CFSAC meeting Oct 3-4, 2012

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!!!

 

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 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)

 

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

 

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.

 

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

 

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.

 

There is a Canadian definition two:

 

What is the difference between CCC1 and CCC2?

 

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.

 

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):

 

More catch-22s.

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

 

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.

 

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.

 

Yes, I consider that to be the root to many problems.

I think we need a new specialty for multi-system diseases, include fibromyalgia and Gulf War illness.

Tina

 

Absolutely. I have some pictures in my mind now of circles.

Tina

 

About that: http://p-a-n-d-o-r-a.org/ae.php

You can watch one here: http://p-a-n-d-o-r-a.org/Webinar2011AdvocExtra.php

Tina

 

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"?

 

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.

 

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.