Trial By Error: NICE on Exercise and Post-Covid Syndrome

By David Tuller, DrPH

As post-covid syndrome has emerged as a major public health concern, so has the likelihood that members of the biopsychosocial ideological brigades will roll out their typical interventions for the “long-haulers”–patients suffering from profound exhaustion and other symptoms for many weeks and months after getting infected with the coronavirus. The situation has created an unforeseen dilemma for UK’s National Institute of Health and Care Excellence, which is currently in the process of revising its misguided 2007 guidance for what it then called chronic fatigue syndrome/myalgic encephalomyelitis and now calls ME/CFS.

The panel that created the 2007 document was dominated by cognitive behavior therapy and graded exercise therapy proponents, so those interventions ended up as core treatment recommendations. Three years ago, NICE conducted a perfunctory review and decided that the guidance did not need updating. An onslaught of negative public comment followed, along with the revelation (on Virology Blog, via a freedom of information request) that the expert review panel was remarkably free of diverse voices. NICE reversed itself and launched a full-scale revision process.

The new ME/CFS guidance was supposed to be issued later this year but the pandemic has understandably disrupted the schedule. It is now scheduled to be released next April. The stakes are high, and not just for the patient community. Careers have been built on touting the benefits of these interventions, despite the failures of trials like PACE and FINE and others of their ilk. If the new NICE guidance rejects this approach, it could have a huge negative impact on their reputations and their ability to obtain further funding to pursue wrong-headed ideas.

Before, no one besides patients and their advocates paid much attention to the anti-scientific nature of the claims being made by the PACE authors and their colleagues. But in recent years, international support for the CBT/GET paradigm has cratered, based on recognition of serious methodological and ethical lapses in major research–although support remains strong in the august halls of psychiatry and psychology departments at King’s College London, Oxford, Bristol and Bath. To the 100+ signers of the 2018 open letter to The Lancet requesting an independent investigation of the PACE trial, it is clear that some of these investigators–professorships notwithstanding–either don’t mind violating basic principles of scientific research or don’t understand these principles in the first place.

The biopsychosocial approach to ME/CFS is grounded in the unproven theory that patients are plagued by unhelpful beliefs about having an organic illness and could recover by increasing their activity to counteract the presumed deconditioning. But deconditioning is not the cause of ME/CFS symptoms. Since patients suffer severe relapses after minimal exertion, strategies designed to promote increased activity are in fact contra-indicated. In multiple surveys, more patients have reported being harmed than helped by graded exercise therapy.

When NICE decided to revise its outdated guidance, many people—including me—urged the organization to withdraw the current guidance, or at least to warn readers about possible harms from the recommended treatments. NICE declined. It is likely that well-meaning clinicians around the world are still prescribing CBT and GET to their ME/CFS patients, and will do so until the guidance changes.

Bouts of extreme fatigue seem to be a major symptom of post-covid syndrome. That means many people seeking treatment information from NICE–patients, clinicians, policy-makers–are likely to consult the soon-defunct 13-year-old CFS/ME guidance. If some or many post-covid syndrome patients respond to over-exertion the way ME/CFS patients do, then pushing them to exercise could easily make them worse.

Given this possibility, members of the NICE guidance revision panel pressed the organization on the issue. A post on the ME Association site describes that the effort was spearheaded by its medical director, Dr Charles Shepherd, and Dr William Weir, an infectious disease expert, who collaborated on a letter to NICE. Both men are. members of the NICE revision panel. Other panel members added their names. According to the MEA:

The letter pointed out that recommendations in the current (2007) NICE guideline regarding the use of GET in ME/CFS could cause serious harm if applied to people who are failing to recover from COVID-19 and who are experiencing Post-Covid Syndrome and other complications.

The letter also pointed out that there is a need for guidance from NICE about the use of Pacing as a sensible and safe alternative to Graded Exercise Therapy in respect of Post-Covid Syndrome.

Last Friday, NICE issued the following statement about “graded exercise in the context of COVID-19.” The statement clarified that the 2007 guidance is only for those diagnosed with ME/CFS and not meant for people with post-covid syndome:

 “NICE is aware of concerns about graded exercise therapy (GET) for people who are recovering from COVID-19. NICE’s guideline on ME/CFS (CG53) was published in 2007, many years before the current pandemic and it should not be assumed that the recommendations apply to people with fatigue following COVID19. The recommendations on graded exercise therapy in CG53 only apply to people with a diagnosis of ME/CFS as part of specialist care, and CG53 is clear that this should be part of an individualised, person-centred programme of care, with GET only recommended for people with mild to moderate symptoms.

As the guideline is currently being updated, it is possible that these recommendations may change. The evidence for and against graded exercise therapy is one of the important issues the guideline committee is considering. NICE plans to consult on the updated guidance in November 2020.

