The NIH to develop plans for ME/CFS: CII could play key role

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On the 26th of May, the National Institutes of Health (NIH) plans for ME/CFS took a big step forward when a key council gave the green light for working up plans to create a new ME/CFS infrastructure, with centers around the US. And the Center for Infection and Immunity (CII), the research faculty that the Microbe Discovery Project patient team is fundraising for – could become one of those centers.

Hot on the heels of the #MissingMillions protests, Dr Vicky Whittemore presented a major new strategic proposal for ME/CFS – a “concept” – to the NIH’s National Institute of Neurological Diseases and Stroke (NINDS) council meeting, asking for approval to develop detailed plans.

Dr Whittemore stated in her proposal:

“So we are presenting this concept with several goals: to support research and to develop research capacity; to stimulate research, especially on the etiology of the disease and biomarkers of disease, as well as to develop a large, well-defined cohort that could then be utilized in future clinical trials, as well as to train young investigators.

And one of the things that was very startling to us when we did a portfolio analysis was to realize that not only is NIH – and this means any institute at NIH – not funding any training grants, so no Fs, no Ks, no Ts, we’ve never even received an application in those categories, which is pretty shocking.

So there’s significant need for building research infrastructure, for bringing in the ability to train, and to do research that involves multiple sites. And so our concept is that we would put in place a consortium with multiple sites utilizing common protocols across the clinical projects who can also then develop studies across the sites that would address etiology, potentially imaging, potentially biomarkers studies, genetics, that would all work together.”

The Fs, Ks and Ts mentioned by Dr Whittemore are a series of awards and grants which translate to: (F) Fellowship awards, (K) Career development awards and (T) Training grants. You can read the short transcript in full on #MEAction. It’s well worth reading Cort Johnson’s report on the event, he speculates what this latest information may mean, stating:

Concepts” at the NIH represent early planning stages for initiatives to increase research in “understudied and significant area(s) of science.” Concept clearance – which was what Vicky Whittemore was going after today – is needed before an Institute will accept proposals for significant new funding.

Clearance for a concept does not guarantee that requests for applications (RFA’s), or request for proposals (RFP) or other grants will be approved. The leader of the meeting said, however, that it was “not uncommon” that cleared concepts turn into RFA’s and grants.”

So, this proposal wasn’t specifically about extramural grants, as Cort clarified, even though it may lead to grants. The NIH are working towards structural changes for ME/CFS: in effect this was seeking a rubber stamp of approval to move forward – and there may be more hoops to jump through. Cort also goes on to speculate about part of the proposal which included Consortium Centers or Centers of Excellence, and he lists some of the possible locations, which includes the Centre for Infection and Immunity. Cort explains:

“Center for Infection and Immunity – Mady Hornig recently stated she hopes the CII becomes a Center of Excellence for ME/CFS. It’s hard to imagine that not happening given the immense amount of research occurring at the CII, the large biobank it has access to, and it’s top research and medical talent.”

The CII is working towards a foundation for a Center of Excellence which is tied in with their large Microbiome/Immunity study; they collaborate with five doctor specialist clinics across the US, among other researchers – see our home page. They have collection for this study funded, which has been fully underway this year, but they desperately need $5 Million for testing and analysis! As you can see from Cort’s blog, the proposal for Consortium Centers can be done, with much of the setups possibly already in place.

The proposal was approved by the NIH Council. Science writer Simon McGrath commented on the proposal plans, stating:

“We don’t know how much this will cost, but it’s a big play from the NIH to fundamentally change the way ME/CFS research is done in the US.”


Progress at the NIH but still no funds for new research studies!

This is clearly a very positive development. Our patient team is hopeful that we are at the beginning of real change, however, we may need to curb our enthusiasm.

The latest proposal only appears to relate to building up research infrastructure. There was no news with respect to RFAs for funding research studies themselves.

So far, researchers have had severe problems getting any significant funding from the NIH. To state the obvious, Dr. Ian Lipkin and Dr. Mady Hornig at Columbia CII and Dr. Ron Davis at the Open Medicine Foundation (Stanford based), need a minimum of $5 Million each – and they need it right now. This is $10 Million straight out of the gate. This isn’t even taking into account other really significant groups of researchers in the field, or the new researchers that need to be drawn into the field. So, we need very significant RFAs, both for new research as well as for replication of the most promising current findings. Lipkin and Davis have either not been funded at all, or only been partially funded, and that’s a huge problem: research won’t happen until it’s fully funded.

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Here’s the crux – we just don’t have time! We can’t afford to wait! We have to make change faster. The sooner researchers have the funding the sooner we get results. Dr. Lipkin has stated “we can solve ME/CFS in 3 -5 years provided the resources are made available!” We haven’t even touched the surface of our collective resources. Private funding and community donations are also a huge part of supplementing mainstream research in any illness. We are in a position where we are needing to kickstart mainstream research.

Dr. Hornig stated in her talk in Sweden last year:

“I would like to emphasise however that the reason that we continue to be concerned and really devastated by the crisis in funding is that although we were very happy to have NIH funding, (NINDS), again we are just starting this collection – it only covers half of the sample collection for microbiome immune and pathogen discovery banking of samples. It has zero dollars for actually running any of these assays and indeed we had to add half a million dollars in additional funds from other sources in order to be even able to complete that collection.”

We have to go large with our goals! Too many people are too sick, too many people have no support, help or treatments. There is a huge and urgent need for high quality research, and the CII team really needs our community’s help. Please donate and share information from this site, as far and wide as possible.

Please help by sharing these blogs on Facebook or other social media: spreading the word like this will help lead to more donations. Get the information into as many peoples view as possible! You can also subscribe to the blog – so you don’t miss out on important information and news!

We are very much looking forward to bringing you more news soon! Thank you so much for your support – every single donation and every single share counts! Together we can invest in great research and make significant advances in ME/CFS.

Please DONATE directly to Columbia University Centre for Infection and Immunity to help great research into ME/CFS.

~The Microbe Discovery Project team

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