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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. eafw

    Are you on the MEGA PAG?

    Sorry to hear about this but not at all suprised. Crawley/Holgate/MEGA/AfME were never going to genuinely engage with those who know what they're talking about Davey-Smith will have been well briefed by Crawley, despite his public protestations that he "knows nothing". For both of them this is...
  2. eafw

    Recording of Esther Crawley inaugural lecture on February 24

    For people like Prof Crawley the quality of work is virtually irrelevant - it's all about empire building. It was clear from her talk, no real science in there and no solid foundation to her claims. Wessely and the rest of the BPS gang are the same, we see it over and over.
  3. eafw

    Spin Media Centre FITNET Bingo - proceeds to IiME (mostly)

    OK, bit delayed but donations have now been made. Lost track somewhat so rounded up, at least proper ME research can benefit. Thanks Jo, will get back to you on this shortly - just flying in and out for now.
  4. eafw

    New MEGA study website (30 November 2016)

    I am not at all suprised that you have had top quality applicants. Many on these boards alone (as well as the wider ME community) have backgrounds and experience that meet the criteria for selection to the group - which would make them perfectly capable of engaging productively with academics...
  5. eafw

    BMJ Blogs: Ethical Failures in the treatment of CFS

    Yes, I'm glad that this stuff is getting published, it is a huge part of the battle we have (especially here in the UK). The attitude of the medical profession towards us is extremely harmful, it has caused real and continuing damage to many - so the systemic "hearts and minds" approach...
  6. eafw

    Are we missing many people by diagnosis of exclusion?

    Which guidelines and diseases (and what country) are you thinking of ? Even here in the UK someone with other conditions will be diagnosed with "CFS" or even ME-proper despite the presence of other conditions. Perhaps if they are suffering something else that is severe - but treatable - then...
  7. eafw

    Trial by Error: The Dutch Studies +

    He is a good writer, and that article is a real zinger. "That this so-called science manages to get through peer review is astonishing." It is indeed.
  8. eafw

    Petition: Opposing MEGA

    You would, yes, as it's fairly clear that you think that respect is something that can be demanded of others. I fundamentally disagree with that, and chose not to address the point in my first reply as it didn't seem as if it would be fruitful to go on that particular tangent.
  9. eafw

    Petition: Opposing MEGA

    Really don't know where to start with all that so I'll limit myself to one point: I think it is highly unlikely that they "disagree on how science is done". They may well, in practice, conduct their research according to a varying set of criteria - some of which may align more or less with "the...
  10. eafw

    Petition: Opposing MEGA

    I think that it is important that we talk to the scientists, but baiting them on twitter like this ? Don't think that is going to be very productive at all.
  11. eafw

    Petition: Opposing MEGA

    I get the distinct impression that GDS is only interested in bums on seats - the more the merrier - and something better organised around ME-proper is less likely to deliver people in large enough numbers. Would also be pretty sure that, despite his pathetic protestations that he "knows nothing...
  12. eafw

    New MEGA study website (30 November 2016)

    However long people are given to apply, they will still be vetted and cherry-picked to be suitably compliant. Expect their facebook, twitter and other internet history to be trawled for any sign of sedition.
  13. eafw

    Cleanliness in between showering

    For most people who find showers particularly difficult (ie it's not just a part of general incapacity) it is because of heat + being upright + raising arms above head + physicality of undress/drying/redress. Solutions: sit on floor of bath or shower cubicle, use body temp/lukewarm water, quick...
  14. eafw

    Petition: Opposing MEGA

    Yes, and we need to fight it as a political issue. There's a few scientists who might respond to reason, but by and large it's a battle against establishment schemers, and everyone who is taken in by them.
  15. eafw

    Petition: Opposing MEGA

    . I think it's more a case of widening the net as to what she can label "chronic fatigue syndrome (CFS), also known as myalgic encephalopathy (ME)", and genuinely disadvantaged children and their parents are an easy target. Would guess that this demographic is also more likely to have other...
  16. eafw

    Comment by 'eafw' in 'My letter to Professor Holgate re CMRC and MEGA'

    great overview, will be very interested to see what sort of reply you get.
  17. eafw

    Petition: Opposing MEGA

    Talking of Mr BPS lapdog .. here's a recent video and brief article he wrote saying how important open data and looking at design flaws is "We need Clinical Study Reports, and individual patient data, of course. But we also need the consent forms, so we can see what patients were told. We need...
  18. eafw

    Petition: Opposing MEGA

    "1% of secondary school children miss 20% of school because of CFS/ME" "Most will recover at 6 months with specialist treatment but less than 10% will recover without it" "Specialist treatment is now available ... as part of a research study" So, where are the Bad Science brigade, Quackwatch...
  19. eafw

    Petition: Opposing MEGA

    I am somewhat suprised that you would need this spelling out, but here goes: 1) Publicly funded bodies, the government, businesses and institutions have an obligation to give account of themselves, their finances and their corporate structure and workings. Ethics and conflicts of interest are...
  20. eafw

    Petition: Opposing MEGA

    The biggest issue we face is the lobbying from the pro-PACE/GET/CBT/NICE brigade, and it's not just a couple of people there's a whole very well-resourced network shilling for them - and they have been for years. Crawley and Holgate, even Wessely on their own would be nothing, it's the SMC and...
  21. eafw

    WE HAVE A LETTER

    I guess everyone has been reading the latest posts in the Opposing Mega thread. CMRC is so clearly beyond redemption, and tackling MEGA now will be a longer term project which needs separate approaches. So, I'll be putting this letter/statement aside ( my point of view, not stopping anyone...
  22. eafw

    Petition: Opposing MEGA

    It doesn't say anything about the executive either, how they are appointed or finances are organised. Nothing about oversight, or accountabilities, conflicts of interests, complaints. There ought to be documentation about all this. On one level it seems very amateurish, yet I think it is very...
  23. eafw

    Petition: Opposing MEGA

    This is a version of the current charter, don't know if it is the final copy https://www.actionforme.org.uk/uploads/pdfs/cmrc-charter-aug-2016.pdf "The aim of the CMRC is to drive increased interest and investment in CFS/ME research" there's more detail in the objectives This is the original...
  24. eafw

    Petition: Opposing MEGA

    The big tent seems to be very much an inner circle of schemers, and some well-meaning but largely excluded people and organisations on the periphery. Any chance for those of you with ethics to have a little chat, leave en-masse and let the wider world know exactly why ?
  25. eafw

    Petition: Opposing MEGA

    Clearly no need, their snoops are probably on it as we speak.
  26. eafw

    New Org!: ME/CFS International Alliance

    Anyone can get together and call themselves something (like OMEGA - who are they ?), though Jen's comment below indicates something more amiss That will be interesting if AfME (or whoever it is) are taking an expression of interest from individuals as an agreement to have their names and...
  27. eafw

    For Reference - links to CMRC petition, other articles and documents

    Add useful references here - if you post and have more to add then please EDIT your original post rather than making the thread longer with lots of new posts
  28. eafw

    WE HAVE A LETTER

    short http://forums.phoenixrising.me/index.php?xfa-groups-thread/a-short-statement-for-mega.2167/ long http://forums.phoenixrising.me/index.php?xfa-groups-thread/long-letter.2168/ There is also a thread here to collect references...
  29. eafw

    Long letter

    Thread to write a long letter regarding MEGA, FITNET etc
  30. eafw

    A short statement for MEGA

    Thread to write a short statement for MEGA