Discussion in 'BioMedical ME/CFS News' started by Tom Kindlon, Jan 8, 2020.
To facilitate sharing:
Covered on STAT
New York Times
Yahoo UK News
USA Today are covering it but I am being redirected to their EU site
This sort of wave of publicity is the type of thing the CMRC project could do with if funded.
It's MEawarenesshour in less than three hours, so those wanting to participate could consider waiting with sharing and retweeting these articles on Twitter until then.
Don't forget to add the hashtag #MEawarenesshour
More info on MEawarenesshour in this thread: https://www.s4me.info/threads/meawarenesshour-every-wednesday-on-twitter.13103/#post-229060
I'm confused (which doesn't take much..). Is this another inter-mural study or is this highlighting the existing one?
Highlighting the existing one
Not bad. Could have been better, could be worse. The scale of the problem isn't well-represented, but then it rarely is, even in other diseases.
Best thing out of this is if it leads to more participants in the study.
Patients Push Limits for Clues to Chronic Fatigue Syndrome By LAURAN NEERGAARD, AP Medical Writer (Jan 8, 2020)
Is this the post-infectious study?
See also this thread about the NIH Intramural ME/CFS study:
The NIH study needs patients
Pretty good coverage. Not as ignorant or stereotype-laden as usual.
Just for completeness here's the link to the AP news website which has the text for the story along with photos and video:
Edit: The video was also posted on the Associated Press YouTube channel which has 1.1 Million subscribers.
Interesting that his onset followed strep throat. I suspect my onset also followed strep. I (foolishly) didn't see a doctor about it, but it was unlike any sore throat I'd ever had. Every time I swallowed, the back of my throat felt like I was drinking acid. Those sore throat lozenges were useless. That went on for 2-3 days, as I recall. Didn't fully recover for 2 weeks. A week after that, bang!, onset of ME/CFS.
If only those scientists had the funding they need.
Now that will be the day.
The Associated Press published a syndicated article last week profiling a study being done by the NIH on ME/CFS. The article describes well the severity of ME, and the immense challenges our community faces, including lack of treatments, difficulty getting a diagnosis, skeptical doctors and a lack of knowledge about the disease.
While the AP article explains well the dire nature of ME/CFS, the reporter fails to mention how the NIH has played – and continues to play – a central role in perpetuating this health crisis, which has plagued the ME community for nearly 40 years since ME/CFS captured national headlines in the early ’80s.
#MEAction has written the following letter to the AP journalist to explain the larger story at play.
MEAction: NIH Neglect Is a Key Reason For The ME/CFS Crisis
This article was the lead article in the Science & Health section of our Sunday newspaper. At least should help with public awareness.
Separate names with a comma.