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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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State of Knowledge Agenda is up! It's UP!

Discussion in 'General ME/CFS News' started by urbantravels, Apr 4, 2011.

  1. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Can anyone going to the conference please hammer home that the Reeves definition is crime against humanity and anything coming out of CDC should be assumed to be a lie unless proven otherwise? you know to just give a little context to this speaker.

    Mary Schweitzer, Pat Fero, Judy M., Ken Friedman, Francis Collins, etc.! Yeay!!

    Kim McCleary on communication.
    hahahahahahahahahahahahahahahahahahahahahahahahahahahaha!
     
  2. urbantravels

    urbantravels disjecta membra

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    Well, she *is* talking about communication with researchers, not with patients or the general public...so maybe she has some miraculous ability to communicate with researchers that we don't know about?

    I suppose "Hi, I have a check for you" would be considered a very successful communication on both sides, and I'm not knocking it; but I hope other speakers will highlight the problems we have with ignorance and stigma about our disease.

    One of the items from my wish list that I don't see being explicitly addressed in any of the topics is premature mortality in ME/CFS (which of course, like everything else, would have to depend on a stringent disease definition to be meaningful information.) I wonder if we'll have any opportunity to submit questions in advance or during the session?
     
  3. toddm1960

    toddm1960 Senior Member

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    Not to be morbid but we'll never see a mortality study completed in our lifetime. Once funds are available for a study, and a true definition is used to find real cases.........we'll be of the age to be in the study :oops:
     
  4. ixchelkali

    ixchelkali Senior Member

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    Actually, she's speaking on communicating with "research stakeholders." Um, that would be us... among others (including the general public, if they only knew it).
     
  5. ixchelkali

    ixchelkali Senior Member

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    If anyone doubts that this agenda is a vast improvement over the past, or simply feels like taking a walk down memory lane, take a look at the transcript of the 2003 NIH conference on "Neuro Immune Mechanisms and Chronic Fatigue Syndrome": http://orwh.od.nih.gov/pubs/cfs_june03report.pdf

    Several of the speakers weren't even talking about CFS, but about Fibromyalgia, IBS, or Gulf War Disease. Then you had Dedra Buchwald explaining what Chronic Fatigue Syndrome is, and the section on the autonomic nervous system was kicked off by Peter White talking about the ANS response to exercise in CFS patients.

    We ARE making progress.
     
  6. WillowJ

    WillowJ Senior Member

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    We did already ask for the conference to formally condemn the Reeves criteria (side note: the International ME/CFS Symposium at Bond University has done this, thought you would like to know, Justin), and to formally repudiate Reeves, Oxford, misuses of Fukuda, and other CF and unrelated inclusions, as not related to the disease at hand.

    Seriously if there is any one person from CDC's CFS group we could hope might possibly NOT be a total skunk, it's Rajeevan. Most individual people there can't help the useless criteria (unless they--hint, hint--become a whistleblower or band together to protest the inhumane and unscientific treatment of us and our disease), and Rajeevan did break ranks to join a study saying, of all astounding things to hear from that quarter, PEM is the distinguishing characteristic of CFS (in the transcriptional control of complement activation study). We should wait until after hearing the talk (the title is pretty vague) to decide whether Rajeevan is a person sympathetic, antipathic, or apathetic towards us.
     
  7. Dolphin

    Dolphin Senior Member

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    My point: http://forums.phoenixrising.me/show...s-up!-It-s-UP!&p=169435&viewfull=1#post169435 is supposed to relate to the science i.e. don't waste your time concentrating when he/she (?) is talking about empiric criteria studies. I don't blame some people in the CDC team for the empiric criteria - Reeves name was the lead name (a relatively rare thing) and I think he was behind it. Others I think were just following orders and using the data sets in front of them.
     
