Increase NIH funding - Another Excellent Jennie Spotila article

[SpecialK82]

Thanks @jspotila for reminding us where to focus our attention now:

http://www.occupycfs.com/2015/03/04/2014-nih-spending-on-mecfs-studies/#comment-117993


"There is no denying or avoiding the importance of the IOM report and its associated controversies, but ME/CFS advocates must keep eyes on the prize: NIH funding for ME/CFS research"

 

[SpecialK82]

Does anyone have any ideas as to how we can pressure the NIH to do more?

 

[Sasha]

Does anyone have any ideas as to how we can pressure the NIH to do more?

From Jennie's responses to comments on that piece, it sounds as though advocates have something in the pipeline, though she doesn't know details or timing. But we need to be leveraging the IOM report, the Hornig/Lipkin paper, P2P, all that stuff.

 

[Ember]

In their Draft Report, the P2P Panel argues, “A clear case definition with validated diagnostic tools is required before studies can be conducted.” The Panel adds:

Thus, for needed progress to occur we recommend
(1) that the Oxford definition be retired,
(2) that the ME/CFS community agree on a single case definition (even if it is not perfect), and
(3) that patients, clinicians, and researchers agree on a definition for meaningful recovery.

For research purposes, the NIH has neither a clear ME/CFS case definition, validated diagnostic tools nor any definition of meaningful recovery. The IOM Report further confuses the situation with Dr. Bateman commenting, “I don't recall anything in the IOM report that states the term Myalgic Encephalomyelitis, or ME, can not be used to describe someone who meets published ME criteria. The recommendation is stop using ME/CFS.”

 

[jspotila]

From Jennie's responses to comments on that piece, it sounds as though advocates have something in the pipeline, though she doesn't know details or timing. But we need to be leveraging the IOM report, the Hornig/Lipkin paper, P2P, all that stuff.

There is so much we could be leveraging right now. I am very anxious to hear more about what advocates are planning, because this opportunity has a limited life span on it.

 

[Ember]

I am very anxious to hear more about what advocates are planning....

MEadvocacy.org will likely seek “dramatically increased funding into biomedical research into the most severe, bedbound patients:”

MEadvocacy.org will not lose sight of this important goal, even as we seek to gain clarity about the IOM report and it's ramifications on this entire patient population. Please be on the lookout for a new blog post where we clarify MEadvocacy.org's positions on several issues, all with the aim of improving the lives of M.E. patients around the world.

 

[oceiv]

MEadvocacy.org will likely seek “dramatically increased funding into biomedical research into the most severe, bedbound patients:”

Will you also be seeking increased research funding for research into housebound patients?

 

[Ember]

Will you also be seeking increased research funding for research into housebound patients?

Your question would be better addressed to @caledonia.

 

[Sean]

“dramatically increased funding into biomedical research into the most severe, bedbound patients:”

All patients.

What severe, bed bound (and housebound) patients need first, and right now, is better basic secondary socio-economic support – money, stable housing, personal assistance with housework and general practicalities of day-to-day existence, transport, etc.

We have no idea how long before any serious treatment, let alone a cure, comes along. In the meantime, society can do that supportive stuff now, if it wants.

Or it can just keep kicking us.

 

[Ember]

All patients.

By what criteria?

 

[Iquitos]

Does anyone have any ideas as to how we can pressure the NIH to do more?

Congressional Mandate. That's how vets with PTSD finally got research funding. Dr. Klimas mentions that in her recent webinar

 

[caledonia]

All patients.

What severe, bed bound (and housebound) patients need first, and right now, is better basic secondary socio-economic support – money, stable housing, personal assistance with housework and general practicalities of day-to-day existence, transport, etc.

We have no idea how long before any serious treatment, let alone a cure, comes along. In the meantime, society can do that supportive stuff now, if it wants.

Or it can just keep kicking us.

This is an excellent goal too and is desperately needed. The MS Society offers services like this for MS patients, and would be a good model to follow. Of course, elderly people can also get the same kinds of supports. But not us (yet).

Phoenix Rising actually has the funding from the Chase contest to pull something like this off, via a website that hooks people up to services in their local area. I believe the idea was to get local services such as MS to also help ME patients. Therefore, we wouldn't need to develop separate services of our own, and it could be up and running in a minimum amount of time.

I volunteered for this project over a year ago, but there were various roadblocks to completing it, and I never did get to work on it. My suggestion would be to talk to the president and see if this project can be revived and completed.

 

[helperofearth123]

The next big press release about result from a new big study (columbia spinal fluid?) should have a crowd fund announcement as part of it so all the papers that write about it would include the crowdfund.

There needs to be a 'call to action' that people can actually do in the press release combined with the news from the research.The crowdfund could be setup on kickstarter or somewhere like that and could go towrads a lobbyist fund to get more research funding.

What do people think of this idea? It needs to be set up super fast if more results will come out in a matter of weeks. We don't want to miss it and have to wait for another big study to come out.

 

[alex3619]

Let me remind people that just recently Lipkin had a study rejected because CFS was a psych disorder. Things are very wrong with some of the reviewers for this kind of research. They are gatekeepers. No wonder people don't want to submit research proposals!

This is NOT the first time I read about this issue though. It goes back a long time but is usually (or was usually) discussed off the web.

 

[alex3619]

What do people think of this idea?

We actually have a lobby group pending. I think @caledonia is helping with that? Something else just occurred to me. We have a great many institutions involved with these studies, and they have their own press officers. Maybe we should be consulting with them?