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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. Peter Trewhitt

    How was your Onset? Acute infection or Gradually?

    My initial onset was with glandular fever some twenty five years ago, there was no clear distinction between the acute episode of glandular fever and the ongoing ME. However with gradual improvement I thought I had made a complete recovery after some five years. But I then got the Millenium...
  2. Peter Trewhitt

    Time for Unrest: Why patients with ME are demanding justice article

    A surprisingly good article for a British national newspaper. Are the PACE appologists and the Science Media Centre losing their strangle hold on the British media? I do wonder what the likes of Wessely and Crawley think if they bother to read it. They are practiced at ignoring patients and...
  3. Peter Trewhitt

    links to all articles by David Tuller related to ME/CFS that have been published at virology blog.

    The length of the list highlights the failure of the PACE appologists, the Lancet, SMC, Esther Crawley and Bristol University to address reasonably argued and presented criticism of their methodology and of their interpretation of their results, but also their subsequent attempts at obfuscation...
  4. Peter Trewhitt

    Prognosis of ME/CFS – by David S. Bell, MD

    It is the distinction between being ill or unwell and being disabled? When does a long term condition stop being an episode of ill health and become normality? This can have an impact on how we respond to our condition, if we view it as an illness we are looking for a cure which can both be...
  5. Peter Trewhitt

    Voices:Bristol Uni. both denies and supports Prof Crawley in her career enhancing “heroic vict

    I agree, in a court setting, as the PACE researchers found out, Crawley would lose control of her narrative and actually have to present concrete evidence. Given she has now invested so much into being a victim it would cost her any credibility. If she seriously believed what she said and had...
  6. Peter Trewhitt

    Voices:Bristol Uni. both denies and supports Prof Crawley in her career enhancing “heroic vict

    Presumably Prof Crawley is not motivated by scientific accuracy, as she has not responded to a single point David has raised, rather she only wants to block any criticism of her work. Further the 'cease and desist' letter for her is a device to feed into her 'brave scientist fighting anti...
  7. Peter Trewhitt

    Voices:Bristol Uni. both denies and supports Prof Crawley in her career enhancing “heroic vict

    The legal department of the University of Bristol are continuing this internally contradictory support of Prof Crawley's lies and apparent libel in public talks. Prof Crawley has now several times claimed that Bristol University sent a 'cease and desist' letter to Berkley University in relation...
  8. Peter Trewhitt

    Esther Crawley - talk 17th Nov Mood disorders Centre, Exeter Uni

    Crawley seems to confine her theories about the nature of ME to the popular press rather than scientific forums and I have been trying to remember where the most information is available. I have found the following but think there was in the last year or so a newspaper article with more detail...
  9. Peter Trewhitt

    David Tuller: My brief encounter with Prof Crawley

    Would the mother consider making a formal complaint about her GP? In my experience working within the NHS, though I had to retire some 17 years ago, making complaints does make a very real difference. However she would need an organisation or informed individual to support that complaint to...
  10. Peter Trewhitt

    Esther Crawley - talk 17th Nov Mood disorders Centre, Exeter Uni

    I agree that her published research, that I have read, focuses on clinical practice rather than any theoretical underpinning, however she has discussed this in interviews with the press. I read her clearly stating that 'CFS' is a biomedical condition that her approaches cured earlier this year...
  11. Peter Trewhitt

    Esther Crawley - talk 17th Nov Mood disorders Centre, Exeter Uni

    My understanding is that Crawley rejects the 'false beliefs and deconditioning model' in favour of acknowledging an unspecified biomedical basis for 'CFS', however she strangely advocates therapeutic interventions, namely CBT and GET, based on this unevaluated psychosocial theory. She argues...
  12. Peter Trewhitt

    List of vexatious FOIs for Ms Crawley, according to Bristol Uni......0

    That is an interesting idea, submitting a freedom of information request asking for 'the specific vexatious freedom of requests (suitably anonymised)' in relation to ME research submitted to Bristol University. Obviously the request would include Prof Crawley's recent public statements as...
  13. Peter Trewhitt

    List of vexatious FOIs for Ms Crawley, according to Bristol Uni......0

    Do we know what these were? Presumably the four in 2010 related to the SMILE trial, which, given it was looking at the Lightening Process, a form of NLP, a profoundly controversial approach, as a treatment for ME/CFS in children, is hardly surprising. As argued in the forums here, an insistence...
  14. Peter Trewhitt

    Crawley lied: No harassment reports (Bristol University)

    If Prof Crawley felt genuinely threatened, she would have been advised by her employers and the police to retain relevant letters and emails, which she should be able to present in support of her accusations. If she is being subjected to such a concerted persecution in relation to her paid work...
  15. Peter Trewhitt

    PACE 10 year follow-up: feasibility study

    Will they be informing the participants of any conflict of interests?
  16. Peter Trewhitt

    Scientists trade insults over ME (JHP special issue)

    Have been pondering the deconditioning theory in relation to my own ME, though perhaps, given it is so obviously false, this is rather a waste of time. My ME, of some 25 years standing, has followed a relapsing and remitting course, varying from one period some 19 years ago when I thought I was...
  17. Peter Trewhitt

    New MEGA study website (30 November 2016)

    Prof Holgate does repeat the assertion that MEGA is totally unconnected with the PACE trial: "3.2 Christine Harrison asked for clarification of the PAG. Prof Holgate said the Advisory Group was a hugely important one. They needed to take account of the very strong feelings held by some patients...
  18. Peter Trewhitt

    New MEGA study website (30 November 2016)

    Given the PAG will need to establish how they will organise themselves, including the issue of whether their names are publicly released as discussed above, it will be difficult to see how they can be particularly proactive at this stage. Obviously things will depend on the individuals involved...
  19. Peter Trewhitt

    New MEGA study website (30 November 2016)

    As already discussed above, the MEGA website does not allow public comments, rather people must send messages, and they aim to update their question and answer section in response every two weeks or so. Again as discussed above, this question and answer section has recently been updated. I had...