  8. WillowJ

    WillowJ Senior Member

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    I was responding more to Justin (who expressed a widespread sentiment with "don't trust CDC"). It's true that CDC has proven untrustworthy and much of the data--particularly recent data--they have, should not be trusted. And it's true what you said: we shouldn't waste our energy listening to stuff based on worthless inclusion criteria because that can't tell us anything about any group of patients (certainly not ME/CFS, but not any other group, either). And it's also true that a lot of people at CDC have been "just following orders and using the data sets in front of them."

    And it's important that, if some of them chance to be reading this, they know that if they decide to do the right thing and shake things up, we would support them in that, if they were able to demonstrate that they were serious.
     
  9. eric_s

    eric_s Senior Member

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    Yes, this looks like a lineup that we deserve. If they can now increase the funding then things should go a good way.

    I wish they had Montoya and Lerner. But ok, you can never have it all...
     
  10. urbantravels

    urbantravels disjecta membra

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    I looked at that document, and YUCK. YUCKIE. PTOOIE.

    We're making enormous progress to be looking at two days of all (or almost all) solid science. I wonder if this time around they invited Wesseley, White, et. al and they were mysteriously unable to grace us with their presence? Probably afraid of meeting a mob with pitchforks...

    Of course, I hope they weren't invited at all. Yet it seems within the realm of possibility that someone would have been invited to represent the PACE study...and yet there is no such person on the agenda. When they were so eager to issue press releases and give press conferences when their study came out! You'd almost think they weren't eager to share their groundbreaking work with a US audience...and take questions from a very knowledgeable and critical room full of researchers...
     
  11. ixchelkali

    ixchelkali Senior Member

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  12. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    It makes no sense to put it in a small room. Anything you can do in a small room you can do exactly the same layout in a larger room and then put extra seating in the unused area. The NIH campus is huge- there are several shuttle bus routes just inside the campus and there are more buildings outside the campus. I took a quick look on their website and was able to identify three auditoriums and an amphitheatre and there are probably more.

    This is the first conference/workshop they're having in 8 years (and the last one was reportedly psych BS) and there's obviously a lot of interest in ME these days, at least on the part of patients. The only reason I can think of putting it in a small room and putting out the speaker list 4 days ahead of the conference is to discourage people from attending and make sure no patients can ask uncomfortable questions or otherwise point out their malfeasance.

    http://www.nih.gov/about/visitor/index.htm

    Lipsett Amphitheater - Building 10
    Masur Auditorium - Building 10
    Natcher Building - Building 45- auditorium
    Lister Hill Center - Building 38A- auditorium
     
  13. insearchof

    insearchof Senior Member

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    I posted this in another thread.......

    I agree with you Justin. You don't move rooms you get the right equipment ie wider lens or you pan along the length of the panel and then just focus on the person speaking. larger room actually makes more sense for this....to be able to get the length of the table into the shot from further back and then use zoom capabilities .....not the other way round.

    "It may be that they want to restrict access to the speakers to stop anyone making a protest or trying to put banners etc in front of a camera."

    Most of us are interested in what they have to say and so, that strikes me as unlikely but easily remedied by the presence of security at the frount of the room.

    ...............

    I think it is fairly obvious as to what is taking place here......" State of Knowledge" on CFS is not a priority. If it had been, it would have been planned. This had none effectively, as evidenced by an inability to settle and promote the conference agenda only 4?days out from the event.
    In doing so, anyone could appreciate that attendance in such a situation was going to be fairly minimal....so maybe that is the real reason for the small room.

    And of course a small audience means less exposure to any important information delivered there.....which kind of makes me wonder....is there a speaker presenting on content that has something very important and or sensitive to say?

    Looking at the line up.....with talks on neurological issues etc, it is also possible that my last sentiment relates to a number of speakers.
     
  14. Snow Leopard

    Snow Leopard Senior Member

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    Hopefully a few researchers will badger him about drastically increasing the rate of NIH research grants and encouraging researcher interest in general.
     
  15. eric_s

    eric_s Senior Member

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    I agree, but the line up is looking good. So to me it looks more as if they don't want too much attention and coverage so they can play for time a bit longer than as if they want to continue to give us BS. So i don't worry too much about that, but that's just my opinion.

