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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. S

    Latest from Prof Hooper and Margaret Williams, DSM V submission

    If you want to know "Esther's" reason d'etre then all you have to do is look through all of the many posts she has made on here and you will very soon see a recurring theme and an agenda with obvious motives. Frankly it's getting very boring now. I just console myself with the fact that what she...
  2. S

    Dr Vernon and psychiatrists from the Wesselly school as Co -Authors

    Well, this all explains alot. I think I'll listen to the likes of Gerwyn more on the WPI's studies.
  3. S

    Dr Vernon and psychiatrists from the Wesselly school as Co -Authors

    You sure about that?
  4. S

    Time for the Big Talk. How's the CAA doing?

    It seems to me that there are distinct echoes with your CAA in the US and what happened over here in the UK with Action For ME (AfME). Please heed the warnings and don't let the same happen to you because AfME have been an absolute unmitigated disaster for people with ME in the UK. I see similar...
  5. S

    CAA recommends, to me, questionable article on pacing. March 2010

    Alex Howard is notorious in the UK. How sad that the CAA and it's defenders on here have fallen for the money-making scam con that it is. It's in the same league as the Lightning Process and all of it's imitators. What a massive own goal for all concerned but maybe it's showing the truth about...
  6. S

    WPI ethics...

    You are never anonymous on the Net. If someone really wants to trace you they can, easily. So, you better be really sure of what you are saying. It's definitely right to keep an open mind on everything, even the possibilty that there are people out there who would like nothing better than to...
  7. S

    WPI ethics...

    Facts are truths, not guesstimates, suppositions, insinuations, possibly trues etc etc. These accusations might be true, but until they are proven to be true they are not facts and therefore they can not be said to be correct. Yet................
  8. S

    XMRV CFS UK study #II

    So you can't keep science and politics seperate with ME. They go hand in hand, more's the pity. People who have seen the political shennanigans before have every right to express their worries and opinions, just as much as yours. [It's not up to you to decide what's right to post and what's not...
  9. S

    XMRV CFS UK study #II

    The trouble is that this "debate" isn't only about science, it's also about politics. Maybe you are unaware of the political situation surrounding ME in the UK? Well believe me there's been lots of "funny" stuff gone on over the years so maybe give those of us who have lived through decades of...
  10. S

    XMRV CFS UK study #II

    Wow, thanks for the lecture. By the way, science is all about it being picked apart. That's how progress is made. I don't think anybody on here has been unfairly attacking or criticising the latest study and it's researchers really. All I've seen is quite a few (not me) very well scientifically...
  11. S

    The Fight is on...Imperial College XMRV Study

    Hi, the bit that annoyed me from Holgate's quote was:- As a clinician who sees patients with this group of diseases I recognise theres a real thing here, its not all psychiatric or psychological, So, as I read this, he does think that ME/CFS is partly psychological or psychiatric. No...
  12. S

    UK testing.

    Hello, I don't know if you are aware of the following website but it was put up by a fellow UK ME patient to try and offer some information on how to go about getting tested for XMRV in this country. It's only a basic site giving basic info and advice but it's being done by someone who is...
  13. S

    The Fight is on...Imperial College XMRV Study

    Government + psyches + insurance connections For those who don't seem to see the connection between Government, psyches, the insurance industry, the benefits system and their potential benefits for portraying ME/CFS as a psychological condition, please see the following link about the recently...
  14. S

    XMRV Positive in the U.K.

    Man this damned illness is so complicated! Thanks for your very informative and interesting comments.
  15. S

    The Fight is on...Imperial College XMRV Study

    Yes, I believe that you are correct. I also don't trust Wessely et al to have provided "untainted" blood. How do we know that the blood samples were kosher anyway?
  16. S

    The Fight is on...Imperial College XMRV Study

    Interesting to note that the bit where they said "We draw attention to another study that compared two services run in the same London teaching hospital, one by an immunologist, the other a psychiatrist, but showed no fundamental differences between the two (White et al, 2004). " That would be...
  17. S

    XMRV Positive in the U.K.

    Thanks, that sounds like it could be right. I'm learning this as I go along! If nothing else all of this stuff is fascinating and very interesting. It also gives me some understanding why XMRV might be so hard to pick up in blood tests. I'm looking forward to seeing how all of this develops.
  18. S

    XMRV Positive in the U.K.

    It says here that "XMRV is typically present at a very low-copy number......." I worry that ME/CFS deniers might be able to say that as XMRV is present (if at all) in such low numbers then it's affects on the body are negligible and will dismiss it on this basis. So my question to the...
  19. S

    XMRV Positive in the U.K.

    Thankyou to froufox and Clive for your answers and sharing your feelings. Like you said this isn't then end of matters I'm sure. Good luck.
  20. S

    XMRV Positive in the U.K.

    Hi froufox, thanks for being brave enough to let us know your own results. Can I ask if you were one of the recent UK residents who sent their blood off for testing or are you in America? Where were your tests done? Personally I don't think that the fact you got a negative result doesn't mean...
  21. S

    Daily Mail poll: "Do you think ME is a genuine illness"

    Hi, Does anyone know if the main UK ME charities have complained to the Daily Mail? If they haven't then they should do.
  22. S

    The Fight is on...Imperial College XMRV Study

    Thanks for the comments. I have posted it as a new separate thread. I don't know where was the best place for it but I have placed it in this section as he seems to be following the comments on his little study. I just keep picturing him with an evil sly grin on his face enjoying all the latest...
  23. S

    Personal Message To Prof. Simon Wessely

    I see from one of Holmsey's posts that you, Prof. Wessely, appear to read some of the threads on here. Well, I'd just like to say to you that it's a FACT that my life has been made a thousand times worse than it needed to have been over the last 20 plus years directly as a result of YOU and YOUR...
  24. S

    The Fight is on...Imperial College XMRV Study

    I see from one of Holmsey's posts that Prof. Wessely appears to read some of the threads on here. Well, I'd just like to say that it's a FACT that my life has been made a thousand times worse than it needed to have been over the last 20 plus years directly as a result of HIS and his like-minded...
  25. S

    The Fight is on...Imperial College XMRV Study

    Hi, I think people who make comments such as Esther 12's "Maybe it's a bluff from the WPI to get a few more months of selling expensive tests before they take the money and run? This is exciting stuff. " need to be very careful with their comments legally speaking, because to my eyes...
  26. S

    The Fight is on...Imperial College XMRV Study

    Thanks for this Garcia. Yes very interesting exchange. I hope it continues on, and it's good to see that McClure is at least responding to questions. One bit that jumped out at me was where it said that Kings were responsible for preparing the DNA and not those at Imperial. I wonder if that...
  27. S

    The Fight is on...Imperial College XMRV Study

    Thankyou Smulan, that's very interesting and does go some way to easing my fears. So I guess that the WPI study tests were more complicated/sensitive than those currently being used by Lombardi then, hence the lower, as of yet, positive findings? Like everyone else I'm just going to have to...
  28. S

    The Fight is on...Imperial College XMRV Study

    Hi all, sorry if this is a dum question or has been answered before. Are the tests being performed by Lombardi the same ones as used in the WPI study? If so, why aren't they finding the same rates of infection (60+%). If they know what tests to use to replicate those used in the WPI's study why...