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

https://www.bmj.com/content/389/bmj.r977

Opinion piece

Reframing beliefs about illness, along with specialist rehabilitation, can help recovery in people with severe ME/CFS, write Alastair Miller, Fiona Symington, Paul Garner, and Maria Pedersen

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) affects around 250 000 people in the UK. Symptoms include fatigue, cognitive difficulties, pain, autonomic disturbances, disturbed sleep, and gastrointestinal upset. The National Institute for Health and Care Excellence (NICE) estimates that 25% of people with ME/CFS experience higher symptom levels and reduced function.1 These disabilities, and the patients’ belief that they won’t recover, can harm their mental wellbeing.2

Recovery is possible, but patients need help to find their path. A constructive starting point requires experienced practitioners to recognise that the evolved biological control systems responsible for maintaining safety can sometimes become dysregulated.34 This perspective offers patients a coherent explanatory model and, for some, a foundation for meaningful therapeutic progress.56

Guidance from NICE in 2021 on managing ME/CFS states that “recovery” may be only “a long period of remission” and that “many will need to adapt to living with ME/CFS.”7 For severe and very severe ME/CFS, the guidance states that patients may be in bed all day; may be unable to eat or digest; and may require a low stimulus environment in a dark, quiet room with little or no interaction because of hypersensitivity to light, sound, touch, movement, and smells.1 A government consultation with charities and patients about implementing the NICE guidance concluded that doctors must understand that people with severe symptoms need palliative care.7

Death directly from ME/CFS is unlikely. Neither somatic pathology nor specific physiological disturbance has been reliably and consistently identified.6 However, functional impairment may lead to malnutrition and dehydration—described as the cause of death of Maeve Boothby O’Neill, who died in 2021 at age 27.8 The coroner at her inquest highlighted that the NHS had no specialist units for severe ME/CFS.9 However, several specialist regional services for ME/CFS diagnose and treat mild and moderate presentations.

One specialist unit in the UK is at the Leeds National Inpatient Centre for Psychological Medicine. Some of the patients admitted have severe and complex ME/CFS. The Leeds centre delivers multidisciplinary inpatient care based on a biopsychosocial approach. This underpins much general practice in the UK, where symptoms and illness are considered not just in terms of the biology of a disease but also psychological (the influence of thoughts and emotions) and social dimensions (a person’s family, relationships, and societal beliefs).10

The Leeds unit employs highly trained and experienced staff in nursing, liaison psychiatry, occupational therapy, physiotherapy, cognitive behavioural therapy, dietetics, and pharmacy.11 Although their numbers are small, the improvements are seen across all groups of patients and are consistent. In nine of the past 10 years, everyone discharged had shown improvement, with over 50% each year reporting a major improvement, and the Care Quality Commission rated the service as “outstanding” on effectiveness and praised its holistic approach.12

Philosophical approach
An advantage of the Leeds model is that it avoids continuous sensory deprivation and total bed rest, both of which are likely to harm health.13 A literature review by the Norwegian Institute of Public Health found no evidence that shielding patients from sensory stimuli benefited those with severe fatigue.14 A large international group of specialists in chronic fatigue conditions state that inactivity, bed rest, isolation, and sensory deprivation risk worsening symptoms and disability. They explain that fatigue after activity doesn’t necessarily mean that this is dangerous or indicate “a lack of energy in the body.” A gradual, controlled approach to increasing activity is an important part of rehabilitation.6

The philosophical approach behind the Leeds centre and the Oslo Chronic Fatigue Consortium’s statement overcomes the longstanding problem of separating “mental” and ”physical” illness.615 Specialists researching and treating these conditions view chronic fatigue conditions as a dysfunctional biological response orchestrated in the brain, influenced by expectations and conditioned responses.161718

Recent advances in neuroscience have enhanced our understanding of the link between the brain and physiologically based symptoms.181920 Subtle biological changes—such as increased sympathetic activity, decreased parasympathetic activity, reduced cortisol responsiveness to stress, and an activated immune system—can be attributed to a shift in the brain’s interpretation of the body’s condition.321 Emerging evidence suggests that psychoeducation about the stress response can help reduce hypervigilance and accentuation of the dysfunctional biological response.422

