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Kenneth Friedman tells about Rituximab Think Tank meeting

Discussion in 'Rituximab: News and Research' started by usedtobeperkytina, Apr 4, 2012.

  1. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Clay, Alabama
  2. Wally

    Wally Senior Member

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    Thank you for posting this interview. About 2/3 of the way into the interview (I did not see a time marker on the audio play of the interview), Dr. Friedman discusses an invitation only "think tank" meeting regarding the Norwegian Rituxan CFS study that is in the planning stages for June of this year in New York City. One of the purposes of the "think tank" is to explore potential aspects of immune suppression in CFS/ME. Anyone interested in transcribing this interview?
     
  3. Ember

    Ember Senior Member

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    I wish that Dr. Friedman would properly acknowledge the effect that case definitions have on research outcomes. He claims that the research will take care of the name, but he ignores the effect that case definitions will have on the research results. (When we understand the disease better, he says, the name will change by itself.) In his final statement, Dr. Friedman advises the patient community to support the organizations that are trying to move the research and treatment forward for chronic fatigue syndrome and suggests that advocating for the use of better case definitions could be counter-productive at this particular juncture.

    Dr. Friedman fails to understand the case definitions he discusses. To my mind, there is simply no excuse for his earlier statement that Fukuda is a much more restrictive case definition than either the Canadian or the International case definition and is therefore one that is apt to get results that are clearly defined:

     
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  4. Snow Leopard

    Snow Leopard Senior Member

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    Ember - have you tried discussing this with Dr Friedman? His views might have changed somewhat since October (I haven't listened to the interview yet, so I might be wrong).
     
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  5. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Thanks for posting, will try to listen some time.

    GG
     
  6. Persimmon

    Persimmon Senior Member

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    Following are Dr Friedman's comments pertaining to Rituximab.

    In response to the question Is CFS an autoimmune disease?
    what is this new research and where is it going. Wheres the hope on the horizon, Dr Friedman replied:

    There was a study done in Norway, and this was a serendipitous finding. Cancer patients were given this drug, which was an immune suppressant drug called Rituximab, and it turns out that some of these patients had Chronic Fatigue Syndrome; and it turns out that when these cancer patients who also had Chronic Fatigue Syndrome were given Rituximab, that the symptoms of Chronic Fatigue Syndrome abated. So then in the second phase, these researchers decided that they would try giving Rituximab just to some Chronic Fatigue Syndrome patients; and as they found out in their initial study, was that the symptoms abated. So because this is an immunosuppressant drug, then the logical conclusion is that Rituximab may be working as an immunosuppressant in Chronic Fatigue Syndrome and by so doing is relieving the symptoms.



    Interviewer: So Rituximab induces depletion of B-cells and has shown efficacy in antibody mediated autoimmune disorders. So is this sort of leading to CFS being autoimmune disorder?

    Friedman: It implies it but it is not direct evidence.

    Interviewer: So thats all we have. I mean, how many 17 million people everybody just sort of shakes their head where are you today on getting this issue in front of the Government and the health agencies

    Friedman: I dont know where the Government is. Ive been surprised at the lack of response of the Government, but I know that there are researchers, both in Norway and in the United States, that think that this is a very promising albeit serendipitous finding; and I know that there is a meeting being planned, based upon this Rituximab study or based upon the impetus of this Rituximab study to explore potential aspects of immune suppression in Chronic Fatigue Syndrome; and this is going to be a think tank kind of meeting, by invitation only, thats going to be held in New York City. I believe the projected date is in June of 2012(interruption by interviewer) and I am confident that there will be a paper coming out of that meeting indicating what the thoughts are of the participants in that meeting as to future directions of research; and hopefully that will serve as an impetus to the Government to get involved, because as of now, Im not aware of even an acknowledgement of the importance of this study from the National Institutes of Health or from the Centres For Disease Control.
     
  7. Ember

    Ember Senior Member

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    Unfortunately, I have no reason to believe that Dr. Friedman has changed his views since October. He now advises patients to wait on the CDC's initiative for change.

    Neither Fukuda nor the CCC were new to Dr. Friedman or to anyone else in the field when he made his October comments. The CCC had long been used to identify patients with ME/CFS, not with Chronic Fatigue Syndrome (the names and the case definitions being inextricably linked). And nobody who has read the various case definitions can take seriously Dr. Friedman's statement about the relatively restrictive nature of Fukuda.

    I've expressed my concerns on this forum before regarding Dr. Friedman's statements (http://forums.phoenixrising.me/show...-on-the-Ottowa-Conference&p=212224#post212224). But I don't think that it's for me to take up his public statements with him personally.

    Dr. Friedman serves on the Board of Directors for PANDORA, one of the Coalition4ME/CFS members, along with Phoenix Rising. The Coalition commits to:
    So far, the CAA persists in modifying Fukuda for their SolveCFS BioBank, and the IACFS/ME, for which Dr. Friedman serves as Treasurer, fails to acknowledge the ME-ICC case definition. Happily though, the Norwegians won't be of Dr. Friedman's persuasion when it comes to designing their Rituximab studies.
     
