NIK Sok - Summary - Blah blah blah, NO FUNDING!

[CBS]

I'm going to keep this short.

Nancy Klimas - we could get to the bottom of ME/CFS for an incredibly small amount of money, probably about what is being spent on a single HIV study (amongst hundreds of other ongoing HIV studies).

Vivian Pinn - (Not responding to Dr. Klimas directly but speaking on her comment) [Perhaps we could if we cared enough but] we're not going to give you any more money [so get used to being at the very bottom of the funding heap.]

Talk of caring is cheap.

I have a huge amount of respect for the researchers working hard to figure out this disease. I'm simply no longer able to hear, "blah blah blah... NO FUNDING, honest we care, blah blah blah" and then watch our so called advocates accept "blah blah blah NO FUNDING" without wanting to throw up at the insincerity and false expression of concern.

ETA - I didn't mean to leave out the clinicians. The few who are helping are wonderful. Dr. Friedman's presentation was brave, necessary and long overdue. The call for more primary care physicians was just rich given the costs extracted from anyone trying to educate tomorrow's doctors. It's the so called University of Medicine & Dentistry of New Jersey that ought to be investigated.

 

[Nielk]

I share your frustration 100% but, to be fair, we need to separate the clinicians from the Government representatives.
The funding has to come from the Government and our anger should be targeted towards them. The hard working doctors who try every which way to treat us and with their limited resources try to run studies should be respected ans appreciated.

 

[eric_s]

What sum did Nancy Klimas have in mind? Does anyone have an idea?

I agree that in the end all the nice words will not help much if they don't increase the funding. If the BWG or Lipkin confirm XMRV i'm pretty positive they will allocate more money, but if they don't find it, i'm not too sure.

Maybe i'm getting on people's nerves by saying it again, but it's what i believe... The only source we can control and rely on is ourselves. We have to combine our forces and help ourselves.
By raising money from within our community, but i also believe that we can only get our countries and the public to give more money if we have bigger and better organisations. So for me this is the key, stronger organisations. We need to be able to make petitions signed by at least tens of thousands, do large demonstrations etc. if necessary. If we don't have good groups that do the right things and people join and support them, i don't see how we can get anyone to listen, and more importantly, to act.

If the Whittemores had not taken things into their own hands and founded the WPI everyhting that has happened in the last one and a half years of so would probably not have happened. If we don't do it ourselves, we can probably wait indefinitely.

 

[Dreambirdie]

I have a huge amount of respect for the researchers working hard to figure out this disease. I'm simply no longer able to hear, "blah blah blah... NO FUNDING, honest we care, blah blah blah" and then watch our so called advocates accept "blah blah blah NO FUNDING" without wanting to throw up at the insincerity and false expression of concern.

Yeah, the blah blah blah has really gotten old... so old it's beginning to rot.

And Suzanne Vernon is no advocate at all. She's a clueless, useless figure head for an organization that has failed to do anything for anyone but itself.

Just listen to the whole lot of nothing she proposes to help us with... "define fatigue" "define caseness" (WTF does that mean!) "silos... that need to be federated..." ???

This woman needs a serious education on the suffering of CFS patients, to fill in the "gaps" in her own blank head...before she would even qualify for the job that she now has, and is being paid over 100K to do.

Really pisses me off. :Retro mad:
Please sign the petition to disassociate ourselves from the CAA:
http://www.change.org/petitions/pet...ion-of-america-as-our-advocacy-representative

[video=youtube;M8079s2xzu8]http://www.youtube.com/watch?v=M8079s2xzu8[/video]

 

[Dreambirdie]

Why is there NO FUNDING?

Here's the truth of the very ugly politics of CFS. Thanks to Kenneth Friedman for speaking out about it.

[video=youtube;KhB-701-BMU]http://www.youtube.com/watch?v=KhB-701-BMU[/video]

 

[justy]

Dr Friedman said it like it is. good on him.

 

[Dreambirdie]

Mary Schweitzer gave one of the best and most moving testimonies.

"The CDC website is embarrassing."

[video=youtube;8pWHgTswsX4]http://www.youtube.com/watch?v=8pWHgTswsX4&feature=related[/video]

"We are not fatigued people. We are very very sick."

[video=youtube;WZCoiET8n0k]http://www.youtube.com/watch?v=WZCoiET8n0k&feature=related[/video]

 

[usedtobeperkytina]

$150

MS has $135 million in the NIH extramural budget. 500,000 have it.

Some, including PANDORA, is asking for $150 million. 1 million Americans have it.

Both conditions are similarly chronic, similarly disabling, etc.

Time to "catch up."

 

[Hope123]

CBS, I agree with you. It will be important to write about this and other concerns to the CFSAC committee at least -- deadline is April 18. Note that the current two grant announcements specifically aimed at ME/CFS end in September this year.

http://orwh.od.nih.gov/CSF 2011/resources.htm

I think one of Dr. Mangan's purpose in inviting the co-moderators from outside institutes was to not only get their expertise/ input from fields outside CFS (e.g. the genetics NIH expert correcting and earlier point about how the cost of genome sequencing was now much cheaper, at about $2000/ sample, and declining and thus genome-wise studies were plausible) but also to expose them to ME/CFS and hopefully garner some interest from their institutes (which do have money) to consider sponsoring studies in ME/CFS. I also remembered at the beginning that he mentioned that some institute officials were watching a live broadcast rather than being there in person since they wanted to have enough space for attendents in the room. It will be interesting to see institute representatives report back institute reactions to S of K at CFSAC in May.

Also, I would encourage everyone to watch Christine Williams' (of AHRQ, who happens to have ME/CFS also) short talk where she speaks to political will. We're always told there isn't enough money for a Center of Excellence, etc. etc. but witness how autism and other disease conditions have managed to carve out money for funding for their illnesses despite all this -- it has to do with applying appropriate political pressure and/or finding a political ally.

