firm behind the psychobehavioural approach - will not be missed.

But will it change anyone's view or the practicalities of care provision? I think not. And as you say, the pattern is that such approaches are overtaken by genuinely evidence-based care. If there are responses they will be seen to show just how deluded the patients and their advocates are.

There are bigger fish to fry.

 

[Utsikt]

Nobody treats myasthenia gravis or autoimmune encephalitis with psychotherapy and star jumps these days.

The Norwegian Cancer Association recently funded Reme’s study on hypnosis pre-operation for cancer patients. So they are pretty much everywhere.

 

[Turtle]

I wonder if the witers of this piece, names not important and staff and readers of BMJ know how to use YouTube.
They might want to see "Doctors with ME", by Anil van der Zee.
An ass. psychiatrist and a psychiatrist pointing out that CBT is not to be used for psysical illness.
And at the end of the documentary one of our members here @Mark Vink explicitly warns for GET, that made him very severe.
When doctors don't believe their patients, could they at least try to really learn from their collegues?

 

[Utsikt]

When doctors don't believe their patients, could they at least try to really learn from their collegues?

When doctors become patients, it appears to me like they often lose their credibility as doctors when it comes to their own health. There are countless examples of doctors that got LC that were gaslit by their peers. And a few of them have said outright that they don’t if they would have changed their mind without experiencing it themselves.

 

[rvallee]

The neuroplasticity people may have been right and if they were it is surely good news if that means that the problem is reversible

Not that it matters much, but we already know that it's reversible, and it can switch on and off rapidly in some cases, which I don't think any conception of neuroplasticity would make sense of. At least the symptoms can. We don't know if the underlying cause shifts along with the symptoms perfectly, but common reports of remission and recovery include a gradual improvement, then a sudden rapid end of all symptoms, as well as recurrent episodes of increased or lowered symptoms, as well as episodic triggers, such as an infectious illness like a cold. This is a process that can set in or off in hours, maybe even less.

But, really, it doesn't matter much. Facts are simply irrelevant here, for now. They can and will argue this anyway, right up until most of their peers stop listening to them and the institutions lose interest in their scam. Just like they did with peptic ulcers, it took far longer than it should have, but an entire industry was simply shut off and no one ever looked back. In fact it's as if the whole thing never happened, psychosomatic literature never mentions it anymore.

 

[rvallee]

It really is time for government/Department of Health to go after all the funding of the parties who are publishing all this misinformation. I am sure the BMJ likely receives public money, that should cease given they commissioned this work. All the "researchers" who publish this garbage should equally be removed from post. Things will get a lot less problematic if a few heads of the snake are removed from post for gross misconduct.

That would involve them recognizing their own role in this. Which is at least as significant, probably even more, and so very unlikely to happen. It's one thing to push a scam, it's a whole other thing for otherwise serious institutions to keep buying every bit of a certain scam sent to them, without ever caring that it's clearly a scam.

From my perspective, the quacks deserve a lot of blame, but the lion's share is higher up, even though in some cases they are one and the same (Wessely & Gerada, Flottorp, Rosmalen, etc.). The funding and oversight bodies, the journals, the professional associations, they all ate this up without ever being bothered that it's obviously all junk, because they are drunk on the failed quest for medicine's delusional philosopher's stone. They are supposed to be far more responsible over these things, and without their continued, and ongoing, assent, none of this would have happened.

 

[rvallee]

When doctors become patients, it appears to me like they often lose their credibility as doctors when it comes to their own health. There are countless examples of doctors that got LC that were gaslit by their peers. And a few of them have said outright that they don’t if they would have changed their mind without experiencing it themselves.

I still see it regularly. It's revolting, especially considering how significant the role of medicine has been in maximizing the number of cases and their negative impacts. It reminds me of an army that doesn't bother being careful about friendly fire. You're in the way of my rifle? Sucks to be you. It's disgusting, and says a lot about why things are so bad. Although, really, this isn't so much about the medical profession as how humanity is when the social mask is off, when it's permissible, even encouraged, to be indifferent to the lives of others.

 

[ME/CFS Skeptic]

Had a look at that report about the Leeds unit (reference 12), but it was about only 11 patients.

 

[bobbler]

Is this anything to do with the 'private clinic in Leeds' mentioned here?:
https://www.s4me.info/threads/uk-long-covid-clinics.28030/#post-603956

when I was looking for the CQC reports I struggled to find the NICPM so put in Leeds as the location and then 'hospital' and then 'mental health'. For the former 5 pages of results came up, including a lot of NHS as well as private hospitals and clinics - although of course I wasn't looking to see if any were labelled long covid etc.

