CFSAC Oct 29-30 - plans to challenge the CDC

Discussion in 'Fibromyalgia Main Forum' started by QuayMan, Sep 19, 2009.

  1. QuayMan

    QuayMan Member

    I wasn't posting for a while but thought I'd drop in to highlight that some people are hoping to protest about the CDC at the CFSAC.

    Remember that people can also ring in to make oral testimony so you don't have to be able to go to Washington DC to do something. There may be other ways to take part as well apart from oral testimony.

    As well as here, the M.A.D. About ME/CFS group is another place that it could be discussed (38 people have already joined and discussions have already started):

    I'm appending a message from Cort Johnson which gives some background to the situation.


    From: Cort Johnson []
    Sent: 09 September 2009 04:47
    To: cort johnson
    Subject: Phoenix Rising: The Conference Edition III: Surprise of the Conference/ Whacking the ME/CFS Patients / Rocking the Research World

    Welcome to the final IACFS/ME Conference edition.

    A Pivotal Event: Before we get to it one important announcement. A possibly pivotal event in our history is coming up. The CDC will present its Five Year Plan for ME/CFS at the federal advisory committee (CFSAC) meeting on Oct 29th/30th. They will be met - for the first time - by a united front of researchers, professional groups, support groups and hopefully patients who want to exert major change in the mediocre and wrong-headed CFS program at that institution. Dr. Leonard Jason called this the best chance in 25 years to effect major change at what it by far the biggest ME/CFS research group in the world.

    Here's the latest from the CDC:

    * Their newest definition (Empirical Definition) relegates the importance of post-exertional problems to near nothingness, requires that patients have only a low level of fatigue to be classified as having ME/CFS and adds emotional factors to the mix for the first time.

    * That new definition added so many new 'CFS' patients to the fold that CDC estimates of ME/CFS prevalence went up fourfold. Dr. Leonard Jason showed it was easy for patients with major depression to be misclassified with CFS using the CDC's new definition - suggesting that many of those patients have emotional disorders.

    * The CDC's big finding of the past few years - using the Empirical definition - is that the rates of sexual abuse are increased in ME/CFS patients.

    * Despite the high disability rates Dr. Reeves has recently stated that ME/CFS is not a disease or disorder at all but 'something' that may lead to a 'real' disease at some point. He now refers to this 'thing' using the term 'unwellness'.

    * A CFID's Association investigation found that the CDC paid a firm almost two million dollars simply to find patients for a study - making this study already the most expensive ever in ME/CFS. The CDC has ignored the CAA's claims of financial mismanagement for the past year.

    * Both the CFID's Association of America, the IACFS/ME and the CFSAC have called for Dr. Reeves to step down and the program to be overhauled.

    * Earlier this year agreeing that the program doesn't collaborate well with the rest of the research field the Dr. Reeves promised to hold an International Conference on ME/CFS treatment this summer- that was the last we heard of it. His first promise was broken remarkably quickly.

    Would you categorize your illness as unwellness? Is this the kind of program you would pin your hopes on? Or is this the kind of program that will lead this field right into a ditch? The CDC's CFS program is by far the most expensive and important single program in the field. If you want to make a difference in this disease this is the time and place to do it.

    We've opened a group on the Phoenix Rising Forums called M.A.D. About ME/CFS to discuss and coordinate efforts to take advantage of this opportunity. In order to participate in the group you need to register for the forums first. Once you've done that then click on this link ( ) or simply click on the Community tab in the menu bar running across the top of the page and then click on Social Groups to go directly to the group.

    I will be blogging about this oppportunity until the event occurs.
    [This Message was Edited on 09/19/2009]
  2. mbofov

    mbofov Active Member

    Thank you for posting all this - very important information! I almost cannot believe what they are doing at the CDC - thank you again -

  3. skeptik2

    skeptik2 Member

    Million of us...and 38 signed up for the most important even in 25 years?


  4. QuayMan

    QuayMan Member

    Hi skeptik2,

    Yes, I agree, disappointing response. Phoenix Rising goes out to thousands.

    Anyway fingers crossed interesting discussions will happen here and on the other forums such as the one highlighted.

    Cort says that it could be useful strategically to have good numbers on the forum he set up as this can then be said to other groups e.g. IACFS/ME (a group for professionals), to show the patients are interested and motivated by the issue. At least, that's my recollection of what he said. People can be anonymous on that forum also.

