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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. K

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

    They dont need PEM in the FITNET study protool - run by this group so why would they need PEM to be diagnosed in clinic but not in a trial - Phil Hammond needs to explain that ?
  2. K

    Esther Crawley TEDxBristol Disrupting Your View Of ME

    Prof Crawley told the audience yesterday 1. little about what causes ME/CFS 2. little about what happens to the physiology of sufferers 3. little about how it impacts lives 4. little about the range of research currently underway it was a plea to emotion - based on a narrative that she was the...
  3. K

    25 Oct E Crawley speaking at Better Science Better Data event......

    looks like it will be live streamed - cant see why not - the whole conference is about open data questions can be asked dierct to presenter by going to Slido.com and putting in code 'Scidata17'
  4. K

    25 Oct E Crawley speaking at Better Science Better Data event......

    I am curious to see if Dr Crawley streams the talk - about Open Science and open data - the MEGA irony isnt lost on me 14.30 – Keynote #3: How open should open data be? Esther Crawley, University of Bristol 15.15 – Coffee break 15.40 – Keynote #4: Supporting Open Research: the role of an...
  5. K

    Simon Wessely to undertake Mental Health Injustice announced at Tory Conference

    ..things like this make you know the UK is in trouble! How do we save the country from cronyism and ignorance?
  6. K

    Controversy over exercise therapy for chronic fatigue syndrome: continuing the debate

    I have written to Mitchell two times - one might think he would respond given he quotes me in his first paper, yet he hasnt, unfortunately, I dont believe he wants to dialogue on this illness - it seems he just wants to write a viewpoint then close the shop window. Typical of psychiatry I think...
  7. K

    28th Sept: The cost of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) to the UK economy

    I think Alex is a decent guy from the outside point of view - but he is a business man, lets be clear, he went straight from Uni down to London, hired a room in Harley Street (man of the people) and started selling himself basically, because he had no professional or clinical quals to work from...
  8. K

    28th Sept: The cost of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) to the UK economy

    So looked at this a little more - basically Alex Howard now wants the NHS to send him patients - he wants to run a trial to show that his clinic can do just as good or better than NHS CBT-GET. " Alex, I always thought you'd go this way" - accessing the NHS is very lucrative, - funny thing is I...
  9. K

    28th Sept: The cost of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) to the UK economy

    I have investigated this clinic before - its run by a chap who completed his BSc in Psychology Alex, then set up the Clinic and he said he had ME/CFS, for few years, age 16-21 by all accounts, he cured himself by diet and lifestyle changes and NLP - which I believe he learned from Phil Parker of...
  10. K

    Practical management of chronic fatigue syndrome or myalgic encephalomyelitis in childhood

    There is no screening within this management paper for secondary conditions, ie conditions that could cause childhood fatigue, such as mental health problems, drug abuse, alcohol addiction and eating disorders -- this a major concern --- there is a clear bias in this paper to self-reference and...
  11. K

    James Coyne: Should authors declare a conflict of interest...

    Oxford Professor of Primary Care and working GP - Trish Greenlagh had a fall and needed a hip replacement surgery. She reviewed the evidence and argued with her own doctors about the best treatment. She then made her experience a key part of many of her talks on 'Evidence-based Medicine' and she...
  12. K

    James Coyne: Should authors declare a conflict of interest...

    I wish everyone - mostly the PACE authors - remember that I wrote an Editorial first, as Wesssely has done many a time. An Editorial is a commentary of opinion supported by some facts, not a scientific paper presenting data. Editorials are short, invited opinion pieces that discuss an issue of...
  13. K

    James Coyne: Should authors declare a conflict of interest...

    This was not the only complaint - Peter White made a complaint to my University the year prior after I attemtped to seek access to the PACE Trial dataset. So two official or unofficial complaints thus far directly to my University - something I consider a form a bullying and harassment, which is...
  14. K

    James Coyne: Should authors declare a conflict of interest...

    hello all, yes the PACE authors displeased with my PACE GATE editorial did the following 1. phoned my University and made direct complaints to my dept head 2. put pressure on the editor of the Jr of Health Psych to retract (how funny) part of my editorial 3. pressure the editor to get me to...
  15. K

    GETSET (white) in Lancet 22/06/17

    I'll add to that: a study that shows that a group of self-selecting patients with fatigue for 4 months and 1 other symptom - 20% had useful benefit - 80% did not recovery not measured - a good number of pts were at recovery on physical health SF-36 at trial entry - outcomes switched mid trial...
  16. K

