Next CFSAC meeting June 16-17, 2014

[Nielk]

They are discussing whether P2P should be mentioned in the recommendation for a data collection repository. Since we don't know what the result of P2P will be. Fred Friedberg is fighting to include P2P because he says that experts are included in there and he has faith in that system. He thinks that we need to work with and trust all governmental agencies.

 

[Rrrr]

fred f. is talking about P2P, and clearly he does not understand the history of the gov't and ME/CFS.

 

[Rrrr]

montoya to the rescue! saying that the P2P (which has no me/cfs experts including) is flawed.

 

[Nielk]

Montoya is fighting for us very effectively. He explains why in the case of ME we need specialists on committees to evaluate the disease ... and gaps. Kraftchick agrees with him and of course Donna is the one who brought it up - leaving P2P out.

 

[Nielk]

Dane Cook is singing the praises of the P2P. We should be grateful for it.

 

[Rrrr]

@Nielk, your updates are sooooo appreciated!!!! please keep them up.

 

[Nielk]

They just voted against leaving P2P out - 6 to 4. The ones for are - Donna, Kraftchick, Montoya and Fletcher.

 

[Nielk]

It seems like leaving this rec. for an rfa with the P2P in means that we would have to wait till 12/2005 to possibly get funding. This is because that's how long it will take to get the P2P report. (very bad move - imo)

 

[Nielk]

Some want to phrase the rec. in a way that it has a better chance to be accepted by NIH. In other words, go along with NIH - regardless of what the outcome could be.

 

[Nielk]

This is so ridiculous. Why even bring any recs? Just tell NIH - do as you please, because you know best? ( my sarcastic comment)

 

[Nielk]

There are too many people on this committee who are government pleasers - not patient pleasers. I thought they are serving for our benefit. (my personal comment)

 

[shannah]

'Drop dead date' - good expression to convey the urgency.

 

[Nielk]

They passed the motion putting in the date of November 2014 or as soon as feasible for the rfa.

 

[Sasha]

There are too many people on this committee who are government pleasers - not patient pleasers. I thought they are serving for our benefit. (my personal comment)

I understand why you say that but my perception is a little different - I think that the people pushing for the P2P to be mentioned in the RFA request are doing so because CFSAC requests for RFAs have always been turned down before and because Fred Friedberg's RFA request off the back of this year's IACFS/ME conference was turned down by the NIH because (the NIH say) P2P needs to be done to inform an RFA.

Please correct me if I've got that wrong, someone! But that's my current understanding and so my perception is that the people wanting to mention P2P aren't in favour of P2P but of finding a way of breaking the deadlock of NIH refusing CFSAC's RFA requests.

 

[Nielk]

Next is a speaker - Mr. Kuhn, talking about the new ruling on social security for ME/CFS.

 

[Nielk]

New ruling - 14-1p https://www.federalregister.gov/art...i-evaluating-claims-involving-chronic-fatigue

 

[Nielk]

To come up with this new ruling they relied on

CDC (Fukuda)
CCC
ICC
SSA's adj. experience

They look at symptoms
medical signs
lab findings

 

[Nielk]

Additional symptom for new ruling

muscle weakness
disturbed sleep patterns
visual difficulties
orth. intolerance
respiratory diff.
cardiovasc. diff.
gi discomfort
urinary and bladder

 

[Nielk]

lab abnormalities

high EBV titers
abnormal brain MRI
neurally mediated hypotension

HHV6 may support diagnosis

 

[Nielk]

I understand why you say that but my perception is a little different - I think that the people pushing for the P2P to be mentioned in the RFA request are doing so because CFSAC requests for RFAs have always been turned down before and because Fred Friedberg's RFA request off the back of this year's IACFS/ME conference was turned down by the NIH because (the NIH say) P2P needs to be done to inform an RFA.

Please correct me if I've got that wrong, someone! But that's my current understanding and so my perception is that the people wanting to mention P2P aren't in favour of P2P but of finding a way of breaking the deadlock of NIH refusing CFSAC's RFA requests.

It is true that this is what they say is their reasoning.
The point is though that many now who see the dangers of this P2P, want it stopped. By putting this into the rec. it gives it legitimacy.