Solve M.E. takes the lead in ME/CFS and Long COVID Education

A message from Solve M.E. President and CEO Oved Amitay:

Our mission at Solve M.E. is to make ME/CFS widely understood, diagnosable, and treatable. A key component to improving the lives of people with ME/CFS is to fight the stigma and change the narrative of this devastating and misunderstood disease.

Last week, the Wall Street Journal published an op-ed by a psychiatry resident at McMaster University naming our organization, our work on behalf of ME/CFS patients, and connecting it to the growing group of Long COVID sufferers — two diseases that he falsely claims were invented by patient activists and are manifestations of mental illness.

Those who suffer from Long COVID are facing the same disbelief and gaslighting our community has endured for decades, so we must now also tackle misinformation about Long COVID and its connection to ME/CFS.

In response, I wrote a letter to the editor of the WSJ, which you can read here. The author’s perspective is absolutely outside of the mainstream medical establishment’s understanding of post-viral diseases, but unfortunately the highly visible platform creates the wrong impression that this is a credible view. Many members of our community contacted the author and the WSJ to let them know that this perspective is misinformed.

Our Director of Advocacy and Community Relations, Emily Taylor, wrote to McMaster University leadership and explained why the piece was both incorrect and harmful to these vulnerable populations. She shared Solve’s expertise and resources and offered to assist in educating McMaster students, faculty and staff about ME/CFS and Long COVID. We hope they will respond and accept our help.

While the publication of harmful fallacies by a health care provider in a prestigious media outlet is angering, it does provide us with the opportunity to take a leadership role in promoting accurate information and educate those in positions of power who can impact the lives of so many.

Solve M.E. has also provided vital information across other platforms, including:

  • My presentation with Research Advisory Council (RAC) member Dr. Anthony L. Komaroff at a virtual trade show hosted by the global leadership group YPO. Dr. Komaroff and I discussed the potential impact of Long COVID on healthcare systems and the global economy, and how COVID long haulers, the ME/CFS community and other complex, chronic disease communities can join forces for progress in the study, understanding and management of Long COVID. Watch our presentation here.
  • A Guardian article on women and Long COVID, in which I spoke to journalist Gabrielle Jackson about why it’s crucial to learn more about Long COVID in its early stages. Read the article in its entirety here.
  • An upcoming episode of the PBS program White House Chronicle. This month, I will join Llewellyn King to discuss ME/CFS and Long COVID in an episode of his show, which airs nationwide on more than 200 PBS and public, educational and governmental access stations; and worldwide on Voice of America Television. We’ll share a link as soon as it becomes available.

Solve M.E. will continue to lead the charge in raising public awareness about both ME/CFS and Long COVID, and take advantage of every opportunity to educate others, especially researchers, scientists, political leaders, and healthcare providers. Thank you for trusting us to speak up on your behalf, and for making all of our work possible.

Onward, with sincere gratitude and hope,

Oved Amitay

Solve M.E. President and CEO