A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
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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. martinwhite

    martinwhite Guest

    I doubt that Reeves has the gonads to show up on 29 and 30 Oct for the HHS/CFSAC meeting. Dan Peterson and David Bell (Two of the BIG Guys in CFIDS) will be there on the 29th and I would bet anything that Reeves doesn't show up. He knows how mad the CFIDS sick are and he knows he will be attacked for this virus and the Elaine Defreitas virus and his stupid track of psychobabble and game playing for money with the Emory University MIND-BODY Program where he serves as a contractor BACK to his own CDC contractors. He may send a minion but Reeves won't be there.

    NOW, IF I am wrong, and he feels he must be there in DC for that meeting, I strongly suggest that those at that meeting DO NOT LET HIM SPEAK OR LIE. Call hiim on the carpet and DO NOT BACK OFF!!! Punch Hard at him. Enough is enough with the "make nice" to this piece of garbage. I expect that Peterson and Bell will not allow him to get away with BS but, the CFIDS sick MUST SPEAK UP and call him on every single stupid and insulting thing he says. NOW is the time to put him in his place and someone must demand that he resign from the CDC/CFS program NOW, Effective 1 November 2009.
    PLEASE: SOMEONE DEMAND THAT REEVES RETIRE OR BE REMOVED NOW OR we will be stuck with the morons at the CDC until we are dead and the next two generations are dead.
    If I were able to be there my mouth would run and curse until Security escorted me out.
    Also, the Media should be there as well if at all possible. I and others have sent many emails on this new study and on Reeves possible Federal funding crimes, but we must have many more people emailing the news media. So google and go to CONTACT US and hunt down the editors/writers on health and government and send them the info on this meeting. You could always send them on to the CDC's own website called www.cdcchatter.net where their own employees complain and comment about the issues at CDC and someone took it upon themselves to send people off to the HHS/CFSAC page and the meeting dates and issues with Reeves. THAT would give further proof that there is indeed a major problem with Reeves and the CDC waste of money, time, effort and human lives.
  2. dannybex

    dannybex Senior Member

    I think he'll show...

    I think he'll be there...it's his job to refute any new information, just like it has been with other diseases during other times. Somewhere I read that it took over 200 years(!) between the time limes/lemons were found to cure scurvy to when the British government finally, officially admitted the original discovery was correct.

    Hopefully we won't have to wait that long. :eek:
  3. Aftermath

    Aftermath Guest

    Asinine Strategy


    While I agree with your goal, your idea on how to achieve it is beyond asinine...

    It is nothing more than intellectual cowardice to shout someone down and not let them speak. I'm all for letting Dr. Reeves speak--because I am confident that we can use his own words to help remove him. Every time the guy opens his mouth, he gives us more ammunition. Give him the rope and let him hang himself.

    Remember, our argument is stronger than his on the facts. We need not need to resort to boorish, unprofessional tactics like shouting people down, using abusive language, etc. We're better than that.

    Believe me, I am as angry as anyone about the way we have been treated. Nonetheless, your suggestion to deny someone the ability to speak or to bully them with abusive language is no way to go about things. I really hope that no one follows your advice, because the last thing we need as a patient group is to be seen acting in this manner.
  4. Cort

    Cort Phoenix Rising Founder

    I'm almost sure that he won't be there simply because he was replaced as the 'ex officio' officer representing the CDC by two CDC officials about a year ago I think. I think they felt he was too much of a bull in a china shop.
  5. The Phantom

    The Phantom Member

    near Philadelphia
    One of the most important reasons Reeves must go is the Reeves (2005) "empirical" definition. He's publishing research using this definition, even though it's unverified. The original paper introducing the definition is a scientific disgrace. Anyway there's still time before the CFSAC meeting to sign the petition against the Reeves definition. It's a polite way to protest what he's doing and has done. I sent out the following email to a number of friends & relatives and got 15 or 20 signatures. I added a personal note to each and then said:

    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

    Please feel free to copy this statement, add to it, change it, use it in any way you want. But, if you can, please send it to anyone you think might sign. By the way, thanks to Tom Kindlon who wrote the petition, and no offense meant about it being a bit of a slog--it's a great petition with everything there people need. But it is an issue that's a bit difficult for people to understand if they're not directly affected by it. I just wanted to be sure people made it to the bottom and SIGNED.
  6. Dolphin

    Dolphin Senior Member

    (repeating what I said in the other thread):

    Great work, the Phantom.

