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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Suzanne Vernon: "Agency heads are scared to death...if XMRV works out"

Discussion in 'Action Alerts and Advocacy' started by CBS, Feb 23, 2011.

  1. Cort

    Cort Phoenix Rising Founder

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    I imagine you can dig up a good amount of dirt on just about any pharmaceutical company....:)..On the other hand, if a breakthrough in treatment is going to happen in CFS - its probably going to come from a drug. I don't know if there's any avoiding them. I count on the good profit motive - a million or so people to buy their new drug for CFS - to carry us there.
  2. eric_s

    eric_s Senior Member

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    But then why, in 20 years, didn't he do enough research to find that virus? Form what we hear he is one of the best. So you have to get him involved. This might be difficult to achieve, ok, but nevertheless it's an example for how little effective advocacy efforts have been until now. 1 million Americans sick, many so sick they are unable to work. Isn't this a good enough argument to get scientists interested?

    Edit: People like Lipkin and Alter must tell that message (1 million heavily affected, looks viral, so far uncontrolled) to the public, parliament, goverment, agencies and fellow researchers again and again until they all have understood. They are respected and i guess many will listen to them. If i look at what the average doctor or person on the street knows about ME/CFS and how little money is spent, this clearly has not been done well enough.
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I understand that the media picks and chooses and often publishes quotes that do not capture the essense of what a person has said. This is a bit of a mitigating factor. But, dealing with the media can be done and almost all patients expect that for their salaries- look at the caa polls. The PACE people released i think 2 or more carefully written comprehensive press releases that put forward their lies and then i don't think they took any reporters' questions after that. That is what CAA should do if they are not expert at controlling an interview. Or they could take emailed questions only.

    AABB did recommend strongly discouraging pwME from donating; but it's not a ban; they will still take blood from pwME after they are discouraged.

    The fact that it says on the CAA website that they were advocating a blood ban doesn't carry any weight with me when the email to the govt says they are 'resisting pressure'. Which one is more likely to be true? The one that is called in the law "the statement against the speaker's interest." If someone says something that incriminates themselves or makes them look really bad, it probably has more truth to it than another contradictory statement they made that claims that they are innocent or makes them look good. So the claim that they were resisting pressure to recommend a ban is much more likely to be true, obviously.

    I don't really have a problem with sarcasm. It is that i have been reprimanded several times for it and you said i should go to another forum and not post at PR if i am sarcastic. you have banned people for being sarcastic. i'm just saying, if you're going to be sarcastic, let others. the rules need to be equally applied to everyone.

    Regarding Vernon: Most of the stuff she has done seems fine or good to me. But those few things that were bad were pretty bad, imo. The main problem I have with her is that I feel she and CAA are putting patients in a bad position; she comes from the enemy camp and has participated in things that have harmed us in the past as part of CDC. If she's going to come over to CAA, as far as I'm concerned, she has to prove her bona fides and she hasn't done that, imo. Otherwise it makes me and most people feel very uneasy that a potential fox has been let in the henhouse.
  4. Cort

    Cort Phoenix Rising Founder

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    It may be that Dr. Lipkin thought it looked viral, smelled viral and walked viral but he never found a virus he thought could explain it. It may be that he doesn't think the herpesviruses are it - and they have been the main pathogens to date.

    When XMRV did show up, though, he did agree to head that very large study and he agreed to put his name in nomination for the CFSAC panel. Just him being on board means alot. He's obviously very busy and respected in the field.

    I don't know why 1 million chronically ill people doesn't interest the NIH. Its the NIH and CDC admins who tie our hands regarding funding who bear the heaviest guilt in my opinion. Its unexplainable to me. Of course FM and interstitial cytisus and these other female dominated difficult to understand diseases are in much the same boat as CFS......
  5. jspotila

    jspotila Senior Member

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    Indeed, Shane, she asked you and Cort to give her the courtesy of not repeating the entire conversation on Phoenix Rising. Her conversation with you was quite lengthy and covered a wide range of topics including your own personal health situation. She was generous with her time and insight, and asked for nothing in return except simple courtesy which you have failed to give her.

    I just spent half an hour excavating my notes and email to see what happened, Shane. I did tell you I would seek clarification, and I can find no record that I closed that loop with you. I apologize for that, and I wish you had pinged me again about it. I believe I told you that I was helping to care for my mother who was in a serious health situation at the time. I was quite honest with you about my own limitations. I forgot to follow up on your question. At any time you could have contacted me and I would have done so.

