Hillary Johnson's speech-Invest in ME conference

Discussion in 'Fibromyalgia Main Forum' started by outofstep, Jun 6, 2009.

  1. outofstep

    outofstep Member

    from her website: http://www.oslersweb.com/blog.htm?post=604271

    Please go to her website and read this-I've removed her speech from my post because of concerns about reposting it without her permission. This speech is so incredibly important though-everyone with ME/CFS should read it in order to understand the politics that have shaped our disease and continue to hinder research progress. This will not change unless we take action and also support those organizations that are trying to make a difference.[This Message was Edited on 06/06/2009]
  2. Spinetti

    Spinetti New Member

    Anyone who wonders why we don't get the recognition or medical treatment we deserve should read it.

    It's long but well worth the effort to get through it.

    Thanks for posting it here, outofstep!
  3. outofstep

    outofstep Member

    So glad that you read it!

    I hope that more people will take the time to read it so that we all understand the politics that we are dealing with and will then be better able to lobby for decent research and care.
  4. QuayMan

    QuayMan Member

    I remember somebody told me they got given out to by Hillary for posting an extract from Osler's Web on Co-Cure.

    Given the fact that she has put copyright, I reckon she probably wants people to read it on her site. So it might be better just to post the link (one can edit the post) or if people are tempted to repost the whole thing elsewhere, be aware Hillary may not be too happy.
  5. cfsgeorge

    cfsgeorge New Member

    But excellent indeed. Hillary reminds me that there are wonderful people still fighting hard for our cause-tooth and nail. And there are still "evil" people trying to do the opposite. why? read and find out.
  6. jasminetee

    jasminetee Member

    Thank you so much for posting this outofstep. I really appreciate it. Hillary is one of the most articulate and knowledgeable journalists we have on our side.

    It would be great if her addy could be made a permanent sticky on this site especially since the Search function no longer works here. The speech she made shows the history of ME/CFS as well as offering solutions for the future.

    Here are some notes I made while reading her speech:

    “ME is a form of acquired immunodeficiency.” ~ Nancy Klimas

    “ME is a “chronic, immunologically mediated inflammatory process of the central nervous system,” ~ Anthony Kamaroff

    Tests on PWCs shows “Proteins in spinal fluid, gray matter withering away, impaired cognition, impaired immunity, viral infection, excessive rates of b-cell lymphomas, cardiac disease—I’ll stop there. We all know how long that list is. “ ~ Hillary Johnson

    So there aren't supposed to be proteins in our spinal fluid? I wasn't aware of that, so I looked it up just now and found that protein in spinal fluid can be an indication of the development of Alzheimer's disease, or Lou Gehrig's Disease, or MS. Of course, ME didn't come up, you'd probably have to put that into the Search Engine but isn't it interesting to see which diseases did come up?

    I've been told that I have protein in my urine. Strangely, only a dermatologist has ever said that to me out of all the countless doctors I've seen. Either it's not always there or they don't know to look for it. I believe that's indicative of kidney problems.

    I had no idea that Congress has mandated that the CDC do prevalence tests of cluster of CFS outbreaks during the '80s and '90s. I guess Congress can mandate all they want but they don't have any way to hold institutions accountable for what they've demanded. I just have to ask, what's the point of having a Congress then? Why do we pay our taxes to them??

    "As regards this disease, the CDC is a political organization that calls what it does science—and gets away with it. " ~ Hillary Johnson

    “Denialist-in-chief, Simon Wessely” ~ Hillary Johnson
    I just love that term!

    “I think the fact that children with M.E. are virtually never discussed by the CDC is powerful evidence of the political nature of their agenda.” ~ Hillary Johnson
    I completely agree with that, and the fact that children get ME/CFS may be our best chance of getting CFS recognized as legitimately physical.

    We need to insist on “hearings, legislation, and public disapprobation”.

    One thing has become very clear to me. We need to get ME/CFS out of the hands of the CDC. Giving more money to the CDC for CFS will only cause more damage to be done to all of us.

    [This Message was Edited on 06/07/2009]
  7. outofstep

    outofstep Member

    teejkay-thanks so much for summarizing! I agree that we need her speech posted permanently on here as a reference.