    Anyway I hope the CDC don't get away with their plans with their very dodgy research definition.
    [This Message was Edited on 09/20/2009]
  5. skeptik2

    skeptik2 Member

    great to hear from you again.

    did you get the ME Circle article today about the so-called international cfs research

    this is a group the CDC says they have put together; the names are endless, many
    we've never heard of...and they are definitely spreading the psychosocial drama
    around the world.

    I add my two cents worth at cort's site, but it's the same two cents I haven't spent
    yet, re: either a Congressional Inquiry or a lawsuit.

    Time is aflying, and we aren't.

    so sad

  6. stschn

    stschn New Member

    And I would love to know who the researchers are that will be there.
  7. AuntTammie

    AuntTammie New Member

    I signed up and it said somewhere that the forum associated with Phoenix Rising is really new, so I was wondering if that's why the number is so low.....but you are rt that many people do read the newsletter and blog, so I would hope that more would sign up
  8. QuayMan

    QuayMan Member


    Saw that message about the International Study Group - sounds like it's rigged.

    Hopefully something will happen at the CFSAC meeting. I get the impression the IACFS/ME might make a stand.

    If everyone takes a stand and everything still looks bad, then more radical actions may be required like the ones you suggest. We'd probably be asked to go through the right channels first anyway - so if it can be said that the CDC isn't budging and is wasting millions of dollars a year, perhaps a Congressional Inquiry might then be possible????

    Perhaps the old GAO report saying the CDC have "acted badly" in the area before could be used in some way.
  9. skeptik2

    skeptik2 Member

    We have only until Oct 14 to call/write Dr.Wanda Jones at CFSAC to sign
    up for telephone testimony...and there are only 1-1/2 hrs of patient speeches
    allow in two days time! A written copy of your remarks must also be sent in,
    even if making the remarks on the phone!

    Oct. 15 is the deadline for ALL remarks, telephone or written only, or if
    making the remarks in person.

    Dr. Jones' phone number is (202) 690-7650.

    The Agenda is not yet posted, but everybody, keep checking it out at and let us know as soon as you see it.

    I'm hoping the WPI, Judy Mikovits, the IACFS people will be there in force!

    oh, one must have a photo ID to attend meeting personally, at:

    200 Independence Ave SW, Wash., DC, Room 800

    it will be videocast, so get your computers ready...go there now and dowload
    whatever is required (Real Player?)

    As I posted on Cort's MAD thread, we must be ready to be flexible, as
    hard as that is, in order to reinforce whatever the WPI, IACFS, clinicians
    (Cort says Dr. Bell will be there), scientists, etc., say. They know what
    they are talking about.

    This is only chance in last 25 years to impose our will on the CDC. They
    have sat back, listened to us, and done nothing meaningful. They have
    done this knowingly and willfully. They are protecting the insurance
    companies for some wierd reason.

    Cort hopes Reeves boss(es) are going to be there; will they? WATCH
    for the AGENDA I mentioned above, and let us know...the CDCs site says
    they 'got over 1000 emails/letters leading up to and after the last meeting
    in May...let us pray we got thru to them!

    October is gaining on us so fast; please everyone, let's make this our
    priority here on the board again.

    Plus, does anyone know if PH is going to be there?


  10. QuayMan

    QuayMan Member

    (Cort Johnson posted on Co-Cure)

    Subject: CDC Grows MORE Isolated

    It's seems that the CDC has figured this disease out. How else to explain their absence at
    the 3-day CAA/NIH sponsored brainstorming session recently held at Cold Harbor ("From
    Infection to Neurometabolism: a Nexus for CFS"). Thirty researchers from across
    the US and Canada were there but not one showed up from the biggest CFS team- not one.

    This wasn't how it was supposed to be....

    Check it out in 'CDC Grows More Isolated' from 'Bringing the Heat' - A blog
    from Phoenix Rising.

    The HHV6 Foundation organised a symposium on CFS and viruses in 2008 - there were lots of CFS researchers at that but the CDC CFS group didn't send a delegation either.
  11. skeptik2

    skeptik2 Member

    ...might be the end of us.

    this was all the way on page 3!

  12. TeaBisqit

    TeaBisqit Member

    I don't understand how they can continually get away with lumping us with people who just have depression. After all these years, we have real biomedical abnormalities that show up in bloodwork. People with depression do not. A depressed person doesn't get all the horrors we get. Thyroid problems, stomach problems, gland and liver problems, endocrine problems. The list just goes on and on. Depressed people tend to be healthy people who just don't want to do anything. We are the opposite. We are dying to do stuff, we are just too physically ill to do them.

