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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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Search results

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    M.E., NEW INTERNATIONAL CRITERIA AND THE END OF 'FATIGUE' AND 'OPATHY' TERMINOLOGY?

    In the light of recent clarifications and expert findings I believe that use of the terms 'Chronic Fatigue Syndrome/CFS', 'Fatigue Syndrome/FS', 'Fatigue', 'CFS/ME', Myalgic Encephalopathy and the like in reference to Myalgic...
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    Collective International Professional Response to PACE Required?

    Dear All, I write in response to the just-published results of the UK MRC/DWP-backed PACE Trial on 'CFS/ME' in The Lancet[1]. Which, amidst controversy and formal complaints to UK Government Ministers and the Medical Research Council claims that: "CBT and GET can safely...
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    Zombie Science and the Non-Random UK 'CFS/ME' PACE Trial...

    Dear All, In spite of being furnished with a great deal of biomedical evidence from registered stakeholders[1] that contraindicates their 'CFS/ME' Clinical Guideline 53 (CG53), in their recent (and overdue) scheduled Guideline review, The UK National Institute for Health and Clinical...
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    Hundreds of herbal products to be banned in European Union.

    Dear All, The following comment is posted on behalf of Gurli Bagnall in New Zealand. Do also see The Independent Newspaper article that follows and google 'Codex Alimentarius' legislation which is of major concern, is underpinning problems mentioned below and undoubtedly will lead to...
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    Factual Inaccuracy, Dr Shepherd and the UK MEOpathy Association.

    Factual Inaccuracy, Dr Shepherd and the UK MEOpathy Association. Dear all, On 22 December 2010 I posted an item on CoCure entitled "Response Re Pinching at the MEopathy Association - XMRV has no role in ME/CFS..." The text was also posted on various other websites. The CoCure post detail...
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    NICE Timing, Coincidence and 'CFS/ME'.

    NICE Timing, Coincidence and 'CFS/ME'. Dear All, I am a registered patient/activist stakeholder for the NICE 'CFS/ME' Clinical Guideline 53 (CG53) that was published in the UK in August 2007. The scheduled 3-yearly review was somewhat delayed by NICE. I have today however, 24 December...
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    Pinching at the MEopathy Association - XMRV has no role in ME/CFS...

    Dear All, Dr Charles Shepherd of the UK Myalgic EncephalOPATHY Association has taken exception to my below posting of 22 December 2010 entitled "Pinching at the MEopathy Association - XMRV has no role in ME/CFS..." He responds with the following explanation/excuse on the internet today for the...
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    Pinching at the MEopathy Association - XMRV has no role in ME/CFS...

    Dear All, Dr Charles Shepherd is posting on the internet (LocalME UK at Yahoo Groups 22 December 2010) notice of the fact that Professor Pinching just happened to provide an "XMRV Update..." article (see below) for the Myalgic EncephalOPATHY Association on the day that five decidedly dodgy...
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    Me patients - susceptible weaklings?

    ME PATIENTS - SUSCEPTIBLE WEAKLINGS? The ME community has, sadly, become accustomed to the claims of certain psychiatrists alleging that CFS (the one-size-fits-all label they prefer) is a "functional somatic syndrome" with the attendant implication that patients are somehow psychologically weak...
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    Nice cg53 review - stakeholder comments.

    NICE CG53 REVIEW - STAKEHOLDER COMMENTS. NICE is undertaking its scheduled 3-yearly review of its 'CFS/ME' Clinical Guideline 53 during a very short-lived consultation period of 1st to 14th November 2010. The executive view NICE has already declared for its review however is that it sees no...
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    Uk 'cfs/me' pace trial complaint update.

    UK 'CFS/ME' PACE TRIAL COMPLAINT UPDATE. Professor Malcolm Hooper has received a letter dated 8 November 2010 from the Minister with responsibility for the MRC, The Rt Hon David Willetts MP. David Willets states that the MRC is "thoroughly" investigating the complaint that was set out in...
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    Inadequate nice 'cfs/me' evidence base laid bare...

    INADEQUATE NICE 'CFS/ME' EVIDENCE BASE LAID BARE... [PLEASE REPOST WIDELY] A SIMPLE COMPARISON BETWEEN THE UK NATIONAL INSTITUTE FOR HEALTH AND CLINICAL EXCELLENCE (NICE) TREATMENT OF ME/CFS PATIENTS AND MULTIPLE SCLEROSIS PATIENTS CLINICAL GUIDELINE DEVELOPMENT REVEALS ALL. See below and the...
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    Please help establish uk me/cfs blood-donor ban truth.

