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Speak out about the Reeves definition delaying XMRV/XAND research

Discussion in 'XMRV Research and Replication Studies' started by The Phantom, Oct 26, 2009.

  1. The Phantom

    The Phantom Member

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    I'm starting this thread, because there may be some people who haven't heard of Tom Kindlon's online petition against the Reeves (2005) empiric definition. There are about 1750 signatures on the petition, and it would be great if there were 2000+ by Thursday, the first day of the CFSAC meeting. If you haven't signed, please do. (Link to the petition is at the end of this post.)

    My fear is that Reeves is going to do XMRV testing on the patients he's been studying in Georgia using his definition. Because around 75% of those patients don't have ME/CFS, he will find a much lower percentage of people with XMRV than was found by the group at the Whittemore-Peterson Institute. Although I think WPI will ultimately prove Reeves wrong, it could cost precious time and energy and delay finding the answers about transmission and treatment that we all want and need. So I think it's very important that the CFSAC makes a strong statement against the Reeves definition--something they didn't do at their last meeting. We need to push them!

    In order to get more signatures, I've been emailing old friends, relatives, colleagues, anybody I can think of who might sign. It's actually been a good excuse to get in touch with people. This is what I've sent out, after saying hi & what's up:


    By the way, I'm emailing everyone I can think of to see if anyone is willing to sign a petition about the definition of Chronic Fatigue Syndrome (which I, along with many other people, call Myalgic Encephalomyelitis or ME/CFS). It's a pretty esoteric thing to have to have a petition about, but, unfortunately, it's important. Basically, since there's now a lot of data about infectious and other possible causes for CFS, in 2005 Dr. Reeves of the CDC decided to redefine it (CFS) so it would better fit his theory of a psychological cause. Dastardly! Anyway, there's an online petition against the definition. It's a bit of a slog to get through: there's the petition, then there are references, then there's an explanation, then there are a bunch of additional notices, then there's the place where you "sign". They do want your email address, but you can check a box saying you don't want to be notified about any additional related petitions, and I've never been spammed by them to my knowledge. You can also check a box if you don't want your name showing up on the internet. It only takes a couple of minutes.

    You may have heard about the new data that suggests that ME/CFS may be caused by a retrovirus called XMRV. Given that a retrovirus was suggested as the cause in the early 90's but rejected by the CDC, a lot of people think this is a good time to discuss why the science has been so bad. Hence, the petition. If you want more information before considering whether or not to sign, call, email or shout loudly and I'll be happy to explain further. If you know anyone else who might be willing to sign it'd be great to pass it along.

    Here's the link: http://bit.ly/nYHy5



    If you've seen this post before, I apologize. I've been putting it on threads that seem appropriate. Anyway, if you have the energy to send this to friends, I think it's worth the time.

    Also, please feel free to copy & paste and post this anywhere (Facebook, MySpace, Twitter, other forums, any other places you can think of), and to alter it in any way that works for you. If you hate ME/CFS use another name. My goal is to get as many signatures on that petition as possible.

    By the way, I think Tom Kindlon has forgiven me for describing the petition as "a bit of a slog". It's a great petition. I just want people not to give up reading before they sign. Some people have short attention spans. I know I do at times. If you want to experience a real slog, try reading the original paper on the Reeves definition. Now that's a slog.

    Here's the link again: http://bit.ly/nYHy5
  2. Nina

    Nina Senior Member

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    Thanks for this, I had seen this a couple of days ago but thought it was only for U.S. citizens.

    I signed it now and will ask my family to do the same.
  3. The Phantom

    The Phantom Member

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    Yes, I think I forgot to say that it's not just for U.S. citizens--anybody can post. Tom Kindlon is in Ireland.
  4. PoetInSF

    PoetInSF Senior Member

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    SF
    What definition did WPI use? My understanding is that they may have cherry-picked samples from Patterson's collection to stack the deck, and they haven't released their sample's profile.

