NIH moving at bureaucratic pace while ME/CFS metabolomics findings get hotter!

bureaucracy

 

There has been another quick run of funding and research news in the ME/CFS community. Some frustrating, some hopeful…

 Bureaucracy

While so many patients remain redundant from life and suffering without appropriate care and support, bureaucracy is in no hurry. Dr. Francis Collins Director of the NIH has responded to a recent Congressional letter with no new information, except to state what we already know so far. Advocate Jennifer Spotila details all of this in an article on Occupy M.E. which you can read here.

Jennie helpfully highlights these details:

“What is striking about this letter is that it contains very little news. Let’s take a look at what Collins said and what we know.

  • “[T]he NIH has already funded seven supplements to existing awards focused on understanding the causes and mechanisms of ME/CFS.” We knew about the supplemental funding generally, but this is the first time I have seen a number applied to the effort.
  • “The NIH is preparing two Requests for Applications (RFAs) which will support ME/CFS collaborative research centers and a Data Management Coordinating Center. These RFAs will be released once they are finalized.” We knew this.
  • “The Working Group is preparing a summary of the [RFI] responses and will use the input to help guide future ME/CFS research and research training.” We knew this.
  • “We are finalizing the protocol and the informed consent forms and healthy volunteers are being recruited to participate. The goal is to admit the first set of healthy volunteers next month.” We knew this.
  • “The NIH recently formed an ME/CFS Scientific Interest Group . . . [and] started a bimonthly seminar series with internal and outside experts.” We knew this.

Another well known strong advocate for ME/CFS Mary Dimmock, had this to say about Dr. Collins response:

NIH’s response is completely unacceptable!!! No plan to ramp up applications/funding for investigator initiated research, no RFAs for biomarkers and other key biological questions, no plan to fund hypothesis generation, no plan to resolve key barriers impeding clinical trials or to progress clinical trials on drugs already being used successfully off-label. No sense of what financial and strategic commitment the NIH institutes are making. Too slow, too small, too bureaucratic. We’d still be waiting to land on the moon if this was how they planned the moonshot in the 60s.

One other observation… This would be bad enough if the clock started ticking one year ago. But the IOM report and P2P workshop/draft report was almost two years ago. And the needs expressed in both of those reports had been stated in previous meetings and CFSAC recommendations going back to at least the early 2000s.

Zero chance of appropriate and full funding

 

Our MDP team is grateful for what is being done, these structural developments are crucial. But this is an upsetting response from Dr. Collins – if not typically bureaucratic. To use the obvious example of Lipkin and Hornig at Columbia University CII and Ron Davis at Stanford, we all know they need significant RFA’s directly for research, let alone for other excellent scientists. At this time – there is zero chance of appropriate and full funding for extramural researchers that have the ability to carry out strong research programmes and are trying to do to so.

There has been no public statement that there is any specific RFA in the works for research directly apart from a general promise to ramp things up. Getting these teams funded is key for patients, their quality work backgrounds and institutional structures, along with the respect they carry – can help shift the whole research landscape fast. They also build on other excellent research findings – but only if they are funded!

It is still left to the community to take up the slack if we want to get anywhere within any decent timeframe. As patients we do not want to be in the same position we are now  – in 5 years time. Life is passing us by and ME/CFS has been sorely neglected for too long – great researchers are chomping at the bit now. Strong, robust extramural research findings will also help pile on the pressure to increase funds to ME/CFS research. Your donations count more than ever, those that can, please donate and do so in high numbers. We don’t want people to break the bank, $10 and $20 donations or more adds up, but we implore our community to please do not sit back and wait for the NIH – we will be slowed down exponentially.

 

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We can really get somewhere

Biomarkers and major breakthroughs are within our grasp, but we need to forge findings that are akin to titanium in strength and really pin down the pathophysiology and correlations in ME/CFS, to make sure we shift this research landscape for patients and for good.

Metabolomics is transforming from a ‘hot spot’ to a major simmer! New research by a team in Japan has been published in Scientific Reports, titled ‘Index markers of chronic fatigue syndrome with dysfunction of TCA and urea cycles’. Also, well known Norwegian team Fluge and Mella, have also been looking into metabolism with Mella stating in a talk yesterday that there is a paper in process and it is reported that they have found similar findings to the recent Naviaux Metabolomics Paper.

Metabolic abnormalities are now being seen in patients with ME/CFS by more than a few groups, including published papers from Australia, USA and Japan, as well as soon to be published reports of similar findings from Davis, Hanson and Fluge and Mella in Norway. You can see our last blog on the metabolomics hot spot in ME/CFS here.

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In other news Hanson, Giloteaux and Keller have published their twin study in the American Journal of Case Reports:  ‘A Pair of Identical Twins Discordant for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Differ in Physiological Parameters and Gut Microbiome Composition’

Also, Nature has published a Review titled ‘Signals from the gut microbiota to distant organs in physiology and disease’. This review may be of interested to people who follow Microbiome research. The review discusses host cross-talk and how misconfigured microbiome signalling may contribute to different diseases, including some discussion on microbiota relationship to metabolites.

 

international-conference

 

Last but not least, the International Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis Biennial Conference starts on the 27th of October. The agenda is available here. We are unsure about what coverage may come out of the conference but we are sure there will be some tweets appearing somewhere!

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Please donate to Lipkin and Hornig’s huge ME/CFS study at Columbia University CII. As Dr. Hornig stated at the New York #MillionsMissing protest CII “are all dressed up with no place to go”.

Sample collection is almost completed – they just need funds for analysis and our community donations will make the all important difference to help get this work funded. CII’s study has the ability to put pieces of the ME/CFS puzzle together. This is a huge in-depth study with a strong number of well characterized ME/CFS patients and healthy matched controls across many different research areas.

You can read about this brilliant study here!

 

Thank you for your support!

~ The MDP team