COVID-19 and Long haul COVID Resources

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Category Archives: Featured news

Photo of US ME/CFS Clinician website. Blue Banner with title at top and a question that reads What is ME/CFS?

All Doctors Should Go To This Website For ME Information!

We are thrilled to share that The US ME/CFS Clinician Coalition has launched a beautiful website to provide clinicians with expert information on the diagnosis and management of myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS). The website includes the basics of clinical management, diagnosis and management, comorbid conditions, and resources on ...
mayo clinic building

Mayo Clinic Removes GET and CBT from CFS Webpage

The Mayo Clinic recently removed harmful recommendations of Graded Exercise Therapy (GET) and Cognitive Behavioral Therapy (CBT) for myalgic encephalomyelitis (ME) from their website, a win for people with ME and their families. The site still contains problematic language and misleading information, but this recent change could help many individuals ...
image of drawings of last year's winners.

Call for Artists: Postcards to Doctors

CALL FOR ARTISTS We’re excited to announce that we are takingsubmissions for our second annual Postcards to Doctors initiative! Read how to submit below. Postcards to Doctors works a lot like Postcards to Voters, which sends handwritten postcards to individuals to encourage them to vote. Postcards to Doctors uses the ...

NIH Director: long haulers “decided to take matters into their own hands”

NIH Director Francis Collins just published a blog post highlighting the plight of COVID-19 “long haulers” and the role of citizen-science efforts at the Body Politic COVID-19 Support Group in compiling the first detailed patient survey of long COVID and analyzing the results. #MEAction reported on the survey results in ...
Summer Update

Our Summer in Review: Advocacy and Education

What a Summer for Advocacy and Education! We know the summer isn’t over yet, but A LOT has been happening with ME advocacy and education in the United States and the United Kingdom, and we want to make sure you are up to date, in the loop, and ready for ...
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ME/CFS and Long COVID: What’s the Connection?

The ME community has faced incredible challenges in achieving compassionate clinical care and adequate research funding.  Now we face a sobering, new reality: a population of post-COVID patients, or “long haulers” are experiencing long-term consequences of COVID-19.  While those with “long COVID” may be diagnosed with other post-viral diseases and ...

Good Morning Britain gets it wrong on post-COVID treatment and ME

#MEAction UK has written a letter of complaint to Good Morning Britain in response to recent statements from Dr Hilary Jones on the programme, regarding the rehabilitation of long COVID patients. In his interview with Kate Garraway yesterday, Dr Jones recommended graded exercise as a strategy for those recovering from ...
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Join Our Community Debrief Meeting about the NIH this Wed.

Join us this Wednesday for a community meeting to debrief about last week's NIH Interagency ME/CFS Working Group meeting, and to discuss where we go from here. Join the call this Wednesday, Aug. 19th at 3pm ET / 12pm PT. The meeting was quite something. At the last minute, Jaime ...
James Strazza sits with guitar in one image, happy and healthy, and in the next image he is laying in bed very sick.

Let Us Honor the Most Severe in our Community Today!

Let us honor the most severe in our community today, Severe ME Day, Saturday, August 8th. Severe ME Day is a day of remembrance when we think of those whom we have lost to myalgic encephalomyelitis (ME), and focus on those living with severe ME. For those of you in ...

Open letter demands action to safeguard people with ME, not just post-COVID patients

#MEAction UK have once again written to the National Institute for Health and Care Excellence (NICE) imploring them to act to safeguard people with ME from harm, after their recent statement cautioning that the recommendation of graded exercise therapy should not be assumed to apply to patients with post-COVID symptoms ...