    Whether CDC uses their own definition to test xmrv is secondary issue, for, if they use a different definition, then it is a different study from Mikovits'. The first order of business is for the peers to evaluate AND replicate Mikovits' result. Without knowing what definition she used and profiles of her samples, they cannot do that.
  5. The Phantom

    The Phantom Member

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    WPI says in the Science article they used the Fukuda and the Canadian Consensus criteria. Other scientists should be able to replicate that. I don't think they're trying to conceal anything, if that's what you're implying.

    I've read the WPI group wanted to publish more about the clinical characteristics of their sample and the control sample, but Science didn't want to waste space publishing it because their audience (mostly not M.D.s) are not interested in that part of the data. They did purposely look at the sickest patients, because they thought that's where they were most likely to find high viral loads in the blood--it's not easy to find actual viruses in blood, so when you're first looking for a little-known virus it's a good idea to look somewhere where there's likely to be lot of virus particles or you might miss them. WPI has the largest repository of ME/CFS samples in the U.S., maybe the world. I don't think all of the samples were from Dr. Peterson's patients, but you may want to check their website to see what they say about that.

    We'll have to agree to disagree about the importance of discrediting the Reeves' definition. Obviously, I think it's important. The issue is that, while you and I will know it's a different study, if both studies use the same name, Chronic Fatigue Syndrome, other people (scientists, doctors, journalists) may not. As a poet surely you're familiar with the power of words.;)
  6. Dolphin

    Dolphin Senior Member

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    They used the Fukuda and the Canadian criteria. It was a bit confusing as there was an extra supplement paper with this information in it. So that might have been why the CDC made a statement that there was no information about the definition used.

    The CDC will say when they use the Georgia samples that they are using the Fukuda definition. But it's really a very weird version of the Fukuda definition (how they operationalize it is in the 2005 Reeves paper) - but they do not make this clear that it is a weird version of the Fukuda definition in most of their papers.
  7. anne

    anne Guest

    It's Peterson. They did not stack the deck any more than any other research study does, and they used samples from all over the country. Here is the information on the sample. Science did not publish it because they did not deem it necessary, but it's in the back-up materials:

    Please understand that Science is a prestigious magazine with a rigorous review process.
  8. hvs

    hvs Senior Member

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    First, they did provide this information. They used Fukuda and Canadian Consensus.
    Second, you're committing an implied logical flaw: you imply that in "cherry-picking patients" they somehow were duplicitous in that they were seeking...er...sick patients.
    They were seeking sick patients so they sought sick patients.
    Third, you state that since the WPI used the Canadian Consensus definition and Reeves will use the (Reeves) Empirical definition the CDC will not have replicated the study. If only I believed the media would discount the Reeves (failed) replication study for that reason...
  9. PoetInSF

    PoetInSF Senior Member

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    Thanks all for the info. If WPI study is reproducible with Fukuda/Canadian def, I'm sure somebody will. And, if others reproduce WPI study and CDC doesn't with Reeves definition, then that would be a good thing, I think. It'll be an opportunity to discredit CDC definition once and for all and coalesce around Canadian consensus def. Maybe we should lobby CFIDS to fund an independent study, if they are not already, rather than trying to stop CDC.
  10. Advocate

    Advocate Senior Member

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    When you pick through a box of cherries, you pick the good ones, the sweet ones.

    "Cherry-picking" is the opposite of what the WPI did. They picked the bad ones, the rotten ones, which in the past have been excluded from studies of CFS.
  11. Dolphin

    Dolphin Senior Member

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    Yes, the NICE guidelines/rules on CFS only applies to England, Wales and N. Ireland, not Scotland.

    Similarly when Reeves talks about CFS being fully integrated into the system in the UK, he is presumably talking about England (not much available in Wales or N. Ireland).

    But while there might be a use in referring to those draft Scottish guidelines (which were then to be reviewed by Scottish doctors, AFAIK, so the final draft could be worse), I think people in the US are not likely to be that happy by what is offered for people with "CFS/ME" in the NHS (which is term for the health service for the whole of the UK). The NHS is the epitome of what people might worry about from "socialised" medicine in general (it doesn't come out well in terms of access to drug treatments when health services are compared from what I see). Part of the problem is that the health spend is quite small as a percentage of GDP.

