1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
August 8th - What is the one thing about suffering with severe ME that the world needs to know?
Andrew Gladman brings our coverage of the Understanding & Remembrance Day for Severe ME, airing the voice of patients ...
Discuss the article on the Forums.

Watch CFSAC meeting online Monday 9-4 EST May 10

Discussion in 'General ME/CFS News' started by citybug, May 7, 2010.

  1. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    Aww fly. All that caffeine you consumed! Sorry, hope you're not paying for pushing yourself to do this. Thanks for the link.

    :hug:

    starry
     
  2. Robin

    Robin Guest

    Thanks, Sarahg and all who posted a synopsis for those of us who could not connect/watch it.

    The CDC's been doing exercise and immune testing like the Whites and Staci Stevens? (Is that what she meant?) Has anyone heard of this?
     
  3. flybro

    flybro Senior Member

    Messages:
    581
    Likes:
    5
    pluto
    Heres the full playlist, http://www.youtube.com/view_play_list?p=4C0D1C9CA2D4916C

    27 videos I think 8-10 minutes long.

    I missed a few bits, and lost a few.

    We're getting good at this, theres quite a few people putting videos of the CFSAC webinar.

    I hope we can get incease this, the more people putting up the video's, the more people that get reached.

    The CFSAC meeting has served us well, the meeting covers case definition, blood supply, CDC new buildings, not only is there some XMRV and 'chronically unwell' education, but also some ABC.

    Lenny Jason is a hero.
     
  4. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    Flybro,


    Your archive is wonderful! I don't know what you are going on about but it's wonderful!!! How did you do that? I have no idea how that's done so it all seems like magic to me. Thanks to you, I was able to see Koh and Unger, both of whom I missed yesterday, so

    big, big thanks from me!

    Koan
     
  5. Dolphin

    Dolphin Senior Member

    Messages:
    6,870
    Likes:
    6,154
    Ok, I haven't seen much of the meeting. But my guess is what was more recommended was the Canadian definition - the criteria for diagnosis.

    The Canadian treatment guidelines and Canadian clinical definition are different things.

    But to the main point:
    I know quite a lot about what Dr. Nancy Klimas says and believes. I have great admiration for her when she is talking about immunology and other biomedical areas.

    I also know that she likes CBT, although it tends to be a different sort to be on stress-reduction. But she doesn't have a natural dislike for the word.

    She also sometimes says things about exercise programs I have problems with and tends to recommend exercise. As was discussed elsewhere on the site, many of us have plenty of other demands on us so don't want to use our precious energy on exercise. Also, doctors will often just hear "recommend exercise".

    Also, just because doctors recommend exercise programs, doesn't mean they think CFS/ME is psychiatric.

    The main issue at hand is "evidence-based" guidelines. Not just guidelines, but evidence-based guidelines.
    It is a bit of a stretch to say what is in the full Canadian guidelines are evidence-based - they are more like consensus guidelines.

    Evidence-based tends to mean based on the results of RCTs. As I said, there have not been that many RCTs in the area and there are very few treatments that have two positive RCTs. CBT and GET are the basic treatments that nearly always (always?) come out as being recommended when evidence-based guidelines are put together in the area.
     
  6. Dolphin

    Dolphin Senior Member

    Messages:
    6,870
    Likes:
    6,154
    It's a gamble and people need to recognise it as such.

    Peter White, Gijs Bleijenberg, Michael Sharpe, Trudie Chalder, Simon Wessely etc think they have get improved functionality* or the cure (or something close to it) - GET and CBT based on GET. They and people influenced by them have had lots of studies published showing what they do "works". (Of course, there are lots of flaws).

    What are the other treatments people think will get recommended in evidence-based guidelines that have some RCTs backing them up?

    * based on subjective outcome measures but this is usually ignored.
     
  7. Dolphin

    Dolphin Senior Member

    Messages:
    6,870
    Likes:
    6,154
    Good points, sarahg.

    And thanks for the summary - some people (well, me anyway) probably won't get to watch the whole day so we need people summarising and making observations.
     
  8. Dolphin

    Dolphin Senior Member

    Messages:
    6,870
    Likes:
    6,154
    They did this small exercise study which fortunately used the normal Fukuda version (not the empiric version of the Fukuda criteria):

    Full free text at: http://www.biomedcentral.com/1472-6793/5/5

    These patients took part in this study in Colorado:
    ----------------------

    and this study (I have made every line a paragraph to make it easier to read)

    Full free text at: http://www.molmed.org/pdfstore/034_042.Rajeevan_00098.PDF

    Note in text:
    Again this didn't use the empiric version of the Fukuda criteria and is a follow-up of the aforementioned Colorado study (Sorensen et al, 2003) which (the 2003 study) was largely not a CDC study:

    The new one measuring stress from public speaking etc is empiric criteria (as far as I know) i.e. worthless, IMO.
     
  9. JT1024

    JT1024 Senior Member

    Messages:
    559
    Likes:
    365
    Massachusetts
    Tomk,

    I was not accurate with my wording... I intended to state that The Canadian "definition", not the Canadian "guidelines". My bad.
     
