Finally Getting ‘IN’

October 1, 2010

Posted by Cort Johnson

Fight for XMRV and CFS ResearchXMRV has turned the ME/CFS world upside down and in a very good way. In the past year a‘cast-out’ disorder has shown signs it may be getting ‘in’; getting into major research facilities, getting into the discussion of major officials, getting into the groove that most diseases participate in…. in short its shown some signs of being treated like a real disorder that makes people sick.

SOME GOOD SIGNS

New Researchers – Nowhere has this been better illustrated than in the research community. NCI Lab Chief Dr. Ruscetti is now clearly wholly committed to studying ME/CFS (a disorder he’s thinks is ‘fascinating). The appearance of a Lasker Award winner on the ME/CFS community’s doorstep (Dr. Alter) was nothing if not shocking and was trumped only when we heard that ace pathogen hunter Ian Lipkin was now devoting his time to not just one but two ME/CFS pathogen studies. NIH Director Francis Collins kicked off the XMRV/CFS workshop and then actually stayed for the CFS presentations. Finally, there was the rather stunning assemblage of significant names in the field that the CAA was able to convince to take multi-year stints on the federal advisory panel for ME/CFS (CFSAC). ME/CFS finally shows signs of starting to get ‘in’ in the research community.

Patients Getting ‘In” – The patients are getting ‘in’ as well. Perhaps the most shocking evidence of that was Bob Miller’s ability to get in to the NIH and arrange an hour-long meeting with upper level NIH officials shortly before the XMRV Workshop. Bob has no clout – he’s not affiliated with or speaking for any organization; he’s simply an ME/CFS patient with a mission and on that day that was all he needed to get ‘in’. (Not only did he and others get ‘in’ but they were actually escorted in via a private entrance in the back by agency personnel. :) .

Patients Trying to Get In - XMRV has presented new opportunities for action and people in the ME/CFS Community have responded. From the XMRV Global Action to the ME/CFS Action List to Project Enough to the SockItToME group to Dreambirdies marvelous video’s to the ME/CFS Worldwide Patient Alliance ME/CFS patients around the world are starting to building the networks needed to hammer our way ‘in’. Organizations Banding Together to Get ‘In’ – - What the patients have done on an individual level the CFIDS Association of America has done on a group level. In the Campaign to End Chronic Pain in Women the CAA partnered with organizations representing 50 million ill women to demand that these disorders finally get ‘in’ to research community and get the funding they deserve.

Opening Opportunities For Researchers To Get ‘In’ – the CAA also got language passed in a pending Defense Appropriations Bill that will allow ME/CFS researchers, for the first time, to compete for a share of the $50 million dollar Congressional Directed Medical Research Program (CDMRP) – an apt place for us given the many similarities ME/CFS bears to Gulf War Syndrome. Approximately a fourth of the almost 700,000 GWS vets have a chronic multisystem illness characterized by fatigue, cognition/mood and muscoskeletal symptom. Add Iraqi and Afghani war veterans in and you’ve got a huge population of young and disabled veterans. The trickiest thing is getting into these programs; once you get ‘in’ you usually stay in and now ME/CFS is ‘in’ the Congressional Directed Medical Research Program.

The New CFDC CFS Team Leader – Another Chance For Change – Let’s not forget Dr. Reeve’s dismissal this year and the opening that opened up. Despite substantial outcries from the patients and professional groups (CAA, IACFS/ME and CFSAC) Dr. Reeves had seemingly successfully’ passed his ten-year review but just as he must have breathing a sigh of relief he was gone – a huge success for the ME/CFS Community. The CDC opened a job search for his position about the same time the HIV/AIDS team decided there was no XMRV in CFS and then kept it open as it was due to expire not long after the Alter/Lo paper came out. Why did they that? Did they not get the right applicants or are they waiting for more clarity to determine what kind of researcher they want? We don’t know but the position presents the opportunity for the right kind of researcher to get ‘in’ and for substantial change in the CDC’s orientation to ME/CFS.

If all these opportunities worked out we could see a greatly changed landscape for ME/CFS in the next few years.

MISSING THE BIG PIECES

For the first time we’re knocking on the door but we’re not in by any means. Diseases that are “in” have major labs devoted to them, a large coterie of respected researchers applying for grant after grant every year and real institutional support …we have none of those. What we’re missing is a commitment for change from the government.

