USA: National Institutes of Health (NIH) intramural ME/CFS study

Dr. Walitt was definitely there for both of my study visits (November 2018 and April 2019). I have great respect for him and felt truly cared for by Dr. Walitt and the staff.

 

I participated in this study and very much agree with Brian Vastag's opinions here. Thank you for participating and speaking out about this important study. We will make progress together!

 

Right. Sigh.

 

A healthy volunteer in the study made several very short clips during his stay.

https://twitter.com/user/status/1171551440529219585


https://twitter.com/user/status/1171561145083342848


https://twitter.com/user/status/1171569269643124736


... and many more.

You can find them on the Solve Twitter account: https://twitter.com/PlzSolveCFS

 

To facilitate sharing:
https://twitter.com/user/status/1172993468035149826

 

This should be reposted time and time again!

It is completely above me why they after what, one year, still have not enough patients for this study, that is the dream for every moderate patient in my view to figure out what is going on!

Please repost this everywhere, also OMF and ME Action should post this, as well as Healthrising!

@Cort @JenB

 

It has been posted repeatedly. Vastag is the husband of the co-founder of ME Action. I think that the difficulty of obtaining diagnoses may contribute to the difficulty in finding people who have been sick for less than 5 years. By the time that people are diagnosed, they are often outside of the time window.

I believe that they will get enough patients for the study, but it’s not easy.

 

Thank you, still, I am quite active online, you are not hearing enough from it if you ask me. (of course nobody does )

 

Merged thread

https://www.youtube.com/watch?v=0_2tZOArfkE

To facilitate sharing:

https://twitter.com/user/status/1214935526790311940

 

Covered on STAT

https://www.statnews.com/2020/01/08/patients-push-limits-for-clues-to-chronic-fatigue-syndrome/


New York Times
https://www.nytimes.com/aponline/2020/01/08/health/ap-us-med-chronic-fatigue.html

Yahoo UK News
https://uk.news.yahoo.com/patients-push-limits-clues-chronic-114036984.html


MSN News
https://www.msn.com/en-gb/news/video/study-seeks-clues-to-chronic-fatigue-syndrome/vp-BBYJ1h3

USA Today are covering it but I am being redirected to their EU site
https://www.usatoday.com/videos/lif...ks-clues-chronic-fatigue-syndrome/2841808001/

 

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.

 

Merged thread

Patients Push Limits for Clues to Chronic Fatigue Syndrome By LAURAN NEERGAARD, AP Medical Writer (Jan 8, 2020)

Is this the post-infectious study?

 

Yes.

 

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:

https://apnews.com/4bc281b36227afb674649cdf9f137be2

Edit: The video was also posted on the Associated Press YouTube channel which has 1.1 Million subscribers.