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Good News From The NIH..Patient Advocate for NIH State of Knowledge Workshop

Discussion in 'General ME/CFS News' started by shannah, Dec 30, 2010.

  1. eric_s

    eric_s Senior Member

    Switzerland/Spain (Valencia)
    A good development. Looks like we are moving in the right direction, even though there's of course still a long way to go.
  2. CBS

    CBS Senior Member


    Thanks for the great news and congratulations on being considered yourself.

    I do appreciate the need to limit inclusion of patient representatives to those are well enough to handle a "significant workload."

    One of the real ironies of this disease is that as the disease progresses you become more acutely aware of real risks of significant disability and pathology (I am accumulating a very impressive and growing list of documented pathology - primarily CNS damage) while at the same time losing your already compromised level of physical capacity. Over just the last 12 months, I've watched a number of long time patients fade from these boards as their health deteriorates. To be frank, it scares the hell out of me to see this in myself.

    Whoever is chosen, they need to have the courage to face the uncomfortable reality that this disease will take your life and it can lead to degeneration at a frightening pace as you pass certain tipping points. They will also need the fortitude to keep driving this message home, especially to those whom we have long viewed as CFS advocates. It is my very strong opinion that a significant obstacle to progress has been the reluctance of patients, families, advocates, medical professionals and governmental agencies to face the reality that ME/CFS patients do not recover with time (symptom fluctuation is not recovery); that they suffer severe and progressive disability, and that impact on mortality is completely unappreciated as no attempt has ever even been made to record those amongst us who have died from ME/CFS.

    "To measure is to know." "If you can not (will not) measure it, you can not improve it." - Lord Kelvin
  3. lancelot

    lancelot Senior Member

    southern california
    Wow it's good to see Cort in there! Congrats!
  4. caledonia


    Cincinnati, OH, USA
    I think there should be alternates or backups for each patient representative or that their term should be only a few months with plans for continuity to the next person.

    This would help with the burnout/health ramifications like CBS mentioned.

    Are they required to actually go to the NIH for meetings, or will it be conducted by video or phone conference?
  5. free at last

    free at last Senior Member

    This is good to see, If Cort gets there i would be happy with that, but who ever gets chosen, its a really good chance for the patient community to have a voice within decision making. Just doing this, really heals so much negative attitude. The uk deparments of health should look at this, and feel ashamed.Good news Cort, hope your one of our voices, your knowledge and fairness, will be much needed.Way to go America
  6. leela

    leela Slow But Hopeful

    Couchland, USA
    An excellent development! So glad to see this invitation forthcoming, and such worthy candidates at the ready too.

    And CBS, you make some really, really good points here. Essential points. They *must* be addressed.
  7. lancelot

    lancelot Senior Member

    southern california
    What you say is true and very frightening. What i gather from epidemiological studies is that about 5% fully recover, about 1/2 get variably or somewhat better, and the other 1/2 never gets any better or gets progressively worse. I think the overall progression(better, worse, or the same) of this disease in the first few years can accurately describe the long term course of a PWC if drastic medical treatments do not work.
  8. gracenote

    gracenote All shall be well . . .

    Santa Rosa, CA
    Reposted with permission from the author, Dr. Yes.

  9. glenp

    glenp "and this too shall pass"

    Vancouver Canada suburbs

    Extremely important!! The most severe are not able to post and need to be included. The deaths that occur, that are not considered!!! Pleez go for us Cort

  10. *GG*

    *GG* senior member

    Concord, NH
    I think this is a good idea, and agree with CBS's concern.


    PS Congrats to everyone on all the advocacy!
  11. gracenote

    gracenote All shall be well . . .

    Santa Rosa, CA
    This is what I posted on P.A.N.D.O.R.A.'s facebook notice of this announcement:

  12. Sean

    Sean Senior Member

    I suspect this will not be a popular view among some here, but I am strongly opposed to autism activists being so closely involved in ME/CFS issues, particularly at this formal advisory level. (Conversely, I also believe ME/CFS activists should not be on advisory panels for autism spectrum disorders.)

    Both scientifically and politically it would be a very serious problem trying to fight on two controversial medical fronts at once.

    We ME/CFS patients will not get many chances like this to influence policy, and there are much better qualified and more relevant people to represent our disorder on this panel than those autism activists suggested. We have to be very rigourous, even ruthless, about who represents us on that panel.

    Good choices from that list include Cort, Mary Schweitzer, Pat Fero, Marly Silverman, and Alan Gurwitt.

    Sorry to anybody who is offended by my comments, that is not my intention, but that is my honest and considered opinion about where the best interests of ME/CFS patients lie.


