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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. JoanDublin

    Dr Phil Hammond talks to Jen Brea about Unrest this morning on Radio Bristol

    I disagree and I think Jen would too. Jen has made herself into an international ambassador and advocate through her crowdfunding of the film within the community and through the Millions Missing Campaign. Of course it is her job to take people on in these situations. In any event I'm glad to...
  2. JoanDublin

    Dr Phil Hammond talks to Jen Brea about Unrest this morning on Radio Bristol

    Here is a patients comments about that interview. This gives those of you who dont understand how awful things are in the UK, some idea of the minefield of stepping into it without proper ammunition and knowledge.
  3. JoanDublin

    More from Science Medica Centre on SMILE

    Maybe I got on to a block list? Not sure. Cant be the low followers issue cos I have over 4000 on Twitter
  4. JoanDublin

    More from Science Medica Centre on SMILE

    I'm not sure I understand. On Twitter if you are 'blocked' then that means someone specifically went to your account and blocked you. The other general mechanism you can employ is to protect your account which means that only 'allowed followers' can see your tweets. However In this case I'm...
  5. JoanDublin

    More from Science Medica Centre on SMILE

    I've just checked on Twitter and Im also blocked by David Colquhoun. I never followed him, never tweeted him and have had no interaction at all that I ever remember. It seems like he is probably trawling hashtags and blocking lots of PWME. Idiot
  6. JoanDublin

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    This is what happens when you insist on staying in bed with the powerful enemy. They eventually destroy you because they have all the power and you are always left on the defensive. The correct response is to walk away because they will destroy you if you stay. Much like any abusive...
  7. JoanDublin

    Embargo broken: Bristol University Professor to discuss trial of quack cfs tx

    Woleheartedly agree with this. Its infuriating to see a charity stating that they 'believe' ME is a physical disease. Its not in their gift to 'believe' or 'disbelieve'. Its beholden on them to promote the scientific facts. Also its interesting that they added the words 'as it always has' to...
  8. JoanDublin

    Trial By Error: No Ethical Review of Crawley School Absence Study

  9. JoanDublin

    Trial By Error: No Ethical Review of Crawley School Absence Study

    I've posted this on your behalf under David's blog as I think you articulate so very well the sheer horror that children and parents face in these type of situations, when their very liberty and well-being is threatened to the point where they would agree to anything or contemplate suicide
  10. JoanDublin

    Trial By Error: No Ethical Review of Crawley School Absence Study

    If anyone is on Twitter could they please RT this? The more public pressure that's put on the BMJ the more likely they are to respond to David
  11. JoanDublin

    Trial By Error: No Ethical Review of Crawley School Absence Study

    If anyone is on twitter could you please RT this please? The more public this is, the more pressure the BMJ will feel the need to respond to David
  12. JoanDublin

    Wessely meets Stephen Hawking

    Just thought I'd throw this in here. I had a small amount of vomit in my mouth when I saw that the master of pseudo-science was introducing and fawning over the master of science. The irony overload was almost too much to bear so I felt the need to tweet.
  13. JoanDublin

    Trial By Error: No Ethical Review of Crawley School Absence Study

    Oh well, it was worth a shot.
  14. JoanDublin

    Trial By Error: No Ethical Review of Crawley School Absence Study

    My reply to the BMJ. Tweet thread
  15. JoanDublin

    Trial By Error: No Ethical Review of Crawley School Absence Study

    And another response from the BMJ just now suggesting I email them and they'd be happy to discuss it
  16. JoanDublin

    Trial By Error: No Ethical Review of Crawley School Absence Study

    I've just received this tweet from them. I will once again draw their attention to this thread and remind them that this is a public forum and they may like to consider the response they have already given so far to this issue. In fact they may like to consider responding directly here
  17. JoanDublin

    Trial By Error: No Ethical Review of Crawley School Absence Study

    I've sent the BMJ a reminder that they haven't responded to my tweet
  18. JoanDublin

    Why are doctors and patients still at war over M.E.? How the best treatment for the debilitating con

    I had a look through them and saw three comments from you. There is a set of tabs at the top of the comments and it was defaulted at Newest but there was an option to load all comments or something like that. Ironically I couldn't find my own comment though and when I went back to check the tabs...
  19. JoanDublin

    Trial By Error: No Ethical Review of Crawley School Absence Study

    Ive tweeted the BMJ with a copy of this link and asked for their comment. Also copied David Tuller and David Marks with a link to the tweet.
  20. JoanDublin

    New BPS 'breakthrough' paper : childhood sexual harassment predicts ME severity

    By that logic, they're gonna need a bigger boat..... http://www.independent.co.uk/news/world/americas/sexual-harrassment-us-young-women-90-percent-titled-the-talk-a7740456.html
  21. JoanDublin

    Scientists trade insults over ME (JHP special issue)

    All I know is that it's been a while since I guffawed out loud and the comments by Coyne made me nearly choke! We have not gotten far by politely engaging with these liars and charlatans. So I, for one, am not a bit perturbed by Coynes use of words. It's definitely got everyone's attention. The...
  22. JoanDublin

    PACE-gate ……. More wrongdoings? – PARTICIPANT NUMBERS seemingly just DON’T ADD UP

    @lilpink A very interesting thread. Your sleuthing definitely raised some interesting questions which I believe should be addressed. As I understand from your post it seems pretty clear already that with all numbers now in, with one notable exception, even adding the 'max' number of 135 to that...
  23. JoanDublin

    PACE trial commentaries in the Journal of Health Psychology to be made open access

    Thanks a million for that :)
  24. JoanDublin

    PACE trial commentaries in the Journal of Health Psychology to be made open access

    Hi Trish. Did they email you back yet? Would like to order a copy or two as well if they're not too expensive
  25. JoanDublin

    What are seminal studies in ME research?

    A patient called Paul Watton from the UK put this together. It's a great little resource
  26. JoanDublin

    Petition: That the ME Association leave the CMRC

    The MEA have been fully behind MEGA all the way. What makes you think they might want to hold it up?
  27. JoanDublin

    Petition: That the ME Association leave the CMRC

    It was started before the MEA one (Im almost sure anyway). I dont think they would get confused. Im sure people who would sign this would also sign the MEA one. After all, who amongst us thinks that the current NICE guidelines are fit for purpose? They're separate issues and both have merit
  28. JoanDublin

    Petition: That the ME Association leave the CMRC

    No matter how much that 'view' harms patients or puts the fear of God into parents under the eye of Fabricated Induced Illness of their children? Just asking if there are any red lines the MEA wouldnt cross?
  29. JoanDublin

    CDC ME/CFS page, updated 30th May 2017

    Oh that's great! I think it's very worthwhile doing a summary. Thanks a million for doing that
  30. JoanDublin

    Petition: That the ME Association leave the CMRC

    I've had a look around and I don't think this petition is posted anywhere else on PR. It was started a couple of days ago and is requesting that the ME Association leave the CMRC. Given the current news with regard to NICE deciding not to review its guidelines on MECFS, I think this petition...