    Do I sound frustrated? I am pretty $%@#(&^ frustrated. I have been available to you personally, Shane, as well as any other member of PR who has asked for my time. I did this despite my own limitations. There is no conspiracy at the Association. We don't hate CFS patients. We haven't sold our souls to CDC or anyone else. We don't believe every patient should get CBT treatment as a way to solve this illness. What has been said about the Association and its employees and Board members, both here on PR and in other venues, would be laughable if it was not all so damaging to the CFS community.

    What Suzanne said to you, Shane, was that the agency heads are concerned about the patient reaction if XMRV does NOT work out, not if it does. And it seems to me, given the rising tide of venom in the past two weeks, there is likely to be a tsunami of anger directed at just about anyone in the line of fire if XMRV does not work out.

    The key challenges for the CFS community are 1) adequate funding for 2) high quality science into 3) the biological basis of this illness affecting 4) patients with the hallmark symptom of post-exertional malaise (or relapse). This is what I stand for. This is what the Association stands for.
  6. CBS

    CBS Senior Member

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    That is not what I heard.

    As has been discussed at length, the statement wasn't that shocking. Of course agency heads would fear a patient backlash.

    In the context of the crisis of confidence that the CAA is now facing due to their own ineptitude in the advocacy arena, the big picture issue is trust. If this was a one off incident it would be forgotten. The real issue is full transparency. Given your history, nothing will change without it.

    Stop talking behind the backs of and down to patients.
  7. Dr. Yes

    Dr. Yes Shame on You

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    Hi Jennie - If that's really what Dr. Vernon meant, then it doesn't make sense to me at all; the argument seems counterintuitive. Why would agency heads (at the NIH and CDC, I assume?) have anything to fear from patients if XMRV is shown NOT to be associated with CFS? Why would patients be angry? Seems to me they'd be depressed.. and if angry at anyone, it would be at the WPI, correct?

    And the recent 'venom' you speak of is not related to the XMRV association being disproven, but to the perceived attempts by some agencies to bury XMRV research (and, additionally, to continue promoting treatments based on psychosomatic models of CFS). I really don't follow your logic here.
  8. Angela Kennedy

    Angela Kennedy *****

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    Me neither.
  9. SilverbladeTE

    SilverbladeTE Senior Member

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    every week yer guaranteed to see at least one, usually several stories on pharma corp crap and crimes :/ shows how mad our systems are, that they KEEP getting away with it, doh!

    they stand to lose a huge amount of profit, and their protection and thus liberty (no proteciton from criminal prosecutions), if they DID find a cure for ME/CFS...think about it ;)
    Government and the corporations are so tightly linked it's...well...none of them dares upset the apple cart for the other.
    So each is obliged to defend the interests of the other.

    http://www.powerbase.info/index.php/MMR
  10. Crappy

    Crappy Senior Member

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    my 2

    CBS, let me begin by saying I respect the choice you made, and why you made it. You felt you had more of an obligation to us as a group than to individual confidentiality, always a tuff choice. I make no judgment of what you felt you had to do. Just a commentary on the overall climate; composing distracts me from my misery.

    To think anyone is intimidated by us is a fantasy. Our importance to society appears to rank somewhere in the area of the Homeless, and Illegal Immigrants; and if it weren’t for the all effort to portray us as a bunch of lazy, good for nothings; we wouldn’t even rank there.

    It is painfully obvious; no one with any clout cares about our condition or even fears our illness. Hell, I was in denial about my illness until I suffered a catastrophic failure. The bottom line is; only people we pay to care; even take an interest. Even then, as we all know, the going rate seems to be much higher than caring for any other group.

    The anger is palpable with all of us. Chose any thread you want in here, and you will find many messages of disgust and frustration; because we are HURT. No one appreciates being ignored. All mental health professionals consider Neglect a form of Abuse; yet they are happy to Neglect us. When the problem is, in fact, a real problem (and we all know we have a REAL problem) the Abuse is Libelous for any individual or group. You can be arrested if you see someone in need, and not render assistance. Besides it is just considered Decent. We have been held to these standards ourselves. Everyone here has lended assistance to others. We know these standards, yet we are confounded why these standards don’t apply when we are in need. Why is our need less important?

    So we are angry and emotional. We would be abnormal if we weren’t mad. We suffer the injustice daily. (On top of this illness, that’s a lot of suffering.) How many of you though, will stand and listen to someone throwing a fit? Few of us would stand and listen to a stranger in an emotional outburst; and let’s face it, we are pretty strange. (Can’t do this, can’t eat that; up in the night, sleep in the day, and God forbid we should not have our pill packs.)

    In here, our tirades don’t mean much to anyone, unless we are trying to incite violence. But out there, to the World; we need to keep our integrity. I haven’t been a member that long, but I think Cort does well. He struggles against our negative emotions, and I am sure his negative emotions too. Battling the seething rage to try and keep our message sane, rational, and put in a way an outsider might take interest. I understand the rage because I feel it too; but if I go off on my neighbor, he won’t talk to me anymore. As a group we can’t risk that, no one wants to listen to us to begin with.

