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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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Spring CFSAC 2013 Meeting live streaming starting today - Weds 22 May

Discussion in 'General ME/CFS News' started by Sasha, May 22, 2013.

  1. Mark

    Mark Acting CEO

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    My 'proposal' was thinking aloud really, considering the implications of the chain that brought us round to the idea that the reason why the excellent proposals aren't been approved is because of the nature of the reviewers. While admitting that the proposal for the designation of special funds makes a lot more sense than what I said earlier, I still wonder about this problem with the reviewers; I haven't yet heard an idea about how to address that, and yet it seems to be the real roadblock.

    There may perhaps be a rare lesson to be learnt from the UK experience here. The equivalent funding body in the UK is probably the MRC, which has effectively never funded any biomedical research until the £1.6m round a year or two ago (it looks like it will turn out to have been cleverly spread over three years to make a 50% cut look like a 100% increase, but put that aside for a moment).

    It's never really possible to definitively say which factors were most responsible for a change like this, but the change that occurred then, from psychological research to biomedical research, is hard to dispute, and by the accounts I've heard it seems to have been largely the result of several years of work led by the MEA. That work appears to have focused on the key decision makers, and in particular (this is the relevant bit) on educating the members of the committee that makes the grant decisions; I think there were also one or two key changes to that committee which swung the balance of power.

    These changes may have been much smaller than we would wish to see, but they resulted in Julia Newton's important funding (nearly £1m of the money went up to Newcastle) and they do appear to be a significant shift. If (big if) the results of that were to begin to stimulate interest amongst researchers, and thus increase confidence in applying for grants, just maybe the pot would expand as that began to happen.

    At the end of the day, I'm not denying the truth of any of the points that Ember and others have made: it's not good enough that the NIH is still failing to stimulate research and I'm sure it could make this happen if it wanted to. The 'pump-priming' with a ring-fenced pot for ME/CFS research is something that definitely ought to happen. I'm just wondering about a way round the road-blocks. If where we boil down to - as Fletcher's comments seemed to highlight - is that the reason the excellent grants aren't getting approved is that the reviewers just don't get it, the natural question after that is: what can we do about those reviewers? Who appoints them, how are they selected, how can they be educated, etc? Those people will presumably be a roadblock whatever other changes were to come in, and they're probably the roadblock to the recommendations being taken up, so I'm just suggesting that issue might need working on no matter what else happens; a bigger pot that's spent on the wrong kind of research would be no great thing, after all.
     
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  2. Mark

    Mark Acting CEO

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    A brilliant post, very well balanced and very well written. The experience you had trying to sign up sounds horrendous; for me perhaps the first thing CFSAC needs to work on would be its infrastructure and support; a lot of improvements might flow if they got all that right. Maybe funding is lacking, and they've suggested they lose a lot of their budget with the video coverage, but from the outside everything always seems to be last minute and far from patient-friendly. YouTube patient testimony shouldn't be rocket science to organize.

    There were just a couple of points in your blog that I'm not convinced on (at least, not yet...).

    The point Maier made about Ampligen, as I understand it, is that the rules are quite clear and non-negotiable that the department can't fund anything research-related on a drug whose intellectual property is privately owned, unless the owners (in this case Hemispherx) were to give up their ownership of the drug. I have no way to know what conversations have taken place with Hemispherx about all that, but I don't get how we're in a position to criticise the government rather than Hemispherx on this one: it's got to be up to Hemispherx to fund and run the research while they own all the rights, and I doubt they're open to the idea of giving up all their rights on Ampligen.

    Also, the response from Susan Levine (I think it was her?) on the "chronic fatigue" point did sound fair enough to me: I understood her to say that she only saw about 2 patients a week with CFS and the majority just had "chronic fatigue". That seemed to me like she was saying that all these Oxford/Fukuda type people that were most of who she was seeing didn't actually have CFS, so it seemed to me she was really being quite "politically correct" there by not calling Oxford patients CFS patients. She didn't mention the definitions, but that's what I understood her to be saying. And yes, the discussion about clinical practice did focus a fair bit on that "chronic fatigue" population, and what do they have to do with CFSAC? but practitioners in practice do need to make this kind of separation and perhaps some (especially PCPs) treat both groups, in different ways, so it didn't seem too far off-topic to me really. "CSF" winds me up more, for some reason: I mean come on, what's the name of the committee you're addressing?

