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Thank you to everyone for your thoughtful comments, and especially @Jonathan Edwards for explaining what you meant. Your response makes much more sense; your original message communicated something quite different to me, as someone not already familiar with the details of your perspective on...

This comment makes no sense to me. #MEAction does not conduct or fund research. My understanding is that this proposal concerned how #MEAction characterizes the evidence for treatments or research findings in its outward communications. That's a valid thing to have opinions on and a debate...

I saw a post recently in an ME Facebook group (can't remember which) with a lot of recommendations for layering clothing and footwear to keep warm when outdoors in a wheelchair for long periods in the winter. Can't look it up now but mentioning it anyway as I may not remember to come back later...

Absolutely! There's no time limit. The videos that have been shared are so powerful--it would be awesome to keep having more come out over the coming days or even weeks. To folks who see this--if you're able to, please consider contributing a video to this effort if you haven't yet...

Sorry, just seeing your tag, @debored13 . Your plan sounds awesome! Not too aggressive. Just make sure to be super careful so you don't get hurt.

Correction: You can continue to sign up using the registration form link in the previous post! Even though the meeting already happened, if you'd like to participate in our first action or learn more about the campaign, just fill out the form and we'll send you the video of the call and written...

Gah, forgot to post this earlier, sorry! Call starts in 1 hour! If you haven't heard, #MEAction is having a "closed-door" community call at 3p ET / 12p PT TODAY (Tues 11/12) about how to participate in the next step of the #NotEnough4ME campaign. For it to be effective, we need as many #pwME...

Really glad to see this discussion going. I think it's a super important topic and have been meaning to weigh in for a while, but have so much to say that I've been putting it off til I have the energy to write everything out... which of course means I'm still waiting. :laugh: You all know how...

Re: sharing: YouTube has a Share button that lets you send the video by email or messaging (eg WhatsApp) and post it directly to Facebook or Twitter, with just one additional click. You can also spread the word by liking and sharing or retweeting/reposting #MEAction's own social media posts of...

I think it's awesome! They did a great job. It's perfect for sharing with folks outside the ME community, to build broad understanding and support for the NIH campaign and bring in some more signatures on the petition. Everyone-- please watch, like, and share share share!

Wanted to add that you can share the #NotEnough4ME NIH petition with just 2 clicks if you have a Twitter or Facebook account! Near the bottom of the petition page, you'll find the Twitter and Facebook logos under the heading "Please share this petition with others" (see image below). Click on a...

#MEAction recently released it's formal response to the NANDSC WG Report. It's an extremely thorough and detailed critique of the plan's utter insufficiency (already articulated by many in this thread), accompanied by a set of demands for major actions the NIH must take. You can access the...

Bumping this as the number of signatures has stalled out in the low 3,000s. Make sure to sign ASAP if you haven't yet! The #NotEnough4ME campaign coordinators think we'll need at least 10,000 names for Koroshetz & the NIH to take our message seriously, so we have work to do! Please share this...

I think legal action could be a very valuable component of ME activism in general and of the current #MEAction #NotEnough4ME campaign specifically. Even if an action (eg filing a complaint with an oversight body) is unlikely to "succeed" in terms of a ruling that forces the changes we want, it...

I think that is indeed what Prusty was suggesting-- that a very small number of cells was infected (not enough to create a significant difference in the concentration of blood particles between controls and pwME), but those cells were actively putting out signals via exosomes that spread the...

I decided to just go ahead and email SMCI / Sadie Whitaker about this, since she fits both categories and has lots of experience in the pharma/biotech world. I hope something comes of it! Thanks to @junkcrap50 for posting about the exosome adsorption company, and to others for the interesting...

This mission sounds tailor-made for ME/CFS research into a biomarker! Someone with scientific credibility and/or advocacy group backing should reach out to them to try to interest them in the disease. I know Sadie Whitaker of SMCI said that exploratory drug company research is where a lot of...

Bump--this is happening today! Per @Denise 's post, many advocates, activists, researchers, etc may not be able to join this call, so please call in if you're not PEM-ed out yourself! It's important that we hold the NIH's feet to the fire in the wake of the conference so they finally give us a...