Watch Oct 3-4 to show the US gov't you care about ME/CFS

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Dolphin

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Hope123 said:
The June meetings are posted online BUT it took the government more than a month to have them up. (There was no streaming online live in June; people had to sit next to their phones for 8 hours.) This is TOO long. If one is trying to work with media, legislators, or other people and want to reference a governmental source, these folks are not going to wait a month. By that time, it's old news.

It also took more than 3 months for them to post the CFSAC recommendations and took several people writing in for them to do so.
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Fair points.
 
alex3619

alex3619

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Susan Meier - wow, I never knew the NIH was so fantastic! Look at what they do for everyone else. Lots of info on who they are. We need to know what they are doing. We need to know how things can improve. Some of what was reported on was peripheral research - like fatigue and sleep, pain, but they did fund XMRV research (Lipkin et. al.). The intro is mostly spin.

One important thing is they made funding to the study showing increased association of lymphoma with CFS. They also have a bunch of plans that are still unfolding or intended.

Ongoing research is broad. Last year $6.3M, this year 18% of applications were funded. Overall targeted and non-targeted funding is at 28% and 30%. The total amount is still dismal though.

On discussing how to improve funding, by using an autism analogy, she commented on how it improved was increasing researchers and results, step by step, and action by advocates.

Dr Fletcher (?) commented that funding applications and processes don't really suit multi-institute research.

An issue that is identified, again, is that there are not enough ME or CFS research applications coming in.
 
Hope123

Hope123

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alex3619 said:
Susan Meier - wow, I never knew the NIH was so fantastic! Look at what they do for everyone else. Lots of info on who they are. We need to know what they are doing. We need to know how things can improve. Some of what was reported on was peripheral research - like fatigue and sleep, pain, but they did fund XMRV research (Lipkin et. al.). The intro is mostly spin.

One important thing is they made funding to the study showing increased association of lymphoma with CFS. They also have a bunch of plans that are still unfolding or intended.

Ongoing research is broad. Last year $6.3M, this year 18% of applications were funded. Overall targeted and non-targeted funding is at 28% and 30%. The total amount is still dismal though.

On discussing how to improve funding, by using an autism analogy, she commented on how it improved was increasing researchers and results, step by step, and action by advocates.

Dr Bateman (?) commented that funding applications and processes don't really suit multi-institute research.

An issue that is identified, again, is that there are not enough ME or CFS research applications coming in.
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Yeah, it was mostly "spin."

Dr. Bateman isn't at the meeting. If it's the dark-haired physician, it's Susan Levine. If it's the older white-haired immunologist, that's Dr. Fletcher.
 
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Valentijn

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Is Sandra Kweder from the FDA going to say something relevant to ME soon, or is this just a random history lesson?

I get the feeling it's going to lead into "it's our duty not to give you drugs".
 
Nielk

Nielk

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I like her but, I'm not sure what she is saying? Are we to buy shares of the FDA?
I'm guessing it's an introduction.
 
alex3619

alex3619

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FDA, Admiral Sandra Kweder: Controversy on definitions implies heterogeneity.

We need homegenous cohorts, defined measures of outcomes, and good biomarkers. Biomarkers must correlate with function, they don't have to be diagnostic. The more heterogenous the cohort, the larger a clinical a trial is required.

PS My comment: If this can be done, say goodbye psychobabble.
 
Hope123

Hope123

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alex3619 said:
FDA, Sandra Kweder: Controversy on definitions implies heterogeneity.

We need homegenous cohorts, defined measures of outcomes, and good biomarkers. Biomarkers must correlate with function, they don't have to be diagnostic. The more heterogenous the cohort, the larger a clinical a trial is required.

PS My comment: If this can be done, say goodbye psychobabble.
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The other option to large clinical trials are smaller clinical trials that ONLY look at a specific subset -- e.g. people who fit both Canadian and Fukuda, say, or only people with viral onset, etc.
 
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