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Good idea! MEAction has created a playlist on YouTube for these videos: https://www.youtube.com/playlist?list=PLhO4nWkiP5QRx2FDaAwd8EAgam8pZFQ84&jct=rwaYmjg0ZgzWvx5GqbE7lzFvIi2Lcg Here's the tweet they sent out today: https://twitter.com/MEActNet/status/1197939498904104960

No problem! I am often confused by copyright issues. I think this warning just means don't copy the entire text of the article, or large sections of the article, and post it somewhere else. Or read the entire article on air on a radio show. Or do any other form of plagiarism. Posting links to...

I've been pretty foggy lately but I can't see why there would be copyright issues with posting a link to the article. It just eliminates a step in the process so the user can go straight to the article vs. clicking on tweet and then clicking on link to article. Wouldn't the US News & World...

An excerpt from today's ME Action email about the #NotEnough4ME campaign: The idea (in brief) is to make a video saying his response is not enough and post it on social media with hashtag #NotEnough4ME and tag Dr. Koroshetz and NIH. Link with full instructions -...

If I'm reading your posts correctly (not really able to watch your videos) you're interested in more protesting in the streets. So my suggestion here may not be what you're looking for. However, one way to get started would be to ask some other organization to help us boost the number of...

Thanks for the new thread! I look forward to reading more about it as the time comes nearer. I once met with an aide to my own local representative to tell my story and advocate for more ME research funding & awareness. But that was here in Oregon, at her Beaverton office, not in Washington...

I'm trying to do my small part on twitter :) Pinned tweet: https://twitter.com/ahimsa_pdx/status/1188175417473032192 Short thread (several tweets strung together): https://twitter.com/ahimsa_pdx/status/1189358226686402561

More than 3000 signatures so far. :)

A basic standing test may be okay for diagnosing POTS. But what about other forms of orthostatic intolerance? From what I've read the tilt table test and/or the NASA lean test are better at detecting certain problems like Neurally Mediated Hypotension (NMH). Several different names have been...

Dr. Klimas has also done research using tests that were able to distinguish patients with ME/CFS from patients with Gulf War Illness and also from controls. But don't ask me to explain it! I know there's a thread on the forum somewhere but not up to searching at the moment. But I do have the...

Thank you @Michiel Tack :heart:

Thanks for the info, @Lynn :) I did contact OMF. I sent email to info@omf.ngo. No response yet. I will follow-up soon. I think Science For ME would be a good addition to the bottom of this page: https://www.omf.ngo/resources-international-support/

Yeah, it's clearly something they set up for the video. It's almost identical to what was used in the last video that they posted.

I promised to post photos of the bracelet - here they are for anyone who is interested (click to enlarge photos). I'm not sure whether these are given out free to anyone who does a fundraiser for OMF or whether they cost some nominal fee. I didn't get a chance to ask. A fact sheet from OMF...

While searching for a copy of an OMF fact sheet I stumbled across this web page: https://www.omf.ngo/resource-center-2/ It lists a bunch of resources, including patient forums, but not this forum. I have no idea what the OMF criteria are for getting on this list! But I thought I'd point it...

I the read announcement and the nomination form (PDF) which covers a bit more about the nomination process. But I haven't found out how large this advisory council should be. How many volunteers do they want/need for this council? I'm not planning to nominate myself, I'm just curious.

Sorry, I don't have any references to actual research. My post was just meant to be quick summary of the announcement by the ME Action website. I hope this does not sound defensive! I don't mean it that way!:) I'm just not sure what you mean, eg, would like to change the way I worded things...

After a brief pause the "Postcards to Doctors" project has been relaunched as of Oct. 1. The aim of this project is to have patients (as well as friends, family and other allies) write doctors to urge them take a continuing medical education course. See Unrest medical education for information...

Here's a page from the Solve ME/CFS website (they use crowdrise): https://solvecfs.org/crowdrise-fundraising-for-solve-m-e/

Here's a page from the ME Action website: https://www.meaction.net/start-an-meaction-fundraiser/