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Bets that William Reeves DOES NOT show at CFSAC

Discussion in 'General ME/CFS News' started by martinwhite, Oct 26, 2009.

  1. Dolphin

    Dolphin Senior Member

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    But if another definition was used, say the Canadian ME/CFS definition, to be called ME/CFS for the rest of the E-mail.

    There would XMRV+ ME/CFS and XMRV- ME/CFS. Scientists could probably still find interesting things in the XMRV- ME/CFS group.

    But if a CFS (Reeves criteria) group is used, there would be:
    XMRV+ CFS (Reeves criteria) and XMRV- CFS (Reeves criteria). The second group is going to be an extra huge mess for scientists to study.
     
  2. anne

    anne Guest

    Levi, you really have made me feel better.

    As for the second group, just take out their uteruses. Everything will be fine.
     
  3. shrewsbury

    shrewsbury member

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    ah so that's what I need. and here I've been sitting around waiting for a cure and all I had to do was have a hysterectomy

    (thanks anne and levi - i do like my humour black at times!)

    if:D:D
     
  4. Alice Band

    Alice Band PWME - ME by Ramsay

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    Thanks Levi,

    For the kind reply. I hope that you are right as well!

    Last week I heard that Prof Peter White, the Professor of Psychological Medicine at Barts Hospital in London, will be working on his own patients to try and replicate the virus finding.

    He has just been spending millions on the PACE trial and that is coming to a end and he needs something new to do.

    http://www.pacetrial.org/

    As a member of the Wessley school it will be interesting to see how much this costs (and how long it takes) to produce the finding that CBT can cure XMRV.

    It is pretty bad here. XMRV is a terrifying retrovirus but for many people with CFS and ME in the UK it is our best hope of being taken seriously.
     
  5. joyscobby

    joyscobby Senior Member

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    to late for me they took mine years ago. can anyone tell me who it was talking about IC she mentioned endometriosis which they said I had and then said I didn't another long complex story. so I guess if I an xand- then it is the straight jacket and padded room for me.
     
  6. _Kim_

    _Kim_ Guest

    That was Dr. Janet Smith. She was on the waiting list and because 2 others before her were not in the room, she got an opportunity to give her testimony. So fortunate, because she touched on some things that no one else did like IBS and Endometriosis.
     
  7. Dolphin

    Dolphin Senior Member

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    That's very interesting. Can you say where you heard this (PM me if you prefer). I haven't been following the UK lists that closely - maybe other people have heard it.

    I'm not sure which patients are mentioned. But for the PACE Trial, they are using the Oxford criteria (so patients just require physical and mental fatigue/similar - i.e. they are broader than the Fukuda criteria). Oxford criteria cover around 2% of the population.

    Also a lot of people who know they have "proper" ME/CFS won't go to the Barts as they know the attitude there and the pressure that will be put on them to exercise. Not everyone with "proper" ME/CFS won't go, but a lot won't.
     
  8. Alice Band

    Alice Band PWME - ME by Ramsay

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    TomK,

    Colin Barton said this at the UK APPG meeting in London, England last week.

    It was during a "rant" so I cannot guarantee that it will be reported in the minutes of the meeting. This information came from someone at the meeting who was very concerned about him (Barton).
     
  9. Dolphin

    Dolphin Senior Member

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    Thanks. As well as doing minutes now, they also do a transcript.

    Anyway useful to know the source both in terms of whether I use it and if I do, the reference I should give (I'll just say mentioned on a forum etc rather than mention you of course if I do mention it).

    Thanks again.
     
  10. Kati

    Kati Patient in training

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    OK now that we know that he didn't show up, how about bets that he will be fired within the next week? :D
     
  11. Hmm

    Was Reeves due to show up at the CFSAC or was it optional?

    Currently, the CDC are a laughing stock now the news is out about this retroviral link. They are investing millions in CBT and phone therapies to cure people over the phone! :rolleyes:

    In a matter of months it will be official that genuine ME (rebadged CFS in the 1990's) is highly linked to XMRV. As Dan P alluded to, then people will start suing people for infecting them with CFS in blood transfusion banks.

    Imagine that. 'He infected me with CFS, I want $5 million compensation'.

    What about Reeves and Wessely then?

    How many people have been infected due to being told their illness is psychosomatic and treated with CBT and graded exercise?

    How many pregnant women are breast feeding as we speak, hear about XMRV, get a test and find out she and baby is positive? Heads are going to roll.

    If XMRV is what it surely will be, Reeves and Wessely will be surplus to requirements. Governments usually have a way in dealing with these people and send them on an 'extended holiday' without prior warning.

    If XMRV is what it may be, the situation will be 'managed' I asssure you.

    The CDC will come on board, put CFS into an infectious disease category and claim to be super concerned about their valued Americans.

    There will then be a story in the newspaper about Reeves and his like being 'depressed' which lead them to do something tragic.

    This way, their is no one to blame anymore - they're out of the picture and the loving caring CDC, NIH can boast that they funded the WPI and took them under their wing to protect patients and 'fight' CFS - XAND.

