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Time for the Big Talk, II. Expectations and consequences.

Discussion in 'Action Alerts and Advocacy' started by hvs, Dec 31, 2009.

  1. hvs

    hvs Senior Member

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    Dear fellow patients,

    It certainly was pleasing to see my “Time for the Big Talk. How's the CAA doing?” thread receive a lot of attention and really take off. It was inspired by what I perceived in late October to be serious strategic missteps by the CFIDS Association. My premise was that in the early days and weeks after the Science publication the Association was flat-footed to say the least. Indeed, in their communications in a number of media they inadvertently echoed those who dismissed the work of the WPI and argued that the editors and peer reviewers of Science were unintelligent.

    The thread was not a call for the replacement of the CAA’s leadership, but rather a suggestion for a debate. That debate happened and I think that I was productive. It might have played some role in encouraging closer scrutiny of an Association which--whether we support it or not--has the power to do our families and us good or harm. (Among other things, the readers of these fora have given close scrutiny to the literature from the CAA’s doctor education program since then. And many here have found that those documents leave much to be desired.)

    But with this thread I would like to look to the weeks and months ahead.

    I would like to lay down my expectations of the CFIDS Association on the eve of the release of XMRV/CFS replication studies. I want to establish a gauge against which their performance can be measured for two main reasons. First, I want to be constructive. I want the Association to hear my and others’ expectations so they can try to meet them. Second, I want to establish my (and others’) expectations so that in the case of failure my censure, demands for correction, and expectations for change in the institution cannot be characterized as “kneejerk.”

    My expectations are premised on my belief that the earliest attempts to replicate the WPI’s finding will fail. I expect that for several reasons. As Dr. Bell has warned, the earliest testers are likely to be rushed and will not have used the Cleveland Clinic’s methods and machinery and care. Also, the earliest attempts will not employ well-established CFS patients as subjects. Those should only come from our world-class CFS practitioners like Peterson, Klimas, Lerner, Levine, etc. Finally, there are institutions in the US and UK who have “dumbed-down” the definition of CFS to include people who do not qualify as CFS sufferers according to the most experienced, rigorous practitioners in the field. If replication studies come out of those institutions and employ their “dumbed-down” subject criteria to any significant extent, those studies will be failures.

    These failed replication studies, even if they are later outnumbered by successful replications, will be very damaging to progress against this disease. They will reinforce the overwhelming sense among the physician community that CFS is a wishy-washy mind-body “illness experience”; they will cost some large amount of grant dollars; they will damage the credibility of the WPI, which is blazing this new trail. Newspapers will be filled with poorly-written stories that will appear to “take back” the news of the XMRV breakthrough; readers will only perceive that some important-sounding institution demolished the CFS breakthrough.

    Now, granting that the CFIDS Association is a small, modestly-funded organization, there is much they can do to counter bogus replication studies. [Note that I don’t want them to counter legitimate studies: if there are any that are as incredibly strenuously vetted as Science’s WPI/NIH/Cleveland Clinic paper and show that xmrv was a red herring, by all means, we’ll move on and continue our search.] The CAA is led by a executive who make $177,000 a year. She is no amateur. They have an annual revenue of $1.58 million. They have a staff of 8 and a board of 14 volunteers. They can and must be ready to respond to a bogus replication failures within minutes. They have had months, and presumably have weeks still.

    Here’s what they can do:

    Have 3-4 versions of a press release ready to fax to the chief newspaper in every state.

    1) There’s a press release for a successful replication study; it heralds the work of the WPI and says it’s time to move towards finding treatments.
    2-3) There’s a press release for a replications that find xmrv in around 20% of tested subjects and one for 50%. They point out that 20% is still a far, far higher rate than the 3% rate in the general population. They call for scrutiny of the test subjects and scrutiny of testing methods. The press releases says that these findings call for only a greater effort to enhance testing techniques and standardizing the subject pool (Canadian Consensus or Fukuda). “It’s time to do more studies; we’re really on to something here; yadda yadda.”
    4) Finally, there’s a press release for the total failure to replicate. If the study is as rigorously peer reviewed as the Science paper (an outcome that I find hard ot imagine, but which is possible), this story’s over.

    If, as I suspect, a failed replication study is based on a subject pool of Reeves Disease sufferers or is based on shoddy technology or methodology or work, then the press release must absolutely nail those factors. The language is not at all wishy-washy. The press release doesn’t pull any punches for the sake of preserving any relationships with any institutions. It picks apart poor methods, premises, science. --This press release is the hardest to write in advance. But it could be written today in very general language. The day some lab announces a bogus replication study the CAA could place emergency phones call to a scientific contact for help characterizing why the study is flawed. The press release is then filled in with detail. The press release cites the incredible rigor with which the WPI’s Science paper was vetted and compares that vetting to the review given the bogus replication study. It states that the institution’s apparent prestige has nothing to do with the quality of the replication study. It ends by demanding further replication attempts employing legitimate standards.