    And I agree with CBS... I have definitely deteriorated slowly over time, despite my best efforts to prevent it happening (though I have managed to significantly slow it down, I think), and this problem needs to be given much more careful and serious attention by the respective authorities.

  13. illsince1977

    illsince1977 A shadow of my former self

    Wonderful news that there will be patient representatives!

    I can post, but there are many times I can't. I'm totally bedridden; sudden onset, though not viral or from a toxic exposure; debilitated from the beginning and on and off since before there was a name for this; disbelieved and dismissed since the beginning; was able to work until 1990, but only because I was being treated with an MAOI (no, I don't know why it helped, but I do know that it isn't because I have atypical depression like the doctors concluded by virtue of the fact that it helped) that eventually caused a stroke.

    Please, whoever represents us in the end, please don't forget those of us who do not fall into any definition, including the CCC. We are more prone not to get a diagnosis, or get relegated to the psychiatric dustbin as I was for years. Like CBS and glen, I too, plead with whomever is selected as patient representatives to represent all of us. We have CFS too, even though no one thinks our history common enough to be afforded the respect of a clinical or research definition.

    I think the notion that people must be sick for 6 months before the medical profession and insurance companies determine whether or not they are ill may be a good starting point. This fact alone becomes the basis for patients to be treated with contempt and displays a complete lack of respect for the seriousness of this illness. In what other disease is the patient instructed to go away and no action, including any diagnostic tests, is warranted until 6 months have passed? And then, only after 6 months of life altering debilitation will the doctor decide if you're "just complaining" or not? We are tired of being treated like drug seeking, attention seeking liars. At least I know I am.

    Not having answers may be understandable, but not seeking answers and insisting there is nothing wrong with us because we don't fit into the mold of what is currently known to science and medicine is unscientific and displays incredible arrogance and lack of humanity. Please convey that.

  14. Dolphin

    Dolphin Senior Member

    Different "levels" of the (revised) CCC

    I am sorry to hear of your health problems. I have been housebound since 1994.

    The new-ish definition paper has different levels requiring different amounts symptoms - maybe you might fit under one of them http://www.thescipub.com/abstract/10.3844/ajbbsp.2010.120.135:
  15. KnightofZERO


    a penny and my thoughts

    Why not use a poll? This is a site built around a message board after all. Why not let people nominate whom they want and then conduct a poll of members--I think this would be the most democratic way to proceed. If the board is of the opinion this entire process would be too lengthy... why not just have the board select "Candidates" and let members vote in a poll on those candidates?

    I'm not suggesting this because it would result in a better list--though it might. But it seems to me that having the board select people on a site built around a forum and blogs is using a very "top-down" management style when a "bottom-up" style would arguably be just as practical and effective. Furthermore a "bottom-style" has the effect of empowering the community at large much more than a top-down strategy can achieve.

    Just my opinion. I'm not saying that this process can't, or shouldn't be managed to give more weight to senior members, and to senior senior members such as Cort who founded this site, but surely something like a poll of candidates is more in keeping with the democratic expression of views and philosophies that a message-board and a "knowledge clearinghouse" should embody.

  16. Wayne

    Wayne Senior Member

    Ashland, Oregon
    Hi Rich,

    When I thought of your being an excellent nominee, I was thinking beyond your expertise with the GD-MCB. I was also thinking of your ability to take a "global view" of CFS, something I feel is so important with such a complex syndrome.

    For those who might be interested, I thought Rich made a remarkably insightful post about a week ago in which he discussed his global view of CFS, and how it differs from various CFS MDs and researchers. I thought it was so good, I e-mailed it to some friends. I'll provide a link here as well:


    Again Rich, I would love to see you advocating for us at the NIH level. I think you could bring much to the table. Besides your indefatigable dedication to the ME/CFS community, I think you have some diplomatic skills that could really make a difference.

  17. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

  18. MarxyGrouch


    Keith Baker has been nominated at ME/CFS forums, and I think people here should consider supporting this nomination also.

    Keith has given excellent testimony in the past. His whole family has become sick, but, interestingly, he is adopted. Predisposition theories deserve some serious questioning in light of this.

    He also has a child with autism, and is an articulate and well informed voice who can speak on both the science and the politics of this disease.
  19. richvank

    richvank Senior Member

    Hi, Wayne.

