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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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#Millions Missing 27 Sept 2016 - post coverage, videos, pix, tweets here

Live video of SF:

First part:
https://www.facebook.com/cfsresearchcenter/videos/1193780847360369/

Second part (includes Montoya and afterwards our pose with him)
https://www.facebook.com/cfsresearchcenter/videos/1193785024026618/

Third part (Sonya, Tannenbaum, Dafoe, Gordon, Davis)
https://www.facebook.com/cfsresearchcenter/videos/1193830394022081/
If someone can upload them to YouTube that would really speed up the ability for me to get a transcript done. I would do it, or at least try, but I'm not at home this week so haven't got access to my half decent computer and unlimited fibre broadband.
 
Hi guys! See also: https://www.facebook.com/MEActNet/posts/1801541573461574

We will eventually update and post everything here once we've gathered it all: http://www.meaction.net/press-coverage/

And there were pieces that Google News missed as well as our PR company's news monitoring service, so this has been SO helpful being able to find more pieces collated here. Thank you!
Just wanted to say thank you to Jen and all the rest of the team who have worked so hard on these events, great job. :)
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
If someone can upload them to YouTube that would really speed up the ability for me to get a transcript done. I would do it, or at least try, but I'm not at home this week so haven't got access to my half decent computer and unlimited fibre broadband.

That's very kind of you, Andy! I hope you're using oTranscribe? It cuts down transcription time enormously. You can do it via a YouTube link or an audio file.

Thank you for all your posts - it made it really easy to pick out the good stuff from a sea of coverage!
 
That's very kind of you, Andy! I hope you're using oTranscribe? It cuts down transcription time enormously. You can do it via a YouTube link or an audio file.

Thank you for all your posts - it made it really easy to pick out the good stuff from a sea of coverage!
To be fair I'm bored, I'm on holiday with my wife, mother and mother-in-law but I'm not well enough to go do anything with them. If the videos are on YouTube I can cheat and just download the subtitles that YouTube generates and then work on that. But thank you for your thanks, I may not have been able to get to a protest but my shoes were there and I was able to add to the effort a little bit by helping to update this thread.
 

aimossy

Senior Member
Messages
1,106
Great talks in San Francisco!

The NYC live protest video was posted:

"Thank you Jennifer Johnson Avril and Terri Wilder for posting video!
#MillionsMissingLive #MECFS New York City Protest! You can catch Dr. Mady Hornig speaking at about 25 Minutes in. We will work on transcribing Dr. Hornig and Dr. Levine's talks for people."

You can see the FB posted video here.

I am starting to feel a little excited because it seems to me personally that Ron Davis and Mady Hornig are sort of converging in their thoughts. There seems to be similarities.
 
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Yogi

Senior Member
Messages
1,132
I was wondering if I should put this up yesterday and who this was.

Well it is this very brave young lady who did this yesterday.


She is a journalist who has written for the Guardian and Times.
And a member of the forum.


I have mentioned this as she said she does not mind being identified. I hope it is OK.

Thank you @JanetME for your bravery and for making ME visible!:thumbsup::heart::thumbsup::heart::thumbsup::heart:

Hope the police did not give you any hassle?




https://mobile.twitter.com/JanetEastham/status/781117915915513856
https://mobile.twitter.com/JanetEastham/status/781118696039276544

https://mobile.twitter.com/JanetEastham/status/781119724818145284
https://twitter.com/JanetEastham/status/781120303934169088
 
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Effi

Senior Member
Messages
1,496
Location
Europe
Another Dutch newspaper article. An interview with the same patient who did the interview on national radio. http://www.rd.nl/vandaag/binnenland/schoenen-als-stille-getuigen-van-een-slopende-ziekte-1.1130544

OK-ish Google Translate version here.
Half of the tens of thousands of ME patients get no disability insurance says Van Leijen. Many municipalities deny their requests for domestic help, rollators, wheelchairs and handicapped parking."Because they do not want to confirm that someone is sick: it would only exist between the ears.People can sometimes only walk or stand for five or ten minutes, yet have no parking spot. "

ME is often confused with chronic fatigue syndrome. "Exercise intolerance is the main feature of ME. For example by brushing one's teeth one can already end up ill in bed. Patients who suffer the most, lie in a dark room in bed with headphones on, because every sound and contact with others is too much. "

With the shoes action in The Hague patients are asking to recognize ME as a disease and different directives from general practitioners. They want money for good research and an end to the often harmful psychological treatments.