Trial By Error: UK Docs Speak Up on Long-Covid; Mayo Shifts Gears (a Little)

By David Tuller, DrPH

Doctors in UK urge caution on long-Covid exercise advice

Despite BMJ’s current dereliction of key editorial oversight responsibilities, it has provided a forum for members of the medical community with Covid-19 and post-Covid symptoms to express their strong views.

The reference to current dereliction of key editorial responsibilities involves a case I and others have raised repeatedly with BMJ in recent months. The concerns relate to a study of cognitive behavior therapy and music therapy for chronic fatigue in adolescents after acute EBV, which was published in April by BMJ Paediatrics Open. More than three months ago, four colleagues and I alerted the journal itself, along with BMJ’s editorial leadership, that one of two peer reviewers flatly stated in his review that he had not read €œbeyond the abstract€, in other words, he did not actually read the study.

Even before we sent our letter, a sharp ME/CFS patient had previously highlighted multiple methodological problems with the paper in a cogent and persuasive rapid response. Among other issues, the study was described in the protocol as a fully powered trial but it was published, falsely, as if it were designed as a feasibility study seeking data for a fully powered trial. Given this indisputable evidence of questionable reporting of results and a broken peer review process, it is unclear why the journal and BMJ’s editorial leadership have so far refused to take action on this problematic paper, especially at a time when people around the world are desperately seeking reliable information about post-viral fatigue.

Putting aside that issue for the moment, BMJ deserves credit for posting physician Paul Garner’s series on his personal journal of illness and his struggle to recover. BMJ has now posted a letter headlined €œFrom doctors as patients: a manifesto for tackling persisting symptoms of covid-19.€

The letter, signed by dozens of doctors in Britain, emphasizes how much we don’t know about the coronavirus and its long-term impacts. It makes the critical point that testing shortages and inadequacies, especially in the early stages of the epidemic, mean that many who had Covid-19 do not have a positive viral test. €œThus, adherence to positive test results as a criterion for access to medical services or specific covid-19 sick pay arrangements with employers is unacceptable in the context of a clinical diagnosis of covid-19,€ they write.

The letter does not explicitly mention the symptom of post-exertional malaise, although it draws attention to cardiac inflammation among long-Covid patients. Appropriately, the letter warns against a uniform approach to treatment and sounds a welcome cautionary note on the role of exercise. In particular, it references the statement from the National Institute of Health and Care Excellence, which advised that the standing guidance for GET in ME/CFS should not be assumed to apply for post-Covid symptoms:

€œA reliance on €œone size fits all€ online rehabilitation services risks serious harm to patients if pathology goes undetected and is a missed opportunity for clinicians to develop their experience with the sequelae of this virus that is set to be an ongoing presence in our clinical practice. Where current guidance has been issued, such as the statement from the National Institute for Health and Care Excellence cautioning against graded exercise therapy in the context of covid-19, it should be communicated quickly to clinicians on the front line.€

The whole thing is well worth reading.


Mayo’s shifts gears (a little bit, anyway)

Patients, and me, have been blasting the Mayo Clinic for years for its adherence to the precepts of the CBT/GET ideological brigades. For unclear reasons, this prestigious medical center has chosen to undermine its sterling reputation for excellence by promoting discredited strategies in treating patients with what it has continued to call chronic fatigue syndrome. My most recent post about “Mayo’s Crappy Website” was last December.

Some of the blame for Mayo’s recalcitrance and resistance to change can probably be assigned to the US Centers for Disease Control and Prevention, which has routinely failed in the past to exert much effort ensuring that anyone actually knew that it had changed its ME/CFS recommendations. When the CDC made the change in the summer of 2017, it did not announce its decision. I was alerted to it by a social media post. As far as I know, its response to me was the first public acknowledgement that CBT and GET were no longer the recommendations for treating the illness. While the agency has since taken some positive steps to disseminate more appropriate information, it has refused to explain or apologize for its longstanding support of PACE and its bogus findings.

So Mayo has finally fiddled with the language on its website for what it continues to call CFS. The immediate decision seems to have been prompted by a tweet last January chastising Mayo for its harmful and outdated recommendations. In any event, new version is definitely an improvement, although it still falls short on many aspects.

The new version is here. The older version is here. Readers can make their own assessments. But one key change is the removal of the following passage in a section on therapy:

The most effective treatment for chronic fatigue syndrome appears to be a two-pronged approach that combines cognitive training with a gentle exercise program.

  • Cognitive training. Talking with a counselor can help you figure out options to work around some of the limitations that chronic fatigue syndrome imposes on you. Feeling more in control of your life can improve your outlook dramatically.
  • Graded exercise. A physical therapist can help determine what exercises are best for you. Inactive people often begin with range-of-motion and stretching exercises for just a few minutes a day. Gradually increasing the intensity of your exercise over time may help reduce your hypersensitivity to exercise, just like allergy shots gradually reduce a person’s hypersensitivity to a particular allergen

That egregious advice has been replaced with this:

Many people with chronic fatigue syndrome benefit from:

  • Counseling. Talking with a counselor can help build coping skills to deal with chronic illness, address limitations at work or school, and improve family dynamics. It can also be helpful for managing depression.
  • Addressing sleep problems. Sleep deprivation can make other symptoms more difficult to deal with. Your doctor might suggest avoiding caffeine or changing your bedtime routine. Sleep apnea can be treated by using a machine that delivers air pressure through a mask while you sleep.
  • Exercise. Aggressive exercise regimens often lead to worsened symptoms, but maintaining activities that are tolerated is important to prevent deconditioning. Exercise regimens that start at a very low intensity and increase very gradually over time may be helpful in improving long-term function.

This language remains problematic. For one thing, it recommends what is apparently a kind of GET-Lite. It warns only against €œaggressive€ exercise regimens, whatever that means. I am not aware of serious evidence that any exercise regimens based on the notion of deconditioning lead to positive outcomes in chronic fatigue syndrome.

Perhaps these exercise regimens lead to positive outcomes in cases of idiopathic chronic fatigue, or fatigue secondary to depression, anxiety and other mood disorders. But this Mayo site is supposed to be about the clinical entity misnamed chronic fatigue syndrome, not about chronic fatigue.

Hey Mayo–keep up!

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