 

[Yann04]

When doctors become patients, it appears to me like they often lose their credibility as doctors when it comes to their own health. There are countless examples of doctors that got LC that were gaslit by their peers. And a few of them have said outright that they don’t if they would have changed their mind without experiencing it themselves.

And many of those who get better end up going back to the “irresistible” old ways. À la Garner “model patient”.

 

[Nightsong]

Given that we have been discussing diagnostic codes recently - on the linked NICPM unit report they state that they categorise ME/CFS under the ICD-10 F48.0 code (the old neurasthenia code) rather than G93.3:

F48.0 = Chronic fatigue syndrome (CFS/ME)*

(*NOTE: CFS/ME is categorised in this section simply because, although far from ideal, the best fit within the system which we use for diagnostic classification (ICD-10) is F48.0. However, the NICPM team do not view CFS/ME as a mental disorder. People who suffer with CFS/ME have a physical illness, although generally without an identifiable organic pathology. Five patients had one of their diagnoses as CFS/ME at discharge.)

I wonder how prevalent this is in the NHS - not sure if any research teams are currently looking at the epidemiology but it may be possible to see in eg. the NHS HES databases if the hospitals that have low numbers of G93.3 diagnoses are still using F48.0?

 

[JemPD]

And another much bigger cohort of people with severe and very severe ME/CFS whose GP and carers will pressure them to do all the wrong things, and benefits agencies deny us access to benefits and the care we need.

I don't think it's too dramatic to say thousands of people will be harmed by this article.

a lot of ordinary doctors will see this, and the implicit message the article is sending - to stand firm behind the psychobehavioural approach - will not be missed.

Indeed

I felt sick when i read that the BMJ has basically taught every Dr that I go to, from gynaecology to dermatology, not to mention my GP & the practice nurses....

That I do NOT need a quiet room to lie down in, because that is harmful to my health - so they need to refuse all the accomodations I need. This piece is going to lead to the services that I need becoming even more inaccessible than they were before.

That when I tell them I cant sit or stand upright for at least 30mins first thing in the morning & therefore cannot take a daily bisphosphonate, I am simply in need of some rehab.

That when I say I cant do all the things that I cant do, that I could if I just had some psychoeducation & some rehab.

ALL the things I need are going to become even harder to get, not to mention the benefits i need to survive.

Sorry but this just cant be batted away by laughing at them & knowing how cult-like & anachronistic their views are. This piece is going to put children/families at higher risk of social service/child protection proceedings, its going to lead to even more problems with benefits, with GPs wanting to reduce meds, with higher risk of people being sectioned for refusing to complywith referrals/instructions to these rehab places.

Its going to make it more difficult to get social care, and we can all just completely forget the chance of a side room during a hospital stay, because now that has been categorically stated, in the BMJ as harmful.

The fact it's in BMJ gives a stamp of approval & cements the prejudice & ignorance of the medical establishment, and they have an awful lot of control over my life.

Anyone who thinks this wont have very real very serious consequences for patients, has never been a patient who needs accomodations to access services, they/ve never sat through the agony & suffering of a noisy Drs waiting room or tried to explain to the nurse that when you say you cant think or speak when the light is on & are therefore incapable of explaining that the dose of drugs theyre giving you is inaccurate because they misunderstood something on your list of meds you're taking.

Or been reliant on benefits for survival or dealt with an education board that wants to refer to child protection because the Dr friend they asked tells them that the mother keeping the child out of school & in a dimly lit room is harming them.

Not to mention the poor individual patients in hospital cyrrently being tortured and made sicker by ignorant drs removing their eye masks opening widomws & banging about. God help them.

Sorry but this is an emergency for those of us who are worse than mild.

I dont know whether its better to fight it or just ignore it, because since it cements people's current ideas, any arguing wont do any good anyway, but lets not pretend that it isnt going to seriously our lives, because it is.

My upcoming appt with endocrinolocy, which I hoped to correct an idiotic letter from a previous dr, has now become a serious minefield which could blow up in my face.

I'm scared.

