By David Tuller, DrPH
It is clear that there will be much grappling going forward over the similarities and differences between long-Covid and ME (or CFS, or ME/CFS, or whatever this illness or cluster of illnesses is being called). The two entities overlap in some ways, but no one should conflate them.
We are past the pandemic’s half-year mark. Since most (but not all) case definitions in the ME and CFS category require symptoms to be present for six months, some long-Covid patients, called long-haulers, might already meet diagnostic criteria for the disease. But many clearly suffer from symptoms and organ damage not associated with ME and its variants.
Iâ€™ve written some posts about the efforts of key members of the CBT/GET ideological brigades to impose their brand of â€œtreatmentâ€ on people experiencing fatigue after a bout of acute Covid-19. It seems these experts cannot stop repeating the same bogus and discredited arguments about fatigue and deconditioning and problematic cognitions that they’ve been promoting forever. And now they’re assuming the same stupid perspective relative to Covid-19. As always, their logic seems very Trumpian.
Luckily, some in the UK are speaking out against this incompetent and unwarranted advice. In particular, physician Paul Garner, a professor at the Liverpool School of Tropical Medicine, has written a series of compelling posts for BMJ about his struggle with profound exhaustion, multiple relapses and other ongoing medical complications after an acute episode of Covid-19. He has also reflected thoughtfully and compassionately about the parallel experiences of people with ME.
I am pleasantly surprised that BMJ is publishing Garner’s posts. In multiple interactions with Virology Blog over the past few years, BMJ has demonstrated a singular lack of editorial integrity. This has been most apparent in the egregious handling of the 2017 study of the Lightning Process as a treatment for adolescents with chronic fatigue syndrome, conducted by Professor Esther Crawley, Bristol University’s ethically and methodologically challenged pediatrician. (As a reminder, the Lightning Process was created by British Tarot reader and aura specialist Phil Parker.)
In that study, as Virology Blog documented almost three years ago, Professor Crawley and her colleagues recruited more than half the participants before trial registration; swapped primary and secondary outcome measures based on early data, thus being able to report positive rather than null results; and failed to disclose these actions in the published paper. Rather than retracting the paper for violating core principles of scientific research, BMJ rewarded the investigators for their misbehavior last summer by republishing the original findings–albeit with a 3,000-word correction/clarification and a 1,000-word editor’s note justifying the unjustifiable decision to leave the paper in the medical literature.
After that, more than 70 experts from Harvard, Columbia, Berkeley, University College London, and other major research centers signed an open letter to BMJ editorial director Fiona Godlee. The letter called the decision to republish the original findings â€œscientifically and ethically indefensibleâ€ and â€œpotentially harmfulâ€ to children. It also stated that the journal â€œhas now re-published positive primary results generated by outcome-swapping in a study that did not meet a strict publication requirement [i.e. prospective registration] specifically intended to prevent outcome-swapping and other kinds of selective outcome reporting.â€
The Lightning Process study and its illegitimate results remain in the literature. It is now being cited by Norwegian researchers seeking to conduct another clinical trial of this woo-woo training–this time for adults. Shame on BMJ and everyone involved.
So, enough of that diversion. Below are the first few paragraphs of Garner’s most recent post:
â€œHas covid-19 gone?â€ My first thought every morning for six months. A few weeks ago, I was jubilant. The muscle aches had evaporated, my head was clear. I announced this to Rachael, a friend who knows chronic fatigue well. â€œFantastic, Paul. You have found your baseline.â€ Crestfallen, I realised this was not the end; it was the end of the beginning.
The beginning, a â€œnear deathâ€ experience with covid-19 that I described earlier, was like a grenade had exploded in my hands. Dazed, deaf, and befuddled, I spent weeks wondering, where has the shrapnel lodged? Are some fragments still fizzing? In my heart? Is my brain still infected? Why was I stumbling for words?
I knew I needed to pace. My head was foggy, I lost my symptom diary spreadsheet, I forgot to measure screen time. I sought professional help, I wanted feedback, practical advice. I was desperate, tired, grumpy. I wanted someone to help me pace and thought occupational health could refer me to a specialist service. Instead, I was told I needed a course of cognitive behaviour therapy (CBT).
Read the rest here.
Last month, BMJ posted an article called â€œManagement of post-acute covid-19 in primary care.â€ It was better than expected–again, given the BMJ provenance. In the section on fatigue, it includes this surprisingly reasonable paragraph:
â€œThere is much debate and controversy about the role of graded exercise in chronic fatigue generally (see patient responses to a recent Cochrane review) and in covid-19 in particular (see a recent statement from the National Institute for Health and Care Excellence (NICE). Pending direct evidence from research studies, we suggest that exercise in such patients should be undertaken cautiously and cut back if the patient develops fever, breathlessness, severe fatigue, or muscle aches. Understanding, support, and reassurance from the primary care clinician are a crucial component of management.â€
So far, the article has more than a dozen rapid responses. One, from Patricia Davis, a retired British teacher, addressed the gaslighting that ME patients have faced and how the same is happening to long-Covid patients. Hereâ€™s how it begins:
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.
You can read the rest here.