Chronic fatigue syndrome and long covid: moving beyond the controversy
BMJ 2021; 373 doi: https://doi.org/10.1136/bmj.n1559 (Published 24 June 2021) Cite this as: BMJ 2021;373:n1559Read our latest coverage of the coronavirus pandemic
Linked Opinion
How power imbalances in the narratives, research, and publications around long covid can harm patients
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Dear Editor
In our sleep medicine practice we quite commonly see patients with a diagnosis of ME or CFS who on testing also have a degree of sleep apnoea. On rare occasions treating this OSA completely resolves the ME/CFS symptoms so the initial diagnosis was wrong. More commonly it improves the symptoms but the underlying condition remains.
The symptoms of fatigue and "brain fog" are exactly those of OSAS. Patients who are no longer as mobile as a result of long covid may gain weight which then makes it more likely that they will develop OSAS. Getting these patients tested when there are backlogs in many sleep clinics will not be rapid but a quick screenint tool such as STOP Bang might be a starting point. Of course a screening tool developed to screen patients presenting for surgery may not be valid in this group of patients so my plea would be that as long covid is researched part of that project should be to validate a screening tool and also to assess what percentage of these patients have both conditions.
Competing interests: No competing interests
Dear Editor
The acknowledgement of diversity in ME/CFS is a significant step forward in our approach to Long Covid.
Although often profoundly disabling, the main clinical manifestations in this diverse group of patients is often poorly characterised and frequently devoid of localising symptoms. Yet individualisation in these cases is fundamental to modelling both the nature of the underlying systems disturbance and the most appropriate therapeutic response to it.
Specialised ME/CFS units such as the team at RLHIM, routinely individualise these cases to a high level of detail.
When objective investigation results are unhelpful, as they frequently are, it is in advanced case taking methods that the most crucial information is gathered.
By their very nature, dysregulated systems cannot be manipulated into functionality. For this reason, it is highly unlikely that a pharmaceutical approach will ultimately benefit ME/CFS cases, apart from that discrete minority of cases where there is evidence of specific organ decompensation underlying the clinical picture. Drugs by their nature are 'pathway specific' and not 'systems-organising' in their mode of action.
Modelling ME/CFS cases, starting with a clear account of the premorbid state as baseline, is an important first step in the evolution of an individualised and facilitatory treatment plan. It is important to enquire in detail about the corollary events in the acute phase (including medication, the mental and emotional state and confounding lifestyle factors). Over and above standard systematic enquiry, great care should be taken in the evaluation of symptoms that reflect those physiological anomalies that characterise that individual patient's decompensated state. It is often the most idiosyncratic symptoms that provide insight into whether cases are autonomically dysregulated, or maintained by persisting immunological activity.
Some patients develop undue sensitivity to changes in ambient temperature, for example. This has been postulated to be one possible indicator of hypothalamic dysregulation. This group of patients may be more likely to have used paracetamol-based drugs early in the acute disease process, compared with patient groups who have normal thermostatic function in the chronic stage. This may indicate one possible contributory aetiology in a discrete subset of patients.
The BMJ's excellent article supports the development of specialised multi-disciplinary support for Long Covid patients. It is however important to realise that compartmentalisation of a problem like ME/CFS can sometimes miss the point. The clinical modelling of a systems-disturbance is often best recorded and addressed by a clinician with dedicated expertise in multi-system assessment and who can pull the 'hard' and 'soft' data together to form an individualised / holistic synthesis. Although this individualising work is time-intensive, it often yields a well-matched and facilitatory response to the patient's treatment, which a series of shorter compartmentalised assessments often fails to achieve.
Competing interests: No competing interests
Dear Editor
Dear Editor
Our charity, ME Research UK, has been funding biomedical research studies into ME/CFS for 21 years, and has supported projects in the UK and overseas.
In that time, none of our researchers has complained to us of campaigns of harassment, whether from patients or anyone else. Robust individual exchanges of views may occur from time to time, but these are part of the terrain when people feel passionately about an issue; they may even be welcome as a valuable addition to the scientific debate.
