@lesliewhat

Right?? I really wanted to do pillowcases for Carita and me, but couldn’t muster the cognitive or physical energy in time for it. Next year perhaps.

The #MEAction folks are amazingly creative. I don’t know how they do it, honestly—but I’m so thankful for their efforts.

anyone know if like #MEaction has a thing to give to a doctor? I'm gonna maybe go to a doctor again (even though i hate them) and I literally do not have the energy to fight them while i reveal their ignorance. (like wtf is the big deal, no one knows EVERYTHING there is to know)

I rather just fucking die in my hammock than listen to some fucking abled prick pretend they know more than i do. Ok no, I rather sit here watching the same TV show for the 1000th time than bother with useful fucking doctors ever again.

I feel like shit.

#MECFS

Trying to find out more about #HUA or #HoursOfUprightActivity. There was nothing as far as I could see on #MEpedia and the #MEAssociation search was not refined enough. Most of the references I came across refer to #BatemanHorneCenter in USA. Below are three images of the aforementioned’s slides shared on #MEAction .net
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MECFS #pwME

@brianvastag I have this tweet thread from Jamie Seltzer, the Scientific Outreach director of #MEAction, so I trust her on this.

https://twitter.com/exceedhergrasp1/status/1606059212395597824

@bennessb Hi! I'm Effie. I have #MECFS, #migraines, and very possibly #fibro. I really liked the #NEISvoid community on Twitter and would love to see more of that here!

I'm also intermittently working with two big ME/CFS orgs, #MEAction and the Open Medicine Foundation, so I have a good line on some technical answers.

I just unlocked The Lamp of Wisdom (image below) in the Chronic Illness Survey Adventure! Help us light the way to better understanding of #MECFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #POTS #MCAS #hEDS #LongCovid. Find out more on their epi page at #MEAction referenced on image as MEAction.net

https://www.meaction.net/epi/

Inter alia #pwME, the #ChronicIllness #survey Adventure ( Symptom Cluster Characterization in Complex #ChronicDisease ) is a survey-based #study to probe deeply into #MECFS, #LongCovid , #POTS, #hEDS, and #MCAS. #MEAction still need our help to gather the richest #dataset on complex chronic disease ever created. One can take the #questionnaire at a slow pace and save as you go.
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome
Herewith the link to the ‘about’ page: https://www.meaction.net/epi/

#MEAction coordinated a coalition of chronic disease advocacy groups to release an open letter sounding the call for the best researchers in the science of infection-associated chronic illness. @patientled @LongCOVIDnetwk @C19LH_Advocacy @StratHighImpact
#LongCovid #dysautonomia #mecfs #mcas +

https://www.meaction.net/2022/11/22/infection-associated-chronic-disease-experts-needed-at-arpa-h/

RT @WesElyMD@twitter.com

This is an excellent piece on #MECFS and the realities of the suffering millions…

“Up to 20% of COVID infections end in #longCOVID. Roughly 10% of people sickened by a variety of other infections — mainly EBV & HSV— develop ME/CFS, says #MEAction.”

https://bit.ly/3Ap7Nzq

Hear Ryan today on the always excellent podcast from #MEAction, Chronically Complex. #LongCovid #mecfs

https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5saWJzeW4uY29tLzQxMzE0Ny9yc3M/episode/MzlhZGQ2NTYtZTdkYi00MjAzLTgyZTQtNDgwM2MxZmJjNzRi?ep=14

RT @MEActNet@twitter.com

#MEAction's response to NY Magazine’s egregious article on ME and Long COVID is now on our site. Feel free to share! Editor Justin Miller has acknowledged receiving the email, but has offered no further response.
https://www.meaction.net/2022/11/10/elementor-59066/

#pwME #LongCovid #MECFS #MyalgicE

🐦🔗: https://twitter.com/MEActNet/status/1590818739444121600

RT @MEActNet@twitter.com

#MEAction in Washington DC to Stop #LongCovid https://twitter.com/i/broadcasts/1YqxoAYzMMBGv

🐦🔗: https://twitter.com/MEActNet/status/1571894464049983489

@mindfog @alex there's this comment, but I still don't trust we'll get a positive outcome

"Janet Sylvester #MEAction UK said about today's NICE roundtable.

“I felt this was a positive meeting. There were large areas of agreement from all attendees, ..... I'm optimistic for a swift decision from NICE to publish the guideline."

#pwME #PublishThatGuideline https://t.co/rZWEXoD8uw

Sian Leary, of #MEAction, said: “Nice's action is devastating to thousands of people with ME who have been seriously harmed by Get, in some cases leaving them housebound or even tube-fed. It is vital that we ensure Nice’s scientific process is not undermined by a few powerful voices”

FYI: #MEAction is encouraging people from all countries to co-sign their response to the flawed CDC review.

"The CDC (Centers for Disease Control and Prevention) has put out a flawed research review that concluded that the controversial and widely-disputed interventions of graded exercise therapy (GET) and cognitive behavioral therapy (CBT) are likely beneficial in treating ME/CFS. It does not warn that these treatments can be harmful to people with ME."

It seems the psych lobby just won't give up. And of course, this has impacts on Long Covid as the psych lobby have been pushing GET/CBT to these patients too. Argh!

#MEAction have drafted a response and are asking people to add their signatures in support - DUE 15th August. Info & sign here: https://www.meaction.net/2021/08/02/sign-on-to-meactions-response-to-flawed-cdc-review/

:boost_ok:

#MECFS #ChronicIllness #Disability #LongCovid
@MECFS
@ChronicIllness