    For those not familiar w/Hillary Johnson's work, her book "Osler's Web" goes into much more detail about the history of this disease. I wish that when people were diagnosed w/ ME/CFS that they were also handed a copy of the book. We are so lucky that she investigated this, and that she was able to write a book about it despite her own CFS.
  8. jasminetee

    jasminetee Member

    he was quite a paranoid dermatologist I recall. I only saw him twice. He meant well I believe. My urine has never been foamy to my knowledge but I do eat a lot of protein with every meal as I have to because of CFS.

    outofstep, I agree with you. I think Osler's Web is an important book about the history of ME/CFS. I didn't remember or realize that Hillary suffers from it as well. It's fantastic that she's kept her talent for writing. :)
  9. simpsons

    simpsons Member

    I hear what john is saying but think the tide is turning. lots of speaking out here on pro health don't you think?

    CFS Patient Groups Cowed By The CDC?

    Permission to repost

    The only sane and rational response to the evident
    failure of the DHHS, CDC and NIH to respond with any sense of urgency to the
    public health threat of the epidemic disease Myalgic Encephalomyelitis over the
    last 25 years can be found by reading Hillary Johnson’s powerful and forthright
    speech titled “The Why” which was presented at the Invest in M.E. London
    Conference on May 28th 2009. That is how you address the systemic failure
    to address a disease that has destroyed the lives of millions around the globe
    – speaking up truthfully and fearlessly about the undeniable facts. I applaud
    Hillary for telling it like it is!

    I ask all “CFS” patient organizations to read this
    speech again and explain why they have not addressed the incriminating facts in
    their meek testimonies to the CFSAC. Why are they not exposing the elaborate
    web of deceit that ignored the evidence for this epidemic disease, replaced it
    with a phantom creation called CFS, branded it as an unexplained illness,
    restricted research to the genetics of stress, and cast patients as defective,
    inferior human beings? A modern day eugenics program has been revealed in the
    words of Reeves himself, and you have little to say that would radically alter
    this inhumane and unforgivable state of affairs?

    I read your testimonies and see nothing but
    suggestions for tweaking this indefensible program. Remove Reeves - but the CDC
    will find a similar replacement; make available the CDC’s research data since
    1984 - on its phantom creation CFS; request that it abandon its Empirical CFS
    Definition - ignoring the preceding false definitions; collaborate with other
    researchers and organizations - under the CDC’s self-proclaimed supremacy;
    partner with the IACFS/ME - whose conferences still unashamedly promote
    psychosocial research, or the CAA - who benefited financially in the branding
    of CFS; all calling for more of the same research to nowhere.

    Hillary asks if we are more comfortable being
    labelled as mental patients, and from the evidence of these testimonies it
    appears that our so-called charities would rather let the false “CFS” construct
    become more entrenched while millions of dollars are wasted on damaging
    psychosomatic theories and not on urgently needed biomedical research. Not one
    patient group is standing up for the scientific facts that have overwhelmingly
    demonstrated that M.E. is an infectious and inflammatory disease of the central
    nervous system, that this was the disease the CDC redefined as “CFS”, that the
    disease is being transmitted through us and the blood banks without warning to
    the general public, and M.E. patients are dying because of institutionalized medical
    ignorance and neglect.

    Not one group is demanding a Congressional Inquiry
    into the institutionalized denial of Myalgic Encephalomyelitis, demanding that
    the DHHS, CDC and NIH recognise the infectious disease M.E., and for the
    creation of a definition that addresses the neurological, immune, autonomic,
    cardiac and mitochondrial dysfunction together with the known biomarkers of the
    disease, or that the CDC renounce its CFS program and alert the public to this
    pandemic, or pushing for politicians and human rights groups to urgently
    address this evident public health crisis. Not one group will acknowledge that
    M.E. is the crisis! What is the gain to these groups by cowing to the CDC’s
    “CFS” and not standing up for M.E.?

    These groups do not protest against the request forwarded to newly appointed CDC director, Dr. Thomas Friedan, that “CFS activities” be moved from the National Center for Zoonotic, Vector-Borne, and Enteric Diseases at the Chronic Viral Diseases Branch - to the National Center for Chronic Disease Prevention and Promotion, a serious downgrade of priority. Not one group is demanding that the NIH place M.E. at the National Institute for Neurological Disorders and Stroke with a formidable budget - they do not question the CDC’s “CFS” being housed at the Office of Research into Women’s Health, knowing that no neurologist or other specialist will ever hear of the infectious disease Myalgic Encephalomyelitis. Whose side are these groups on?