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  8. Snow Leopard

    Snow Leopard Senior Member

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    How do you expect for him to reconsider his views if no one brings it up? He might be receptive if it is brought up tactfully.
     
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  9. Desdinova

    Desdinova Senior Member

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    Is he saying or referring to some program (for ME/CFS) the CDC is calling, giving the title "initiative for change"? If that's not it then surely he's not saying we should wait for the CDC to find the desire, drive or motivation to inspire an "initiative for change". The CDC has only responded when driven by others to do so and most of us know the history of the CDC's initiatives involving ME/CFS.
     
  10. Ember

    Ember Senior Member

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    I didn't mean to confuse you, Desdinova. Here's Dr. Friedman's advice as to how we should proceed:

     
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  11. Ember

    Ember Senior Member

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    Happily, your post was well-liked. Anyone with the necessary contact information and tact should feel free to follow up.
     
  12. serendipitycat

    serendipitycat

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    Any news from this think tank meeting yet? Trying to catch up on stuff, but can't find anything on this.
     
  13. snowathlete

    snowathlete

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    you have to pick your battles, and maybe Dr F just doesnt think that pushing for a name change is going to work out, and his energy would be better spent elsewhere. He is right in that discovering the cause(s) of the illness will in itself trigger a name-change to occur, and is probably the most likely time it will change. Once its known to be caused by a specific pathogen or whatever, it ceases to be a syndrome and becomes X disease, or whatever.

    Im not saying that i am against a name change by the way, far from it, and probably Dr F isnt either, but I still think this might be what he means.
     
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  14. Ember

    Ember Senior Member

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    Dr. Friedman's distressing comments aren't about changing the name but about the nature and use of case definitions. He claims, “Fukuda et al....is much more restrictive a case definition than one would like to see used on patients....so therefore for research purposes you are apt to get results that are clearly defined.” But this statement by Dr. Friedman is false.

    Dr. Friedman goes on to make another false statement, claiming that the CCC and ICC are more relaxed definitions:
    Again, Dr. Friedman's statement is false.

    Dr. Friedman urges patients “to support the organizations that are trying to move the research and treatment forward for chronic fatigue syndrome...” But he misleads patients by failing to acknowledge that the effectiveness of this research will be determined, in part, by researchers' using cohorts that are more tightly defined than the one selected by Fukuda et al. All CFS definitions, including Fukuda (1994), are more relaxed than ME definitions, such as the CCC and ICC.

    Dr. Friedman should know these basics about case definitions. That he doesn't is shocking.
     
  15. ukxmrv

    ukxmrv Senior Member

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    There was a comment on Facebook by the Norweigen writer Jorgen Jelstad about the meeting but it was brief and there was no real news. More of a watch this space sort of comment that's all I think.
     
  16. MishMash

    MishMash *****

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    We are definitely gluttons for punishment. CFS must create a masochistic personality disorder. Our worst enemy, the CDC, is crippling our efforts to move forward with RTX testing over this senseless "definition" issue. And we are playing right into their hands.

    Any RTX study, if it is ever to be respected by the real scientific community, is going to have to be based on patients with reported symptoms, plus quantifiable, empirical data. Forget fukuda, canadian, all that. That water has been been hopelessly muddied.

    My idea of a good study: The strongest immunologist studying this issue now (Dr. Klimas) needs to pick out twenty of her patients who have 1) three of the primary reported CFS symptoms, 2) overactive inflammatory cytokines IL-6 and TNF-a, and 3) and at least two obviously reactivated viruses.

    Give these patients two years of RTX infusions (total of four, what a lupus, or a RA patient would normally get). Or perhaps more doses, if funding allows.

    Do testing on all the imperical categories mentioned above. Also do questionnaires on self-reported improvements. If there is a breakthrough, and the Norwegian results are replicated, then RTX can be prescribed for all CFS patients, even those who don't necessarily have the high cytokines or reactivated viruses.

    I'm not sure why we stay wrapped around the axle over definition, name, etc etc.
     
  17. Ember

    Ember Senior Member

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    The case definitions drive the research, and you've simply proposed another one. This was Dr. Lipkin's solution for the XMRV study:

    As a starting point, everyone had to agree on how to define a CFS patient for the purposes of the study. The issue has been highly contentious and Lipkin says they tried to agree to criteria for patient selection that "includes everyone's viewpoints."​

    The solution: the study will seek to enroll people who in addition to meeting criteria for two widely used, symptom-based definitions of CFS, showed signs of infection such as a sore throat or tender lymph nodes around the time they developed CFS. The thought is that if there is a viral link to CFS, its most likely to show up in those patients.​

    And here's Drs. Mella and Fluge's solution:
     

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