    Other than that, the problems you highlighted were all fair points and very well put; I can't find another quibble except the peculiar phenomenon of 'government hot hair'! :)
     
  3. Ember

    Ember Senior Member

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    I don't know anything about what happens in the UK. But judging from the SEP example that I quoted, NIH reviewers seem to be a constantly changing selection of individuals whose identities must never be revealed. Educating such a group would be a challenge.

    Frenchtulip has pointed out that “in certain cases, public representatives may be recruited to provide perspective from the patient or advocacy point of view...." My limited experience of being parachuted onto a review committee to enforce the rules tells me that providing personal guidance to such a group could be challenging too.
     
  4. taniaaust1

    taniaaust1 Senior Member

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    and if they arent bright enough to be able to use a simple checklist, they need to be kicked out of the medical profession
     
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  5. Valentijn

    Valentijn Activity Level: 3

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    Yeah, I really think it's just Unger blowing more smoke on yet another issue. That seems to be something of a specialty for her. My GP understands the CCC just fine, even though she didn't know anything about ME/CFS until she got me in her office.
     
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  6. taniaaust1

    taniaaust1 Senior Member

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    Thanks. That truely is a must read, scary thou what is going on but Im not surprised by it as we all know that some people in high places want to bury our illness. A quote taken from that link

     
  7. akrasia

    akrasia Senior Member

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    Also, the response from Susan Levine (I think it was her?) on the "chronic fatigue" point did sound fair enough to me: I understood her to say that she only saw about 2 patients a week with CFS and the majority just had "chronic fatigue". That seemed to me like she was saying that all these Oxford/Fukuda type people that were most of who she was seeing didn't actually have CFS, so it seemed to me she was really being quite "politically correct" there by not calling Oxford patients CFS patients. She didn't mention the definitions, but that's what I understood her to be saying. And yes, the discussion about clinical practice did focus a fair bit on that "chronic fatigue" population, and what do they have to do with CFSAC? but practitioners in practice do need to make this kind of separation and perhaps some (especially PCPs) treat both groups, in different ways, so it didn't seem too far off-topic to me really. "CSF" winds me up more, for some reason: I mean come on, what's the name of the committee you're addressing?

    --------------------------------------------------------------------------------------

    I think it might have been Lisa Corbin who saw "chronic fatigue" patients. Levine is one of the 2 doctors who specialize in M.E. in New York City. The other is Derek Enlander.

    Jeanette's reflections were excellent.
     
  8. Mark

    Mark Acting CEO

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    Sorry, yes you're right it was Corbin not Levine. Knew it was one or the other.
     
  9. Andrew

    Andrew Senior Member

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    Maybe an activist can take advantage of this.
     
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  10. Sasha

    Sasha Fine, thank you

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    Are you sure they can't? I thought that you could review in your specialist area even when you had applications in yourself and that when your own application comes up, you were supposed to leave the room (making it obvious it's your application thereby) while your cronies vote for your grant in the hope that you'll vote for theirs (or do yours down in the hope that they'll get the funding themselves). I discussed this issue today with a friend who used to be on such committees many years ago. Am I/are we out of date?

    This issue of how reviewers are chosen could be a key pressure point.
     
  11. Ember

    Ember Senior Member

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    I looked for the earlier discussion, Sasha, but I gave up. So I'm only going by memory and by my own experience on comparable review committees.

    I believe that you're required to recuse yourself entirely if you're an applicant. Otherwise, you could use your presence to influence any ranking process, i.e., by talking down other applications in order to improve your own chances.
     
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  12. JayS

    JayS

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    These are some years old at this point, but still an interesting look at this process and how it affects us.

    http://www.cfidsreport.com/Articles/NIH/NIH_CFS_1.htm

    http://www.cfidsreport.com/Articles/NIH/NIH_CFS_2.htm

    http://www.cfidsreport.com/Articles/NIH/NIH_CFS_3.htm

    From part 3 (there is more that I would excerpt as it comes off particularly damning, but it could be perceived as being somewhat out of context, and this is a blog to begin with, so it's not like it's claiming to be unbiased, though so far as I can see it's long been among the best that focus on ME/CFS):

    Since CFS was moved to the Office of the Director in 2000, some advocates feel the makeup of review panels began to be heavily weighted toward psychiatric biology and behavioral interests, locking out researchers who propose systemic and organic models. Grant proposals submitted to the NIH are not available to the public. However, the NIH posts lists of the reviewers selected by review administrators each round. For the last 5 years, few of these reviewers have shown any previous interest in CFS. According the NIH guidelines, reviewers must be, "recognized authorities in their field" and the "principal investigator on a project comparable to those being reviewed". The NIH also encourages balanced review panels that are said to be "multidisciplinary".