    I hope the Bieger study that will be presented at the Invest in ME conference will be what we wish for. And then a bit later there will be the BWG results. This seems to have been "their" timeplan since last year, to answer the XMRV question somewhere around summer 2011, for whatever reason. So if those (Bieger and BWG) will be in our "favour" they will hopefully be able to step off the brakes. I think we should be ready then to have a strong lobby, be able to have a say with things and add funds to government funds etc. So we should use the time to build up our organisations.
     
  16. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Do they never use these auditoriums because they're too big to film in? I've never used a professional video camera before, but I suspect they are able to film outside of small rooms. I have never seen a football game tv coverage cancelled because the field is just too big to film even though the players move around and aren't sitting down. This conference is mostly one presenter at a time standing in a fixed place giving a 10 to 20 min presentation and probably not taking any questions. I bet i could film the proceedings in a large room just fine myself.
     
  17. richvank

    richvank Senior Member

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    Hi, all.

    I'm in Bethesda, and I walked over to the NIH this morning and checked out the rooms that are planned to be used for the workshop. The lady at the information desk gave me a tour. The main conference room is a very nice room with a large conference table and a few rows of seating around the edges. There are plans to have one area reserved for members of the NIH staff, one area for the workshop committee, one area for the press, and the rest for speakers and audience.

    There are also two smaller rooms down the hall that will have TVs. One of them will have a sofa and a hide-a-bed for PWCs who need to recline. It also has a conference table and chairs. The other will be used partly by the press and partly by audience.

    I didn't have time to count all the chairs in the rooms, so I can't say what the total capacity will be. They will have a sign-in desk, so presumably those who registered early enough will be able to sit in the main conference room. I did register early, but I plan to arrive early also, to try to get a seat.

    I'm looking forward to the workshop. I agree with others here that there is a good lineup of speakers.

    I attended the previous two NIH workshops on CFS, also. I think that my reports on some of the talks given at the previous workshop are still on the internet somewhere. Some of them were actually pretty good, in my opinion. This time, as you know, it will be webcast live and also available later, so I don't think I'll try to write detailed reports this time.

    The time before last, the workshop was held in a conference room at the Key Bridge Marriott Hotel. Last time, it was held in a fairly large room at the NIH, and it was recorded, but not videoed live or webcast.

    Personally, I think Dr. Mangan is operating in good faith in terms of the room choice and the speaker lineup. The fact that the workshop is going to webcast is really a good thing, in my opinion, because even if the room were larger, there are oodles of PWCs out there who would like to come and would not be able to. This way, they will be able to follow the talks as they are given.

    Also, these conference rooms are located in the same building as the offices of the directors of all the institutes of the NIH, so I think that will make it easier for people from these offices to come, even for a short time, and I think that's also a good thing.

    And lining up this many speakers, most from outside NIH and some probably not even funded by NIH, so that they don't have any ties to them, has got to be very challenging. I'm not surprised that it took a while, what with the agreement of the steering committee and the official approvals that had to be gotten before they could even invite someone, and then the possibility that the person might have other plans, such as teaching responsibilities and other things, and may have to decline, so that they have to go through the process with someone else, etc. I'm just thankful that they were able to accomplish this as well as they did, and as I wrote, I'm looking forward to the workshop.

    I don't know how much opportunity there will be for input from the audience, because it looks like a pretty tight schedule.

    Best regards,

    Rich
     
  18. eric_s

    eric_s Senior Member

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    Thanks, Rich. I think it's a bit strange to only post the schedule at such a late point (i don't have experience with those events though), but i agree that Dr. Mangan seems to bring some positive changes.
     
  19. shannah

    shannah Senior Member

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    Thanks Rich for your calming appraisal of the situation. So glad you are able to attend.
     
  20. ukxmrv

    ukxmrv Senior Member

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    Thanks Rich, we are very lucky to have you on our side!
     

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