Mr Jonathan Davies
Chair of Trustees, ME Research UK
Competing interests: No competing interests
Dear Editor
Charities, patients and researchers are all working together to find the cause and effective treatments for ME/CFS
As a charity that funds biomedical research into the cause and treatment of ME/CFS we are not aware of any researchers who hold the sort of negative and divisive views about the ME/CFS patient community that are expressed in this article (1). All the researchers we fund are very grateful for the support and encouragement they continually receive from the ME/CFS patient community. In fact, patients, charities and researchers are all successfully working together on a number of ME/CFS research initiatives such as Decode ME (2), the ME Biobank (3) and the role of cardiorespiratory exercise testing (4).
The reason why people with ME/CFS feel angry and let down by the medical establishment stems from the fact that almost all biomedical research until recently has been funded by donations to the charity sector. Almost all government funding has gone into research based on a flawed psychosocial model of causation.
This latter research has led to the NHS spending millions of pounds in providing treatment programmes that follow the current (2007) NICE guideline recommendations on CBT and GET - behavioural treatments that are based on this psychosocial model of causation involving abnormal illness beliefs and behaviours and deconditioning.
Having reviewed all the clinical trial evidence for these two behavioural interventions for the new NICE guideline on ME/CFS, NICE has found no robust evidence of efficacy. The NICE guideline committee also received patient evidence on behavioural interventions from people with ME/CFS (2274 respondents). This evidence was analysed by Oxford Brookes University (5). With CBT, 53% reported no improvement in physical health. 26.4% reported a deterioration. With GET, 67.1% reported a deterioration in physical health. 11.7% reported no improvement.
NICE has stated in relation to the stakeholder consultation draft of the new NICE guideline (6) that:
Because of the harms reported by people with ME/CFS, as well as the committee’s own experience of the effects when people exceed their energy limits, the draft guideline says that any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy (GET) should not be offered for the treatment of ME/CFS.
The draft guideline also emphasises that cognitive behavioural therapy (CBT) it is not a treatment or cure for ME/CFS.
If anyone deserves an apology it is people with ME/CFS, many of whom have experienced years of being told that their symptoms are ‘all in the mind’ and given no meaningful medical management - mainly as a result of the dominance of the psychosocial model of causation. As a result, progress involving biomedical research into the underlying cause of ME/CFS has been severely hampered.
NICE has warned that their current recommendations regarding GET for ME/CFS should not be transferred to people with Long Covid (7). We hope that this new cohort of post-viral patients with Long Covid will not have to suffer the same mistakes that have been inflicted on people with ME/CFS.
Dr Charles Shepherd
Hon Medical Adviser, ME Association
References
1 Chronic fatigue syndrome and long covid: moving beyond the controversy BMJ 2021;373:n1559
2 Decode ME website information:
https://www.decodeme.org.uk
3 ME Biobank website information:
https://cureme.lshtm.ac.uk/the-uk-mecfs-biobank/
4 ME Association Research: New study to measure physiological changes in daily activity in people with ME: MEA website, May 12 2020.
https://meassociation.org.uk/2020/05/mea-research-new-study-to-measure-p...
5 NICE draft guidance addresses the continuing debate about the best approach to the diagnosis and management of ME/CFS
https://www.nice.org.uk/news/article/nice-draft-guidance-addresses-the-c...
6 Forward-ME: Evaluation of a survey exploring the experiences of adults and children with ME/CFS who have participated in CBT and GET interventional programmes
https://meassociation.org.uk/wp-content/uploads/NICE-Patient-Survey-Outc...
7 NICE cautions against using graded exercise therapy for patients recovering from covid-19 BMJ 2020;370:m2912
https://www.bmj.com/content/370/bmj.m2912
Ends
Competing interests: No competing interests
Dear Editor
Your investigation “Long Covid and ME/CFS: moving beyond the controversy” would seem to have an obvious omission - it makes no mention of the DecodeME study[1].
This genome wide association study will investigate the potential genetic root causes of ME/CFS in 20,000 participants, with recruitment opening this September.
Already, well over 23,000 [1] people with ME/CFS from the UK have indicated that they are interested in taking part.
The 'secret' to this level of support from the ME/CFS community? The researchers, from the University of Edinburgh, have made the effort to engage with and listen to the patient community, and have ensured that people with ME/CFS, their carers and charity representatives are co-producers in every aspect of the study.
There is a way to move positively forward that has already been established, and I look forward to seeing more researchers viewing, and treating, patients as partners.
[1] https://www.decodeme.org.uk/decodeme-recruitment-update-and-april-webinar/
Competing interests: No competing interests
Dear Editor
My aims in writing are as follows:
Firstly to point out what I suspect is an error in the original article.