    Thank you again for your support and confidence in me, and I'm glad you liked my recent post. However, I still believe that I can do more good for the CFS community if I am able to address the workshop, rather than to serve on the committee. I want to be able to retain my independence so that I can advocate for consideration of the GD-MCB hypothesis in particular, because I believe it would be helpful to the NIH and the CFS communty as a whole to develop a more global hypothesis that takes in the various subspecialties, rather than getting mired in the details of these various subspecialties, which are interesting and which are important, but it can become a problem of not being able to see the forest for the trees (I know you have a lot of trees in Oregon! :)-)) If I don't do this, I don't know of anyone else who will, based on my experience with CFS research "goings on" over the past 15 years, and I think it's something that needs to be done.

    I want to be free to be able to take a strong position on how ME/CFS should be viewed. If I were a member of the committee, I think I would feel the need to compromise, because that is ultimately what committees have to do. I have served on government committees in other areas in the past, once with the Environmental Protection Agency, and other times with the Department of Energy and the U.S. Army. Committees provide a mechanism for letting various points of view be heard, but they usually end up averaging things out and of course, they are only advisory in nature and don't actually have control over what is ultimately done by the particular government agency.

    I think I could do more good by attempting to influence the views of the actual NIH decision makers, who will also likely be present at the Workshop, but will probably be mostly listening and trying to keep a lower profile. That's usually the way these things work. So I'm hoping I will have a chance to do that, but we'll see whether that will happen or not.

    I do think it's a positive thing that the NIH is asking for nominees of people from the patient and patient advocacy community, and I do think it's important to choose good candidates, who are knowledgeable and able to express the views of this community, and who also have the patience and diplomacy required and who have a realistic view of what committees can accomplish. I've seen the names of many good people on the lists that have been posted. I'm hopeful that the NIH is acting in good faith and will indeed take the patient community's views into account in their decision making, and that this will not just be a mechanism to "let people be heard" to defuse the activism that has gone on lately, which can be embarrassing to public officials. I've been around long enough to know that that kind of thing does happen, but I'm optimistic.

    Thank you again, and rest assured that I plan to continue to do what I can for the ME/CFS community, whether or not I will be "heard" at the Workshop.

  20. Mark

    Mark Former CEO

    Sofa, UK
    I'd just like to second these sentiments, and the points made by Gracenote earlier in this thread.

    I've been somewhat more 'behind the scenes' on this one than the membership of course, so I can understand how things have evolved in this way, and really it's just been unfortunate that the timescales, the pressure of work (a busy festive season for us!) and the channels of communication have all tended to steer us towards "board decisions" rather than "membership decisions" which are trickier and take longer to organise. There's no lack of desire to involve the wider patient community that I can detect, it's just the way things have turned out this time. BUT that should not be an excuse not to try to be more participatory about these matters in the future - perhaps we just failed to think of this point immediately and could have made the issue a public one more quickly than we have.

    I have myself made all of these points already at board level, as have other PR board members: transparency and patient involvement are vital in this matter if the 'patient representative(s)' is/are to be fully trusted by the wider community.

    There's a practical problem, of course: that it would not be at all easy - probably, ultimately, not feasible - to organise a full and fair 'election' involving the whole of the wider community. Phoenix Rising is one of the organisations best placed to do so, using the forums and the voting facility, but of course it's a pretty good bet we'd vote strongly for Cort anyway so it's not really clear what such an exercise would prove really. Many or most other organisations just wouldn't have had the infrastructure to attempt such a democratic exercise in the time available.

    From Dr Mangan's point of view, he has done the only thing he could have done: contacted a range of organisations and asked for their nominations. It's highly commendable that he's done so, and everything about this development is so positive: it's a reaching out to the patient community, a genuine and serious attempt to take on board the concerns of the community, and I'm personally delighted to see this happening.

    It's been a slightly confusing and imperfect process, but I still see it as a very promising beginning. We will get better and better, I hope, at involving the whole community in issues like this, and in finding ways to continually improve the channels of communication from patients to decision-makers.

    And what a great list of advocates and representatives we're constructing here! It would be nice to think we could do something else with that list, in the future: perhaps the people on that list could form an 'expert group' of their own, that could be called on to share the load of representing the views and concerns of patients.

    Anyway, I'm making a big mental note to myself here: in future, for any decisions put to the Phoenix Rising board, my first question, by default, is going to be: is it possible and appropriate to consult the members on this decision?

    For now, I would support a discussion here to complete the list of names of candidates, followed by a members' poll to indicate our preferences (I suggest a poll in which one can vote for more than one candidate; it's a shame but we don't have a facility to rank choices "1,2,3..." which would be the democratic ideal). Dr Mangan and his team will then have a chance to view such a poll before choosing from amongst the nominations, which I presume is how their final decision will necessarily have to be made.

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