    Joe Everybody is overwhelmed. Global Warming, the price of gas, why am I being called to a parent teacher conference? People don’t have enough time in the day to care about everything. I would like to bomb bureaucrats too. Then in fleeting moments of lucidity, I think, maybe we should be trying to appeal to people’s sense of decency. What makes me care about people suffering with cancer, why did I feel compelled to help those I have helped? How can that translate to getting help for us? I have done some fundraising for causes with no real significance, and I found people surprisingly willing to help. If the message was right.

    I am familiar with a lot of organizations operating under the ME or CFS moniker. To me, WPI seems to be the most professional. They don’t respond with emotionalism, and they don’t jump at every little article. They seem to be keeping their head down, on point, just doing their work and seeking the truth, I admire who they are so far. The bureaucracies don’t care about us, and some of the ME/CFS organizations exist more for attention and donations than to find what is hurting us. I'm glad a competent, determined organization exists that is in hot pursuit of the truth. They aren’t preying on our desperation either, they seem genuine and professional. I would like to collapse all CFS/ME donations into WPI and just let them go to town. Then I remember how many cul-de-sacs I drove into, convinced this "new" discovery was the "be all, end all," of ME/CFS. Then I realize, hunts go better with more than one hound dog.
  11. alex3619

    alex3619 Senior Member

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    Hi crappy, very well put. Discovering how to reach people is real numbers has been our bane for a very long time. That is why I think many are so strongly committed to XMRV - a retrovirus is scary, and almost guaranteed to get us attention. However, while Joe Public might not care, some institutional representatives could still be worried about censure if it can be shown they made a colossal blunder. Bye, Alex
  12. LaurelW

    LaurelW Senior Member

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    Crappy, yours is one of the most insightful posts I've seen in a long time. Thanks.
  13. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    This is exactly right, imo. That would make absolutely no sense, to me at least.

    The rest of this post appears as my latest blogpost. Please check it out and let me know what you think!

    http://forums.aboutmecfs.org/entry.php?836-Loyalty-to-CAA-not-McCleary

    You claim these criticisms have been quite "damaging to the CFS community." The community speaking it's mind is not damaging to anyone or anything but CAA, and rightly so.

    I agree with CBS, that our issue, and I think the issue for patients in general regarding CAA, is trust. You are entitled to your emotions, obviously, but your serious frustration with patients' questioning CAA seems odd to me. I perceive your tone to patients on PR as usually being that of a corporate spokesperson or lawyer defending a guilty corporate client. Now you act more like a human being with frustration directed at us. That doesn't resonate with me.

    You express serious frustration at the "laughable" things said about CAA and the people involved in it. It's obviously not laughable to me or approximately 94% of the patients that have answered polls here and on mecfsforums.com. Please show us that they are laughable! By 'show' I don't mean that you or Cort should list the accomplishments of CAA again. I have carefully read these numerous posts by Cort and I agree that CAA has helped some good things happen. Please show patients through your actions in response to the requests made of you by patients on PR and elsewhere. That would honestly build trust with me and make me really happy!

    I would really like CAA to gain the trust back of patients. Please do this so we can all move forward together. If not, it will continue to be unpleasant to work for or direct CAA and CAA will eventually implode and patients will be bereft of what is not that much effort away from being a really good org that will do a lot of good for patients and will prosper.

    imo, you have noone to blame but yourselves and certainly not CBS who has stood with you and Vernon much longer than most patients.

    Jennie, I certainly never doubt your dedication and motivation. Your long and distinguished record of helping pwME speaks for itself. You have been more active for much longer than I, for one, have been. You know a lot more about the situation, but fwiw, from my outsider perspective, i urge you to try to look with fresh eyes at the big picture of CAA.

    Couldn't CAA benefit massively by changing direction and leadership? This is axiomatic to me and most patients. As a director, i know you are attempting to meet the legal requirement that you have utmost loyalty to CAA. I think, in this situation, the utmost loyalty to CAA, as opposed to loyalty to Kim McCleary, would dictate that you replace McCleary and change direction. If you do not, CAA will continue on it's downward trajectory and crash. That would clearly not evidence the utmostly loyal stewardship, imo.

    Great leaders abandon missions if they are rendered obsolete or it becomes obvious they are untenable even if those missions were at the heart of the organization for a long time. There are many examples but two are IBM switched from making business machines to consulting on them. Nokia switched from making tires to making cellphones. These are only two of the many orgs that would have stagnated or died if they didn't make a radical change in direction. It is that time for CAA now.

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