Dr Nath on ACT UP and patient involvement in ME/CFS research

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At Tuesday’s CDC Grand Rounds Wilhelmina Jenkins, a long-time ME/CFS advocate, asked Dr. Avindra Nath, the PI of the NIH intramural study, a question about the planned Patient Advisory Committee mentioned in his presentation and about RFAs. We thought patients and allies may find a video and transcript of the question and Dr Nath’s response to be of interest. You can also view slides and read a transcript of Dr Nath’s presentation and the entire Q&A session.

Wilhelmina Jenkins:

Dr Nath, could I ask you to be a little more detailed about the patient advisory committee – how you intend to incorporate patient input into the NIH study? And could I also ask – I don’t know if you have the answer to this – about external funding from NIH to other researchers on the outside possibly through RFAs that might be developed?

Dr Nath:

Excellent question – I’m delighted to try and address both of them. So – firstly I think – input from the patients is absolutely critical for any disease that you want to study. They’re the ones who really experience the symptoms and live it – ah – live with it from day to day. So, as physicians whatever input we can get from patients is very important through whatever mechanism it is. Any physician will tell you that you learn a lot more from talking to patients than you do from reading any kind of text book, journal, or whatever medical literature that is available. So – careful listening to patients is absolutely critical. So with that in mind – you know I grew up in the early AIDS epidemic –  and I saw interaction with ACT UP and other patient forums whereby they had a great impact on the way disease was handled – treated – and moved the federal government to make changes at every level. And so  – we understand the importance of it – and there are efforts underway to put that advisory group together. So – um – you know people who are senior to myself want to look at it from all perspectives and put together a proper group that will address both the intramural/extramural things.  I think those efforts are underway and we are looking forward to that input.
 
With regards to extramural funding that’s again beyond my area of authority – and so I know there is a lot of interest in being able to make that happen, lot of advocacy groups have approached NIH with that effort, I think the heart is in the right place and all those things will be done. I think it’s probably just a matter of time before you’ll see all these things happen – but there’s no lack of interest in making that – ah – achieving those goals.

After the meeting Wilhelmina Jenkins had an opportunity to speak with Dr Nath for a moment. As she explained:

I spoke briefly with Dr. Nath after the Grand Rounds presentation and he emphasized that the study is at the very beginning and is open to changes. He repeated his desire that patients be involved in the process.

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