Phoenix Rising: The Gift That Keeps on Giving All Year Long
This holiday season Jody Smith turns her eyes to the people of Phoenix Rising and gives thanks for you all ...
Discuss the article on the Forums.

"By J. Burmeister: Keep an Eye on Your Walitt: NIH Study Poses Dramatic Risk to Long-Term Disability

Discussion in 'Action Alerts and Advocacy' started by annunziata, Mar 21, 2016.

  1. annunziata

    annunziata Senior Member

    Messages:
    113
    Likes:
    14
    Hudson Valley
  2. Snowdrop

    Snowdrop Rebel without a biscuit

    Messages:
    2,896
    Likes:
    10,092
    Just my opinion--but it looks like there are political reasons why they might not be able to pry Walitt loose from this study. Not unusual from a large institution.

    So after two gatekeeper pre-selection groups whomever Walitt chooses after that shouldn't be a problem for the study since virtually all potential participants should by the second selection be viable candidates no?
    Unless there is some concern for the people doing the pre screening. Making the third round choice seems to me moot.
     
    BurnA likes this.
  3. duncan

    duncan Senior Member

    Messages:
    2,039
    Likes:
    4,475
    The first two legs of the admissions triad are rife with opportunities to slip non-ME/CFS candidates into the study. It's not just Walitt and Friends.
     
    leela, Nina, Valentijn and 3 others like this.
  4. Karena

    Karena

    Messages:
    18
    Likes:
    119
    Has anyone offered a good reason for Walitt's selection? From my point-of-view, he should be the last person involved in a study this important.
     
    mango, Keela Too, leela and 3 others like this.
  5. Comet

    Comet I'm Not Imaginary

    Messages:
    677
    Likes:
    3,627
    Because the NIH views him as an expert. :eek:
     
    Valentijn, leela, jamie and 1 other person like this.
  6. jimells

    jimells Senior Member

    Messages:
    2,001
    Likes:
    6,115
    northern Maine
    How about this:

     
  7. Karena

    Karena

    Messages:
    18
    Likes:
    119
    I asked for a good reason! But I like the explanations offered by Comet and jimelis.
     
  8. alex3619

    alex3619 Senior Member

    Messages:
    12,528
    Likes:
    35,244
    Logan, Queensland, Australia
    I do not know, for sure, that there will any any issues at all by participation of people like Walitt. This is, as the article says, about risk. Not certainty.

    The other issue, which I discussed elsewhere, goes to credibility. Its not just risk to us, but to NIH reputation with us.

    The NIH study has incredible potential value ... or benefits. It also has risks.

    As pointed out, and this happens with PACE for example, even if the authors acknowledge that the studies do not prove any psychiatric issues, and in particular causation, and may be about purely physical disease, how things are worded can be used by third parties to make very different interpretations and claims. That includes the insurance industry. Given the way that language is used in a highly distorted fashion with respect to PACE, its no wonder we are sensitive to similar language used by people in the NIH.

    After thirty two years of highly political history involved in ME and CFS in the US, you would think that some in the NIH had a good idea as to how political these issues are. It appears not.

    Keeping politics out of science is a good thing. However this means keeping political controversies away from the issue. Not entrenching them.
     
    Johannawj, Nina, leela and 9 others like this.
  9. Forbin

    Forbin Senior Member

    Messages:
    960
    Likes:
    4,027
    Reminds me of Jesse Jackson's famous quote about press bias when he ran for president in 1984.

    He said that even if he walked on water, the next day the headline would be "Jesse Can't Swim."
     
    sue la-la, L'engle, Mary and 5 others like this.
  10. jimells

    jimells Senior Member

    Messages:
    2,001
    Likes:
    6,115
    northern Maine
    Just in case some folks aren't aware of the insurance industry connection:

    http://phoenixrising.me/interviews-3/10317-2
     
    Hip, Wildcat, leela and 4 others like this.
  11. duncan

    duncan Senior Member

    Messages:
    2,039
    Likes:
    4,475
    "Everybody knows the dice are loaded
    Everybody rolls with their fingers crossed
    Everybody knows that the war is over
    Everybody knows the good guys lost
    Everybody knows the fight was fixed
    The poor stay poor, the rich get rich"

    (A nod to Leonard Cohen)
     
    catly, valentinelynx, jimells and 8 others like this.
  12. jamie

    jamie

    Messages:
    47
    Likes:
    231
    Yes NIH made it sound like that, but it looks like they have with slick wording on multiple occasions tricked us into a false sense of security again.

    The wording below makes us think that our experts will be involved (and they probably will submit some patients even most patients for the initial pool) but look at the wording and the experts they are talking about are Walitt Gill and Saligan who all have psychosomatic or CBT/Pace problems.

    There are 6 of these guys in total as researched in a previous thread. Unger and the CDC will play a big role and using the Reeves list of questions seems to be back in play. Lipkin is not a clinician. So I don't feel like we have any for sure gatekeepers as of now. More like an introduction to the new NIH ME/CFS "Expert" clinicians for a new generation. If we don't get them out now I don'r think we ever will. Should be fun.

