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Post about the discussion is here: Is Long Covid a type of ME/CFS? Discussion thread

Senator Markey is my senator and while I appreciate this because it’s better than nothing (Stockholm Syndrome), I would have also liked to see tweets pushing for ME/CFS funding commensurate with disease burden, homecare/paid carers, and for members of congress to do something to get us out of...

Good find, @ahimsa :thumbup:. What a heartbreaking story. This jumped out at me. I don't think I've come across this information before.

Laurie Jones at ME Action sent me an email today saying, "Thanks, Laurie! We love Rebecca Vallas and work with her closely. I will see if she could give a quote specifically." Yay! :)

I sent one more letter to ME Action: Dear Laurie Jones, Please send this to your press team too so they can have these talking points along with the ones I already sent you from the Time article, “Democrats Want to Reform This Program That Helps Poor Elderly and Disabled Americans.” There are...

I received this email tonight regarding the information I sent to ME Action that is in post #9 above. It would have been nice if she told me what the line was edited to.

This is the email I got from ME Action today. I sent them the 2 things I posted above in posts #8 and #9. I’ve been sick since 1983 and I’m severe/very severe. I’ve left my home once since 2008 and it was to go to the ER by ambulance. I don’t have homecare or an abled caregiver. I often have...

Biden needs to be held to his promise to expand SSI benefits! Democrats Want to Reform This Program That Helps Poor Elderly and Disabled Americans https://time.com/6082787/democrats-sherrod-brown-ssi/ Edited to add article title.

Direct link to #MillionsMissing 2022 Activism From Home Toolkit https://docs.google.com/document/d/11vr3VLii0j6Jq8Kvk0eTG11M940u6Nk6v1iKx4v0WYg/edit# I just sent this letter to ME Action using the "contact us" link on the bottom of their website.

But we don’t say “negative physical stress” or “negative cognitive stress” so I see no reason why we should be saying “negative emotional stress” instead of just “emotional exertion” which can happen across the spectrum of emotions.

I didn't mean open talks for patients instead of their closed meeting. I meant it would have been nice if they created some presentations for us to watch in addition to their closed meeting to keep us updated and make us part of things.

Janet gave us context about "Type A personality" in her tweet: "This is exactly why these meetings are not public. There is absolutely nothing unscientific about hypothesizing that people who are high achievers and work hard and over exert themselves may be at risk for something." We also...

I can’t comprehend how people don’t see how things like “Type A personality” and “Negative Emotional Stress” stigmatize and harm us further. Not only can most of us not get medical care, it’s hard to even find safe documents to share with a doctor should we be fortunate enough to find one who...

WTF? We deserve so much better. :banghead:

NIH Extends Funding for ME/CFS Research Centers https://www.meaction.net/2022/09/07/nih-extends-funding-for-mecfs-research-centers/

How long covid studies could help scientists solve the long-unsolved mystery of post-viral illnesses Increased awareness, funding and research participants could spark progress and new treatments...

Doctors are taking it on themselves to figure out long Covid Absent more guidance from the government, physicians are sharing ideas for treating the mysterious condition. https://www.politico.com/news/2022/09/07/doctors-are-taking-it-on-themselves-to-figure-out-long-covid-00054748

Unbelievable, the experimental treatment for "brain fog" is a video game! :banghead:

Unfortunately, it's not going to be recorded for us to be able to watch. Edited to add: Later in the video Janet said that an individual researcher may request that their presentation be recorded and that the recording will be given to that researcher to do what they want with. Edited to add...

“How Long?” For People with Long COVID, asks Powerful National Public Service Announcement https://www.healthrising.org/blog/2022/08/10/how-long-long-covid-psa/ How Long Until We Solve Long Covid? https://solvecfs.org/solve-long-covid/ Edited to add link. "How Long?" PSA starts with...