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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. moosie

    David Tuller: Hey Bristol: where is my cease and desist letter?

    Excellent photo Anil. Amazing to see the behind-the-scenes picture too.
  2. moosie

    What is your favorite probiotic

    Strangely I seem to be getting good results from Total Greek yoghurt. Seemed to have good effect within a couple of days? Trying the thing where you hold it in your mouth for as long as possible, which I haven’t tried before, so maybe that is why? Read somewhere that your mouth bacteria and...
  3. moosie

    Prof Sir Simon Wessely talks about MUS today on BBC 4

    I think that was on 14th Feb . . . but my brain is mush . . . :)
  4. moosie

    Rituximab Trial - SMC Expert Opinion?

    I'm going to put that Stanley Unwin 'quote' on a sweatshirt.
  5. moosie

    Esther Crawley - 18th May 2017 - A day with the MUPP(ets) and more

    This is a bit off topic hope it's ok. I just went to look at this on the MEA Facebook page and noticed (maybe it's a blip on my computer?) that you can no longer post messages to the page. You can only send them a messages - I suppose privately. Yesterday you could - I was reading the messages...
  6. moosie

    Trial By Error, Continued: The CMRC Affirms Full Support for Libelous Crawley

    Christ.
  7. moosie

    Anyone tried Melatonin?

    Can you get it in the UK? My husband had some that he bought in America to help with jet lag but then found you couldn't get it here. This was a good few years ago now. I've never tired it but it really help him.
  8. moosie

    "Thirty Years of Disdain: How HHS Buried ME"

    Is this the shorter version you mean? "A shorter version (about half the size) of Mary Dimmock's magnum opus." on Health Rising https://www.healthrising.org/forums/resources/thirty-years-of-disdain-how-how-hhs-and-a-group-of-psychiatrists-buried-myalgic-encephalomyelitis.355/ Edit No I...
  9. moosie

    The Nottingham Tool Kit: how the UK is selling ME patients down the river with £200 million for MUS

    So sorry you were treated so badly. Unforgivable.
  10. moosie

    The Nottingham Tool Kit: how the UK is selling ME patients down the river with £200 million for MUS

    Good Luck!!! x
  11. moosie

    The Nottingham Tool Kit: how the UK is selling ME patients down the river with £200 million for MUS

    Thank you for posting this @Countrygirl . It's horrific. (I wonder if this thread should have something along the lines of '£200 million for pychological treatment for MUS'? I only knew to read as I had seen mention of Nottingham Tool Kit mentioned on twitter. Ignor if I don't know what I'm...
  12. moosie

    NIH awards 'supplemental grants' to Lipkin, Katz, Fletcher, other big names

    I know I have no brains but the dates on this seem a bit odd It's 02-11-2016 today isn't it? The heading above says 12-11-2016 and some of posts 13-11-2016. Or did I sleep through a whole 10 days? Edit - I'm a fool. What am I? It's November (11) not October (10) . . . or something. As you were.
  13. moosie

    Science Media Centre with Holgate/Crawley/McCrone - more anti-patient prejudice? (FITNET)

    I don't know if this is on here or not but the BBC have changed the title again 'Landmark' Edit - I think I should have linked this to ZeroGravitas post above. Can't work out how to do it now.
  14. moosie

    Guardian article: ME affects four times as many women as men. Is that why we’re still disbelieved?

    I can get them now. The number of comments went down from about 125 (can't remember exactly) to 94 - were they unavailable while they removed some bad ones?
  15. moosie

    Guardian article: ME affects four times as many women as men. Is that why we’re still disbelieved?

    I can't get comments either . . . odd.
  16. moosie

    Media coverage of Matthees PACE recovery reanalysis: post links here

    How does AfME continue to have members??? I just don't understand.
  17. moosie

    Tribunal orders QMUL to release anonymised PACE data 16 Aug 2016

    Tom Kindlon ‏@TomKindlon Data on original 3 primary outcome measures in £5m #PACEtrial has today been released http://www.wolfson.qmul.ac.uk/current-projects/pace-trial#news… #MEcfs #CFS #MyalgicE #PwME 11:01 am - 8 Sep 2016 11 retweets 11 likes Tom Kindlon ‏@TomKindlon Tom Kindlon...
  18. moosie

    Tribunal orders QMUL to release anonymised PACE data 16 Aug 2016

    QMUL have put up new info - http://www.wolfson.qmul.ac.uk/current-projects/pace-trial#news "Latest news: 8 September 2016: PACE trial team analyse main outcome measures according to the original protocol PACE bimodal CFQ analysis final (225KB PDF) PACE published protocol based analysis...
  19. moosie

    Peter Tatchell: stigmatisation of ME/CFS #PACEtrial campaigners similar to what he faced

    I personally wouldn't trust Panorama to cover a sofa - not the fair unbiased programme it used to be sadly.
  20. moosie

    Lancet's role in Macchiarini scandal

    This isn't directly connected to the Lancet but it has some background on Macchiarini. Not sure if this is the right place to post it - or if it's been posted elsewhere. He appears to be a complete con man. From Vanity Fair January 2016...
  21. moosie

    Tribunal orders QMUL to release anonymised PACE data 16 Aug 2016

    I feel terrible for saying that now. I'm sure they are a real person but i think they were joking and now maybe feel a bit embarrassed. Sorry communication really not my strong point - like blood from stone :) Edit Oh god - I can't even do symbols right! I meant :-(
  22. moosie

    Tribunal orders QMUL to release anonymised PACE data 16 Aug 2016

    Does anyone know who Meredith MacIver is? Maybe I'm being rude but I just noticed that they only joined twitter last month - I just wondered if someone was having a little fun with us. There is a famous Meredith MacIver who works for Donald Trump and I think took the blame for his wife's...
  23. moosie

    Tribunal orders QMUL to release anonymised PACE data 16 Aug 2016

    I think it said that QMUL had objected to something in the tribunal decision and that was why it had been taken down - sorry brain very slow
  24. moosie

    Tribunal orders QMUL to release anonymised PACE data 16 Aug 2016

    This tweet seems to have vanished . . . or is it just me? edited to say i think it was the one that said that QMUL had a problem and that was why it was withdrawn.
  25. moosie

    List of media stories on tribunal PACE data release ruling

    Voxpolitical - Mike Sivier This isn't really like something in the 'press' - it's a blog - but i thought it was interesting for the quote from twitter and the fact that is is a political blog rather than a health one. I don't know if he has links to ME. It quotes from one of the i articles and...
  26. moosie

    Feeling something that isn’t there? 4 vexing medical conditions

    "vague pain"? Why I oughta . . .
  27. moosie

    List of media stories on tribunal PACE data release ruling

    Does this count? No idea what this website (What Doctors Don't Tell You) is but looks like they used a press release from MEAction. https://www.wddty.com/news/2016/08/researchers-who-claimed-chronic-fatigue-is-all-in-the-mind-forced-to-disclose-data.html - › News › 2016 › August › Researchers...
  28. moosie

    Press Release available: "Tribunal Orders Release of Withheld Data from Controversial £5M CFS Study"

    What Solstice said.
  29. moosie

    The Centre for Welfare Reform: Major breakthrough on PACE trial (August 19) (well referenced)

    Good Lord. I hadn't really taken that in.
  30. moosie

    Catalogue of articles on ME by Prof Hooper and Margaret Williams

    The link works now. Much easier to read now - the layout of the articles is much better. What a huge body of work. It's going to take a while but I'm going to read my way through the whole collection. If I live that long :-)