 

[SOC]

I completely agree that we need more funding from the NIH -- that we are owed more funding. I'm still hopeful that the next budget will include more (whether it will be enough is always a problem, of course).

We heard NIH officials telling us that they can't promise to fund any specific research topics. Of course they can't promise it. They are working now from the budget approved for the Oct 2009- Sep 2010 fiscal year. That budget was planned in 2008-2009 -- long before WPI's retrovirus work. The ME/CFS research world is a mighty different place than it was in 2008/2009.

NIH officials can't promise us any funding on the spur of the moment. We might be able to influence the amount of money they allocate to ME/CFS in their next budget. What I heard was them asking for ideas for potential areas of research which they could take to their bosses to justify an increase in the ME/CFS allocation. That sounded positive to me.

 

[SpecialK82]

Also, I would encourage everyone to watch Christine Williams' (of AHRQ, who happens to have ME/CFS also) short talk where she speaks to political will. We're always told there isn't enough money for a Center of Excellence, etc. etc. but witness how autism and other disease conditions have managed to carve out money for funding for their illnesses despite all this -- it has to do with applying appropriate political pressure and/or finding a political ally.

Hope - did Christine Williams speak at the SoK or somewhere else? I would be interested in hearing what she has to say, I'm encouraged that someone in the gov't can actually relate to this illness.

 

[Hope123]

She spoke towards the end of the conference, before Suzanne Vernon IIRC. She also attended CFSAC in the past as the rep for AHRQ (Agency for Healthcare Research and Quality) and publicly spoke then also about having ME/CFS. You can probably find her talk when the videocasts are archived and come out in the future. She stated that before AHRQ, she worked as the healthcare policy expert for Sen. George Mitchell and what she learned was political will was important as anything else to get things done. (I'm giving you the gist of what I understood from her words.)

I have a relative who works in DC who has a similar view as well. Scientists don't like politicians to interfere/ dictate their work for good reasons but on the other hand, public health/ medical concerns also have to been taken into account when NIH or any other scientific group is accountable to the public for their work.

 

[eric_s]

MS has $135 million in the NIH extramural budget. 500,000 have it.

Some, including PANDORA, is asking for $150 million. 1 million Americans have it.

Both conditions are similarly chronic, similarly disabling, etc.

Time to "catch up."

Thanks, Tina. Keep on pushing for this.

Also, I would encourage everyone to watch Christine Williams' (of AHRQ, who happens to have ME/CFS also) short talk where she speaks to political will. We're always told there isn't enough money for a Center of Excellence, etc. etc. but witness how autism and other disease conditions have managed to carve out money for funding for their illnesses despite all this -- it has to do with applying appropriate political pressure and/or finding a political ally.

I agree. In the end every group is out there working to get as big a piece of the pie as possible. It's not a nice thought, but in some way we are in competition with them and if we want to get out fair share we must make sure our voice is as effective as theirs. We probably have a lot of catching up to do.

 

[shannah]

Bad News in Recent Budget Cuts:

In the Next Round of Budget Negotiation, Big Cuts for Health Research Are Coming
Rachel Riederer
April 11, 2011

..."one of the hardest hit agencies will likely be the National Institutes of Health (NIH), the worlds largest investor in biomedical research."

more details

http://www.thenation.com/article/15...t-negotiation-big-cuts-health-research-coming

 

[Nielk]

Bad News in Recent Budget Cuts:

In the Next Round of Budget Negotiation, Big Cuts for Health Research Are Coming
Rachel Riederer
April 11, 2011

..."one of the hardest hit agencies will likely be the National Institutes of Health (NIH), the worlds largest investor in biomedical research."

more details

http://www.thenation.com/article/15...t-negotiation-big-cuts-health-research-coming

I wish I would win the lottery. 90% would go for CFS study!

 

[justinreilly]

Got to agree with CBS and eric s. Join a grassroots ME org like IMEA or form your own! Let's raise our voices. We will not go to the back of the bus anymore!

 

[Snow Leopard]

In the Next Round of Budget Negotiation, Big Cuts for Health Research Are Coming

Apparently the NIH budget is to be cut by $260 million.

http://www.aolnews.com/2011/04/12/o...s/?icid=maing-grid7|main5|dl1|sec3_lnk2|55483

 

[SpecialK82]

Thanks for your reply Hope - I'll go back and look at the archived talk when it comes out. If we could figure out how to get things done it would certainly help!

 

[toddm1960]

Apparently the NIH budget is to be cut by $260 million.

http://www.aolnews.com/2011/04/12/o...s/?icid=maing-grid7|main5|dl1|sec3_lnk2|55483

Our fair % of research dollars, even if the their budget is cut by 260 million. Will still be more than we get today. We need to organize and let our voices be heard. :victory:

 

[Sasha]

Apparently the NIH budget is to be cut by $260 million.

http://www.aolnews.com/2011/04/12/o...s/?icid=maing-grid7|main5|dl1|sec3_lnk2|55483

Thanks for posting this - but look at what it means! According to that article:

"The National Institutes of Health, which funds critical medical research, would absorb a $260 million cut, less than 1 percent of its budget, instead of the $1.6 billion cut sought by House Republicans."

If the priority of ME research is to go up, as was the upshot from the NIH SoK conference, then a 1% cut in overall funding won't affect us - we should still see an increase in funding.

If the overall budget is about $30 billion (which follows if 1% of it is 260 million) and we got even a thousandth of it, we'd get $30 million.

I think that NIH cut is good news - it's hardly a cut at all if they make cuts to areas proportionately.