    PLEASE HELP ESTABLISH UK ME/CFS BLOOD-DONOR BAN TRUTH. Dear All, PLEASE will you write some letters and let me know the response you get by emailing me at the address below and posting official responses on suitable internet fora? Canada, Australia and New Zealand have all announced bans on...
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    OFFICIAL UK 'CFS/ME' PACE TRIAL Manuals are NOW ONLINE.

    OFFICIAL UK 'CFS/ME' PACE TRIAL Manuals are NOW ONLINE. http://tinyurl.com/3xj3uke http://tinyurl.com/37h35ca "Evidence from research trials has indicated that patients who are in receipt of benefits or permanent health insurance do less well than those who are not in receipt of them"...
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    Dr Myhill and the end of UK Clinical Freedom?

    To whom it may concern, The news [see BBC web-link below] on October 15th 2010 that Dr Sarah Myhill is to be suspended from medical practice for a year is utterly disgraceful and simply beggars belief. Dr Myhill properly submitted her mitochondrial ME/CFS work to peer-review and is an...
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    Some Open Questions to Dr Shepherd & the UK ME Association.

    I'm sorry but what the disease is called is not only vital it is the primary device by which those who seek to trivialise and distort the nature of the illness have done so much harm to patient welfare. When doctors who are supposed to advocate for patients (who have paid money to their...
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    Some Open Questions to Dr Shepherd & the UK ME Association.

    I'm sorry but what the disease is called is not only vital it is the primary device by which those who seek to trivialise and distort the nature of the illness have done so much harm to patient welfare. When doctors who are supposed to advocate for patients (who have paid money to their...
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    Some Open Questions to Dr Shepherd & the UK ME Association.

    Dr Charles Shepherd, the UK MEA and the OPATHY Questions. Dear Mark/All, Thank you for your response, it is appreciated. Mark states: "I personally have no particular prejudice or firm opinion regarding the ME Association, nor of Dr. Shepherd himself. I must say that I do personally find his...
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    Some Open Questions to Dr Shepherd & the UK ME Association.

    Dr Charles Shepherd, Medical Advisor to The Myalgic Encephalopathy Association (UK) has asked me to post his below comments on the Phoenix Rising Bulletin Board, which in this instance, I am happy to comply and they are presented herewith my personal response to him of 4 Oct 2010. I hope that...
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    Some Open Questions to Dr Shepherd & the UK ME Association.

    Picture of health wrote: "As a patient, I have long been convinced that post mortem studies could provide the only way forward out of our conundrum. Therefore I am v much looking forward to reading the post mortem findings in this UK MEA study and paper and hearing the summary at the...
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    Some Open Questions to Dr Shepherd & the UK ME Association.

    Sorry, "section 11" of the CORPORATE COLLUSION document in my last post should have read page 11. I'm refering to the section entitled: "The Wessely School psychiatric lobby and ME/CFS patients charities" p { margin-bottom: 0.21cm; } Firstly, take a look at page 11 of the CORPORATE...
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    Some Open Questions to Dr Shepherd & the UK ME Association.

    Dear All, I can confirm, that I did email my open questions to The Myalgic Encphalopathy Association / Dr Charles Shepherd diirectly as well as publicly. I have pasted the private response from Dr Shepherd below as he has made it public. I find his response unsatisfactory and will be returning...
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    Some Open Questions to Dr Shepherd & the UK ME Association.

    Some Open Questions to Dr Charles Shepherd and the UK Myalgic EncephalOPATHY Association: Re Dr Shepherd's internet post of 28 September 2010: "The new MEA website was launched today: http://www.meassociation.org.uk" I note that the MEA website headline welcome comments state: "Welcome to...
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    Uk gmc & dr myhill -- grounds for complaint?

    Dear All, For your information, my recent letter to the UK General Medical Council regarding their handling of the Dr Sarah Myhill case can be viewed online (with personal contact details removed) at: www.angliameaction.org.uk/docs/myhill-gmc-september-2010.pdf Best wishes, Anglia ME...
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    Myalgic encephalomyelitis (me), retroviruses, gambling & medical taxonomy.

    Thanks for your encouraging and insightful comments Mark. Re: "It would be a real kicker if 'classic' ME turned out to be just one of a number of conditions enabled by gammaretroviruses, because that would mean these results were a much smaller step forward than we hoped, and might be of no...
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    Myalgic encephalomyelitis (me), retroviruses, gambling & medical taxonomy.

    MYALGIC ENCEPHALOMYELITIS (ME), RETROVIRUSES, GAMBLING & MEDICAL TAXONOMY. If I wasn't living in grinding poverty due to having ME and having been forced into years of self-defending campaigning, I would give lots of money to new retroviral research - it is so important - save perhaps for a few...