This approach across a range of conditions has been described for many years,23 underpinning national service planning in some countries. The Danish Health Care System for functional illness manages specialty specific functional somatic syndromes with common cognitive behavioural treatments, and patients can become self-supporting.24 In contrast, the UK is following an outdated model, leading NICE to disallow cognitive approaches to help recovery or bespoke programmes designed to increase activity.7

Inspiring hope, and changing the illness narrative, is helpful.25 The unproved narrative of a disease with no cure, improvement, or recovery can be harmful and is erroneous.6 Multidisciplinary, tailored approaches based on a biopsychosocial understanding can help patients and are urgently needed. Constructive dialogue between recovered and symptomatic patients, carers, and clinicians can help identify practical approaches to recovery.2627 Above all, we must remind patients, their relatives, and doctors that even those with severe ME/CFS can recover

 

Dear God.......

 

They truly have no shame.

 

"Provenance: Commissioned; externally peer reviewed."

 

Maria Pedersen works at the National Competency Service for ME/CFS in Norway.

 

Competency??

 

@dave30th called Paul Garner the O'Sullivan "poster-patient".
I call him the "imposter-patient".

 

That is terrifying.

I hope the charities will warn severely ill people that under no circumstances should they accept a referral due to the risk of harm. And because it seems the only way we're going to get rid of these feckers is to starve them out.

 

Yup! They have the official responsibility for:

All they do is support Wyller, Landmark, Garner etc., and promote Lightning Process, GET and CBT.

They are actually working to remove PEM as a diagnostic criteria for ME/CFS.

 

Fortunately, we already have evidence that this is pure make believe. And I think that will snowball. Hope will come from actual understanding of the biology. \

This reminds me of Atahualpa telling his soldiers not to fight off the Spaniards who had captured him because he could not die, or even lose. How could these people's incantations possibly not work their magic? (They even have a court jester on board to add to the fun.) The problem is that the rains didn't come for them after all. And there were some new people who knew what a wheel did.

 

Do they end up acknowledging that Maeve tried reframing her beliefs and the cbt and whatnot and she only deteriorated after it?!

Because their framing suggests they think they could have saved Maeve or something.

 

It is noteworthy that this anachronistic fantasy view has been commissioned by the BMJ - the journal of the British Medical Establishment. My colleagues are now so out of touch with progress in medical science that they might as well wear a shaman's costume.

Whereas, the ME/CFS patient community understands the immunology and the neuroscience right at the edge of progress and I suspect will show that it can do the science better than any of these blimps. Not just solve ME/CFS but actually take the field of neuro-immunology to a level that will solve mysteries for a whole bunch of other diseases.

There is an interesting precedent, my mother used to relate - that the problem of hepatitis B contamination of renal dialysis was solved by people with renal failure. The difference is that these were physicians. Now the patients, with the help of their friends and carers, have taken over.

 

I didn’t bother reading it all, but it seems like they think they could have helped her..

 

Are you serious?

 

Er, yes. It is the BMJ and it says it was commissioned.
Very much in line with previous behaviour, even if one might have thought somebody would have told them that the waves were getting the king's sandals wet.

 

Taking the title:

Yes we need hope. And people like those who write the article directly dash our hopes by diverting resources away from us being taken seriously and research that might progress our understanding into long disproven dogma ie. “zombie ideas”.

Also I hate how “multidisciplinary” has been hijacked to mean psychologists and rehabilitation people.

 

Also Miller is the 'expert' for the Royal College of Physicians on ME/CFS. This is the entire British Medical Establishment pronouncing that it will continue to sail to the edge of its flat earth. Fortunately, Magellan's ship is just coming in to view, having gone all the way round.

 

I didn’t know that meant «by BMJ», I assumed it could mean «by someone in general». Thanks!

At least they are kind enough to spell it out for everyone else to see yet another time..

 

Say if we find a mechanism, will they continue defending these beliefs?
Will they quietly drop out à la Wessely?
Will they pretend to have been on the right side all along à la Greenhalgh?

Probably a mix of all three I think. I’m curious to see personally.

 

My money is on this eventually and just moving along to other MUS, FND, or whatever they decide to call it next.