Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Article: The Imperial College XMRV Study: The Brits Smack XMRVOr Do They?

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jan 9, 2010.

  1. Phoenix Rising Team

    Phoenix Rising Team Senior Member

  2. George

    George Guest

    4 paws up!

    Nicely written Cort. Very thorough and balanced. It's a wonderful summation to all the rig-a-maro on the thread. Really valuable for authors, media and bloggers looking for good information.

    Score for the Phoenix Rising site!
  3. flybro

    flybro Senior Member

    Thanks Cort

    Another thing to remember is that before the WPI and XMRV news came out, Kerr had published his gene studies, finding what seem to be genetic markers for ME/CFS.

    A second study involving 80 genes also showed subsets of genetic markers, perhaps explaining the differing effects that can be experinced by many of us.

    The fight is on, but we were on the up before XMRV. This is one battle in a war, we are in a period of time where more battles are being won for us.

    The most imortant thing we can do is look after ourselves and eachother as best we can. We are about to become the veterans of a 60 year war, that we fought, we survived and we won, stick around for the party.
  4. Cort

    Cort Phoenix Rising Founder

    Thanks. I am really jazzed about a few research topics; I think the repeat exercise studies are fantastic, as is the new Light study - which honestly fits me more than anything - and the Baraniuk brain proteome study and, of course, the Light study (and the mitochondrial lactic acid brain study) and, Kerr's continuiing work.
  5. parvofighter

    parvofighter Senior Member

    YES! to 95%.

    Wonderful article Cort. Makes great sense, and added, as always, another level of understanding for me. Except for one tiny paragraph! (OK, sorry, I gotta take you to task on this). Here goes.... I do however disagree (OK, vehemently!) with your assessment of Different Patient Groups. You had said, "This is a methodological problem rooted in the complexities of PCR analysis not a patient cohort problem." There are myriad definitions of "quite ill" patients - many of which may have nothing to do with RNase-L deficiencies, vasculitis and myocarditis, orthostatic intolerance, and of course PEM (to name only a few) - which of course the Canadian and Fukuda definitions allow. Their patient criteria selection was NOT clear. But what WAS clear was that they did not use Canadian/Fukuda criteria - which the Science researchers explicitly did use. Even if you factor out all the discrepant lab work - which is huge in its own right, on the basis of manipulative patient selection alone - which is Wesseley's raison d'etre - it's not a replication study. Eliminating patients with any abnormal physical findings stacks the deck lamentably in favor of finding nothing. Which perhaps not coincidentally, is exactly what happened @ Imperial College. C'mon Cort! LOL
    But YES, I'm jazzed about Kerr's upcoming work, and the repeat exercise studies too! And about getting my formatting back - I'm going into formatohological withdrawal!
  6. Nina

    Nina Senior Member

    Cort, very good summary and evaluation, thank you for this! Flybro: Very well said, especially the last two paragraphs! Both helps me to put things into perspective.
  7. Cort

    Cort Phoenix Rising Founder

    Thanks Parvo - yes, it may be that I'm underestimating Dr. Wessely's ability to parse out patients that don't fit his theory. My understanding was that they followed the standard Fukuda protocol on eliminating patients - which the WPI must have done as well. (Fukuda doesn't say anything about RNase L, immunological tests, orthostatic intolerance - all those are allowed. Fukuda. to my understanding catches only people with some other diagnosed disorders and people who score abnormalities on basic lab work - which CFS patients generally do not. )

    In any case we'll see pretty soon as other studies come out. I hope you're right. :)

  8. Katie

    Katie Guest

    I think that the main issue is what shape the pool of patients was in before he applied Fukuda.
  9. Alesh

    Alesh Senior Member

    Czech Republic, EU
    Competing interests?

    The authors of the article declared:

    Competing interests: The authors have declared that no competing interests exist.

    But I think it is a lie: If it turns out that XMRV is the cause of CFS it a definitive end of Simon Wessely professional carrier.
  10. Advocate

    Advocate Senior Member

    Hi Katie,

    For a fleeting moment I thought I understood what you were saying... but the moment passed, and I lost it. Can you help?
  11. Mithriel

    Mithriel Senior Member

    The problem with the patients is complicated.

