NIH Requested Information on ME/CFS Research & the Community Responded!

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The US Trans-National Institutes of Health (NIH) ME/CFS Working Group, has published the responses received to their Request for Information seeking input into research strategies with respect ME/CFS. There are 296 pages of responses from individuals, 55 pages of responses from patient advocacy organizations, and 111 pages of responses from researchers and healthcare providers.

From the Microbe Discovery Project (MDP) teams perspective it was great to see Microbiome research highlighted as important by so many, along with other major priority areas! There were many excellent, comprehensive responses, and it was heartening to see people highlight crucial work at the Center for Infection and Immunity by Drs. Lipkin and Hornig. There were far too many areas covered for us to post about – so do peruse the responses to see more if you have the energy to scan through these.

There were also personal heartfelt testimonies and it was also interesting to see physicians with sick family writing in, here is a short extract from one such response on page 93 of the individual responses:

Dear NIH:
Please fast track both research and treatments for ME/CFS.  My once brilliant son and Stanford student […] has been ill for 2.5 years.  He is now bedridden with encephalopathy-sleeping 23/24 hours per day, severe hyperacusis, extreme photophobia, and likely bulbar palsy-drinking all nutrition through a straw for the past 6 months.  He is still “there.”  He wrote on a piece of paper to me one day:  ?Ampligen ?Rituxan ?plasmapheresis.
As a physician, I knew nothing of this disease until my son unfortunately developed this disease.  What I have learned simply leaves me stunned at the history of this disease and neglect of these patients.  To become afflicted with this disease in the past decades is to have 3rd world medicine in the richest nation on earth.
We have millions missing their lives-patients and caregivers.  NIH scientists:   Please look at the forest rather than the trees. Generously fund Ron Davis and Ian Lipkin.  These are brilliant proven successful researchers that are highly motivated to understand and find cures for this disease.  Without fast tracking, […] could easily die of this disease, adding his name to the obituaries like outstanding […] (Harvey Mudd graduate) or […] (MIT and Stanford graduate).
Dramatically and swiftly increase funding and physician education.  This is decades overdue.
Look at the big picture and fast track the research.  Go with those who have outstanding proven track records.  They know the technical details of what needs to be researched far better than I. Trust them. They are motivated to solve this problem and help these patients.  I don’t want my son […] to die, so please don’t leave researchers like Davis and Lipkin poorly funded.  They are our greatest HOPE.

 

Read more on the NIH site

It has been communicated by email that:

“the Trans-NIH ME/CFS Working Group will review all of the responses and these comments to help guide research strategies and initiatives to advance our knowledge of ME/CFS and eventually find a treatment for this devastating disease. Once the responses are reviewed, the Working Group will prepare a summary that will be posted online.”

You can view this email information on Phoenix Rising here

Researcher’s can make headway if thousands of us make donations. You can help Dr. Lipkin and Dr. Hornig’s research at the Columbia University Center for Infection and Immunity through donating on their secure site here. See the MDP homepage to find out more.