Discussion in 'General ME/CFS News' started by Sasha, Mar 11, 2016.
He's not kidding.
Read more here:
http://solvecfs.org/March 2016 Letter from Dr.Zaher Nahle
Love how astute this man is!
"Over the next few years, the NIH intramural study on ME/CFS will yield much-needed information on the molecular underpinnings of this disease. The worry is that as this study progresses with psychosomatization sympathizers among its mix, important clues could be misinterpreted or ignored, thereby shortchanging this whole commendable effort."
Well done Dr Nahle! Thank you!
Just what the community needs, and just what NIH needs to hear from your organization,
The whole March 2016 newsletter is here:
Various bits of news in it.
Thank you Dr. Zaher Nahle! It's wonderful to have this kind of support. Added benefit: more eyes on the NIH.
Don't think I've seen that phrase before. I rather like it.
I don't know that anyone has more despised the old CFIDS Association, or been more critical of them, than I have, but I have to say that since Carol Head and Zaher Nahle have taken over things really do seem to have changed. I was really skeptical that anything had changed besides the faces. The difference between Nahle and Suzanne Vernon is absolutely stunning though. Whatever rattled the cage over there, I am immensely thankful for it. They seem to be positioned to do us a lot of good.
My thoughts exactly! This new crew is rockin' it.
Another good phrase.
It shows that organizations can change, if the leadership is replaced with competent leaders. Now, how do we get effective leaders installed at NIH and CDC, leaders who will give us results instead of excuses?
I doubt that applies in our case, hope I am wrong But the money the CFIDS has and the NIH/CDC have is many magnitudes different!
2 points I would like to touch on and this makes me worry about the NIH study.
1. An unclear response by the NIH about the involvement of experts, both Drs and Researchers, outside of the NIH and how they will be involved or callaborated with. I personally feel this has not been determined by the NIH and if so what it resemble almost a consultative role like when Cort J mentioned about the group of experts dealing with exercise testing. Or the caller that was one of the authors of the IOM report and how PEM was determined over the course of many days and the symptms not just fatigue that ensued.
2. Because of the lack of interest by the NIH and CDC over many years research and funding had come privately.
I believe their are many compotent research invovled in this study and more so than not.
With such an important study I feel it imperative in nature that the likes of Dr Nancy Klimas, Dr Danielle Petterson, Dr Kaufman and Koglnek and Dr Kenny De Meirlier be involved.
I am just throwing out the Drs that have seen the most patients (10,000 or more).
I dont know how this would be achieved as I do not know how the NIH works in regards to HR policies, Consulting Policies, etc. But the likes of Klimas and Petterson without a doubt should be included....No IFS ANDS OR BUTS about it.....this also stands true to group involved in envoking PEM.....
I feel that sinple teleconferencing will not cut it, nor will just mini seminars, nor will just presentations, nor will just documents of research by the "Greats" in the ME/CFS World
The NIH and CDC for to long knew the magnitude of this disease and swept it under the rug because they had PACE to cover up the facts of this modern day attrocity to millions of sufferers.
I feel that as a community several key things need to be accounted for and demanded of from the NIH.
- Involvement in lab setttings where Top Drs are Involved and actively engaged and consulting with other NIH Drs and Researchers. Klimas sharing immune findings and highlighting areas of abnormality in conjunction with her research. Just an example
- Seminars, lectures, teleconferences with top ME/CFS Drs as on top of real lab time.
- Comparative Analysis of tools used to distinguish abnormalities in patients. Ie exercise bikes and Vo2 max equipment
I just feel it so neccessary that our best of the best that have been fighting for years to help us should be actively engaged at all levels of this study as they are true SUBJECT MATTER EXPERTS. They should have more of a role other than that of just a consutant. I would almost bet they would dedicate their time at no charge to NIH as long as it meant progress in the field of ME Research.
I feel that we *MUST* request a detailed response from the NIH as to WHO, WHAT, WHEN AND HOW these ME Drs will be involved.
I think we *MUST* ask for a special circumstance that they are to be included as active members of the study...
Ok, Ok ill stop just took a b12 shot and my brain started to work so I figured Id get it out...
The more i hear from Dr Hahle the more I like him. He gets it and he's capable.
You can also try a Google Site Search
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