    And given Peter White keeps being referred to, I think people in the US should be worried. And lots of other people (because they are talking about international guidelines).

    One of my suggestions in my submission was that the CDC shouldn't get to pick all the people who would draw up these international guidelines.
  12. bananaman

    bananaman

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    I have a copy of the new yet to be published Scottish Good Practise Statement on ME/CFS if any body wishes to see it before its published then send me a pm and I will email it on.
  13. shrewsbury

    shrewsbury member

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    Scottish Good Practise Statement on ME/CFS

    joyscobby and banaman - great news that scotland is doing a much better job than the UK. May the Good Practices Statement make it through!

    joyscobby fyi I tried the link you provided, but it doesn't work.

    islandfinn
  14. Dolphin

    Dolphin Senior Member

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    What joyscobby was trying to say is that Scotland is part of the UK. It makes up a bit less than 10% of the total population. There could be said to be four parts to the United Kingdom (UK) (England, Scotland, Wales and N. Ireland). In the last 10 years or so, Scotland has got its own parliament (although also sends members to the Houses of Parliament in London) and its health service is separate now from England's (although they're all still part of the National Health Service (NHS)). But England makes up over 85% of the UK's population.
  15. shrewsbury

    shrewsbury member

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    Thanks Tom and all
    Brain glitch - I should have said the rest of the UK. I'm presuming that this document would take precedence over that of other jurisdictions, but that could be wrong. Confusing system you've got.

    SO - I'm interested. Is this correct?
    1. NICE (how ironic:rolleyes:) , which is off-base and emphasizes mental health, CBT and graded exercise, for England, Wales and N Ireland
    2. nothing now for Scotland and hopefully a good guideline to come through
    3. what does the NHS have for all of the UK and does it take precedence over what each independent part has?

    islandfinn
  16. shrewsbury

    shrewsbury member

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    thanks joyscobby!

    SOunds like it's like the Canadian system, only messier!

    if:)
  17. hvs

    hvs Senior Member

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    This is right on, Levi. For the fact that he's active tried to screw my family, I revile Reeves; but because of what you write above, he is about to become redundant. He doesn't own XAND.

    And the other issue you mentioned is huge. If the CFIDS Association weren't so busy "constuct[ing] a tarp "(verbatim quote) over our feelings and issuing "cautionary tales" they could be spending their time preparing to be the advocacy group or those left out of the XAND diagnosis.
  18. Dolphin

    Dolphin Senior Member

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    I wish I was so confident. I've seen findings being dismissed before. For example, if Reeves doesn't find it in his population study and one or more groups of psychiatrists in the UK and/or Australia (Reeves is very close to people both) or Bleijenberg in the Netherlands don't find it, who knows what will happen.

    If XMRV holds up at 99 out of 101, maybe it will change everything. At lower rates, things could get complicated.

    It'd be a lot easier if the CDC just went back to a half-decent definition. They have produced papers from two population cohorts on childhood abuse with the empirical definition (which look like quite well designed studies otherwise). And found lifetime psychopathology in 89% of people with CFS and 57% currently - and recommended more people with CFS need psychiatric treatment (this year). This hasn't really crept into their education programmes yet but it could do.
  19. hvs

    hvs Senior Member

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    Oh, I think this will happen. It will be a very un-fun period. There will be great wailing and nashing of teeth all around. The media will do a terrible job of pointing out the difference between the cohorts studied. I can imagine a reaction from the CAA that will make me pull my hair out.

    But when the dust settles, even in the worst case scenario, those of who are informed will still be able to get tested for xmrv and demand treatment from ID or immune docs for the infection. And we can educate others to do so, too, instead of chasing shadows.
  20. Dolphin

    Dolphin Senior Member

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    Do you know the characteristics of the CFS patients that don't have XMRV? I don't.

    What I do know is many of the people Reeves and co are including in their CFS studies wouldn't be classed as having CFS by just any about any CFS or ME researcher on the planet.

    I'm quite happy to feel some responsibility for people who have CFS-type symptoms. I think things get more complicated when you start including people who just have depression in the CFS category as the CDC is doing.

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