Trial By Error: Today is May 12th and Everyone’s Missing

By David Tuller, DrPH

Today, May 12th, is International Awareness Day for Chronic Immunological and Neurological Diseases (CIND), often shortened to International ME (or ME/CFS) and Fibromyalgia Awareness Day. Besides ME, other diseases included in the CIND group, per the May 12th International Awareness Day site, are chronic fatigue syndrome, Gulf War Syndrome and multiple chemical sensitivity. The date was chosen because it is the birthday of Florence Nightingale, who apparently suffered from an ME-like condition.

In recent years, patients and advocates around the world have mounted “millions missing” gatherings and demonstrations on May 12th to highlight the numbers of people whose lives have been devastated by ME, or whatever name is used for this illness or cluster of illnesses. These analog actions are not possible today. Everyone is missing this year. Today’s events have all gone virtual.

The coronavirus pandemic has understandably distracted attention from all other issues, health-related and otherwise. That is likely to continue to be the case for months to come, although as countries gradually open up again the balance of the world’s attention is likely to recalibrate a bit. It is clear that we are likely to see cases of prolonged post-COVID-19 sickness that could look very much like ME. How those cases are handled, treated and researched could ultimately have a major impact on those who currently have ME.

Life has stalled overall, but that hasn’t stopped the publication of problematic and often laughable research, such as a recent Norwegian study looking at cognitive behavior therapy combined with music therapy as a treatment for kids with “chronic fatigue” after a bout of mononucleosis/glandular fever. This paper was published by BMJ Paediatrics Open–a journal whose editorial board includes Professor Esther Crawley, the ethically and methodologically challenged Bristol University pediatrician and researcher. Just saying.

And this month, the Journal of Psychosomatic Research has published yet another questionable paper from Professor Trudie Chalder of King’s College London, one of the lead investigators of the discredited PACE trial. The study–Cancer-related fatigue and functional impairment–Towards an understanding of cognitive and behavioural factors, demonstrates once again that the CBT/GET ideological brigades have one tired template that they apply to every issue. Perhaps the presence of PACE co-investigators Professors Michael Sharpe and Peter White on the journal’s editorial board has something to do with continuing publication of their colleague’s scientifically deficient work.

Much is on hold–but people who have been sick for years or decades are still sick and still waiting for effective treatments. If investigations of the long-term sequelae of COVID-19 can help shed light on the mechanisms behind the development of chronic disease after an infectious illness, perhaps the current devastation will yield future dividends for ME patients. In any event, on this particular day of awareness, I will allow myself to hope that will be the case.

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