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CFSAC meeting Oct 3-4, 2012

Seven7

Seven
Messages
3,444
Location
USA
I don't know but I saw at least a little difference. The committee was more focused on the way they did the recommendation in a more concise and money attach way.

Our representatives took less crap and fought back. I loved Aileen!!!
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
Here's something I don't understand. Somehow the discussion centered around the Canadian Consensuses 1 and 2. Dr. Fletcher offered Dr. Klimas's comments on these. What about the ICC. Klimas was an author on this, and according to the introduction section, it improves on the CCC.
 

Dolphin

Senior Member
Messages
17,567
I wasn't watching. Was the vote, on ME/CFS experts for the the case definition discussion, public? If so, who voted in which direction? Somebody may not remember them all but eventually a list could be made. (maybe it's not important)
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
Here's something I don't understand. Somehow the discussion centered around the Canadian Consensuses 1 and 2. Dr. Fletcher offered Dr. Klimas's comments on these. What about the ICC. Klimas was an author on this, and according to the introduction section, it improves on the CCC.

I think by Canadian definition #2 they meant the second Carruthers definition, the ICC. That's the only sense I could make from that.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
I wasn't watching. Was the vote, on ME/CFS experts for the the case definition discussion, public? If so, who voted in which direction? Somebody may not remember them all but eventually a list could be made. (maybe it's not important)

only half the room can be on camera at a time. Vote is by show of hands, so it is public. However the camera did not pan, so it may not be possible to get a complete list without requesting the minutes (they might eventually post to the website?)

Eileen Holder and Mary Ann Fletcher voted yes on experts. That's all I recall for sure at this moment.

Marshall, Unger, and Maier were opposed during the discussion.

Marshall felt that people who thought ME/CFS was not a real disease would not come to a stakeholder meeting. I think this is naive. There are lots of people who think ME/CFS is primarily psychosocial or is psychogenic who would show up at a stakeholder meeting. There's kind of a reason we're engaged in a propaganda war.

Dane Cook is the one who proposed adding 'experts' to the wording.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
Dane Cook is the one who proposed adding 'experts' to the wording.
but from my notes, it's not clear what kind of experts is meant

I have person I didn't identify in my notes saying, in clarification/response this "needs to be people who have spent some time evaluating and treating mecfs patients" whatever their expertise
 

mfairma

Senior Member
Messages
205
I will continue to applaud patients and advocates that attend and testify at CFSAC, but I don't plan to spend any more time and energy on them. The ex-officios invoke Catch-22 after Catch-22 and would have us believe that no one actually holds any accountability for ME/CFS. Trying to keep up with rebutting their half-baked defenses is like whack-a-mole. A few of the noted CFSAC members are great, but many of the CFSAC members don't seem to realize how completely ineffectual is the CFSAC. And not realizing the nature of their position relative to HHS, the CFSAC cannot think and act strategically. With things as they are, CFSAC is a total or near total waste of our energy, as it is clearly not meant to foster change or able to do so given such intransigence on the part of CDC and NIH. In that respect, I would encourage people to spend less energy on CFSAC and much more on other advocacy efforts that are more likely to bring change, I.e. lobbying your congress people, developing educational materials or videos, writing letters to media personalities and news sources, etc. I know I've personally spent too much precious energy on a body that my intuition tells me will not produce change. We need to find a way to exert real pressure on HHS if we hope to see change.
 

Dolphin

Senior Member
Messages
17,567
I think by Canadian definition #2 they meant the second Carruthers definition, the ICC. That's the only sense I could make from that.
There is a Canadian definition two:

Jason, L.A., Evans, M., Porter, N., Brown, M., Brown, A., Hunnell, J., Anderson, V., Lerch, A., De Meirleir, K., & Friedberg, F. (2010). The development of a revised Canadian Myalgic Encephalomyelitis-Chronic Fatigue Syndrome case definition. American Journal of Biochemistry and Biotechnology 6 (2): 120-135, 2010 ISSN 1553-3468. doi:10.3844/ajbbsp.2010.120.135
Free full text at: http://thescipub.com/abstract/10.3844/ajbbsp.2010.120.135
 

Dolphin

Senior Member
Messages
17,567
only half the room can be on camera at a time. Vote is by show of hands, so it is public. However the camera did not pan, so it may not be possible to get a complete list without requesting the minutes (they might eventually post to the website?)

