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.

 

 

{ 10 comments… add one }
  • Helen Donovan 12 May 2020, 6:38 pm

    Thank you David for all your work you have done over the years to bring ME/CFS awareness to the world
    I am so glad your crowdfunding went well !

    Kind regards
    Helen

  • Alicia Butcher Ehrhardt, PhD 12 May 2020, 8:32 pm

    The diversion of funds from real research to these scammers proceeds apace. It is shameful – but their fake scientists have NO SHAME.

    I hope some day the money trail is laid bare.

  • CT 13 May 2020, 5:38 am

    Are we are likely to see more cases of prolonged post-COVID-19 sickness in doctors and healthcare workers, I wonder? If so, will they be dismissed by their colleagues as having ‘MUS’? Could this be the moment that they wake up to the nonsense of ‘MUS’ and belatedly start to question all that they’ve been taught? Or have they been so indoctrinated that they’ll accept that their newly-acquired post-COVID symptoms are due to the trauma and stress of what they’ve gone through?

  • Wendy 14 May 2020, 8:07 am

    “I think this has to be handled very carefully so those with Post Covid19 are not hijacked into the one size fits all ME/CFS. I might feel differently if people were able to separate ME from CFS but very few understand exactly what ME-ICC, Ramsay or Hyde is – and it’s not ME/CFS.

    Currently, American Dr’s are jumping the gun and trying to raise prevalence using Post Covid19 for additional funding which will only hurt these patients in the long run just like it has for the ME-ICC, Ramsay or Hyde patients being mixed in with CFS.”

    The WHO has already addressed this in both the WHO ICD 10 and 11. Although there are similar symptoms, the Covid19 virus is different from the viruses that cause ME. See below for codes.
    .
    Covid-19 is classified as ARDS where SARS is. Post SARS Syndrome & Chronic Post SARS Syndrome.

    WHO ICD 10
    U07.1 Covid 19 Virus identified confirmed by lab tests
    U07.2 Covid 19 Virus not identified
    Both U07.1 and U07.2 may be used for mortality coding as cause of death.

    In ICD-11,
    COVID-19 is RA01.0 – Confirmed diagnosis
    Covid19 is RA01.1 – Clinical Diagnosis (suspected or probable)

  • Wendy Boutilier 14 May 2020, 8:12 am

    I think this has to be handled very carefully so those with Post Covid19 are not hijacked into the one size fits all ME/CFS. I might feel differently if people were able to separate ME from CFS but very few understand exactly what ME-ICC, Ramsay or Hyde is – and it’s not ME/CFS.

    Currently, American Dr’s are jumping the gun and trying to raise prevalence using Post Covid19 for additional funding which will only hurt these patients in the long run just like it has for the ME-ICC, Ramsay or Hyde patients being mixed in with CFS.

  • Wendy Boutilier 14 May 2020, 8:13 am

    The WHO has already addressed this in both the WHO ICD 10 and 11. Although there are similar symptoms, the Covid19 virus is different from the viruses that cause ME. See below for codes.
    .
    Covid-19 is classified as ARDS where SARS is. Post SARS Syndrome & Chronic Post SARS Syndrome.

    WHO ICD 10
    U07.1 Covid 19 Virus identified confirmed by lab tests
    U07.2 Covid 19 Virus not identified
    Both U07.1 and U07.2 may be used for mortality coding as cause of death.

    In ICD-11,
    COVID-19 is RA01.0 – Confirmed diagnosis
    Covid19 is RA01.1 – Clinical Diagnosis (suspected or probable)

  • Jan Montgomery 14 May 2020, 5:37 pm

    I was founder of the SFCFIDS.

    The attached film, Living Hell, was made by us in the early 90s

    Everyone thought it was viral, or auto immune. Jay, Levy, Phil Lee, State and Federal public health, all of whom were involved in the HIV movement. It just seemed to be a virus.

    With Jay, we opened a clinic at UCSF for fatiguing disordered and were shamed out in 6 months.

    That’s my story and I would like to get it out and find out what happened to change everything.
    Good time to be a virologist..hope you and yours are safe

  • Steve Hawkins 20 May 2020, 4:17 pm

    We in the rest of the world are grateful for the US government’s noble sacrifice of its people in endeavouring to keep the coronavirus virus circulating long enough for vaccines to be tested against it next year.

    Many thanks to all.

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