    The CFIDS Report evaluated the rosters of the CFS SEP in 2004, compiling the overlapping interests and professional expertise represented during the year. Out of approximately 30-40 different reviewers, six reviewers displayed some -- but often minimal -- interest in CFS. Of those, three researchers focused on behavioral aspects of the disease, one on clinical aspects, one on physiology, and another on circulatory/hematological research. Three reviewers in 2004 were evaluated to have CFS research as their dominant interest alone.


     
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  13. Nielk

    Nielk

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  14. Kati

    Kati Patient in training

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    So it took them 3 months to post the minutes (it didn't take 3 months to write them, that's for sure.)
    i just wonder what they have to hide, or perhaps they wanted the heat and controversy of the last 30 minutes ofthe last meeting to die down?
    i really hope we will get to the bottom of this.

    From my point of view, none of the resolutions have been granted, ever. We are turning in circle, when we need to move forward and quickly. Sadly, sequestration will make matters much worse for us, since we sit really low in the list of priorities.

    i would love to hear from Eileen.
    let's hope the Lipkin team has got something really big for us this fall.
     
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  15. Nielk

    Nielk

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    Kati,

    I agree with everything that you stated here. The question is where do we go from here? There is no turning back but, there is the future. Should we just wait in silence while our future is being decided by a government agency that doesn't seem to care? We have to hold them accountable.

    I would love to hear from Eileen too. Moreover, I would love to hear from DHHS as to what went on there. Where is the resolution to the allegation of threats? What is really going on there behind the scenes? It has been over three months and we didn't receive a reply to our letter requesting a response to the allegations.

    I would love to know why do they allot such little time at the CFSAC meetings in discussing recommendations when that is the main function of CFSAC???

    Why is it okay for Dr. Unger to ignore our requests to include two day exercise testing, NK cell function and viral loads in her current ME/CFS study?

    I encourage any suggestions here as to how to move forward. I know that many of you (maybe most) are so discouraged by now that you feel that it is a hopeless case and whatever we do, will not matter. I feel though that if we all band together with our thoughts and actions that we can come up with a viable solution.
     
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  16. Shell

    Shell Senior Member

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    Having ploughed through hours of youtube CFSAC meetings in which the same requests have been made over and over again and even the request about at least saying "Chronic Fatigue Syndrome" instead of just "Chronic fatigue" has been ignored I don't hold much hope. Sorry.
    It comes across as a govt talk shop where no action will ever be taken.
    I think at least another generation must die off from the hallowed halls before anyone dare contradict them.
     
  17. Nielk

    Nielk

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    Shell - Thank you for your comment. You have very well described what most of us are thinking. This is really a conversation we should be having.
    Would it be best to just ignore that CFSAC exists. Is it really doing nothing for us? Do we see any benefit even if minuscule?

    Government agencies move at a snail's pace. There is no doubt about that. Is it worth our while to put our efforts in making this work as efficiently as possible for us?

    Some say that just for the fact that the CFSAC meetings are documented and leave a trail of information on the records is worthwhile. Others say that we would be better off not having CFSAC all together because this just gives DHHS an excuse that they are doing what they can while dragging their feet.
     
  18. shannah

    shannah Senior Member

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    Patients are clamoring twice a year to submit testimonies in an effort to educate and inform the committee with the hopes that real change will occur. Those well enough to travel sacrifice their health in order to show up in person.

    A new approach certainly seems to be needed. Perhaps boycotting the meeting would send a strong message. All those blocks of time they leave open for public testimony would be silent. They'd have to scramble at the last minute to fill them up with something. But a collective statement from the community would be made.

    Just a thought!
     
  19. Nielk

    Nielk

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    That is a position that we could possibly take. What do others think about it?
     
  20. Andrew

    Andrew Senior Member

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    The CFSAC really doesn't have power. They are not a decision making body. All they can do is submit recommendations, which they do. And the recommendations are ignored. The only change I see is now the DHHS asked them to back up their recommendations with scientific justification. I'm hoping that means they are actually thinking of using them.
     
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