NHS England has recently published guidance on After-care needs of inpatients recovering from COVID-19 that includes advice on fatigue.

This NICE statement does not mean that the biopsychosocial campaigners will refrain from applying what they think they know to post-covid syndrome patients. On the contrary. They have sought to colonize what one might call the “fatigue space” in some of its many manifestations–cancer-related, MS-related, HIV-related, and so on. Post-covid fatigue could represent fertile new ground to plow with their failed biopsychosocial template.

Comments on this entry are closed.

  • Steve Boyle 15 July 2020, 4:33 pm

    Joan Macparland [Northern Ireland] hopes to mount a court case against those who promote GET, because it is harmful to so many ME sufferers.

  • Graham McPhee 16 July 2020, 2:02 am

    I do wonder whether a court case will be the only way now to curtail all of this rubbish. In the debate in the UK House of Commons, Carol Monaghan (MP) compared it to the scandal of the way in which tobacco companies in the 50s and 60s continued to push that tobacco was safe, despite knowing that it was not. She is right, and it was court cases that eventually changed the claims.
    Mind you, it didn’t stop smoking: will we ever persuade all medical professionals of the truth?

  • Ellie 16 July 2020, 2:19 am

    Thank you for keeping up the pressure on this David.

    This BPS crap is continuing to have far-reaching consequences for patients.

    In 2018 I was diagnosed with likely autonomic dysfunction /POTS by a ME specialist, and prescribed beta blockers. Referral to Addenbrooke’s was recommended for more specialist care for this aspect of my illness.

    After 4 hours of testing the diagnosis of autonomic dysfunction / POTS was confirmed and a management plan of both pharmacological and non-pharmacological interventions put in place. I was immensely relieved as the increase in autonomic symptoms have further reduced my already limited function.

    But in January this year I saw a different doctor at the clinic. He told me my symptoms were down to deconditioning and that I needed to exercise more. He said in his clinic letter that they did not have the resources to care for M.E. patients.

    My diagnosis by two previous doctors of autonomic dysfunction / POTS has been “updated” by Addenbrooke’s and is no longer shown in my hospital record summary. However “chronic fatigue” remains.

    The belief among some health professionals (underpinned by the NICE guidance) that M.E. patients would improve if only they exercise more is far-reaching and insidious.

    It has the potential to impact so many aspects of care. Appropriate and necessary care for M.E. patients is blocked, witheld, deflected and distorted. This greatly impacts on quality of life, self esteem and functional ability. It’s disgraceful.

  • CT 16 July 2020, 3:39 am

    Graham, I doubt it. It’s in doctors’ interests to have a waste-bin to cast difficult patients into. The failing model is rooted in individualism, positive psychology/’blame the patient’ and the ‘too much medicine’ campaign which now permeate the profession and megabucks stand in the way. I suspect that the only way doctors will be persuaded is if they are suffering themselves in large enough numbers. Perhaps that’s why NICE have acted quickly over GET with respect to post-covid syndrome – they can’t have doctors questioning the BPS model. But wait, look at NHS England’s published advice on after-care for post-covid patients (https://www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2020/06/C0388-after-care-needs-of-inpatients-recovering-from-covid-19-5-june-2020-1.pdf) and graded exercise is in there on page 21 under fatigue management. The NICE statement appears meaningless, they’re just playing with words. They need to be challenged on this.

  • Elizabeth Edwards 18 July 2020, 11:55 am

    Indeed, they’re talking out of both sides of their mouths on this. Warning doctors on the one hand the NICE Guidelines endorsing GET don’t apply to CoVid, then directing them to NHS Post CoVid care recommendations that list ‘Graded Exercise’ as a treatment option for ongoing fatigue, without any explanation or flagging of possible harm. A recommendation presumably based on a continuing blind faith in the BPS view, which amounts to nothing but persistent political propaganda, that the underlying problem in all kinds of fatigue is exercise fear/avoidance and deconditioning.

  • jl 20 July 2020, 10:30 am

    The greater the lie,the further these charlatans will fall.With 2 M.E. victims in my family,this outrage in the face of every possible strand of evidence for years,proving these Quacks wrong,it still continues. A mysogynist bunch who eventually are going to destroy their own reputations by the sheer stubborness of inflated egos and refusing to listen to service users and M.E. patients.We all look forward to the court cases which will take place,giving full exposure to the lies and insulting abuse which has arisen from their flat earth attitudes.