Secondly to highlight the need for longitudinal research into LC.
Finally to propose a way to actually move on from the controversy.
The article states:
The pandemic has seen Sharpe back in Oxford, helping to set up a multidisciplinary long covid clinic involving medical specialists, physiotherapists, occupational health practitioners, and psychologists. Clinics of this sort, with a similar range of clinical expertise, have been set up around the UK.
Now whilst some clinics (such as those provided for NHS staff) have occupational health practitioners as core team members I believe that occupational therapists were perhaps more likely, and what was meant to be written here. Occupational health practitioners are usually related to specific employment rather than in general healthcare clinics for all.
Secondly, having been embroiled in the discussions regarding Long Covid, ME/CFS and GET/CBT I think what is needed moving forward is more longitudinal research. As an example in the article, the study by Sally Singh is mentioned as taking place over 6 weeks. It is not clear if this study intends to follow participants up over the longer term. Someone’s outcome at 6 weeks if they do risk PEM/PESE might look very different at 6 months or a year. Additionally it will be important to consider context of these participants lives which is something that often research neglects. It is all well and good for improvements to be made over a short period of focused input but is this sustained when in the context of someone’s daily reality? Are there challenges to continuing recovery past the initial input. Research additionally does need to be pragmatic and consider the realities of service delivery.
Additionally the speed at which research funds are awarded perhaps has a tendency to not allow adequate PPI and true co-production to take place. If it did these battles between researchers and the communities they hope to serve would be null and void. I have seen peers with LC be given pages of research proposals on a Friday with the expectation they comment by the Monday. The systems are inherently ableist which can replicate ableist research and practice.
My third point on moving the controversy forward links to my pointing out the error in the first and, I would like to propose more understanding and awareness of the unique skills and expertise my profession has to offer.
Occupational Therapists are uniquely placed to support individuals with LC alongside our medical and allied health colleagues. We are dual trained and consider the impact of physical and mental health and the complex interaction of the person, the occupations they engage in and the context of their environment. We work with people to focus simply on living their lives. When we can live authentically, balance the things we want, need and have to do, this supports our well-being.
As many of the people struggling to get support for LC have seen, the current healthcare systems are struggling to know what to do with us. Staffing clinics may be ad hoc and done alongside other roles and responsibilities not enabling practitioners the focus on reading the mountains of literature on this new illness. Those of us that are ill are experts by experience and many of us have read much more than the people seeing us (by necessity).
Often occupational therapists can have the most impact working with people in their own homes and communities rather than within a medical setting. I propose placing OTs within GP practices to support people with LC to help people to adapt to whatever life is like each day. Symptom management is but one piece of the health and well-being puzzle. To truly place individuals and those around them at the centre of service provision in order to support engagement in family and social life, self care and where appropriate work. Occupational therapists have a lot to offer employers willing to support their employees back to work, especially in understanding how to manage the cognitive, physical and emotional demands of a workplace. I am part of the Long Covid Support Employment Group who have been advocating about ways to support people back to work sustainably.
To come full circle our group believes we should start with supporting our keyworkers. For each health and social care service to have access to a multidisciplinary team across medicine, allied health (inc OT) one that works with occupational health, HR and line managers to support keyworkers back to work. Once we’ve done that I’m sure you’ll have a very passionate group of staff willing to share both their professional and lived experience to support the wider LC population. It’s about not divorcing psychology from medicine but recognising how entangled they are and OTs can be the bridge between those and hopefully see the individual with LC safely over to the other side.
Competing interests: I have an Independent Practice as an Occupational Therapist although I believe that the service I offer should be available to people via the NHS.
Dear Editor
We have heard a great deal in mainstream media about the “whole lot of awfulness” that Michael Sharpe has endured,[1] [2] [3] so much so as to raise questions about use of media to garner support for scientifically challenged ideas. The trouble is that in all that attention, no one mentioned the most salient “awfulness” of all: that Sharpe’s approach has been rejected by distinguished researchers and governmental health authorities across the globe.
