Welcome to our ME International newsletter. We hope you find some valuable information in these newsletters. If you want to contribute to our next newsletter or have comments and suggestions, please let us know.
This is not what doctors should prescribe for ME patients!
Seriously, though, the Workwell Foundation's article "Opposition to Graded Exercise Therapy (GET) for ME/CFS" is a good letter to have on hand when trying to explain the danger of exercise for #pwME (people with ME).
In addition, HERE are two videos from Voices From The Shadows entitled "Understanding Graded Exercise Therapy for ME/CFS" that explain the dangers of GET.
PATIENT CARE
Where To Find Links To The ME IC Primer (#MEICPrimer)
Plus we now have the IC Primer in multiple languages on the primer/cheat sheet page. More translations are expected soon. If anyone knows of a translation not listed, please contact us at [email protected].
ADVOCACY
New Organizations Added To Website
ME International lists all ME-ICC orgs on the main page of each country and other orgs can be found using the "Other Criteria Organizations" buttons at the bottom of each org page. New orgs recently added include Japanese and Portuguese.
What is Severe ME? Definitions vary but this is considered to be the 25% most ill in the ME community. The IC Primer states: "For a diagnosis of ME, symptom severity must result in a significant reduction of a patient's premorbid activity level. Mild (meet criteria, significantly reduced activity level), Moderate (an approximate 50% reduction in pre-illness activity level), severe (mostly housebound), or very severe (mostly bedridden and needs help with basic functions)."
ME International has a new web page with information specific to the #SevereME group.
SCIENCE
A Conversation With Mike VanElzakker: How His Research Team Studies Neuroinflammation
Click
HERE for a video of Amy Proal interviewing Mike VanElzakker. He explains about the fMRI and PET scan technology and the challenges of looking for encephalomyelitis in
#MyalgicE.
IN MEMORIAM
ME/CFS Memorial Page
"This page acknowledges all those who have passed from ME/CFS or secondary conditions. They acknowledge their suffering and promise that they have not died in vain. With love, we remember them." Click HERE for the memorial page.
The purpose of ME (Myalgic Encephalomyelitis)
International is to
support ME organizations, educate the general public, medical providers, and governments throughout the world , and support ME patients, caregivers, advocates, family and friends.
