NIH Long COVID research lacks clear plan to identify and track ME/CFS

MEAction has written to the National Institutes of Health (NIH) expressing our deep concern that the RECOVER Initiative research agenda lacks a clear plan for how to accurately identify or consistently track the onset of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) cases among patients with Long COVID. This is of particular importance because a sizable fraction of people with Long COVID have symptoms consistent with ME/CFS, and many will go on to acquire an ME/CFS diagnosis.

Two technical recommendations we are requesting to be implemented across the RECOVER Initiative are:

  1. use only ME/CFS case definitions that require the hallmark symptom of post-exertional malaise (PEM) and
  2. consistently assess ME/CFS case-defining symptoms across research sites with instruments created by ME/CFS experts.

These actions represent the bare minimum of what is immediately and critically needed to ensure data harmonization and accurate characterization of Long COVID – ME/CFS subgroups.

Failure by NIH (and CDC) to tackle these definitional and methodological issues have significantly hampered ME/CFS research to date. NIH must recognize that they have no choice but to take on the complex challenges of studying ME/CFS as an integral component of the RECOVER research agenda. The consequences of inaction will be to waste taxpayer dollars and further impede research progress, ultimately delaying answers and treatments for people with ME. In our letter, we outline the cascading series of negative impacts that will follow from not doing the necessary work to establish meaningful ME/CFS clinical subgroups within Long COVID.

“hope” is not a course of action

NIH officials have repeatedly assured the ME community that the $1.15 billion Long COVID research initiatives, such as RECOVER, represent a unique “research opportunity” that offers “hope” of scientific breakthroughs for people living with ME. But hope is not a course of action. There is no basis for “hope” if the NIH does not take strategic and specific steps to make this outcome possible.

NOTE: check out these other RECOVER-related recent actions:

  • #MEAction and ME/CFS researchers and organizations sent a joint letter to NIH with ME/CFS recommendations (August 2021).
  • MEAction endorsed Patient Led Research Collaborative’s (PLRC)’s open letter on RECOVER (November 2021).
  • We support the companion proposal by Body Politic and PLRC calling on NIH to implement structures for more meaningful engagement of patient advocates.

2 thoughts on “NIH Long COVID research lacks clear plan to identify and track ME/CFS”

  1. Thank you so much for your focused effort on our behalf. I’m very grateful that you are doing this work!

    Kindly Yours,

    DeAnn Burris

  2. Thank you so much! I’m telling you, I’ve still got PTSD from trying to get disability to pay me for insurance I had paid for out of my paycheck. It took 2 and a half years to get SSDI.
    I fought insurance company until I ran out of appeals and 4 and a half years later I finally and almost too late got an EriSA attorney to go to mediation for me.
    I got stuck with only 2 years of payment minus 33 3% attorney fees. Thanks to secondary depression from this dang disease. It was in small print in the LTD insurance policy, only 2 years of income will be paid if depression is even a part of the diagnosis. Excuse me, Syndrome.
    Sorry, you get sick one day and even trying to get a shower and get dressed for work wears you out. Forget about working, and having to take a 3 hour nap every day at work. I tried it, staying late trying to get my 40 hours in. Eventually more and more debilitating symptoms added to this disease and at work i went from excellent employee to a very unreliable employee. I can’t imagine fighting the NIH. It’s got to be dangerous.
    Not only did I have to settle for only 2 years of repayment for income promised to me; their website even advertised they had specialized review for AIDS and Chronic Fatigue Syndrome; Someone neglected to tell the people reviewing my case! They did change their website after I turned them in for false advertisement because they used a standard functional capacity exam. Not specialized review. Stating I could sit for 6 hours, stand for an hour and walk for an hour.
    They didn’t run a second test to see if I could even do that short evaluation that a computer program predicts your probability based on blood pressure and heart rate. I couldn’t even stay up for 4 hours. How was I going to sit for 6?
    I was given a gag clause and had to shut down my website, back when anyone could have a website through yahoo geocities. So I can’t say which insurance company it was, hiding behind a big name company so that I couldn’t find court cases until after mediatiion and the check was sent to me.
    Those people deserve to be in jail for what they do to people who are assured you at the job interview that you’d be paid if you got sick or injured and couldn’t work. Protection for you and your family.
    Nah they are racqueterers in my book, take your money and don’t want to pay you, even with 7 doctors saying you can’t work. They wouldn’t say what proof they needed. They wouldn’t even see me themselves during the appeals process.
    I fought hard for SSDI too and finally got approved before the hearing but too late to save our home and half of our belongings. That’s before the assistance for rearraing mortgages became popular with the 2009 devastating economy crash.
    Now COVID l long haulers have to worry about getting help through these entities. They’re also going to get screwed by the NIH along with bad information and lack of support for a cure.
    If an antidepressant and other off label use medications don’t help or make them worse. They will be in the same boat as us. Going from Dr to Dr trying to find a way back to their active lives.
    The only drs that truly could help. I believe, is a functional medicine dr who can find underlying infections or abnormal immune responses in our organs and cells that don’t show up on traditional labs.
    They also do not take insurance. So, $10,000 would be standard of care including traveling and lodging. Not gonna happen to someone on disability, and not rich or at the least have good credit. Credit cards are not for people with limited income and can barely afford rent or a buy from owner, low income small trailer, to live in.
    I would love for the NIH to get hold of those drs that are succeeding, according to their patient testimonials, and assess these tests and treatments aimed at each individual to make that a standard of care for invisible diseases that befuddle the traditional medical community.

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