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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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  1. Firestormm

    Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC) - Tymes Trust

    Excuse me. In the initial thread from whence you have taken my quote. I was replying to our member here 'Esther'. Not 'Esther Crawley' - so please do NOT twist the damned context. The collaborative were kicking around ideas about who to invite to the conference. The suggestion of Ian Lipkin...
  2. Firestormm

    CDC whistleblower on MMR fraud reveals his identity

    Statement issued (presumably) by Dr William Thompson: http://www.rescuepost.com/files/william-thompson-statement-27-august-2014-3.pdf Legal representatives website (same statement)...
  3. Firestormm

    CDC whistleblower on MMR fraud reveals his identity

    http://leftbrainrightbrain.co.uk/2014/08/27/the-brian-hooker-article-has-been-removed-from-the-public-domain-because-of-serious-concerns-about-the-validity-of-its-conclusions/ Never ceases to amaze me that there are members on this forum who claim to understand not only science but statistics...
  4. Firestormm

    STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013

    The 25% Group Facebook page says the Scientific Advisor is Dr Vance Spence. Is this correct? Only you realise that he is Chairman of ME Research UK who are a part of the CMRC (MRC Research Collaborative).
  5. Firestormm

    Daily Mail: 23-year-old takes her first steps in NINE years after being confined to bed with ME

    For those that haven't or wont read Jessica's Facebook page. Some background from her:
  6. Firestormm

    Daily Mail: 23-year-old takes her first steps in NINE years after being confined to bed with ME

    Just to let you know: And it was raised in under 12 hours. This was for Jess's wheelchair. You know the young girl who has the same diagnosis as you do.
  7. Firestormm

    Daily Mail: 23-year-old takes her first steps in NINE years after being confined to bed with ME

    As I have said - and Jess has also said as well (see above somewhere) - the NHS funded her stay and they had to fight for the funding. As for exact cost I would not know.
  8. Firestormm

    Project description of ME/CFS treatment with TNF-alpha inhibitor Etanercept (Enbrel®)

    So this project end at the end of this year and has been running for 2 years. Presumably by Fluge and Mellor? I guess so. Thanks. I can't recall knowing about it before. Nice to see they are trying something to see if it might be of help for those who don't respond to Ritux. Look forward to...
  9. Firestormm

    Daily Mail: 23-year-old takes her first steps in NINE years after being confined to bed with ME

    Here. Read her Facebook Page: The World of One Room I honestly do not know why some in this community have to be like they are being. This young lady was able a few months ago to sit up unaided for the first time and fix her hair. To brush her teeth (with help at the time - see photo), and now...
  10. Firestormm

    Daily Mail: 23-year-old takes her first steps in NINE years after being confined to bed with ME

    Oh I'd say walking about the house after NINE YEARS in bed was a 'functional improvement' wouldn't you?!
  11. Firestormm

    Daily Mail: 23-year-old takes her first steps in NINE years after being confined to bed with ME

    You should visit her Facebook page. Yes she is still very ill. But she can walk. There's a video on her page - a few posts down - where she walks through the house showing you her new bedroom and the rest of her home. They've added a kitchen area for her and toilet nearby. But as she says in a...
  12. Firestormm

    Daily Mail: 23-year-old takes her first steps in NINE years after being confined to bed with ME

    @MeSci We were I believe talking about raising awareness through media i.e. patient stories and their relative volume in UK press as opposed to elsewhere. Not necessarily stories you or I might like: but stories none-the-less.
  13. Firestormm

    julia newton newcastle

    You can get overnight sleep studies in hospital. Done it myself last year. Anyway thought this might be of interest here:
  14. Firestormm

    Daily Mail: 23-year-old takes her first steps in NINE years after being confined to bed with ME

    Actually I disagree. I just think we are more engaged. Trying to gain the attention of the c.1,000,000 Americans supposedly affected seems to me to have been impossible. And I do not understand why. But I don't want to take the story off on a tangent.
  15. Firestormm

    Daily Mail: 23-year-old takes her first steps in NINE years after being confined to bed with ME

    It was NHS care Min. Or at least paid for by the NHS. According to her close friend who posted on the MEA Facebook page earlier. Of course the situation needs to change to better allow others the same opportunity. But remember the article talks about physiotherapy and hydrotherapy: these...
  16. Firestormm

    Daily Mail: 23-year-old takes her first steps in NINE years after being confined to bed with ME

    BTW talking of Severe ME Day (8th August). Stay tuned for another possible spread on Monday. Hopefully.
  17. Firestormm

    Daily Mail: 23-year-old takes her first steps in NINE years after being confined to bed with ME

    Yes. The Americans don't seem quite so good with their stories do they? Not a criticism but in the UK over recent years I have seen more and more ME stories coming out and not all of them as negative as they used to be. I think this one about Jessica is especially good. And with it being Severe...
  18. Firestormm

    Daily Mail: 23-year-old takes her first steps in NINE years after being confined to bed with ME

    You can get tested on the NHS. But chances are that unless it is an active infection the 'ranges' will not pick it up. The NHS does Lyme testing and EBV - would be daft if it didn't. But if you are told your tests are negative and you believe you do have e.g. Lyme then I guess you would seek a...
  19. Firestormm

    Daily Mail: 23-year-old takes her first steps in NINE years after being confined to bed with ME

    I think it's a fair point and does seem to be the exception rather than the rule. I spent many months in bed when acutely ill - back and forth to hospital at times - but was never in the same situation as Jess. Never that bad. I could always manage to shuffle to the toilet on my own steam. And...
  20. Firestormm

    Daily Mail: 23-year-old takes her first steps in NINE years after being confined to bed with ME

    No. And I wasn't sure about 'deadly virus' either. Can't recall what she had picked up that started all of this but 'deadly virus'??? Could be I suppose but nothing I have seen made me take note and I think I would have done. I have been following Jess for quite some time. A remarkable young...
  21. Firestormm

    Daily Mail: 23-year-old takes her first steps in NINE years after being confined to bed with ME

    Daily Mail includes lots of photographs and a video made by Jessica. Same story appears online in Daily Express with added detail: Reproduced here by the ME Association...
  22. Firestormm

    My Rituximab experience with RA and ME

    This thread is about Nielk and her ME/RA/Ritux experience. Not really about anything to do with autoimmunity and the theories therein. Interesting though they may be. Could we not start a different thread for them?