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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. Wildcat

    Coyne: taking Wessely's manipulative ways out of the shadows..........

    . . As Coyne has also proved to have been an abuser of ME patients/carers/activists ..... its a bit rich that he has claimed to have taken on Wessely on 'our' behalf. As one of the individuals who was personally, aggressively, abused by Coyne earlier this year (extensive, aggressive, 'Fuck...
  2. Wildcat

    SEID - countries other than U.S adopting this classification?

    . About the IOM SEID Criteria: The prestigious '50 Experts Letter' to the HHS (September 013), urging the HHS to not waste $1 Million on creating a new Criteria for ME, but urging the HHS/IOM instead to adopt the Canadian Concensus Criteria (CCC) for ME diagnosis and research, ''as a matter...
  3. Wildcat

    SEID - countries other than U.S adopting this classification?

    . SEID is a weak name and a weak Criteria - a lost opportunity .
  4. Wildcat

    New MEGA study website (30 November 2016)

    . Excellent Post @Esther12 .... In Post 406 you have summed it up brilliantly. http://forums.phoenixrising.me/index.php?threads/new-mega-study-website-30-november-2016.48118/page-21#post-795916
  5. Wildcat

    Telephone-administered versus live group cognitive behavioral stress management for adults with CFS

    . This is no time for more self serving, career building, research funding wasting, psychosocial research rubbish. Where did the funding for this study come from?.. Was the funding from the NIH? .. If not, from where? And Klimas and Fletcher should have nothing to do with such research, at...
  6. Wildcat

    Telephone-administered versus live group cognitive behavioral stress management for adults with CFS

    . @MEisnotMUPS wrote 'So disappointed in Klimas and Fletcher ..... I truely do not understand this.' Agreed. Shows disregard for the harm that this kind of research has done to ME sufferers. We dont need stress management - we need the removal of the sources of stress. One major source of...
  7. Wildcat

    Coyne demolishes Per Fink's trial of CBT for medically unexplained symptoms

    . Well, how can we take the blog seriously ... as Coyne has brazenly misattributed certain quotes .... how can we trust the accuracy of anything else he has written on it .... as he clearly has not done his homework... .
  8. Wildcat

    Coyne demolishes Per Fink's trial of CBT for medically unexplained symptoms

    . . @Woolie wrote : 'I ... would rather see us discuss these than go off on a rant about James Coyne and his various transgressions. That doesn't serve any of our interests. And it doesn't make us look good as a community.' Err? What? ' A rant' ? 'Doesn't make us look good as a...
  9. Wildcat

    Perceived stress, illness invalidation, and symptom severity in ME/CFS

    . . 'Illness invalidation from medical professionals' . ... Not just illness invalidation, but broken bone injury invalidation ...... I can hardly bear to speak about being refused examination and treatment of a broken and displaced rib in a UK hospital A&E (2003) ..... because the nurse was...
  10. Wildcat

    Cort Johnson blogpost - "Recovery Potentially Possible: Naviaux Talks on Chronic Fatigue Syndrome"

    . Stop talking about 'Chronic Fatigue Syndrome' because it aligns us with people who are tired or burned out/stressed out. . Some of us do not have enough years left to live to live in 'hope' Get rid of the bloody psycholgising ... at this stage that alone will save us from further medical...
  11. Wildcat

    New MEGA study website (30 November 2016)

    . Don't underestimate yourself @trishrhymes :) ... there is a difference between being erudite and 'qualified' ... . and the most important quality of being totally sussed about the politics we are faced with year after year! Though clearly there can be overlap! .
  12. Wildcat

    New MEGA study website (30 November 2016)

    . . @charles shepherd wrote: 'And thank you to everyone on the PR forum who has applied to join the PAG' How do you know that anyone on the PR Forum has applied to be on the PAG, if the applications are anonymous, and assessed as anonymous? To my knowlege only one PR member, @trishrhymes ...
  13. Wildcat

    New MEGA study website (30 November 2016)

    . The patients who were on the NICE Guidelines Group and the CMO's Working Group were simply referred to as 'patient reps' ..... we know that they were not elected, and goodness knows how they got to be in the position of supposedly representing us .... For example, two of the 'Patient...
  14. Wildcat

    New MEGA study website (30 November 2016)

    . The Patient Representatives to the NICE Guidelines (published 2007) were named. The Patient Representatives to the Chief Medical Officer's Working Group on ME ( CMO WG 1998-2002) were named. It’s just not conceivable that ME patients should be represented by anonymous/unaccountable Patient...
  15. Wildcat

    New MEGA study website (30 November 2016)