It should concern us all that the BMJ would publish material on this now-urgent issue with the same unscientific spin that the media has employed. The US National Academy of Sciences concluded in 2015 that it has been an error to diagnose and treat ME/CFS as a psychological condition.[4] That report was then supported by an extensive evaluation of evidence on both sides by the Agency for Healthcare Research and Quality.[5] They concluded not only that the Pace trial was biased on three counts, but that the Oxford definition of CFS, upon which it was based, should be abandoned. The NIH pursued its own investigations and reached the same conclusions.[6]
All US governmental health organizations now reject the term “chronic fatigue syndrome”, eliminating recommendations aligned with the Pace trial. That consensus has rapidly spread across the globe, so much so that NICE came on board last year with new draft guidance along US lines, abandoning the term ‘chronic fatigue syndrome’ in favor of ‘ME/CFS’. [7]
Now that we’re suddenly grappling with millions of patients across the globe with a post-viral condition similar to ME/CFS, the BMJ has chosen to publish a series of articles about chronic fatigue syndrome that overtly fail to inform clinicians about the new scientific consensus. Without a word of explanation, the BMJ’s long covid Practice Pointers [8] set this questionable standard, aligning long covid with CFS as if the scientific world has never challenged the safety of that construct.
Clearly long covid patients, and ME/CFS patients, have a right to the same scientific standards that other patients benefit from. No publication can claim unbiased standards on this controversy if it publishes material on CFS that fails to explain the substantial scientific challenge. If the case for reviving the CFS construct is strong, why not present both sides? If Sharpe and colleagues can address the safety concerns of researchers and policy makers across the globe, clinicians who struggle to manage long covid need to see them do so.
[1] Kelland K. Online activists are silencing us, scientists say. Reuters, 13 March 2019. https://www.reuters.com/investigates/special-report/science-socialmedia/ (accessed 25 June 2021).
[2] Smyth C. Trolls force Oxford expert to stop research on ME. The Times, 16 March 2019. https://www.thetimes.co.uk/article/trolls-force-oxford-expert-to-stop-re... (accessed 25 June 2021).
[3] Andrews A. ME and the perils of internet activism. The Guardian, 28 July 2019. https://www.theguardian.com/society/2019/jul/28/me-perils-internet-activ... (accessed 25 June 2021).
[4] 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). February 10, 2015.
[5] Smith ME et al. Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Evidence Report/Technology Assessment No. 219. Addendum July 2016. https://effectivehealthcare.ahrq.gov/sites/default/files/pdf/chronic-fat... (accessed 25 June 2021).
[6] Green CR, Cowan P, Elk R, O'Neil KM, Rasmussen AL. (2015). National Institutes of Health Pathways to Prevention Workshop: Advancing the research on myalgic encephalomyelitis/chronic fatigue syndrome. Ann Intern Med 2015;162(12): 860-5.
[7] National Institute for Health and Clinical Excellence. NICE draft guidance addresses the continuing debate about the best approach to the diagnosis and management of ME/CFS, 2020.
https://www.nice.org.uk/news/article/nice-draft-guidance-addresses-the-c... (accessed 25 June 2021).
Competing interests: No competing interests
Dear Editor
The article is interesting as much for what it doesn't say as what it does. Take Paul Garner's experience for instance. What it doesn't say is that the programme he participated in has been likened to brainwashing and a cult, and has been denounced by several organisations. I refer you to the comment posted here https://www.virology.ws/2021/01/28/trial-by-error-professor-paul-garners... by "Charles" on 28th January 2021, and recommend you have a deeper look at "The Lightning Process". I was unaware that medical research consisted in extrapolating from one's own experience to form a general treatment protocol for all suffers of a condition.
I was also interested in the quote "“Patients need to feel listened to and believed—physicians must manage uncertainty.” Referencing the Pace trial, they added, “At present the best treatment is psychologically informed rehabilitation.”" The best way to make sure patients don't feel listened to and believed is to tell them their symptoms are as a result of their anxiety, something which is heard by the patient as being "all in the mind". This is nothing less than institutionalised victim-blaming. Whatever happened to treating the symptoms, rather than leaving patients to struggle with these symptoms and give them no hope of ever getting better because they are fighting on their own?
Speaking as a long Covid sufferer, and also as someone who provides online support to other sufferers of long Covid, there are as many different issues that can result from a Covid infection: deconditioning is just one of them and by no means the main issue. Why then should any form of exercise be seen as the main way to treat long Covid patients? Why are we still not treating the symptoms that I and many others have suffered over the last 15 or so months?
Competing interests: No competing interests
Dear Editor,
The article states, "Garner believes that the non-specific concept of post-exertional malaise can cause patients to fear activities and overexertion." [1] Controversies regarding ME are not religious disputes; Garner's beliefs are irrelevant and the implied appeal to authority is never a good look. Where is the data that shows patients fear activities and overexertion?