    In addition to press releases, Ms. McCleary is prepared--on the day of the release of any replication study--to work the phones. She calls any news organization willing to listen with talking points from 1-4 above. If the outcome is #4, a day or two’s silence will be interpreted as acceptance.
    On the day of the release of any replication study the front page of the cfids.org website is given over to a major statement regarding outcomes 1-4.

    Etc., etc. None of these suggestions are rocket science, merely the acknowledgement of the political importance of the timing and details of the CAA’s response, and the potentially disastrous consequences of failure to respond to a bogus study.

    --If the CAA fails to do these things.--

    Now, if the CAA fails to respond to any outcome 1-4, but especially #4, then our response as a patient community needs to be as grave as the CAA’s failure. We will know how our leadership performs at the most politically sensitive moment for our community for years or decades. Then it will be time to demand that the board vote to replace the CEO and possibly the chief science officer. Such a failure will be a failure of leadership and the CAA’s leadership will need to be held accountable. The CAA board will then begin a national search to replace both officers with the intellect and political savvy demanded to lead an organization working to cure a very political disease.

    Now, if the board will not replace the two main officers, we as a community will need to consider joining or forming a new advocacy group.

    I hope that it doesn’t come to that. It will be a setback for our community to need to reorganize or replace its political wing. But it will be necessary. The CAA, whether each of us is a member or supports it or not, is the visible face of our community. The press and government look to it to play that role. We (and our children and spouses) cannot afford to have ineffectual, slow leadership.
  2. Samuel

    Samuel Bedbound with NO DOCTOR

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    hvs, good post.
  3. Khalyal

    Khalyal Guest

    Hvs

    What an excellent post. You said exactly what is on my mind. We cannot "wait and see" what the outcome of the early replication tests will be before we decide to form a response. The time is now to be working on this.

    Your expectations are mine. I agree with everything you have said here.

    And on another note, thank you for jostling something in my brain that has been niggling at me. Jennie Spotilla said that she was surprised that our perception of the CAA seemed to be that it was much bigger and much more powerful than it really is. That is probably true.

    But it HAS positioned itself as the face of CFS, and so perhaps therefore carries the responsibility to meet our expectations. I'm not sure if the need for another advocacy group isn't already upon us.
  4. Kati

    Kati Patient in training

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    I support HVS

    I think we are all waiting results of replication studies. I think as advocacy group of national/international nature, CAA needs to react promptly to these press releases and support, cheer, defend, promote our cause. It is not only WPI's credibility who is publicly at stake, but also all of us.

    May 2010 be a VERY good year for all of us.
  5. fresh_eyes

    fresh_eyes happy to be here

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    Wonderful, well-thought-out post, hvs. I *really* appreciate you taking the lead and making a clear statement on this.

    One question comes immediately to mind. If the CAA does not agree to do this, shall we try put these press releases together without them, perhaps working with other organizations such as PANDORA?

    Happy new year, fighters of the good fight.

    Power at its best is love implementing the demands of justice. Justice at its best is love correcting everything that stands against love. -- Martin Luther King, Jr.
  6. Cort

    Cort Phoenix Rising Founder

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    That was/is an amazing thread. Who thought it would've grown into second longest active thread in the forums! It showed that whatever patients perception of the CFIDS Association is there is a great deal of interest concerning it - which is is very important.

    That basically sounds like a good approach to me HVS. The most important work will get done in the scientific community. All aspects of this are important but how the scientific community handles a negative result if one comes is the most important one to me. I'm feeling positive about all this simply because there is so much interest and there seem to be so many studies going on. The danger would be if group came out with a negative result and other groups started halting their studies because of that. I don't imagine that that's likely particularly if the studies are in midstream as many of them seem to be.

    There were questions after the DeFreitas studies - hopefully there won't be after all the XMRV studies.
  7. Kati

    Kati Patient in training

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    Fresh Eyes you are raising a good point. CAA is not the only organization that has been our advocates and that has our health to their interest. Perhaps the CDC would like to step up and show that their wind is changing direction??? :rolleyes: (ooops am I opening a can of worms?):eek:



    eta: whatever the CDC says at this point, I don't think anyone would take them seriously...
  8. mvwu

    mvwu Guest

    To HVS, JSpotila, and Fresh Eyes

    HVS, I cant think you enough for this post. If the CAA follows up on your request, it could make the difference in how flawed non-replication studies are perceived by the public not to mention by the medical community, patients families and friends, and patients themselves.

    Jennie Jspotila --until midnight tonight still the Chair of the Board of the CAA -- may I suggest one last task? (I'm sorry - I know you are not well.) Might you consider doing whatever it takes to get an immediate board resolution to act on HVS's suggestions? There isn't much time. At least one replication study, Dr. Lloyd's Dubbo study, is due to report in January, according to Cort's "XMRV buzz."