  • Dr Charles Shepherd 25 July 2020, 1:00 pm

    UK/MEA UPDATE ON POST COVID FATIGUE, POST COVID SYNDROMES & POST COVID ME/CFS

    For the past four months The ME Association has been providing information, guidance and support for people who are suffering from debilitating fatigue and symptoms suggestive of ME/CFS following COVID-19 infection

    The reports that I have been receiving over the past few months indicate that we are dealing with a complex group of clinical presentations in this group of people

    In very simple terms it’s helpful to divide post COVID-19 symptom syndromes into three rough groups – although there is quite a lot of overlap and not everyone fits into one specific group

    As far as numbers are concerned – we just don’t know. Some reports have suggested that around 10% of people who self managed COVID symptoms at home are still affected. My own feeling is that the figure is significantly higher than this

    1 POST COVID INTENSIVE CARE/HOSPITAL CARE SYNDROME

    This group is largely confined to people who have been sufficiently unwell to require hospital based treatment. They often had significant respiratory and/or cardiovascular complications whilst in hospital and now have other problems that are frequently seen in people who have been treated in intensive care and had to be ventilated. These can include loss of muscle mass (people lose 3% of muscle mass per day whilst in intensive care), cognitive dysfunction (from reduced levels of oxygen to the brain). loss of taste and smell and complications relating to ventilation tubes, catheters etc. Some have also had gastrointestinal and neurological involvement. Not surprisingly many people in this group also have debilitating fatigue. People in this group are likely to require a prolonged period of rehabilitation – preferably under the care of a multidisciplinary hospital based team that is used to dealing with respiratory, neurological and cardiovascular rehabilitation. The new rehabilitation unit at Headley Court in Surrey is a good example here.

    2 POST COVID SYNDROME

    This group consists of people who appear to be still suffering from COVID-19. Most people in this group were self managed at home and often had no significant contact with health professions while they were ill. They still have COVID symptoms such as breathlessness, palpitations, fevers, loss of smell or taste. These symptoms are often accompanied by fatigue – but not always. In some cases the on-going symptoms are fairly constant. In others, the overall clinical picture fluctuates – sometimes quite dramatically. So they may have days, or parts of a day, when they feel reasonably well and then the symptoms recur – sometimes following undue exertion, but sometimes for no apparent reason.

    3 POST COVID FATIGUE SYNDROME AND POST COVID ME/CFS

    This group have a range of symptoms that are more consistent with the sort of post viral fatigue syndrome that we are used to seeing in people who go on to develop ME/CFS. So, in addition to debilitating activity induced fatigue, they have muscle and joint pains, cognitive dysfunction (problems with short term/working memory, concentration, information processing), orthostatic intolerance (ie problems in remain upright – feeling faint), unrefreshing sleep and the cardinal feature of ME/CFS – post exertional malaise

    Some people in this group, especially where symptoms have persisted for more than three or four months, are now being given a diagnosis of post COVID ME/CFS, or possible post COVID ME/CFS by their doctors.

    This is not surprising given the fact that fatigue is a very prominent symptom of COVID-19; SARS (another coronavirus infection) produced an ME/CFS like illness in around 10% of cases when it occurred in 2002/3; and COVID 19 triggers the release of immune system chemicals called cytokines (especially interleukins 6 and 10), sometimes in excessive amounts that are also thought to play a key role in the causation of ME/CFS

    Three months ago, when I first became aware of post COVID fatigue and these post COVID-10 syndromes I prepared some comprehensive MEA guidance on both diagnosis and management of post COVID fatigue and post COVID syndromes

    In our current state of knowledge, this guidance is based on the basic principles of managing any post viral fatigue syndrome/PVFS and good old fashioned convalescence:

    1 Pacing, planning and prioritising physical and cognitive activities – where increases in activity levels need to be gradual and flexible and interspaced with periods of rest and relaxation. Graded exercise therapy is NOT appropriate here.
    2 Good quality sleep – an excessive sleep requirement (hypersomnia) is a normal part of the body’s healing process following a severe infection and should not be interfered with
    3 Good nutrition and fluid intake, including avoiding caffeine and alcohol
    4 Maintaining mental well being
    5 When/where possible – a very gradual and modified return to work or education
    6 Maintaining contact with a GP

    There is no sound evidence to support the use of drugs, supplements or vitamins in managing PVFS – one exception being symptomatic relief for pain

    Along with all our other information on COVID-19, this MEA leaflet is available a free download from the MEA website:

    https://www.meassociation.org.uk/2020/04/covid-19-and-post-viral-fatigue-syndrome-by-dr-charles-shepherd-30-april-2020/

    This is a useful BMJ article from Professor Paul Garner, whom I am working with, on his experience of developing post viral fatigue and ME/CFS like symptoms following COVID-19

    https://www.meassociation.org.uk/2020/05/british-medical-journal-opinion-covid-19-and-fatigue-a-game-of-snakes-and-ladders-20-may-2020/?fbclid=IwAR0ROz6k8IK5RIxqULAv0xxq_td_VHME2G8YihotM3Y4nC0OPFum4rHz9eE

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
    25 July 2020