Thousands of informal patient reports over decades consistently show that patients routinely exceed their energy envelope and trigger PEM as a result. That directly contradicts the unevidenced claim that patients are afraid of and refuse to engage in activity. The reality of living with ME forces patients to exceed their limits simply in order to survive, all the while knowing there may be a terrible price to pay afterwards. The price may even include becoming bedbound in a dark silent room, unable to speak or eat. That prospect may not terrify Michael Sharpe or Paul Garner but it certainly terrifies every ME patient I have ever corresponded with.
As for the PACE trial itself, there is no need for further analysis and argument, as the PACE investigators themselves admit their treatments don't work at long term followup. It's right there in the abstract [2]: "There was little evidence of differences in outcomes between the randomised treatment groups at long-term follow-up. "
[1] Chronic fatigue syndrome and long covid: moving beyond the controversy; https://doi.org/10.1136/bmj.n1559
[2] Rehabilitative treatments for chronic fatigue syndrome: long-term follow-up from the PACE trial; https://pubmed.ncbi.nlm.nih.gov/26521770/
Competing interests: No competing interests
Long covid: Reshaping conversations about medically unexplained symptoms
Dear Editor
Melanie Newman’s article, a linked editorial, and the tranche of rapid responses demonstrate how ‘long covid’ has reignited the debate surrounding the aetiology and management of chronic fatigue syndrome (1). Unfortunately, rather than moving beyond the controversy, most of the ensuing arguments have fallen back into familiar grooves deepened by confirmation bias and dualistic thinking (1-3). On a more positive note, the intense media attention and public interest surrounding long covid present a golden opportunity to reshape and extend discussions around medically unexplained symptoms.
Patients presenting with symptoms in the presence of normal diagnostic tests account for 26-35% of consultations in primary care (4). The heterogeneous banner of medically unexplained symptoms encompasses simple transient problems, recognised symptom complexes such as chronic fatigue syndrome, and emerging phenomena like long covid. All present challenges to the doctor-patient relationship, confer risks of over-diagnosis and overtreatment, and can provoke frustration and anxiety in junior and experienced clinicians alike (2, 5).
These common clinical scenarios highlight the pressing need for a framework to aid communication with patients frustrated by the mismatch of disabling symptoms and normal investigations. The contrasting societal and medical narratives Newman outlines regarding chronic fatigue exemplify the challenges doctors and patients face together in coming to a shared understanding of diagnosis and management options (1, 2). These consultations often carry the weight of decades of power imbalance, psychological stigma and bitter dualistic debate, leaving both doctor and patient dissatisfied (1, 3).
In contrast to most medical specialties, neurologists have made remarkable progress in establishing a patient-led terminology and common framework to positively identify and manage functional disorders (6). Other disciplines should strive to match this example but recognise that complex and undifferentiated presentations will doubtless persist, and require skill and judgement to investigate appropriately and constructively manage uncertainty. Crucially, this approach must leave room for an evolving evidence base as ‘unexplained’ does not mean ‘unexplainable’. Long covid represents an opportunity for the medical profession to move beyond stale controversies and to reconsider how we discuss symptoms lacking clear aetiology with patients, students and colleagues.
1. Newman M. Chronic fatigue syndrome and long covid: moving beyond the controversy. BMJ. 2021;373:n1559.
2. Johansen ML, Risor MB. What is the problem with medically unexplained symptoms for GPs? A meta-synthesis of qualitative studies. Patient Educ Couns. 2017;100(4):647-54.
3. Lokugamage AU, Simpson FK, Chew-Graham CA. Patient commentary: How power imbalances in the narratives, research, and publications around long covid can harm patients. BMJ. 2021;373:n1579.
4. Haller H, Cramer H, Lauche R, Dobos G. Somatoform disorders and medically unexplained symptoms in primary care. Deutsches Arzteblatt International. 2015;112(16):279-87.
5. Yon K, Nettleton S, Walters K, Lamahewa K, Buszewicz M. Junior doctors' experiences of managing patients with medically unexplained symptoms: a qualitative study. BMJ Open. 2015;5(12):e009593.
6. Stone J, Burton C, Carson A. Recognising and explaining functional neurological disorder. BMJ. 2020;371:m3745.
Competing interests: No competing interests