  10. citybug

    citybug Senior Member

    Messages:
    522
    Likes:
    36
    NY
    I agree that Nancy Klimas and Dr. Levine would mention exercise in some way in treatment plans. If anyone can testify about the CBT/GET issue next time it would be great way to get through to all of the committee.
    Inadvertantly I think the emphasis on the charter took away almost all attention from XMRV. Weren't Centers for Excellence on their previous list of recommendations?
    Were they being diplomatic with the new ex-officios not asking what is happening with XMRV in other departments?
    Hurray for Dr. Levine's question-will the patients be informed of their XMRV status from the blood bank testing study.
     
  11. Hope123

    Hope123 Senior Member

    Messages:
    1,170
    Likes:
    680
    Well, I don't have the energy yet to watch all the videos, but thanks for putting them up in short segments, Flybro! I did see parts of the meeting live; the bylaws part really wandered so I'm going to have to re-watch in pieces to get it down.

    Just a few comments:

    1. I'm glad Dr. Koh attended the meeting but, just to remind people, so did another assistant, Dr. John Agwunobi, a few years ago. Dr. Agwunobi was also supposedly interested in CFS but he just attended only one meeting and there wasn't much follow-up after. Then he left his post in 2007. If you're going to write Dr. Koh, please encourage him to keep attending the meetings in the future -- I don't know if it's a good or bad idea to bring up Dr. Agwunobi.

    http://en.wikipedia.org/wiki/John_O._Agwunobi

    2. Guidelines can be written and I've heard the IACFS is thinking about doing this. US medical guidelines sorta follow a standardized form now where they aren't just given out of hand but are given with ratings in regard to the level of evidence (stronger - RCTs all the way to weaker - experienced clinicians) and the level of benefit/ risk. Then individual physicians make up their minds what to do. So something with a huge benefit/ low risk but supported by good clinical experience (high benefit; weak evidence) might still be used vs. avoiding something with high risk in clinical trials (low benefit; strong evidence). So something like GET might have trials supporting it but if the risks are high, this would also be discussed ideally. Where I think we run into problems is that the adverse effects of GET are not made clear and emphasized.

    3. They specifically asked for comments on the charter this time and people specifically commented on it. Perhaps, we can organize and focus on some topics beforehand as suggestions for people to write about for the Fall CFSAC (around Oct/ Nov) next time. Frankly, I don't feel like our advocacy groups prepare us enough on what to write before CFSAC. It always ends up coming as a surprise. Even without the CFSAC agenda early on, we could still pick out topics. Proactive rather than reactive.
     
  12. Dolphin

    Dolphin Senior Member

    Messages:
    6,870
    Likes:
    6,154
    (People - feel free to skip down to the bit below my quote)

    Also, the adverse effects haven't really shown up to a major extent in the clinical trials themselves.

    Here is a post I sent to Co-Cure last year which is one of the few things we have:
    A major problem is that we don't have good data that proves the patients in the trials do what the advice says. So the advice in the White/Fulcher trial is to endure 7 days of symptoms before reducing the amount of exercise (basically they don't want you to decrease exercise)*. But did all the patients actually stick to this? So the advice to not reduce can look safe to outsiders as there weren't adverse reactions but that's because many people probably didn't stick to it. If people actually do what the advice actually says, it isn't necessarily safe.

    In the PACE trial, I came across one person who was counting minutes of her housework in the exercise she was supposed to be doing. But much of the information is that the exercise program is supposed to be exercise on top of other activities. And housework is stop-start. So again, not really treatment compliant.

    Also, in treatment trials, they can take extra care with patients and patients can be extra cautious, perhaps putting their lives on hold to do the exercise. That's not necessarily real life.

    Anyway, we have a bit of a problem that for many "evidence-based" reviews, they can tend to ignore surveys, and Graded Exercise Therapy then looks safe and also effective.

    And of course the message isn't clear either that people might be able to increase a little but then reach a plateau. Graded Exercise Therapy doesn't suggest there is an activity plateau but that one can gradually do more until one gets up to normal.

    I agree that harm is the defence we need - but it has tended not to be end up in the final guidelines for CFS (although it probably hasn't been pushed as well as I would like e.g. using terminology such as "adverse reactions" which can make survey data relevant).

    * That is to say that say you get up to a 15 minute walk, 5 days a week. If you start feeling extra symptoms, you are not supposed to reduce, even to 14 minute walks - you are supposed to keep at the 15 minute walks for a week. If after a week, you still have symptoms, you are then allowed reduce a little. I think lots of people won't do this (and of course, I think they are right not to keep at the 15 minute walks if they are getting lots of ME/CFS type symptoms).
     
  13. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,175
    NYC (& RI)
    It was actually "Rihanna" according to the closed captioning.

    I did not like her attitude of how dare Dr. Bell accuse NIH of not doing everything for "CFS".
     
  14. Jerry S

    Jerry S Senior Member

    Messages:
    422
    Likes:
    13
    Chicago
  15. Dolphin

    Dolphin Senior Member

    Messages:
    6,870
    Likes:
    6,154
    Thanks Flybro.
    I went looking for Dr. Unger's presentation - yours was the only one I came across that had the full piece - the other two I looked at, when she started talking about the second of their studies she was highlighting, cut off and jumped. Thought I'd highlight that in case people missed the jump there.

    What I'd like asked at the next meeting is whether they are going to do the CBT/GET study they mentioned in the plan. I can't remember the exact words but it seemed that the plan was the basis but that there might be scope for some changes.

    I think there have been a disproportionate amount of CBT/GET studies already in the field. Also, I'm not at all happy that it seemed to be justified as the external panel suggested - a small panel containing Peter White (which also praised the empiric criteria) (and one can tell by the wording it was most likely him who suggested the CDC sponsor such a study).

    Also if the CBT/GET study used the empiric definition, it's likely that they people (largely overweight, depressed people) could improve with an exercise program and CBT designed to encourage them to exercise more. Some may even make "full recoveries". That won't really tell us much about CBT/GET for ME/CFS.
     
  16. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    I'd be completely blown away if that happens with the CFSAC.. ever! They've always been like this except they usually have a lot more PWC telling them exactly what CFS is and how badly it impacts their lives. I've read all the transcripts of the CFSAC before they started putting it on the web live.

    You make good points as do others here. My feeling is that most of the people on the CFSAC do get what CFS is and do really care but I think they are too busy with other things in their lives and when they come to the CFSAC they aren't prepared to run it properly. I don't know.. Koan says this is all normal for how things run at the govt. level and I'm sure that's true but that doesn't mean that they can't do better. That probably means that CFSAC is just like all the other federal committees out there and watching it try to function is probably like watching any of the others.

    I do applaud Lenny Jason and Nancy Klimas for bringing up important issues and asking relevant questions of speakers at the CFSAC and Wanda does a great job running it but besides them and the patient testimonies, the CFSAC seems to flounder.

    Am I correct in remembering them say that not ONE recommendation of the CFSAC has EVER been carried out? See my post under this one before responding to that please.
     
  17. citybug

    citybug Senior Member

    Messages:
    522
    Likes:
    36
    NY
    Thanks Jerry for blog link. She compares us to the Tuskegee experiment and concludes:

    For a rich, invigorating reading experience, I highly recommend the following link to the written testimony presented to this committee. Taken together, this material suggests that the years of propaganda that has kept patients and their families under a spell for years is breaking apart. Are we very far away from the emergence of a bona fide activist movement? The scientists I talk to--the ones who don't work for the government--are watching events unfold with jaws agape that patients who have been branded with the "CFS" label aren't descending on the Centers for Disease Control "with pitchforks," as one recently said to me. "They're too sick," I told him. Now, I'm not so sure. Could the folks who don't yet have heart failure and/or cancer, who have not been ill for twenty or twenty-five years, who can still walk--will they be the ones who will take the fight to the doorsteps of the NIH and the CDC? Will they be the ones to shut down Tuskegee II?

    I think we need to ask for retrovirologists experienced with mulv to be on the grant review panels.
     
  18. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    Welcome to PR OneWay. Glad to have you here. :balloons:

    I'm glad to hear this, I hope that Dr. Koh makes good on his promise.

    That's great Jennie. Thank you for this and thanks for writing out the seating plan of the CFSAC.

    That is very concerning especially since Dr. Klimas has created what she calls "Fatigue Centers" and has her own brand of CFS/GET that she uses and promotes in the current CMEs by the CDC and the CAA.

    I believe she does understand the severity of CFS but it seems she does not understand the political fall-out patients end up dealing with when she uses those terms and ideas. She also never calls our illness "Chronic Fatigue Syndrome" but always calls it "chronic fatigue".

    What's disturbing is that she's one of the best people there for us at the CFSAC. I am not discounting all of the wonderful work she does do for us.
     
  19. Hope123

    Hope123 Senior Member

    Messages:
    1,170
    Likes:
    680
    That bylaws part I am still reviewing as it does get messy but what I understand is that CFSAC members are prohibited by federal regulations from meeting/ discussing issues outside of the meeting (like between meetings) for governmental transparency reasons. This I got from a former CFSAC member. Also, members are not necessairily compensated for these outside discussions and no one can realistically expect people to take time and energy out of their busy lives regularly to do work that is not compensated. (Bless those who do!) So I don't see it as an issue of CFSAC members not wanting to do better, I think there are actual obstacles to this they don't have control over. There are parts during the bylaws discussion where members bring up wanting to meet regularly, like monthly, at least for the subcommittees.

    I know from my past work experience as a rep for my department at some regional meetings that my dept. would discuss/ prep beforehand what I would say so the regional meetings would run more efficiently and quicker. CFSAC subcommittees might not get this opportunity as much.
     
  20. jspotila

    jspotila Senior Member

    Messages:
    1,074
    Likes:
    609
    This is correct. The full CFSAC can only meet in public, under the federal Sunshine laws. Committees, on the other hand, can meet as often as they like, and you are correct that it was discussed during the by-laws topic.

    One thing that amazed me is that NO ONE asked Dr. Unger (or Dr. Milller) what her budget request was for the CFS program for FY2011.
     

See more popular forum discussions.

Share This Page