USA Health Agencies Officially Scorn ME/CFS Patients Again

NIH opens six clinical trials to study Long Covid, ignoring ME/CFS patients

On May 8, the National Institutes of Health announced that it “will launch clinical trials to investigate potential treatments for long-term symptoms after COVID-19 infection, including sleep disturbances, exercise intolerance and the worsening of symptoms following physical or mental exertion known as post-exertional malaise (PEM).” The agency is currently enrolling participants over the age of 18 who meet other trial-related criteria. (1)

The clinical trials will examine the sleep disorders, fatigue, cognitive dysfunction and other symptoms experienced by Long Covid patients and are named “RECOVER-SLEEP” and “RECOVER-ENERGIZE.”

RECOVER-SLEEP encompasses two trials. One will “test two drugs (modafinil and solriamfetol) approved by the Food and Drug Administration to treat people who have problems staying awake during the day, known as hypersomnia.” The second trial will “test potential treatments for complex sleep disturbances due to long COVID, including melatonin, an over-the-counter supplement commonly used to treat people with sleep disorders and general insomnia; and light therapy, which is used to help people reset their sleep cycles.” (1)

RECOVER-ENERGIZE also comprises two clinical trials. One will “test a program that combines exercise training, strength and flexibility training,  education, and social support, collectively known as personalized cardiopulmonary rehabilitation. The program is designed to help people who experience exercise intolerance with symptoms such as shortness of breath and fatigue during exercise after having COVID-19.” The news release notes that all participants will be screened for post-exertional malaise (PEM) and that no patients with PEM will be included in this trial.

The second RECOVER-ENERGIZE trial will “test a program known as structured pacing, which is designed to help participants with PEM identify, control, and minimize symptoms that developed after having COVID-19 by regulating or pacing their daily activities. Currently, structured pacing is the only intervention used to treat PEM.” (1)

About Long Covid, a 2023 news release stated, “Most people infected with SARS-CoV-2, the virus that causes COVID-19, recover within about a week. But others have symptoms that linger for weeks, months, or even years after diagnosis, or their symptoms go away but return months later. Known as Long COVID, this condition affects millions of people—as many as one in five who are infected with the virus. The symptoms are extremely variable, can involve nearly any bodily system, and can be debilitating.” (2)

These studies are undeniably important to people with Long Covid, who are very sick, as was noted by Walter J. Koroshetz, MD, director of NIH’s National Institute of Neurological Disorders and Stroke, and co-lead of the “RECOVER Initiative.” (1)

“The group of symptoms these trials will try to alleviate are truly disruptive and devastating for so many people struggling with long COVID,” Koroshetz said in the May 8 news release. “When people can’t get reliable sleep, can’t exert themselves and feel sick following tasks that used to be simple, the physical and mental anguish can lead to feelings of utter helplessness. We urgently need to come up with answers to help those struggling with long COVID feel whole again.” (1)

Well, Dr. Koroshetz and all the earnest people trying to find treatments for Long Covid patients—who desperately need them, let us never lose sight of that fact—there’s another group of people who would be really happy to have six clinical studies searching for treatments for their illness, never mind all six starting within two years.  Patients who have been sick, very very sick, for a lot longer than five years but have never garnered this amount of concern and/or clinical attention. A group of patients who can boast about being the subjects of one (1) nine-year-long, treatment-free NIH study of 17 individuals during the last FORTY YEARS. (3)

I am not one of those who believe that research into the elements of illness that Long Covid and ME/CFS patients share will eventually help ME/CFS patients. I see no convincing evidence that the two illnesses are part of a larger group of post-viral syndromes. I don’t believe the party line that the same disease process is causing shared symptoms like fatigue and cognitive dysfunction, only two of their shared symptoms that can each have a plethora of causes.

I’m not alone: Here’s what a patient posted on X about the new Long Covid studies:

And then there’s this, also posted on X, by a husband caring for his wife who has ME/CFS:

#MECFS is unimaginably isolating, especially for severe patients like D.
The disease just doesn’t make sense; even for me, it’s taken a year of caring
for her every day to start to understand.

To get a sense, D has spent the last year and a half in her room, unable
to watch TV or read a book or spend time with friends.

She cannot walk or take care of herself. She can brush her teeth and feed
herself, but not much more than that. We can cuddle and hold hands, but
sometimes that’s too much for her. It’s so removed from normal life, and so
much worse than you could ever imagine.

It's hard to share these things, because I fear people will blame me or
blame her for not treating her properly, for not taking this medication or that
supplement, or following such and such a protocol. Or worse yet, suggesting
that all she needs is to get up and go for a walk.

Even on this post, people will say those things.

But there’s no consistent treatment or even diagnostics at this point. So, we
are left alone, in pain, wondering if what we’re doing is right or wrong, if there’s
something else we should have done a year ago that would have avoided all this.
We try not to think like that, but it creeps in from time to time.

If you are a physician, please consider getting involved in treating and researching
#longcovid and #MECFS. While D is still very sick, her doctors and treatments
ease her burden and give us hope.

So, good effort on Long Covid, Dr. Koroshetz, colleagues, and NIH. Could we see one-quarter of this level of effort—or even one-eighth; some might even settle for one-sixteenth—exerted to find treatments to help ME/CFS patients?

If not, could you please tell us:
WHAT DO ME/CFS PATIENTS AND ADVOCATES HAVE TO DO TO GET YOUR ATTENTION?

Kindle and paperback versions of my most recent books, America’s Biggest Cover-Up: 50 More Things Everyone Should Know About The Chronic Fatigue Syn­drome Epidemic And Its Link To AIDS, Updated 2^nd Edition (2022) and Ampligen: The Battle for a Promising ME/CFS Drug (2022), are available on Amazon.com

BIBLIOGRAPHY
1.        “NIH to open long COVID clinical trials to study sleep disturbances, exercise intolerance, and post exertional malaise: Part of the NIH RECOVER Initiative, trials will test four treatments.” NIH News Release, May 8, 2024. https://www.nih.gov/news-events/news-releases/nih-open-long-covid-clinical-trials-study-sleep-disturbances-exercise-intolerance-post-exertional-malaise
2.        “NIH Launches Trials for Long Covid Treatments.” NIH “News and Stories,” August 2023. https://covid19.nih.gov/news-and-stories/nih-launches-clinical-trials-long-covid-treatments
3.        Walitt, B., Singh, K., LaMunion, S.R. et al. “Deep Phenotyping of Post-infectious Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Nat Commun 15, 907 (2024). https://doi.org/10.1038/s41467-024-45107-3