 

[Utsikt]

Putrino has commented on SoMe:

Quite disheartening to return from 10 days working with some of the most important and relevant #MECFS and #LongCOVID researchers in the world and to read this drivel being allowed through from @bmj_latest. Let's be unambiguous about this: BMJ has 1/

allowed an OPINION piece to be published about #MECFS that flies in the face of:
1. current consensus science
2. recent NICE guidelines that were corrected so as to not include recommendations based on fraudulent/discredited data (PACE Trial)
3. voices of ME/CFS patients
2/

Not only should this be a point of shame for @bmj_latest and their editorial team, but we really should be asking about the legal ramifications of continuing to invite researchers to push an agenda that is no longer supported by consensus science and has NEVER been supported 3/

by the patient community. For the longest time, patients have told us that CBT and GET cause harm. We finally have hard physiologic data to support this and yet idealogues are allowed to freely publish OPINION about #MECFS and other energy-limiting diseases in @bmj_latest. To 4/

be clear, claims that CBT and GET can cure or treat severe #LongCOVID and #MECFS is no less absurd and dangerous than telling cancer patients to quit chemo and cure themselves with celery juice or telling day 1 abdominal surgery patients to boost recovery with a game of rugby. 5/

The opinions in this piece about #MECFS have already aged badly. Now they're downright wrong and dangerous. The commitment of @bmj_latest to continue publishing opinion in the face of needs to be met with outrage by the scientific community. Our patients need protection. /end

https://threadreaderapp.com/thread/...gw_aem_0tXJ27WUy1LqrEpRrcRImg#google_vignette

 

[Utsikt]

Rapid response by Suzy J. Evans:

Dear Editor,

I am writing in response to the opinion piece titled “Patients with severe ME/CFS need hope and expert multidisciplinary care” (BMJ 2025; 389:r977), by Alastair Miller, Fiona Symington, Paul Garner, and Maria Pedersen. While the article attempts to provide a constructive perspective on recovery and care for those with severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), it misrepresents key aspects of the illness and risks perpetuating harmful clinical practices.

ME/CFS is a complex, multi-system biological disease, recognised by the World Health Organization, with growing biomedical evidence implicating immune dysregulation, neurological impairment, and metabolic dysfunction. The article’s framing of ME/CFS as largely driven by maladaptive beliefs and functional dysregulation is outdated, and directly conflicts with the 2021 NICE guidelines, which specifically caution against graded exercise therapy (GET) and other interventions aiming to “recondition” patients or reframe their thinking as a route to recovery.

In severe cases, ME/CFS can cause profound debilitation - bedbound patients often experience hypersensitivity, post-exertional symptom exacerbation, and an inability to tolerate light, sound, or minimal movement. To suggest that these manifestations persist due to unhelpful beliefs or conditioned responses is not only clinically inaccurate but also psychologically damaging. This kind of narrative has long contributed to medical gaslighting, delayed diagnosis, and denial of appropriate care.

The authors also repeat the often-cited estimate that ME/CFS affects 250,000 people in the UK. However, this figure is outdated. A 2024 study from the University of Edinburgh, analysing NHS data across England, identified approximately 404,000 individuals with ME/CFS in England alone - a 62% increase from previous estimates (Pulse Today, 2024 - https://www.pulsetoday.co.uk/news/clinical-areas/neurology/researchers-f...). This reinforces the urgent need for accurate prevalence data and expanded biomedical services, particularly for severely affected patients, who often receive no specialist care.

While hope is essential, it must be grounded in evidence. Recovery in ME/CFS - especially in severe cases - is rare, and implying that it can be achieved through reframing thoughts or increasing activity contradicts both patient experience and clinical guidelines. It risks causing harm, particularly if it leads clinicians to push treatments that worsen symptoms or invalidate patient experiences.

I respectfully urge The BMJ to ensure that future commentary on ME/CFS is informed by current evidence, respects the lived realities of patients, and does not repeat narratives that have already caused significant harm within the ME/CFS community.

Yours sincerely,
Suzy Evans
West London

Competing interests: No competing interests

14 May 2025
Suzy J Evans
Medically Retired
West London

 

[Jonathan Edwards]

Not that it matters much, but we already know that it's reversible, and it can switch on and off rapidly in some cases, which I don't think any conception of neuroplasticity would make sense of.

Yes, we do know that. But it would fit very well with neuroplasticity if that involved a feedback loop continually primed by a T cell cytokine peripherally. Remove the T cell signal and the adverse synaptic loops can unwind and return to homeostasis. If the loops are a bit entrenched then maybe inhibit one of the arms so that unwinding occurs.