    It's just so unfair that after all these years and years, nothing has really changed. They are still trying desperately to cover up the fact that there is an infectious disease out there. Why are they not afraid of getting it? Why are they not afraid that their families will get it? What exactly do they know about the transmission of CFIDS/ME that they are not saying?
  13. QuayMan

    QuayMan Member

    Good points, TeaBisqit.

    It could be partly because doctors see a lot of suffering in their jobs so take illnesses less personally. And when you get to the age of Bill Reeves and James Jones, they've seen an awful lot of suffering perhaps making them apathetic? That's one possible reason.
  14. skeptik2

    skeptik2 Member

    I don't think they are apathetic; I think they are willfully denying us healthcare
    (real diagnoses, tests, and treatment).

    Reeves and Jones are building themselves future careers in Phychology.

    I believe they have harmed us, both mentally and physically, with their
    ineptitude and willful dilution of the 'definition' of CFS. They know what
    it really is...they are insurance company shills.

    They have seen suffering? What patients did they ever treat? How many
    histories have they gone over with patients?

    No, as John Anderson has so eloquently put it here before, they have
    denied us our human rights, our civil rights and our health.

    Search John Anderson above: his statement(s) are a legal case just
    waiting to happen.

  15. QuayMan

    QuayMan Member

    The reference to suffering wasn't CFS-specific. Dr Jones only joined the CDC team in the last 10 years - before that he was seeing patients for decades presumably. I presume Reeves has worked as a "normal" doctor for at least some years in his life. It was just a general observation I have of doctors - they don't tend to be as moved by suffering by itself as most other people in society.
    [This Message was Edited on 09/25/2009]
  16. AuntTammie

    AuntTammie New Member

    I understand what you mean about drs and seeing too much suffering, but in this case, I really don't think that's it at all.....I think it is purely money and politics..... ignoring the proof that this illness is not psychological has nothing to do with caring or lack thereof, or burnout or anything along those lines - there is another agenda going on & I really think that the things I already mentioned are the two primary motivators
  17. spacee

    spacee Member

    We managed to get Dr. Steven Strauss of the NIH thrown out but we have never managed to do anything with the CDC.
    They are "carrying on" the psycho part Strauss started.

    There was a NIH Twin Study funded by the NIH. I participated.
    Dr. Strauss thought he had Dr. Dedra Buchwald in his pocket and appointed her over the study. It was so flawed with "psycho" questions that were worded in such a way that the only way to answer them was to admit to a "fear" of exercise, etc. Yet, when the labs test came in (which don't lie), it changed Dr. Buchwald's mind. Do we ever hear from her again? No.

    This is just a horrible, horrible thing. They have so much money "invested" in their decision made years ago, I think they would be too embarrassed to admit the truth.

    I am not surprised at the lack of response. People are either using all their energy to work, care for family or just plain too sick.

    Very bad and very sad.

  18. skeptik2

    skeptik2 Member


    No matter we are few; hope that Judy Mikovits and the WPI will be
    at the October conference!

    Hope that the IACFS/ME will be there too.

    Hope that they are fighting mad at the continuing deception, denial
    of our human right to appropriate and relevant research, testing, and


    Live on it, in it, through it...
  19. skeptik2

    skeptik2 Member

    will be at the next CFSAC meeting??????

    Does anyone have a contact at either place that can be asked?

    I'm dying of suspense: also dreading our future if they are NOT
    there to represent REAL research, not what the NIH or CDC
    does for CFIDS/CFS/ME patients!

    Help needed!!! Does ANYONE have a contact? Get back to us
    ASAP, please....

  20. QuayMan

    QuayMan Member

    (From Co-Cure)


    The Chronic Fatigue Syndrome Advisory Committee (CFSAC) of the Department of Health and Human Services, Office of the Secretary Office of Public Health and Science, U.S., will hold a meeting October 29, 2009, in Washington where the public is invited to participate and/or submit printed material for the meeting. Submissions can be five typed pages or less.

    People from outside the US can give written submissions to the CFSAC meeting.

    These are copied to the members of the CFSAC in advance of the meeting and are also placed on the website (one can say one doesn't want to do the latter as far as I know).

    The details are in this:

    Basically submissions have to be sent to:


    PDF version:

    Word version (will later be removed later):


    = ME-föreningen:
    = ME-information: