usa

via https://cfsme-registry.info

via https://cfsme-registry.info

The Solve ME/CFS Initiative will be returning to Washington DC for the second annual ME/CFS Advocacy Day on Tuesday, May 15, 2018. Save the date! More details and a link to register will be available soon. ME/CFS Advocacy day is a full-day on Capitol Hill bringing people with ME/CFS and their...

From HuffPost: The GOP Wants To Gut The Americans With Disabilities Act And from NBC News: The GOP's H.R. 620 will gut the Americans With Disabilities Act, pushing disability rights back to 1989 From the NBC News article:

In the Kingdom of the Sick: A Social History of Chronic Illness in America - by Laurie Edwards Interview with the Author here: https://www.psychologytoday.com/blog/turning-straw-gold/201306/in-the-kingdom-the-sick-interview-laurie-edwards "When patients are sick with symptoms that aren’t...

I came across a number of interesting Youtube videos which featured Dr Derek Enlander (who I had not heard of). One of the good guys and very anti-PACE. This was one of them from 2013 This is excerpted from the Mount Sinai Medical Center ME CFS Symposium November 2013 In it he talks about a...

As a vocal member of the majority group in the American population, we are returning for an encore performance this year!! Women will be taking it to the streets, in a massive global way, fighting for equality!! #WomensMarch Girl Power! Woman Power! Health Equality! USA...

I've posted this here in members only as I am not sure if it's allowed (I will report it myself to check). If it is, it might get moved, if not then I'm happy for it to be deleted. " Do you have a diagnosis of Chronic Fatigue Syndrome (CFS)/ myalgic encephalomyelitis (ME) and have you been in...

This flu seems more widespread than usual, and more virulent (in California at least). In an ideal world, there would be some kind of surveillance to see how many of the affected go on to develop ME/CFS. This seems like just the kind of event that would produce a lot of new cases. You could...

via https://cfsme-registry.info

Apparently the NIH ME/CFS Working Group have developed Common Data Elements (CDEs) for ME/CFS and they'll be made public tomorrow. The public can comment until 31 January 2018. No link as yet. Here's some info about CDEs: https://clinfowiki.org/wiki/index.php/Common_Data_Element_(CDE)

Great article today in NYT on ME. The content is updated and informative (so I've decided to ignore that the headline is Chronic Fatigue instead of Chronic Fatigue Syndrome) :) New Recognition for Chronic Fatigue by Jane E. Brody - Having recently endured more than a month of post-concussion...

Edit: Deadline for registering to submit a comment is Monday, 27 Nov. https://twitter.com/TomKindlon/status/934257699763695618 Read the whole thing at: https://s3.amazonaws.com/public-inspection.federalregister.gov/2017-25550.pdf

I just saw this from ME Action on twitter (@MEActNet): https://twitter.com/MEActNet/status/930222000966176768 The statement is in an image attached to the tweet so it may be hard to read by some. Here's the text from the image: "Without meaningful and immediate investments in biomedical...