Meet the Long Haulers Developing ME/CFS

#MEAction sent out a press release last week to 300 major publications in the US introducing them to the long haulers who are experiencing symptoms of myalgic encephalomyelitis (ME), specifically post-exertional malaise.

We alerted the press to the terrifying possibility that 1 million more Americans could develop ME following COVID-19 at the current rate of the pandemic over the next two years.

We educated the press about the risks that graded exercise can pose to people with ME, especially as we see more and more long COVID clinics prescribe exercise to long haulers without making it clear if they are distinguishing between patients with POTS symptoms and patients with ME symptoms.

The press is talking about long COVID daily and we are working hard to ensure that ME is part of that conversation, and that the facts are correct.

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Mayo Clinic logo on a open laptop screen

Exciting news about Mayo Clinic!

We’ve got some very exciting news this week! Clinicians working at the Long COVID clinic at Mayo Clinic’s campus in Rochester, Minnesota met with #MEAction to discuss treatment, research and improved community engagement for people with ME! They reached out to us because they were interested in engaging with a national patient-led organization with strong

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New Volunteer Leadership Program Led by Experts!

We are thrilled to announce that Chimére Smith and Terri Wilder will be joining #MEAction as consultants to execute a new volunteer leadership training program funded by the Ford Foundation! We are so thrilled that we will be able to expand our volunteer programs to include robust training and provide fulfilling roles and opportunities for

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Research Update: The NIH Intramural ME/CFS Study

National Institutes of Health researchers who began what may be the deepest biological investigation ever of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are writing up their findings and plan to circulate a draft among their large team of scientists and physicians for feedback soon.  “The study will help patients and should move the field forward in

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