    Fresh Eyes, Absolutely. We might even consider doing this even if the CAA is willing to follow HVS's lead. Should the Board's response be that the staff is busy with other projects, we could also offer to help them (as you have so generously done before). As far as I am concerned, the more advocacy groups the media hears from, the better for us all.
  9. Samuel

    Samuel Bedbound with NO DOCTOR

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    Yes, the CAA must do the right thing, but we CAN and must also act on our own and with other organizations. I don't like putting our eggs in one basket.

    I had an interesting experience recently. I emailed a bunch of organizations in anglophone countries, requesting what hvs proposes (but not as nicely detailed). Some replied, some didn't :). CAA didn't :/.
  10. Kati

    Kati Patient in training

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    Levi, for the sake of argueing and because I have nothing better to do on this new year's eve, what if CAA becomes a XAND org?
  11. Kati

    Kati Patient in training

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    Competition is good in my books, it makes people work harder and be better at what they do.

    Thanks for the link, first time I visit.
  12. Ronan

    Ronan Senior Member

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    Hi Guys,

    I setup the website mentioned about. I notice some of you from here have already contributed :)

    I have been suffering from ME/CFS for the last 8 years and am a web designer part time so i thought i'd setup the site. Im sure there are many other less internet savvy sufferers who would want to find out all the latest XMRV news so i thought putting it all in one place would help. Im a one man band so any help would be appreciated, im open to content suggestions and the direction the site should go in. The site is already ranking 1st for the search term "XAND" on google.co.uk and google.ie and 2nd on google.com so if we do get the 20-60% replication and XAND is taken up as the new name of the illness the site should do well.
  13. fresh_eyes

    fresh_eyes happy to be here

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    Hi Ronan,
    Thanks very much for coming by! :)Of course there's been a lot of discussion around here about XMRV, and in particular what will happen for those of us who don't (immediately) test positive. There's concern that they will be left in the wastebasket of 'CFS' if the XMRV+ try to distance themselves from 'CFS' (As in, "I don't have that fake disease CFS, I have the real disease XMRV/XAND!") From our extremely informal polls, not everyone is testing positive, including some people who are very ill. I'd hate to see anyone left behind in the CFS ghetto. A number of us are trying to come up with ways to keep that from happening. Do you have any thoughts on that?
    I'd appreciate your input,
    fresh_eyes
  14. hvs

    hvs Senior Member

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    This is some smart, hard-edged thinking, Levi.
  15. fresh_eyes

    fresh_eyes happy to be here

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    I agree completely. But the CAA shows no inclination to launch a campaign highlighting the folly of an automatic "functional somatic" diagnosis for illnesses of unclear etiology, perhaps for the reasons you stated in your earlier post. That's why we need to do it, and get support from other organizations. So let's do it. Levi, do you still want to take the lead on that? (BTW Levi, I posted on the Joint Resolution thread that I think "illnesses of unexplained etiology" might be better terminology than "unexplained illness" - explanation over there.)

    For my part, I'm finally getting it that there are powers that be that actively want CFS to remain in the "functional somatic" wastebasket, and in fact that want to put more diseases in there, even to the point of altering the diagnostic codes to enable adding an additional "functional somatic" diagnosis onto any physical illness. (OK, OK - you're sick. But you're ALSO crazy.) This is all gone into on the DSM-V v. WPO thread, if people are interested.

    Well, surely she's been tested by now. Judging from the fact that WPI stood up to Science, who wanted to remove reference to CFS from the paper (probably for just the reasons you describe), I'd say their interest in 'CFS' has not yet come to an end, and they're not cutting the XMRV- loose any time soon. Which gives us some time.
  16. Marylib

    Marylib Senior Member

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    I would not underestimate Annette Whittemore. She is not interested only in her daughter. She is interested in Neuroimmune Disease. This includes fibromyalgia, possibly autism -- the list goes on. She has my utmost respect, whether I myself turn out to have XAND or not.
  17. starryeyes

    starryeyes Senior Member

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    How can the CAA not be huge and powerful with the amount of money it receives?

    Thank you for another excellent thread-starter HVS.

    I agree that the CAA needs to concentrate on responding to the XMRV testing first and foremost.

    Second, I think they need to be working on the change coming in the DSM... as I understand it, CFS is about to be changed to Mental Illness in the U.S. Is that right?
  18. Robin

    Robin Guest

    Well, they have a $3 million or so budget which sounds like a lot, but in the realm of nonprofits is actually quite modest.

    For comparison the yearly budgets of other nonprofits (approximately):

    Lupus Foundation $10 million
    ALS Foundation (Lou Gehrigs disease) $18 million
    Elizabeth Glaser Pediatric AIDS Foundation $100 million
    American Diabetes Association $225 million
    American Heart Association $644 million
  19. Robin

    Robin Guest

    I got that from Charity Navigator, which shows expenses of $3.4 million, but, they might have the wrong information.
  20. starryeyes

    starryeyes Senior Member

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    Thanks for supplying that info Robin and CF. That is small but way more than all of us can get together, I'm assuming.

    Heck yes!

    Who replied Samual?

    Thank you for that XAND site Levi... very cool Ronan. ::) I love the look of it for starters and plan to get in there and start reading.

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