    I'm quite happy for people to describe the petition wording and its webpage in derogatory/critical terms if it helps gets signatures!

    I even tried to make a virtue out of it in my written pieces to this and the last CFSAC meetings, saying it wasn't exactly a very exciting petition so I was pleased with the amount of signatures I got, etc.

    I also deliberated tried to make it factual and not to personal so people could have few excuses for not signing it. There may be a place for a petition such as "Reeves must go" or whatever but some people including probably many PhDs/MDs might be reluctant to sign that. I didn't want to lose any of my audience with this one.

    I was wondering whether to write to the CFSAC committee again before the next meeting - if I got 50 to 100 more I might do it (if it went over 2000 I would definitely do it). I did that last time when the number who had signed it jumped from 600-odd (when I sent in my testimony) to over 1000 i.e. I E-mailed all of the CFSAC members (except one whose address I couldn't find) to update them on the current total - they might not have got any other E-mails as their E-mail address aren't really given out (I just found them by searching). At the moment it has gone up from 1641 to 1745 but I'm not sure that is enough to justify another E-mail.
  7. kolowesi

    kolowesi Senior Member

    Central Texas
    petition link

    I joined CAA on Facebook and put the link in a comment. Hope that's OK.

  8. MEKoan

    MEKoan Senior Member


    Kelly, you are brilliant!

    I really hope it's ok because it's brilliant!

  9. Dolphin

    Dolphin Senior Member

    Well done, Kelly, should be fine.

    Would be even better if somebody posted it as an original message on the CAA page (and/or on other ME/CFS pages on Facebook). Signatures in the next couple of days would be particularly welcome as would give me an excuse to E-mail the CFSAC members as I say.
  10. Still, look at the CDC's site.

    Here is one excerpt listed under 'Definition' heading:

    ( note that the page was last modified in 2006 )

    "In clinical practice, no tests can be recommended for the specific purpose of diagnosing chronic fatigue syndrome. Tests should be directed toward confirming or excluding other possible clinical conditions. Examples of specific tests that do not confirm or exclude the diagnosis of chronic fatigue syndrome include serologic tests for Epstein-Barr virus, enteroviruses, retroviruses, human herpesvirus 6, and Candida albicans; tests of immunologic function, including cell population and function studies; and imaging studies, including magnetic resonance imaging scans and radionuclide scans (such as single-photon emission computed tomography and positron emission tomography). "


    And this under 'Diagnosis' heading:

    "Theoretical and Experimental Tests

    A number of tests, some of which are offered commercially, have no demonstrated value for the diagnosis of CFS. These tests should not be performed unless required for diagnosis of a suspected exclusionary condition (e.g., MRI to rule out suspected multiple sclerosis) or unless they are part of a scientific study. In the latter case, written informed consent of the patient is required. No diagnostic tests for infectious agents, such as Epstein-Barr virus, enteroviruses, retroviruses, human herpesvirus 6, Candida albicans, and Mycoplasma incognita, are diagnostic for CFS and as such should not be used (except to identify an illness that would exclude a CFS diagnosis, such as mononucleosis). In addition, no immunologic tests, including cell profiling tests such as measurements of natural killer cell (NK) number or function, cytokine tests (e.g., interleukin-1, interleukin-6, or interferon), or cell marker tests (e.g., CD25 or CD16), have ever been shown to have value for diagnosing CFS. Other tests that must be regarded as experimental for making the diagnosis of CFS include the tilt table test for NMH, and imaging techniques such as MRI, PET-scan, or SPECT-scan. Reports of a pathway marker for CFS as well as a urine marker for CFS are undergoing further study; however, neither is considered useful for diagnosis at this time."

    The above statements are out of date, and costing extremely ill people tests that they need, imho.

    And yeah, for me, the word 'hate' is not too strong a word to describe how I feel sometimes about the CDC and Reeves. The complete dismissal of my suffering, torture by the very people I had felt I should be able to trust when stricken by a disease of this magnitude is a difficult thing to keep in perspective.
  11. martinwhite

    martinwhite Guest

    No, disagree. Reeves statement MUST be countered

    Maybe no need for cursing, BUT, NOW IS THE TIME to counter every single wrong, demeaning or inaccurate or non-valid statement issued by Reeves. NOW is the time or we are stuck with this piece of garbage for years.
    Again, do NOT let him get away with any foolish comments or demeaning comments or behavior.