    Sadly, if all these groups and individuals are
    content to quietly ask the CDC to tweak its “CFS” program then another
    generation will have to fight this battle all over again and those of us beaten
    by this terrible disease will struggle to live out our final days of living
    hell in misery.

    Heroically, the renowned author of 'Osler’s Web' has
    spoken publicly and fearlessly about what we now know were outbreaks of Myalgic
    Encephalomyelitis and not some “new illness” that the CDC allegedly

    Why can’t all patient groups call for truth and justice
    for M.E. sufferers with the same fearless voices?

    Will anyone hear Hillary’s brave and timely call
    for us to be more “radioactive”, before it really is too late?

    John Anderson

  10. stschn

    stschn New Member

    I did sent letters to all of my reps it took me two days. I just could not get the site for either the Poll or for Hillary Johnsons speech. The computor is old and there just are enough $'s to replace it now. If its not on this MB or a hot link I just can't do it and I'm sure I'm not alone.
  11. jasminetee

    jasminetee Member

    I'd love to ACT-UP like the AIDS activists have. If only I had the energy. That's one of our problems.

    Why haven't PWCs and their orgs stood up better and demanded more.... brainfog?

    Why doesn't this guy do it?

    I completely agree with what he is saying but I have no idea how to remedy the situation other then plodding along and trying to pay attention and sending out the letters as much as I can, signing the petitions and answering the polls. Then I'm done-in. Completely. That's the problem.

    [This Message was Edited on 06/10/2009]
  12. skeptik2

    skeptik2 Member

    I wrote john and told him I totally agreed with him. We must find another way!

    Picketing blood banks.

    Forcing a Congressional Inquiry and/or Class Action Lawsuit (which, BTW, I threatened in my speech to the CFSAC; guess John didn't hear the last patient presentation of the day1 videocast, LOL)

    All the petitions to the CDC will not work.

    The letters to Sebelius might; we'll have to see. However, just a change in leadership at the CDC is not the way to go, I'm now sure.

    We need this illness to be at NINDS, for it is a neurological disease. Maybe we must direct our efforts there, instead? I just joined PANDORA's new Advocates Extraordinaire Project, to force the issue for the 5 new WPI sponsored institutes of care for ME patients.

    We must find a way to get through to the President. I feel he may even read Hillary's speech if he got it; and John Anderson's challenge to us, also.

    Let's keep brainstorming here; and invite all you know to help us think!

  13. mezombie

    mezombie Member

    Blast the search engine on this site! I figured this must have been posted here by someone (thanks, OutofStep), but couldn't find it.

    I'm deleting my post and bumping this one.

    I've been without internet for ten days so am playing catch-up!
  14. mezombie

    mezombie Member

    I'm totally in favor of the approach suggested by Hillary and John.

    Here's an idea that might lead to a Congressional inquiry.

    How about contacting the Senate Committee on Health, Education, Labor and Pensions (aka the Senate HELP Committee)?

    This is an issue that fits under the Committee's jurisdiction. Senator Kennedy, while ill, certainly is no shrinking violet. And this committee has a reputation for having a very bright staff.

    There is contact information on their website. The emails go directly to the Committee, not the individual Senators' s offices. And it doesn't matter if you don't have a Senator on the Committee.

  15. skeptik2

    skeptik2 Member

    Thank you so much. See, it takes all of us, all of our brain cells working together, because so much goes in one brain cell and out the other side for many of us, me especially!

    Now, we have to get Hillary's speech to this site; I cannot do it, cannot make "links" with mine.

    I just wrote her and asked her to send it to Obama.

    I will go back and give her this link and ask her to address it to the full committee.

    I really feel we must go to the top with all of this CDC debacle! They are not going to change. No one makes them change; they are not accounting to anyone, and the NIH AND DHHS is not even looking at them to see what they are doing.

    Hugs on top of more hugs,
  16. Khalyal

    Khalyal New Member

    Hillary Johnson did an excellent job, and I congratulate John Anderson for his immediate follow-up and support. I couldn't agree more with what's been said, and am very thankful to see this movement start. I have wondered for a long time exactly who some of these advocacy groups are advocating for.

    I'd like to follow up by posting Kathryn Stephens' testimony at the CFSAC meeting. At the time, I was quite happily surprised to hear it. I've also posted it on Quayman's CFSAC thread.

