Activists Push NYS Department of Health to Share Information on ME/CFS and Long Covid

letter on NYS Department of Health letterhead (full text of letter linked in post)

As described in a fieldnote entry on #MEAction’s “Stop. Rest. Pace.” campaign, people with ME/CFS have been advocating since early in the pandemic for allocating greater research and resources toward the post-viral and long-term effects of Covid-19. In addition to public campaigns—and drawing on earlier advocacy work in which patients wrote directly to doctors to educate them about the lived experience of ME/CFS (and challenge many doctors’ beliefs that ME/CFS is “in patients’ heads”)—members of #MEAction’s New York chapter targeted public health leaders and healthcare providers. They successfully convinced Howard Zucker, the NYS Commission of Health, to include the following information about both Long Covid and ME/CFS in his July 2021 monthly letter to healthcare providers:

The resemblance of some post-acute COVID-19 symptoms to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has also been noted. The National Academy of Medicine estimated in a 2015 report that between 836,000 and 2.5 million Americans are affected by ME/CFS, and an estimated 75 percent were triggered by viral or bacterial infections. Symptoms can often be so severe that patients are unable to work or perform household tasks. In May of 2017, I issued my monthly letter on ME/CFS, whose hallmark symptoms include profound fatigue and post-exertional malaise. The diagnostic criteria for ME/CFS can be found here. Learning more about long COVID may lead to important insights into how to treat individuals with ME/CFS due to other viral illnesses.

While such a statement may seem small, it builds off of a campaign that resulted in the May 2017 letter, and represents a significant step in gaining recognition about ME/CFS among medical providers and political leaders. In fact, in June 2022, Governor Hochul signed legislation to create an ME/CFS education and outreach program. —Harris Kornstein