Spring CFSAC 2013 Meeting live streaming starting today - Weds 22 May

[Jeannette Burmeister]

My impressions of the meeting:

http://thoughtsaboutme.com/2013/05/25/thoughts-on-the-may-2013-cfsac-meeting/

 

[Ember]

My impressions of the meeting:

You describe Dr. Maier's outburst: “Such self-pitying outburst in the face of unending patient suffering—suffering that doesn’t take a break for weekends, that lasts for weeks, months, years, decades—was plain grotesque.”

I'm still not sure whether to take her outburst at face value. When I was trained in bargaining, I was told that negotiators never lose their tempers. They use their anger.

 

[justinreilly]

I agree with Dr Klimas on a bunch of stuff but not deconditioning. I went from very fit and well to this state in days, it was not deconditioning. Of course, due to low activity I am now a bit de conditioned but I don't think challenging that without first treating the cause is a good idea - quite the opposite in my experience.

The danger is that government love this kind of 'treatment' because it is so cheap! that in my view, threatens to take the focus of the right areas.

I could not agree more, snowathlete!

 

[WillowJ]

fwiw, NK cell function could be used like ANA. low NK cell function is found in cancer and other conditions (I do not recall seeing depression on medical sites but it's possible; depressive diseases do share pathology with other major diseases).

ANA is used as part of the diagnostic profile for Lupus and RA and Sjogren's, among others probably (also ANA overlaps with the population considered to be healthy - though as far as I know, "'healthy' people with positive ANA" could be us!). They also use clinical presentation (i.e. signs symptoms like joint pain, cognitive disturbance, fatigue - yes, fatigue, rash, joint swelling/redness and so on) to diagnose these diseases. And other diagnostic tests.

 

[justinreilly]

Gabby,

That was really great testimony you gave!! one of the best I've ever heard! Thank you.

 

[justinreilly]

Unger: The CCC is complex and hard to understand.

Holderman: If the patients understand the CCC, certainly physicians should be able to understand it.

Brilliant!!

 

[JT1024]

There is a group card to thank Eileen Holderman here: http://www.groupcard.com/c/k4iBomFSLpe

 

[Andrew]

I sort of took for granted that everyone would realize who Mary Ann Fletcher is. She is actually one of our unsung heros. She worked on many of the ME/CFS studies with Klimas. But because she was working behind the scenes, she never got much recognition from the ME/CFS community. https://www.ncbi.nlm.nih.gov/pubmed?term=(Klimas[Author]) AND Fletcher[Author]

 

[Sasha]

There is a group card to thank Eileen Holderman here: http://www.groupcard.com/c/k4iBomFSLpe

Done - thanks for posting the link.

 

[Nielk]

A good account of the "fireworks" at the end of cfsac meeting from Occupy CFS here.

 

[WillowJ]

I sort of took for granted that everyone would realize who Mary Ann Fletcher is. She is actually one of our unsung heros. She worked on many of the ME/CFS studies with Klimas. But because she was working behind the scenes, she never got much recognition from the ME/CFS community. https://www.ncbi.nlm.nih.gov/pubmed?term=(Klimas[Author]) AND Fletcher[Author]

the both of them are awesome. I wasn't able to watch this year's CFSAC, but I've seen both of them in prior years and they are great. They speak up and say stuff for us. They push for faster decisions.

 

[Ember]

I'd have liked to then hear questioning of Maier regarding the selection of those who approve/disapprove grants and what the issues might be there - and how that situation might be changed. And a critical question to ask would be: does Maier have the power to remove those dissenting grant reviewers? Because it's only her fault that this is happening if she does...

Ah...perhaps you mean the past minutes of CFSAC meetings? Any idea when? Don't really have time to read through them all...

I can't comb through more of the minutes, Mark. But this exchange from November 2011 may give the flavour for how circular these discussions have been:

[Questions for Dr. Kitt] Your message to us repeatedly is how do we get more applications? What I hear from investigators is that because it is an SEP, sometimes the membership changes so that the reviewers are different to the panel when the revisions come in. These reviewers sometimes have new sets of issues. I recognize that you cannot have a standing committee without more applications, but how do we deal with this issue of a different panel reviewing revised applications?

Dr. Kitt: As far as continuity of reviewers, this is not unique to this SEP. It is true of every study section. We do not guarantee continuity of reviewers. Since the number of applications is small and then the number of reviewers is small, there is always the possibility of disclosing a reviewer's identity, which we cannot ever do. We try to have at least one person return and more if needed. It is based on the expertise. The applications are different every time so we need new people to come in.

I seem to recall hearing too that the few who are knowledgeable in the field are all applying for grants. So they can't serve as reviewers. So the reviewers aren't knowledgeable the field. So too few grants are approved. So new applicants aren't attracted to the field. So the few who are knowledgeable in the field are all applying for grants, etc., etc.