Eileen Holder and Mary Ann Fletcher voted yes on experts. That's all I recall for sure at this moment.

Marshall, Unger, and Maier were opposed during the discussion.

Marshall felt that people who thought ME/CFS was not a real disease would not come to a stakeholder meeting. I think this is naive. There are lots of people who think ME/CFS is primarily psychosocial or is psychogenic who would show up at a stakeholder meeting. There's kind of a reason we're engaged in a propaganda war.

Dane Cook is the one who proposed adding 'experts' to the wording.
Thanks.
Unger and Maier are ex-officios so don't have a vote as far as I know. But I'm curious whether for example, the two CDC-nominated voting members went along with Unger's view.
 

Dolphin

Senior Member
Messages
17,567
What is the difference between CCC1 and CCC2?
Well, one difference is that it has different levels, which I like as somebody who for the first few years, was relatively mildly affected but was pacing so didn't have very noticeable ongoing symptoms (but wish I was diagnosed then as I don't believe I would have become severally affected):

Meeting research versus clinical criteria: Table 1 provides all the symptoms as specified in the Revised Canadian ME/CFS case definition. Some meet full criteria whereas others who are very symptomatic do not meet full criteria. We argue as we did with the Pediatric case definition (Jason et al., 2006) that those that meet full criteria are more homogenous and might be best used for research purposes and we now classify these individuals as meeting the Research ME/CFS criteria. Still, others might have the illness but not meet one of the required criteria. We classified such individual as meeting Clinical ME/CFS criteria. These individuals needed to have six or more months of fatigue and needed to report symptoms in five out of the six ME/CFS symptom categories (one of which has to be post exertional malaise, as it is critical to this case definition). In addition, for autonomic, neuroendocrine and immune manifestations, adults must have at least one symptom in any of these three categories, as opposed to one symptom from two of the three categories. We also have a category called Atypical ME/CFS, which is defined as six or more months of fatigue, but having two to four ME/CFS symptoms. There is also a category called ME/CFS-Like, which involves exhibiting all criteria categories but for a duration of fewer than 6 months. Further, a person could be classified as having ME/CFS in remission if the person had previously been diagnosed with CFS by a physician but was not currently meeting the Research ME/CFS Criteria, Clinical ME/CFS criteria, or Atypical ME/CFS criteria and must have 0 or 1 classic ME/CFS symptoms.
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
I think the reasoning was that because we don't have a medical course of study/specialty in ME/CFS, there are no experts. Or something. Yes, more bullshit.

More catch-22s.

Here's something I don't understand. Somehow the discussion centered around the Canadian Consensuses 1 and 2. Dr. Fletcher offered Dr. Klimas's comments on these. What about the ICC. Klimas was an author on this, and according to the introduction section, it improves on the CCC.

That's a good question. Partly due to newness, and partly due to ignorance I feel.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I do think that its very telling that the CDC did not remove their biased education material (the toolkit). They are actively engaged in reaching out to the community though - but is this genuine engagement, or a basis for spin? They are not engendering trust by keeping false and misleading information on their site which can be very harmful to medical understanding. They do not seem to realize that by not fully explaining their actions they are actually creating more distrust, due to the long and destructive history of the CDC in ME matters. They may get it right in the long run, but my guess, and its only a guess, is that some people in the CDC are still old guard and are obstructing progress. The new guard is therefore constrained to play an internal political game. This may be why their actions look strange from the outside. Keeping up pressure on the CDC is still a good idea in my opinion. They have yet to establish that they are advancing the understanding of ME in any substantive way.
 

Hope123

Senior Member
Messages
1,266
I will continue to applaud patients and advocates that attend and testify at CFSAC, but I don't plan to spend any more time and energy on them. The ex-officios invoke Catch-22 after Catch-22 and would have us believe that no one actually holds any accountability for ME/CFS. Trying to keep up with rebutting their half-baked defenses is like whack-a-mole. A few of the noted CFSAC members are great, but many of the CFSAC members don't seem to realize how completely ineffectual is the CFSAC. And not realizing the nature of their position relative to HHS, the CFSAC cannot think and act strategically. With things as they are, CFSAC is a total or near total waste of our energy, as it is clearly not meant to foster change or able to do so given such intransigence on the part of CDC and NIH. In that respect, I would encourage people to spend less energy on CFSAC and much more on other advocacy efforts that are more likely to bring change, I.e. lobbying your congress people, developing educational materials or videos, writing letters to media personalities and news sources, etc. I know I've personally spent too much precious energy on a body that my intuition tells me will not produce change. We need to find a way to exert real pressure on HHS if we hope to see change.