“It’s the Money Stupid” – Most importantly we have no money and no promises for money. Recognition is great…interest from top officials makes us all feel good and gives us hope – but that’s all been done before. It’s all about the money and if we don’t get money and promises its all for naught – a mirage that passed before a thirsty communities eyes and then disappeared leaving behind the same old desert moonscape. We need funding. It’s as easy as simple as that. Show me the money….

The ME community is putting together some of the elements it needs to push its way ‘in’ and now the next opportunity to impart our aims is upon us: the CFSAC meeting, one of the big events of the ME/CFS year, runs from the 12th-14th.

Watch the federal officials closely. Listen to what they say. Do you hear commitments or talk? Federal officials have used budgetary problems for years now to explain why getting money is tough. But XMRV has changed things and ‘hot’ medical topics get huge increases in funding in any budgetary environment. Now it’s our turn.

There will be an ‘Action’ devoted to the CFSAC meeting.

Next Up: Getting In #II – the CFSAC Meeting

8 comments

{ 8 comments… read them below or add one }

John October 1, 2010 at 8:42 am

I’ll see your ‘hearing commitments vs. just talk’ and raise you one ‘seeing action vs. only hearing commitments!’

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Cort October 1, 2010 at 3:13 pm

I’ll take your raise! Lets see some action. I think we’ll have to push for it.

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chris October 1, 2010 at 8:44 pm

This is an important post and thank you for it Cort! I would present a few instances as seen from my very small perch.

There is a great change in the “atmospherics” of this illness. It began several years ago and is now a bit dizzying. Who knows where this is going to lead? These are very exciting times and hopefully there will be a consolidation and past differences will be forgotten. There are many people who have worked many years on this illness and the more of them that can get together the better – with new situations added.

I cannot emphasize enough the public posture of InvestinME in getting people together. I know that other people have done similar things, but my showing up at InvestinME conferences, through happenstance, has given me a good picture of what can happen when like-minded people get together and exchange ideas. More of this is happening everywhere now and the conferences coming up are just going to heighten and expand the information. I notice that Burrascano, Brewer and Montoya and Conant are all speaking at the ILADS conference in Jersey City in October and this is unprecedented. It is beginning to be difficult to follow all the threads but when XMRV, MLV-related viruses crosses into the big HIV conferences, it will be the big time.

Thanks for this Cort. You are the best.

Chris

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John October 2, 2010 at 7:36 am

One thing that the whole XMRV issue has made clear is the CDC’s utter failure in regards to CFS. Twenty-plus years after the creation of the 1988 ‘Holmes’ criteria and researchers still can’t even agree on who has the goddamn illness, much less going about subtyping via biomarkers and having effective treatments! What a *(&^ing joke!

Also, the CFSAC is losing lots of ‘core’ CFS members such as Klimas, Jason, Bateman, etc., Dr. Levine excepted. While the new people might be considered ‘big names’, how knowledgable are they about CFS? Will they hold CDC’s feet to the fire, or will they do the same old professional curtesy bullshit and listen attentively while patients (and researchers) go on and on (and on and on) about how broken the CDC’s CFS research program is, followed by the CDC representatives saying how a-ok/utterly great/’#1 priority’ their CFS program is, and then… nothing? We need people knowledgable about the history of CFS, not just a bunch of people who simply go to the CDC’s CFS website every once in a while in order to brush up on the ‘latest (mis)information’.

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Cort October 2, 2010 at 10:10 am

Good points John. We are getting big names – names who may be better at negotiating the levers of government but they are not nearly as conversant with ME/CFS as our ‘champions’ and we will lose something on that end. That is the price we will pay as new figures get brought into the field. On the other hand I hardly think of them as pushovers – I must think that given their prominence they may have the clout to push the govt to act.

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Cort October 2, 2010 at 10:12 am

I agree completely about Invest in ME – what a job they have done! I didn’t know about all those names at the New Jersey conference! Conant too? That is news! :)

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chris October 2, 2010 at 5:46 pm

Cort,

It is two different conferences, the NJCFS conference on October 17 with Levine and Mikovits in Eatontown, NJ (Don’t ask me where Eatontown, NJ is although I have been there three times) and the ILADS conference in Jersey City on October 15-17th with Burrascano, Montoya, Brewer and Conant. Conant’s talk is “What we can learn from HIV”. This will be interesting.

Chris

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Cort October 4, 2010 at 9:12 am

I got pretty excited there :). Thanks.

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