    Someone with guts, be there and don't let Reeves get away with the same suff he has gotte away with for years now.
  12. Dolphin

    Dolphin Senior Member

    Bill Reeves keeps refering to the UK system where they have integrated CFS into their public health system, mentioning people like Peter White and the NICE Guidelines.

    That's bad news for people who want guidelines that recommend things - they're all about saying tests, drugs, etc are not suitable - and GET and CBT based on GET and a few basic tests designed to rule out other conditions are all that people need.
  13. greybeh

    greybeh Guest

    It would be worthwhile if someone can counter him, but in a way that is not openly disruptive. If it is done calmly and is confidently based on a factual rather than emotional basis, it would give him less ammunition to point at a psychological cause.

    I say "not disruptive" because it will be a bigger success if the researchers get to present their data. If they don't, then Reeves wins. Those who counter Reeves don't want to become a distraction -- the researchers need to be in the spotlight for now. They may be doing the fighting FOR you.

    I expect that in time, Reeves will be discredited as he should be, but perhaps now is not the time. For now, perhaps listening and gathering more facts is the best course of action?

    I have fibromyalgia, not ME. Forgive me if I'm speaking out of turn. I want to see him discredited, I want to see him gone, after what I've been hearing. I've got a copy of Osler's Web on order from the library. I want to educate myself further. It's good that Hillary Johnson is speaking out -- and if she can stay in the press then more of the general public might learn the facts.
  14. Kati

    Kati Patient in training

    Scheduled flight

    Just wanted to remind Reeves it's time to pack and he has a flight to take today , Washington bound :D
  15. annunziata

    annunziata Senior Member

    Hudson Valley
    Joyscobby, thank you for posting that link. I read most of the Guidelines and agree that they are very good. I wish our own public health agencies would take note. How has the Scottish media been with respect to ME? Because half of the problem here in the States was the enabling by our lapdog media, which rarely questioned the bilge issuing forth from the NIH and CDC.

    Hello and welcome -- I'm new here, too :).

  16. Advocate

    Advocate Senior Member

    Hi greybeh,

    Meanwhile, in case you don't already know, you can read some of the history at oslersweb.com/
  17. martinwhite

    martinwhite Guest

    I won the bet: Reeves did not show up at cfsac!!

    They ALL knew to keep Reeves out of there. Reeves KNEW not to be there either since he knew the shots that would be taken at him and the CDC - and boy did they get shot at!!!

    And yes, the anger of the sick was pretty heavy duty. No cursing, but there was indeed deep seated anger.

    QUESTION: Is the CDC/CFS program being moved away from Bill Reeves OR is the new virus replication being done by the CDC's Retrovirus Lab but the CFS program still remains with Reeves????? Anyone know this answer?
    Did anyone hear or have knowledge of what they will do with Reeves and the CFS program???????

  18. Dolphin

    Dolphin Senior Member

    Just to be clear: It is the CDC and Reeves who were using the term UK. I'm just quoting from the last CFSAC meeting, research plan, etc. There is little doubt they were referring to services and guidelines in England.
  19. Alice Band

    Alice Band PWME - ME by Ramsay


    You missed out a bit. Before the CDC does that .... they will....

    The CDC will first try to replicate the research in it's Retroviral division (after moving all the staff over from it's CFS section).

    They will look for the virus on the Wichita cohort and not find it. Then they will say that the virus is not a feature in CFS.

    As they have been asked to look at "Wards of the State" in Georgia, they will find lots of CFS there (Empirical criteria) and then declare that this fits in with their CFS is due to childhood and abuse theory.
  20. joyscobby

    joyscobby Senior Member

    I was aware of that but wanted to point out he didn't or did not want to make people aware of the Policy difference (in developement in Scotland) The mess they have made in the US and the UK are closely tied and for very simalar reasons. Luckily Scotland wants to rise above it and move ahead in the right direction. All I was pointing out was more amunitions as it advocates ME uses the Canadian definition and general unfitable chronic fatigue syndromme so to speak (now coined the Reeves syndromme) be seperated out. Exactly what patient advocates and researchers are asking for in US.

    I watched the first half and missed the secound and will catch up on that. Will watch tomorrow.
    It is the first time in over 20 years that I think that there are answers on the horizon. Been going around with Zippity do dah zippity day my oh my what a wonderful day in my head for some reason.

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