    GPs are referring every patient with unresolved fatigue to the clinics. I doubt if they know the extra bits of Fukuda, CFS in the UK (and in discussions by the weasels) is taken as a synonym for chronic fatigue.

    They are going to be new patients. CBT and GET, which is all these clinics offer, is a one off treatment. It is not like an MS clinic where patients are seen for years.

    While they mention consecutive patients as if it was a random choice, they actually SELECTED from consecutive patients. They gave them some blood tests, a questionnaire and then decided who actually had their version of CFS. They make it sound like an objective selection but in the end it came down to physician judgment.

    There is not anything basically wrong with that, but they give the impression that it was otherwise.

    Patients who have had the questionnaire say it is mainly asking about emotional things. This is no surprise. SW and the rest invented the Oxford criteria which left in patients with depressive and anxiety disorders. These patients were chosen for studies published from 2007 and one says of 84 patients in the trial "64 were free of psychotropic medication" this sounds like they were using Oxford not Fukuda. Their definition also explicitly excludes anyone with neurological signs so patients with ME, a disorder that requires neurological signs are going to be weeded out.

    The actual paper talks about the "CDC" definition and "international concensus" which sound like the empirical definition. The Fukuda definition was devised before the problems with immune cells, vasculitis and so on were discovered. In actuality researchers SAY they use this definition but they are actually looking at patients who have more things wrong with them. That is the advantage of the Canadian Criteria, of course, but they do it so that they can find the things that are wrong in patients, because they want to find the physical problems. So they use a patient group that does not just have tiredness and sleep problems.

    Let's face it, from this forum it is obvious that patients all over the world share similar symptoms and there are many more than Fukuda notes.

    The psyche brigade however use Fukuda as a MAXIMUM of symptoms. Sleep problems and headaches, especially if they are just a question on a form, are almost universal. If you ask someone sitting beside you on a bus they will probably tell you they have been tired and had sleep problems and headaches at some time during the last six months.

  12. Katie

    Katie Guest

    Now that depends on whether I still comprehend my own thought ;)

    I'll expand my logic. We know that Wessely et al. applied Fukuda to his patient base, this is all good and well, let's name it the Kings Clan. But other filters have effected the Kings Clan before Fukuda got his hands on it which may have shaped Kings Clan beforehand. For example, return customers will more likely than not fit the criteria of childhood trauma because the clinic there is designed to deal with ME/CFS cases routed in trauma. ME/CFS cases with no trauma will be more resistant to being a part of the Kings Clan so will voluntarily exclude themselves and explore other options after an initial visit. Therefore, it is more likely than not that the Kings Clan base was inadvertantly baised in favour of more psychiatric cases than not.

    I'm trying to think of an analogy...

    You go to a green grocers trying to find apples but they only have oranges. The green grocer has long gotten rid of the apples because he's allergic (stay with me here, it's going somewhere). You still go through with the search and conclude that there are no apples in any green grocers anywhere. In reality, you just used the wrong green grocers to start with, no matter how good the search was, you won't find apples in oranges.

    Does that make sense?

    It really does make sense in my head, if you still don't get it, let me know and I will try again, I'm pretty stubborn when I think what I'm saying has got even the remotest of points!
  13. Katie

    Katie Guest

    I'd also like to add that I think cohort choice, although vital for all these studies, is not the weakest aspect of the IC study. For me it is methodology i.e 0%.

    As I'm wounded (stupidly) I won't be writing much for a day or two.

  14. Hysterical Woman

    Hysterical Woman Senior Member

    East Coast
    Oh No, Katie,

    Hopefully not seriously!

  15. Katie

    Katie Guest

    hurt my ribs, hence one finger typing and abandonment of capital letters and any punctuation requiring shift key, exclamation mark. feels better today but on pain killers. will be fit as a fiddle, well kinda, tomorrow, muscles in chest worse off. huzzah for one finger typing, exclamation mark.
  16. Hysterical Woman

    Hysterical Woman Senior Member

    East Coast

    Katie, I am very sorry! Please take care of yourself and please don't respond to this message!:Retro smile:



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