    [​IMG]
     
    Zombie_Lurker, jimells and Karena like this.
  13. lnester7

    lnester7 Seven

    Messages:
    2,452
    Likes:
    3,554
    USA
    1)Some things I think is try to look for monetary connection from the plp and insurance or any related companies
    2) find a way to fool prove the candidates.
    3) make sure we will analyze the data independently as a community if we do not agree w results. We will not acept crap laying down.
    4) we need to infiltrate or find allies inside. Lol long shot but had to mention it.
     
    Karena likes this.
  14. Dolphin

    Dolphin Senior Member

    Messages:
    10,681
    Likes:
    28,209
    I thought I would throw out another viewpoint.

    There are hundreds of studies that have found physical abnormalities so I am not so concerned as some seem to be about a single noninterventional study.

    I'm also concerned that too much opposition could affect momentum and interest from the NIH.

    I think it's quite possible we could get quite a bit more e.g. $5 million more per year from the NIH going forward: over 10 years that would be $50 million - that is a huge amount of money relative to the amount of money that historically has been raised privately for the condition (although we have seen some substantial individual donations in recent years).

    So I'm concerned that too much opposition about something like this could affect such momentum.
     
    Marco, Sidereal, Webdog and 6 others like this.
  15. green_monster

    green_monster

    Messages:
    36
    Likes:
    165
    Looking at the list of people involved in the NIH study, Ian Lipkin should be a good antidote to the likes of Walitt.

    Lipkin has said on numerous occasions, quite clearly, that he believes ME to be a biological disease, and not psychiatric.

    Ian is definitely interested in finding biological answers. He spent $200,000 of his own personal savings on a ME research study looking for such biological answers. I think that speaks volumes about his commitment. Lots of researchers say they are really committed to finding answers about a disease, but their commitment usually stops short of spending heaps of their own money on it.

    Maybe he personally doesn't see ME patients in clinical practice, but the patients he has studied in his research are patients of Dr Montoya, Klimas, Peterson, etc., so that kind of hints at what he thinks a genuine ME patient should look like. Hopefully that will carry over into this NIH study and he will use his influence to ensure the right patients are selected.

    He holds a senior position in this study alongside Elizabeth Unger, so he does have influence, and I'll be really surprised if he doesn't use it in a good way.

    I think it's important not to throw the baby out with the bath water. Whilst there are the serious Walitt-type problems I think it's important to recognize that people like Ian Lipkin really do "get it" and really are fighting for us. I'm not happy about certain aspects of this study but I'd be very worried if Lipkin wasn't involved. A strong, committed, experienced voice like his will mean the Walitt's don't have things all their own way. It will be interesting to see how things turn out.
     
    Sidereal, Webdog, Comet and 7 others like this.
  16. alex3619

    alex3619 Senior Member

    Messages:
    12,528
    Likes:
    35,244
    Logan, Queensland, Australia
    Risk does work both ways. We have risk in opposing or supporting the study.

    Personally I am in overall support of the study, but aware of the pitfalls. I think we might need to comment on the report before its final release. I think we may need to comment on things from time to time. This does not mean we should oppose the study. Criticism is different from opposition.

    Things improved a lot when functional movement disorder was removed as a comparison group.

    As always we need to consider a change in direction when new information is available.

    A lot depends on the skills and integrity of those doing the study. Even a flawed design, with some flawed expert opinions, can be OK if the rest of the researchers can deal with it. We saw that in the IOM report .. it was a flawed process, with serious limitations, but it kind of worked out well. People can compensate for flaws in the process.
     
  17. Kati

    Kati Patient in training

    Messages:
    5,466
    Likes:
    19,595
    I think patients expressing concerns in potential pittfalls and bias is a good thing. Patient voice needs to be included in order to yield the best possible results, and use of ressources.
     
    actup, Karena, BurnA and 3 others like this.
  18. Snow Leopard

    Snow Leopard Hibernating

    Messages:
    4,615
    Likes:
    12,454
    South Australia
    I agree. Those who are saying 'stop, don't do the study' could cause problems in the big picture. (Rather than saying 'we have deep concerns about Wallitt (or others) biasing the study')
     
    Last edited: Mar 22, 2016
  19. leela

    leela Slow But Hopeful

    Messages:
    3,222
    Likes:
    7,233
    Couchland, USA
    There has been such concern about Walitt and Gill (rightly so) that we seem to have forgotten that Unger has a history of throwing us under the bus.
    This is concerning as well.
     
    actup, duncan, Wildcat and 3 others like this.
  20. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,824
    I think they may have tried to bring in everyone from the NIH that has ever published about CFS or even mentioned CFS in a publication. If so, this was obviously a bad way to recruit people, given their history in handling the disease.
     
    catly, leela, LiveAgain and 6 others like this.

See more popular forum discussions.

Share This Page