I agree that CFSAC can be difficult -- you can see by my prior messages! -- and that people will have to figure out for themselves which methods fit their energy levels, personality, etc. and which are most efficient.

But I would caution people not to give up just yet. I know people are tired -- especially the folks who've gone to CFSAC every year for the past 10 -- but we don't have a lot of venues right now to work through and there are only a few advisory committees for ANY medical condition. I've had a lot of non-CFS situations in my life where I just wanted to throw in the towel, throw up my hands, walk away -- had to grit my teeth when walking in the door and deal with someone angry at me for being the messenger every day for weeks on end -- but I pushed on and the situation improved, the person changed, they saw my viewpoint, I won the argument, etc. Unfortunately, change takes a lot of time and energy. The thing that sustains me: I know we are right and they are wrong and that science and history will drag people kicking and screaming towards the truth whether they want to or not.

Having said that, alternate strategies should always be explored and tried.
 

usedtobeperkytina

Senior Member
Messages
1,479
Location
Clay, Alabama
Doesn't it sound like a series of vicious circles? We can't get funding because there are not enough proposals, but there's not enough proposals because there's no funding. We can't get a good team of experts evaluating proposals because there's so few researchers that the same people who want to propose research would be the same ones evaluating the research. :thumbdown: But we can't get more researchers into the field if there's no funding.... It just keeps going around and around and around....
Absolutely. I have some pictures in my mind now of circles.

Tina
 

Shell

Senior Member
Messages
477
Location
England
It's the inflexibility of thought I find astounding. Instead of thinking "Here's a multisystem illness, lets have multidisciplinary approach," they seem to be saying "multisystem, does not compute...error error" like some badly made robot.
It's so shallow. How did people with so many letters after their name get to be so educationally "special"?
 

SpecialK82

Ohio, USA
Messages
993
Location
Ohio, USA
Could we do better? I mean this as a serious question. I'm having a vision of us crowd-sourcing somehow. I'm sorry that my brain doesn't retain information, so I'm forced to talk in generalities. But there are a number of excellent ME and CFS organizations, which are producing quality written material - about diagnostic criteria, current research, good doctors, treatment protocols, etc. What if the best ones pooled information into a meta-website, structured from the get-go as the ME and CFS gateway for information.

It wouldn't be a place for argument or discussion. It would be a repository for what we all DO agree on.

Madie

Madie - I really love this idea. A website for everyone.

I had an idea that would be tangential to this one that I discussed on another thread recently. We are starting to see patient organizations pulling together and working cohesively to get their message out at CFSAC. I think we are seeing positive movement here within the committee. Also, this committee seems to be more open than they have been historically, to interacting with advocacy groups. I think we need to leverage that.

What I would like to see is for every patient, support group, advocacy group, etc. to be plugged in to one cental place. We can all agree on at 80% of the issues before us. Let's use the power of our numbers to really speak and act as one voice on that 80%. I don't really care about the 20% right now, details can be worked out later, when we are much further down the road. As you are suggesting, it would not be a place to argue, it would only be a place to join together and to disseminate information - for example, petitions to sign, information on voting in contests to raise funds for our community. It needs to be a go-to site for all of us fighting for the same cause.
 

leela

Senior Member
Messages
3,290
Could we do better? I mean this as a serious question. I'm having a vision of us crowd-sourcing somehow. I'm sorry that my brain doesn't retain information, so I'm forced to talk in generalities. But there are a number of excellent ME and CFS organizations, which are producing quality written material - about diagnostic criteria, current research, good doctors, treatment protocols, etc. What if the best ones pooled information into a meta-website, structured from the get-go as the ME and CFS gateway for information.

It wouldn't be a place for argument or discussion. It would be a repository for what we all DO agree on.

Madie

Yes, Madie, right on! This coincides very well with Sameul's last blog post, which I think merits serious pondering:
http://thekafkapandemic.blogspot.com/2012/09/politics-and-rage.html#more

The time is ripe and right for our collected power and wisdom to pool and spread.

It was only able to watch a small amount of the meetings, but I thought the presidential attention to the subject had the members...sitting up a little straighter, so to speak.