    Read on..:)
  17. Khalyal

    Khalyal New Member

    Posted with permission - thank you Kathryn!:

    My name is Kathryn Stephens. I come here today with hope, but also with trepidation, because this Committee has been worthless since it's inception.

    I have a List of "WHYs" today:

    WHY has no one questioned the CDCs (erroneous) demographics, which are based on their (equally wrong), research criteria?

    WHY do you and the CDC ignore the Canadian Criteria, and/or the WHO's diagnostic code of 93.3; (REAL CFS, according to the 1994 criteria in the U.S.,, is M.E., a Neurological condition.)

    WHY have so many Committee members (since its inception) been so uninformed, so ignorant of the more than 3500 studies that have shown serious abnormalities in so many PWCS? Why do you exist?

    WHY has the International Association for CFS/ME correctly changed their focus to ME, while you have not? Are you part of the CDC's further denying and obscuring of the reality of CFS? Do you support their "international focus"; (meaning, the UK 'S NICE guidelines?) Are you even aware of those?

    WHY has the CDC slyly been trying to copy the UK 's NICE guidelines, which make this a psychosocial illness, and which proscribe CBT and GET, when so many competent, published studies have shown that most of us are exercise intolerant?

    William Reeves must GO, and NOW, before MORE irreparable, possible malpractice, harm has been done.

    WHY, as a perfect example of how behind the research and understanding of ME/CFS you and your "Related Federal Sites" are,
    is this allowed?:
    The AHRQ website is indicative of the problems inherent in the CDC's hiding the true facts of this terrible disease:

    Their website is dated Sept., 2001!

    (and apologetically makes this)

    STATEMENT: "This evidence report has not been updated within the past five years..." Can you believe this? WHY?

    It goes on to say, "...the validity of one case definition over another is not well established" (and) "... there are NO clear biologic markers...." (and) "NO effective treatments specific to CFS have been identified."

    These nine year old statements are STILL true today. How can that possibly happen? What does the CDC ever investigate that is replicable and valid? What has this Committee accomplished for our sick and dying PWCs?

    The site then have the audacity to

    CONCLUDE: "....although several therapies have been studied, potential benefits, as well as harms, of most...are not well established" (and) "behavioral therapies that emphasize increasing activity levels may improve quality of life and function in some with CFS." Most dedicated researchers know these are damaging statements.

    (The nine studies they reviewed did not have any patients who were too sick to be included, and it was known, EVEN THEN, that it is not FATIGUE that is the problem, but neurological damage and RECOVERY from aerobic activities)

    If "CFS" has no scientific basis, as the CDC claims, WHY should there even be a CFS department at the CDC - which now includes traumatized children, depressives, fatigue from dozens of causes, and only god knows how many other inclusions.

    This current program must go, and Mr. Reeves should be allowed to move on to his new, competing interests at Emory.

    LASTLY, and finally, WHY do I think this comment may be in vain, that you will allow this horrible disease to be a psychosocial illness? Maybe because of past performances of this Committee? Maybe a class action lawsuit or a Congressional Inquiry will help you understand how serious we are about ACTION NOW!

    I will thank you when and if informed and constructive action takes place towards the concerns we (collectively) will have expressed here today and tomorrow.

    We will ALL be thankful then.
  18. AuntTammie

    AuntTammie New Member

    I don't know much about the HELP committee, but it does sound like they might be the ones that we need to get involved. Thanks for the contact info. It would be really great if we could get a standard letter that people could sign and email to them (with a place to add more comments if they want).....similar to what was done so that we could send a letter to the sec of health.....I think that a lot more people will do this than will send their own letters....unfortunately I have no idea how to go about that
  19. AuntTammie

    AuntTammie New Member

    I like your idea about getting Hillary Johnson to send a copy of her speech to the HELP committee, and thank you for sending it to Obama......I think it is essential to find people who have the power to get the CDC to either make drastic changes or to get them to butt out altogether and get the money they are getting sent somewhere productive, but until now I have had no idea who has that power as it seems that the CDC are completely unaccountable to anyone
  20. AuntTammie

    AuntTammie New Member

    thanks for posting Kathyrn Stephen's testimony - it is quite well done.....actually there have been several people who have addressed this stuff very well - if only we could get a written collection of this stuff sent to someone (maybe the HELP committee) who could force the CDC to be accountable or to step down

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