Intended for healthcare professionals

Rapid Response:

Re: Management of post-acute covid-19 in primary care - A warning to Post Covid sufferers and their clinicians

Dear Editor

Pseudoscience wears many guises. People with poorly understood long term medical conditions have always been the target and victims of snake oil sellers promoting their untested and sometimes dangerous treatments, some coming at us from unexpected directions. My aim in this rapid response is to warn post-Covid sufferers and their clinicians about the perils ahead.

If clinicians cannot provide effective treatment that enables people to return to their normal activities, and, worse still, if they provide ineffective or harmful treatment, or express disbelief in the severity or even the reality of those symptoms or misdiagnose them as indicating psychological problems, where can a patient with long term debilitating physical symptoms turn for help?

People with ME/CFS understand this dilemma all too well. And now many Post Covid patients are confronting it too. In my thirty years living with ME/CFS, I have experienced disbelief, misunderstanding and unhelpful advice from all directions - advice to exercise from doctors that made me sicker, and alternative medicine whose only effect was to empty my wallet.

So what has the ME/CFS experience to do with Covid-19?

Like Post Covid, ME/CFS is not just about fatigue. The defining symptom is post exertional malaise [1], or 'crash' which some Post Covid patients report experiencing too. A walk, a shower, a Zoom meeting can confine them to bed for days, as eloquently described by Professor Paul Garner in his recent BMJ Opinion articles [2]. It looks likely that some will be diagnosed with ME/CFS. The only strategy that patients find helps is pacing - surprisingly difficult for people desperate to return to normal life. The ME Association [3] and Physios for ME [4] have helpful guides. The stark truth is there is no proven cure for ME, though some find medications help with pain and sleep.

So what about my warning?

People with ME/CFS are battered on all sides by a persuasive mix of treatments promoted on the basis of professional eminence, charisma, or compelling anecdotes, but devoid of good research evidence of efficacy or safety.

First, there is the NHS itself. CBT and Graded Exercise Therapy (GET) have been the subject of numerous badly run and inaccurately reported clinical trials which showed, at best, transient improvement on inadequate questionnaires easily influenced by therapists. They showed no long term benefit, and no improvement on objective measures such as fitness or return to work [5]. Many patients report long term harm [6]. Yet the NHS still provides CBT/GET. The NICE guideline and Cochrane Review are currently being rewritten.

Second, there are the multitudes of 'alternative' therapies with enticing sounding names, or named for their founders. None with any sound evidence of efficacy and safety [7]. All potentially eager to sell their wares to unsuspecting post Covid patients.

Third, there are our fellow patients. ME/CFS is a fluctuating condition, so it is impossible for individuals to know whether to attribute an upswing or remission of symptoms to whatever treatment they were trying at the time, or to blind chance. It is a cause of great concern that we need to warn people with ME/CFS, and people with Post Covid symptoms, against a tiny minority of ME/CFS sufferers who are determined to promote what they believe has cured them. Social media campaigns are promoting unproven treatments for ME/CFS and actively targeting post Covid groups too. Some of these may be merely useless, like assorted diets and expensive therapies, but some are unproven and potentially dangerous, such as spinal surgery.

It is good to see active Post Covid forums, but individuals need to be wary of which groups they join and whose advice they listen to. I hope their members will ask for published research evidence to back up claims for treatments, and give them short shrift if it cannot be provided. Anecdotal evidence and pseudoscientific explanations are not good enough. I would particularly warn against anyone attempting to entice Post Covid group members to join secretive social media groups run by unqualified individuals promoting specific treatments.

I have learned to protect myself from pseudoscience by joining an ME forum [8] whose focus is rigorous examination of research and wider sources of information about ME/CFS, and whose members include scientists and doctors. Examining all the evidence without fear or favour is hard work for sick people, that’s why we need to band together to do what would be overwhelming if tackled alone.

I wish all post Covid patients a speedy and safe recovery. I sincerely hope none will be saying in thirty years time as I and many ME/CFS sufferers are now, that we have been ill served by the medical community. Patients with post Covid, ME/CFS, and all other ill understood medical illnesses deserve better than being pushed into the hands of irresponsible purveyors of misinformation and quacks.

[1] Dialogues for a neglected illness

[2] The BMJ Opinion; Paul Garner on long haul covid-19—Don’t try to dominate this virus, accommodate it, September 4, 2020

[3] ME Association Guidance: Reducing the risk of Covid-19 and PVFS/ME/CFS

[4] Physios for ME Covid-19: Post Viral Fatigue Syndrome and Myalgic Encephalomyelitis

[5] Graded exercise therapy does not restore the ability to work in ME/CFS – Rethinking of a Cochrane review, Vink et al, 2020

[6] Forward ME and Oxford Brookes University Announce Results of Patient Survey on CBT and GET in ME/CFS | 03 April 2019

[7] Two takes on the expensive, unproven, and childishly-named quackery known as the Lightning Process, by Professor Brian Hughes, 2020

[8] Science for ME forum

Competing interests: No competing interests

04 September 2020
Patricia A Davis
Retired Teacher