I am severely deaf. I have excellent new technology hearing aids. But sometimes they need repairing or I wear an older set when doing sport. I am aware of re-setting of my perceptual system over minutes, over days and over weeks. If I take a step back (at night or using older tech) and then forward the input is weird for short periods. Over longer periods more complex recognition processes evolve and regress, so that I have to re-learn bird calls with the shift in frequency spectrum. I have no tinnitus as long as I use my aids daily (none even at night) but if I miss more than a few days tinnitus returns at night. My impression is that our sensory inputs are constantly undergoing neuroplastic change like the input to a recording mixer controlled by a technician with 200 control levers.

 

[Kitty]

My impression is that our sensory inputs are constantly undergoing neuroplastic change like the input to a recording mixer controlled by a technician with 200 control levers.

I suppose it's a form of learning, isn't it? I'm currently learning to read with new varifocals, and have reached the delightful stage where both the new ones and the old ones make my eyes sore.

I have no tinnitus as long as I use my aids daily (none even at night) but if I miss more than a few days tinnitus returns at night.

Do you think this aspect of neuroplasticity might have a connection to sensory sensitivity, or is that too much of a stretch?

 

[Jonathan Edwards]

Do you think this aspect of neuroplasticity might have a connection to sensory sensitivity, or is that too much of a stretch?

Oh yes, I think so.
But I think 'central sensitisation' is going to be a simplistic (i.e. unhelpful) analysis. The sensitivity is driven by some immune cells that maybe also get a leg up from some antibodies from some other immune cells. That level of complexity is the norm for chronic disease of this sort.

 

[SNT Gatchaman]

You know when they see “synapses” associated with the genetic studies, they are going to jump in boots & all, and tell everyone they were right all along about neuroplasticity and brain training.

I think we should have a full debate about this once DecodeME has reported. Things should be much clearer then and we need to discuss synapses in depth.

One of the aspects we'll need to understand is whether the identified genes are thought to be important for making new synapses are maintaining the function of current ones. Brain fog is frequently framed as a slowing of thinking and an inability to access ideas/memories that are just out of reach. Neuroplasticity may not be the important factor.

Paywalled, but see eg this review Regulation of synaptic mitochondria by extracellular vesicles and its implications for neuronal metabolism and synaptic plasticity (2025, Journal of Cerebral Blood Flow & Metabolism)

 

[Sean]

Basically a stitch up by the Oslo Fatigue Consortium.

Using 'fatigue' in the name is always major red flag.

This forum would not exist if member patients, carers, doctors & researchers were bereft of hope.

This.

I note that Fiona Symington is a Garner clone who miraculously cured herself of ME/CFS and now tells everyone how to do it by explaining the 'pain is just the brain's opinion'.

So next time she needs major surgery she will be happy to forgo anaesthetic? The fact that pain takes place in the brain does not make it something that can be arbitrarily suppressed or wished away.

––––––

I am not sure this piece of shit article can be safely ignored. It is going to influence far too many in the clinical community, and not just inside the UK.

Good responses can help influence at least some of those people, and help expose the BMJ's perfidy in this whole catastrophe. They also limit the excuse that nobody warned them of the problems with this exploitative drivel.

That said, responses do need to be considered, concise, strictly on point, and rock solid on the science.

 

[SNT Gatchaman]

Excellent response from Dr Katharine Cheston (@kacheston) —

My interest in ME/CFS is both professional and personal. In September 2008, around my fifteenth birthday, I caught a ‘flu-like virus. My health deteriorated sharply and I was diagnosed with ME/CFS in January 2009; my teenage years and early twenties were shaped by different kinds of formative experiences. In February 2016, I caught another ‘flu-like virus. To my intense and enduring surprise, my ME/CFS symptoms disappeared. They have not returned.

In 2013, after five years unwell and a return to severe illness, I came to believe that I would not recover. This belief did not harm my mental wellbeing, contra to the claims of Dr Miller and colleagues. What did harm my mental wellbeing - to such a significant extent that I have since needed professional support to move forwards - were the beliefs that others held about me and my illness: that I could get better, if only I reframed my own thoughts, or did more exercise, or exercised in a different way, or stopped focusing on my symptoms.

The enduring belief that ME/CFS is, as one clinician-researcher claimed in 1997, a ‘real but reversible condition that the patient may influence by practical self-help’ places an additional burden of suffering of those who remain ill by framing persistent symptoms as personal failure. I speak from both personal and professional experience when I say that the pain this provokes can shape lives.

Finally, Dr Miller and colleagues call for a ‘[c]onstructive dialogue between recovered and symptomatic patients’ to ‘help identify practical approaches to recovery’. I see no use in such a dialogue: I do not know why I became ill; I do not know why I recovered. But I do have something to say to symptomatic patients: This is not your fault.