    GETSET (white) in Lancet 22/06/17

    The original protocol had only one primary outcome measure, the SF-36 PF. However, when some eligible participants were found to have high SF-36 PF scores at randomisation (because of their illness affecting cognitive or social functions but not physical function), we decided to also include...
  17. K

    Hazel O'Dowd (PACE author) webinar for GPs sponsored by AfME

    I posted this on AfME facebook -- see how long it lasts Dr Hazel ODowd signed a letter in response to my PACE-GATE article which detailed the major flaws of the PACE Trial. In this letter all 19 authors, including Dr ODowd stated they would "correct me". However, they did little to correct me...
  18. K

    Hazel O'Dowd (PACE author) webinar for GPs sponsored by AfME

    From Dr Hazel ODowd's previous study - setting out the role of CBT - which is to change beliefs Condition 1 – description of the CBT intervention The CBT used in this trial was designed to do two things: first to attempt to modify thoughts and beliefs about symptoms and illness, and second to...
  19. K

    Hazel O'Dowd (PACE author) webinar for GPs sponsored by AfME

    The NHS NIHR spent £250,000 on this study and didnt even get a proper publication out of it. I applied for a small charity grant under £25k and I porposed a minimum of 2 publications, maybe even 3. ODowd said she would recruit 100 patients, she recruited 44, I could go to my local ME support...
  20. K

    Hazel O'Dowd (PACE author) webinar for GPs sponsored by AfME

    they spent 250k and didnt even randomise the same number of patients to each arm of the RCT - there is no major publication, and the docs Ive seen are basic, researchers are struggling to get any funds, from £10k to £50k is a massive struggle and this £250k is a massive amount and Dr ODowd is...
  21. K

    Hazel O'Dowd (PACE author) webinar for GPs sponsored by AfME

    With regards to the publication plan, the research team has thus far presented the findings at two conferences (below) and are now preparing the manuscript for publication of the results in a scientific journal. The plan is to submit the manuscript in September and it is hoped therefore that...
  22. K

    Hazel O'Dowd (PACE author) webinar for GPs sponsored by AfME

    I was struggling to find the output publication for her £250,000 funded NIHR study - funded in 2011 then I found this - she planned to recuit 100 patients but only managed 44 --- so much for the 250k and didnt really publish anything as far as I can see from betweeen 2011 and 2017 of...
  23. K

    Hazel O'Dowd (PACE author) webinar for GPs sponsored by AfME

    CBT all the way - DoH funded since 2004 £250k given to her to fund study in 2011 GP education v CBT-GET v usual care from UK HIHR https://www.nbt.nhs.uk/news-media/latest-news/frenchay-lead-%C2%A3250000-study-effects-early-intervention-me Also author and key figure of the PACE trial - our...
  24. K

    Crawley: How to deal with anti-science BRS2017

    there is a complete indoctrination of the patient (child and parent) from day 1 ie just reading the information leaflet, that I am sure continues through treatment and beyond - one can only wonder the impact on any research outputs
  25. K

    In memory of Merryn

    i cant bare to see and read of the passing of such a young beautiful person - i really get so angry with how the NHS and my medical colleagues, doctors and researchers view this illness I'll do everything I can to change things, even if its just a small change my prayers to the family
  26. K

    Breaking News: PLOS One issues Expression of Concern for PACE trial paper

    ...there is a clear need for independence to be a factor in consideration of who sits on these steering committees and ethics boards - loading them with colleagues or friends just goes against the rationale for having them in the first instance. he also switched between median wage cost and...
  27. K

    Breaking News: PLOS One issues Expression of Concern for PACE trial paper

    ..could I ask we refrane from personal attacks - on anyone's religion or other - lets stick to the facts of the trial and the facts of how the trial authors (mainly White, Sharpe and Chalder) behaved around defending their actions in trial management and not disclosing data. I think personal...
  28. K

    Breaking News: PLOS One issues Expression of Concern for PACE trial paper

    ....their surprise is surprising - dont they recall the Information Tribunal Court case, the £220k spent on laywers to defend their position, losing, and the ruling of the FOI Tribunal. Amnesia or total defiance in the face of the obvious. Do note Prof McCrone who did the economic analysis used...
  29. K

    Crawley: How to deal with anti-science BRS2017

    the first day of medical school Dr Crawley and Dr Nephrofan (Shrin.) would have been told to "listen to your patient and believe them" - once you stop listening or stop believing theres a problem; the psych lobby have had to devise a narrative to explain away the many many patients who reject...