    There is no alternative if XMRV is infectious, literally no alternative. Just now we hear you can 'catch' CFS as simply as getting H1N1, or being caused by H1N1.

    CFS becomes the new HIV.
    (Which it always was).

    The CDC could be very smart, and place Mikovits/Peterson at the head of their research programme - the CDC covering their tracks and showing consessions to millions of angry patients.

    Either that, or they risk celebrities ending up on Oprah saying the government allowed them to be infected, and millions of 'healthy' people go get tested and many realise they too have been stung by the stealth wasp.
     
  12. Aftermath

    Aftermath Guest

    Reeves and Wessley

    None of what you suggest is going to happen until a causal link between XMRV and ME/CFS is proven--and I think "a few months" is very optimistic for this. Three to four years is probably more accurate, assuming that funding levels stay constant.

    That being said, if and when this does happen, Reeves and Wessley should be hung from their pants on the nearest flagpoles.

    We can do this by hammering them with organized protests at their homes and places of work. I don't wish them physical harm, but they need to be shamed into a permanent retreat from science and medicine.

    I really hope that whatever organizations that exist in the UK are already making plans to shame our friend in that country to going into hiding.
     
  13. martinwhite

    martinwhite Guest

    Go to htto://www.CDCchatter.net and Read CDC Staff comments

    Want to see something interesting????
    go to www.cdcchatter.net and go to the section titled: "New progressive leadership needed for CFS at CDC"Posted by: Anonymous on Tuesday, September 29, 2009 - 12:00 AM.
    Calls for new progressive leadership in CDC's Chronic Fatigue Syndrome (CFS) program and a more appropriate location in the CDC organization, as well as concerns about use of CDC funds for CFS.
    The HHS Scientific Advisory Committee for Chronic Fatigue Syndrome and the International Association for CFS/ME have formally recommended a change of leadership at the CDC that can achieve efficient meaningful progress in CFS research, clinical care and education. They recommend "that the CDC needs to identify a CFS program leader who is a progressive, open-minded, and dynamic manager with a sense of urgency commensurate with the pressing needs of the CFS community." Based on estimates of increasing prevalence and the poor track record after 25 years of effort, the IACFS/ME is highly critical of the proposed 5 year strategic plan and urges that the CFS program be relocated to the National Center for Chronic Disease Prevention and Health Promotion which "contains the necessary expertise and leadership critical to establishing interventions to detect, control and prevent CFS."

    Also at issue is the possible misuse of funds. Formally testifying before the CFSAC, Kim McCleary, President and CEO of the CFIDS Association of America, detailed concerns about the management of CDC funds allocated for CFS research.

    Minutes of the DHHS Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting, October 2008

    Testimony of Kim Mcleary October 2008

    CFSAC recommendations, May 2009

    IACFS/ME's recommendations on CDC's 5 Year Strategic Plan for CFS Research, July 2009

    11/2 UPDATE - Looks like the CDCs chronic fatigue syndrome research group, led by Dr. William C. Reeves, may have some splaining to do in Washington. A possible research breakthrough - the discovery of a correlation between CFS and a retrovirus related to the AIDS virus - has fired up the medical community in recent weeks. "This is going to create an avalanche of subsequent studies," Dr. William Schaffner, an infectious disease expert at Vanderbilt University, told the New York Times this month. But will the Centers for Disease Control and Prevention play a role in that research? It hasnt so far.

    Read the Atlanta Unfiltered article Officials Advocates: Where was CDC for milestone in chronic fatigue syndrome research?

    ***COMMENTS ON THIS STORY HAVE BEEN TURNED OFF AS THEY VEERED TOO MUCH TOWARDS PERSONAL ATTACKS***----------------------------
    This site is meant for CDC people (and outsiders if they know about it but most don't) to talk about CDC issues. There were so many negative comments about the CDC/CFS program under Reeves BY THE CDC STAFF and some comments that the webmaster considered personal attacks against Reeves, that the 36 comments were removed. The webmaster allowed an update that takes you to another site with an article written about the CDC and its CFS scandal. But, if you want to see the comments from the CDC staff themselves that were removed, go to the SEARCH box on the bottom of the page on the left side and put in CFS . This will bring up all the comments that were removed fro public viewing. Very interesting to hear the CDC staff complain about the CDC/CFS/Reeves. You don't need to be a CDC staff member, but most of the public did not know this site exsisted. It does not belong to the CDC but they must allow it according to law, the CDC people just can't go to the site on CDC time or using their computers. WWW.CDCCHATTER.NET -
     
  14. Usa usa usa

    America says end of November before they state if blood supply is safe.
    http://www.youtube.com/watch?v=TQNykQ3_SCE
    :p

    Quite how they 'know' considering know one has decided the best test yet I don't know!
     
  15. bananaman

    bananaman

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    The end of November wow such urgency hey! :eek:
     
  16. Lucie

    Lucie

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    More stuff from www.CDCchatter.net

    If you google CDCchatter, and click on "cached" you can see further conversation - or at least we were able to access more posts two days ago.

    Interesting stuff, but of course since it is posted anonymously, you don't know of the reliability of what's being said.
     

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