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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

  1. M

    PACE 10 year follow-up: feasibility study

    Surely if the study is to have any validity you have to ask the question of all the participants, not just a 'random sample'. Otherwise don't you risk the possibility of skewing the results in favour of just a small sample - I mean God forbid that would ever happen! Why such a small sample...
  2. M

    NHS Bristol on 'Management of somatoform disorders' - read this and weep.

    Spot on! In fact to my mind that seems to be the whole approach the psychobabble brigade have to ME and any other condition they can sink their claws into; isolate them then belittle them. That way you can control the narrative they receive, plus no-one else gets to know just what you are doing...
  3. M

    NHS Bristol on 'Management of somatoform disorders' - read this and weep.

    Well . . . it's not a million miles from Glastonbury!
  4. M

    BBC interview with Ron Davis

    Eugh!! Am I the only one who somehow feels dirty and soiled by reading that sickeningly sycophantic piece. Yuk! As you say, it does indeed explain a lot.
  5. M

    May 12, 2017 Is International ME/CFS and FM Awareness Day

    Good luck @MEMum, hope back is ok and the day goes well for you. Bless you and thank you for giving it a go (even if you don't make it).xx
  6. M

    David Tuller: New Virology Blog post (May 3rd)

    Totally agree which is why I have said (on the Crawley BRS2017 thread) in relation to Liplinks comment about an MEA poll to see who wants MEA to leave CMRC, that I am more than a little concerned that voters should be given a full background as to the reasons for the poll. I broadly agree with...
  7. M

    David Tuller: New Virology Blog post (May 3rd)

    If I remember correctly I was a not sure at the time, only having being diagnosed around early 2012. However, having done more and more research and gaining a much better understanding of the whole PACE / MEGA / BPS thing since then, I would now want a choice of 'over my dead body'.
  8. M

    Crawley: How to deal with anti-science BRS2017

    Personally I like the idea of a poll and would definitely support it myself as I feel we need to let all ME charities know we are not happy they 'appear' to condone such hypocrisy and harm. My concern would be that I find it surprising how many patients on ME forums are still unaware of or not...
  9. M

    Crawley: How to deal with anti-science BRS2017

    No problem, I guessed that was probably what you meant. And I do agree when I say I am a nationalist, in no way do I want to associate myself with anyone like the scary BNP or EDL etc. Also agree on not wanting to dive off on too much more of a tangent, though I do see why you were alluding to...
  10. M

    Crawley: How to deal with anti-science BRS2017

    Don't you just love David Tuller. I love the way he just quietly and calmly finds just the spot to ever so politely stick the knife in. I reckon he's got British blood in him somewhere. As for EC poisonous as yes undoubtedly. As well as being plain wrong, unless of course ME has mutated as...
  11. M

    Crawley: How to deal with anti-science BRS2017

    Totally agree @Yogi . It's high time the ME charities (or at least certain ones of them) got off the fence and made it clear to patients whether they condone this sort of abuse or not. Or indeed, whether they agree with such vile comments from EC and her supporters/cronies. And if they don't...
  12. M

    Crawley: How to deal with anti-science BRS2017

    Exactly @trishrhymes , we are lucky indeed. And as David Tuller so rightly says in his (yet again) excellent blog, we should also thank the Journal of Health Psychology for making these commentaries open to the public. A bold and refreshing step indeed in the quest to retain scientific...
  13. M

    Crawley: How to deal with anti-science BRS2017

    I'm afraid I hold the BPS brigade, the politicians and the medical insurance companies equally responsible for this particular injustice. If it wasn't for the BPS brigade pushing this ethos with 'so-called' scientific evidence then the politicians and the insurers would not have this particular...
  14. M

    Crawley: How to deal with anti-science BRS2017

    Disgusting case, the current welfare system is totally broken and is based on the basic principle that illness doesn't exist, just the unwillingness to work. The biopsychosocial model pedalled by the likes of Wessley has such a lot of cruelty to answer for. Whatever happened to humanity.
  15. M

    Crawley: How to deal with anti-science BRS2017

    We can be quite picky though Snow Leopard. ;) We do have a habit of only donating to those studies where appropriate criteria is used to ensure that it is studying the actual condition those pesky scientists claim they are studying. :rolleyes: I mean, fussy or what! :p
  16. M

    Crawley: How to deal with anti-science BRS2017

    Indeed. Given that her oft used phrase is anti-science, you would hope that any self respecting scientists in the room would not take her somewhat offensive comments at face value without checking out their veracity, looking at both sides of the equation, digging deeper. Otherwise one can only...
  17. M

    Crawley: How to deal with anti-science BRS2017

    I find it sad that scientists and the medical profession currently don't seem to see the irony or hypocrisy in demonstrating for respect for science whilst allowing this perpetual abuse to continue. How on earth are we meant to 'respect' this sort of treatment.
  18. M

    Radio on ME/CFS Sat 5th Nov 9-10amGMT

    Hi Sue. I'm only getting an error message when I click on your link. I am the only one that it's not working for. Tx.
  19. M

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

    Exactly, that's my point AB. As you and @Cheesus say the danger is we will get too broad a spectrum that is too heavily weighted towards general fatigue and mildly affected as it always is. Personally I think that is inevitable if anyone that is pro biopschosocial model is allowed to be...
  20. M

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

    But that is dependent on them getting a sufficiently high enough proportion of moderate/severe ICC ME and upwards in the study and not having it predominantly "tired all the time" fatigued, CFS or only mildly affected. The lower end of the scale should be the minority and act as controls and the...
  21. M

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

  22. M

    Counter petition to the MEGA petition, brainstorming stage

    I agree with that principle re criticising a profession, but I don't see that psychiatry has any place in a biomedical study so I want all psychiatrists removed. Or at the very least all that believe ME is a psychiatric condition or has anything more than secondary psychiatric symptoms, in...
  23. M

    The Real ME: A Stock Photography Resource for the Media

    Perhaps the answer is if a particular patient is being talked about in the article hopefully they will be prepared to provide a photo of themselves that way the picture will match the description. If the patient is not then don't put a photo in at all, it isn't necessary after all. If they...
  24. M

    The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference

    Sounds interesting. Already looking forward to reading part 2. In fact already wondering how we can volunteer to take part in any resulting research . . . any one know?
  25. M

    UK: Norfolk & Suffolk NHS ME/CFS center goes biomedical!!!

    I agree Sasha. The information @elliepeabody is providing looks very detailed and useful and provides us all with at least a glimmer of hope. As a patient I would love to get involved in something like this as it could do so much good, or certainly be a lot more useful and effective than the...