 

[Mark]

I can't comb through more of the minutes, Mark. But this exchange from November 2011 may give the flavour for how circular these discussions have been
...
I seem to recall hearing too that the few who are knowledgeable in the field are all applying for grants. So they can't serve as reviewers. So the reviewers aren't knowledgeable the field. So too few grants are approved. So new applicants aren't attracted to the field. So the few who are knowledgeable in the field are all applying for grants, etc., etc.

Thanks for that Ember, that makes a lot of sense. The answers (from the NIH rep?), I expect, are simply answers on how the application and review process works, right across the department, for all budget heads: anonymous review and panels that change through the course of the process sound like they are standard practice for the department for all funding, so there's no realistic prospect of changing that as a policy and hence no point in anyone complaining about it.

But that's a great insight that, for any field, especially any 'new' field or paradigm shift, with a relatively small pool of researchers, with few sources of funding, where all the researchers are applying, the problem is that none of them can also sit as reviewers and therefore the reviewers are mostly from the 'old-fashioned' camp. That does sound like a crucial dynamic and a fundamental problem to overcome. It sounds like a hurdle that would need to be overcome for any new field to be able to get properly started. Logic suggests that they only way to "boot-strap" out of this situation would be if some researchers were to forego funding from the agency in order to serve as reviewers - and form a sufficient majority to kick-start the field and get us out of the chicken-and-egg situation. Then, instead of the vicious circle, the virtuous circle - of increased funding, increased applications and increased interest in the field - can begin. Since what's being described in the NIH answers is simply how the system works, as a whole (not just for ME/CFS), it may not be realistic to try to change or circumvent the way all NIH research funding works, so a way round the roadblock needs to be figured out. Sounds like the only answer to that problem is: get more good researchers onto the list of grant reviewers. Down to both NIH and the research community, together, to work that one out?

 

[Shell]

I've been watching some of the Cfsac meeting vids from last year and the year before on Youtube. They seem designed to help reduce the surplus population as they leave you with an urge to jump off a tall building (if you were well enough to climb the stairs).

I am coming to the conclusion that the only way ME patients will see a light at the end of the tunnel, that isn't the train coming to run us down, is if all the money other similar diseases get (such as MS) leads to a breakthrough that can help us.

As for the idea that poor didum doctors find the Canadian Criteria too difficult to understand; when you think that many of us with no medical training and plenty of brain fog understand it, I am beginning to think my suspicion that most medics slept through med school, if they attended at all, and can't read research might be right after all.

 

[Ember]

Sounds like the only answer to that problem is: get more good researchers onto the list of grant reviewers. Down to both NIH and the research community, together, to work that one out?

Your proposal would involve researchers' withdrawing from the field and submitting fewer applications, which would only exacerbate the problem as characterised by the NIH. How about designating special funds to ensure a higher rate of application approval? Such affirmative action, unfortunately, has limited NIH appeal. Hence the mounting frustration.

 

[WillowJ]

the CCC or ICC really doesn't seem much more complicated than a diagnostic criteria for Lupus or MS, for example, but to be fair, specialists are the ones who apply those types of criteria (not usually primary care docs).

Doctors are programmed to 1) learn something in med school (and possibly educational conferences) and 2) rigidly apply that training.

Generally speaking, it takes a PhD (or MD/PhD) to critically evaluate things, think about stuff, do something unusual/ not taught in med school. Or an MD who was taught by a PhD who valued critical thinking (or otherwise came upon value/skills of critical thinking).

I still think our own ME/CFS doctors should form their own speciality, Neuro-Immune Disease. Add GWI docs and whomever else makes sense. And treat MCS, etc. as well.

I agree that DHHS should certainly do something to attract more researchers and clinicians to the field and figure out how to get them knowledgeable about what we actually have across all severity levels.

 

[Andrew]

IMO, the comment she made about tLhe CCC being complicated is nothing but a smokescreen. She knows doctors are intelligent enough to use a checklist.

 

[barbc56]

Please keep in mind that I haven't been here for a while. I've not only been down but also out.

From what I've read posters are putting a lot of thought into their responses and that takes time something we don't always have the energy to do.

I don't know if this meeting is the venue for this but has anyone asked these people what they suggest we do to increase funding, knowledge about cfs/me, etc. On the one hand this might be illuminating. On the other I can only shutter if the responses are the usual bureaucratic speak.

If this has been discussed here, let me know. I plan to read all of this when feeling better.

Dentist??? Dentist??? WTF?????

 

[Ember]

I don't know if this meeting is the venue for this but has anyone asked these people what they suggest we do to increase funding....

Increase the number of successful applications.

 

[frenchtulip]

http://grants.nih.gov/grants/PeerReview22713webv2.pdf I was looking on the NIH website to try to understand the criteria used in selecting peer reviewers. Under Expert Assessment at the above URL, I saw this.
"Also, in certain cases, public representatives
may be recruited to provide perspective
from the patient or advocacy point of view . . ."
I wonder if any public representative has ever been recruited for an ME application to provide perspective from the patient or advocacy point of view.