    . @MEMum wrote: .'The amount of criticism, verging on abuse, that Dr Shepherd gets on this thread, could be a huge deterrent to any PAG member liaising with this patient forum.' Provide examples of what you class as 'abuse' on this thread. Actual examples. And the names of the...
  16. Wildcat

    Coyne demolishes Per Fink's trial of CBT for medically unexplained symptoms

    . @Dx Revision Watch wrote: 'll stand corrected, but I can't recall Coyne expressing opinion on the DSM-5 proposals for SSD, either during the three review and comment periods, in 2010, 2011 and 2012, or since.' Coyne has definitely supported and vociferously promoted both Brian Walitt's and...
  17. Wildcat

    New MEGA study website (30 November 2016)

    . @charles shepherd wrote about investigative journalist Duncan Campbell: 'This is from his website and contains links to some of the health fraud stories that we have worked on together: http://www.duncancampbell.org/content/new-statesman-1989 ' ~~~~~~~~~~~~ So, can Duncan Campbell write...
  18. Wildcat

    New MEGA study website (30 November 2016)

    . @charles shepherd wrote: 'Rightly or wrongly, and this again is being debated, the MEGA study is going to be looking at a much smaller but still very heterogenous group of patients who meet one of the 20+ clinical or research definitions of ME, CFS or ME/CFS - Canadian, Fukuda, IoM...
  19. Wildcat

    New MEGA study website (30 November 2016)

    . . @lilpink said: ↑ "Well we know the CMRC had / has two sets of minutes ..one for 'them' and one for the rest of us." . The CMRC 'Two sets of Minutes' From the CMRC emails obtained by FOI by Jane Colby of the Tymes Trust ME Children's Charity: 'A Report from Tymes Trust - the inside...
  20. Wildcat

    Petition: Opposing MEGA

    @Countrygirl ... do you want to post your last post (IME) onto this (Mega) thread too? http://forums.phoenixrising.me/index.php?threads/new-mega-study-website-30-november-2016.48118/page-11 .
  21. Wildcat

    New MEGA study website (30 November 2016)

    . What Snowdrop said: "It would be great if something like this got a lot of signatures like "for me it's been a decade of severe disability" etc." A thread here where people state how long they have been sick - The Lost Years...
  22. Wildcat

    The Lost Years

    . 21 Years and 1 month. No remission. .
  23. Wildcat

    New MEGA study website (30 November 2016)

    . . The Material from @Countrygirl 's last post is from the Science Media Centre's 2012 publication 'Views from the Frontline' ..... http://www.sciencemediacentre.org/wp-content/uploads/2012/10/SMC-Views-from-the-front-line-essays-on-the-SMC.pdf Esther Crawley, as quoted by the Science Media...
  24. Wildcat

    New MEGA study website (30 November 2016)

    . 'The reason that the timescale is so short is because the mainstream funder to whom we want to apply for MEGA funding has an application deadline in early January 2017. This deadline was only recently announced and was different to the timings we expected.' Who is the mainstream funder...
  25. Wildcat

    New MEGA study website (30 November 2016)

    . "What was the rationale of the others involved in this decision for not accepting that 6 days is too short?" The rationale is probably that they live in the real world, and preposterous 6 day deadlines for complicated applications, which sick/disabled people are unlikely to be able to meet...
  26. Wildcat

    New MEGA study website (30 November 2016)

    . The MEGA Board once again demonstrates its disturbing lack of understanding of the disabilities imposed by ME. They have created unreasonable obstacles to sick ME sufferers, most being unable to make an application in such a short time. The 6 day deadline to apply to be on the Advisory Board...
  27. Wildcat

    Walitt and Shorter - again!

    Quite a snake in the NIH grass! .
  28. Wildcat

    New MEGA study website (30 November 2016)

    . How can the MEGA Board justify such a short (6 day) Deadline for applications to be on the Advisory Board? They have created unreasonable obstacles to (Disabled) sick ME sufferers being able to make an application in such a short time. . .
  29. Wildcat

    Petition: Opposing MEGA

    "Note: that is just 6 days away." The MEGA Board once again demonstrates its disturbing lack of understanding of the disabilities imposed by ME. They have created unreasonable obstacles to sick ME sufferers being able to make an application in such a short time. The 6 day deadline to...
  30. Wildcat

    MEGA research for M.E./CFS: White & Crawley listed as involved

    . Many of us, even being Facebook members, cannot post on AFME Facebook site due to having been banned. AFME have a history of banning ME sufferers and carers from its Facebook page that goes back many years. Its a disgraceful practice. AFME banned FB members for informing others about...