• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Join us for a Community Symposium on the Molecular Basis of ME/CFS! Incredible opportunity!

neweimear

Senior Member
Messages
215
@Janet Dafoe (Rose49) @Ben Howell I just read a tweet from Vickey Whitmore recently that NIH will not fund any clinical trials for CFS until 2023, when phase 1 of the Intramural study is complete. That is devastating to read. Where does that leave OMF if Dr.Davis finds suitable FDA approved drugs, how are trials going to be done without NIH support?? Is there a way around this....are people meant to wait another decade in their beds? I am so upset and angry and deflated. What are your thoughts?? I cant get rid of the underline on text!!
 
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Denise

Senior Member
Messages
1,095
@Janet Dafoe (Rose49) @Ben Howell I just read a tweet from Vickey Whitmore recently that NIH will not fund any clinical trials for CFS until 2023, when phase 1 of the Intramural study is complete.

@neweimear This is the transcript of the first afternoon of the June CFSAC meeting.
https://www.hhs.gov/sites/default/files/2017-06-29-cfsac-meeting-transcript.pdf
There might be more info beginning around p.40 Hillary Johnson asked Vicky Whittemore about clinical trials.
 
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neweimear

Senior Member
Messages
215
Thank you, I just read it there and it sounds somewhat better once Vicky clarifies what she meant. The RFAs are not to be used for clinical trials, however, NIH are open to discussing a clinical trial with investigators, investigators are welcome to approach NIH to discuss their suggestions. Nothing is promised but at least trals are not 100% ruled out as I understood originally. NIH need to be more supportive is the bottom line.
 

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
We are so excited to announce the addition of Dr. Mario Capecchi to the lineup of speakers at our August 12 Community Symposium! Dr. Capecchi is a Nobel Laureate in the Physiology or Medicine category. He is the distinguished professor of Human Genetics at University of Utah School of Medicine. Dr. Capecchi holds a PhD in biophysics from Harvard University. He is a member of the National Academy of Sciences and a member of the OMF Scientific Advisory Board.

Mario Capecchi.jpg


To meet this Nobel Laureate and hear him speak register for the symposium today!
https://www.omf.ngo/community-symposium/


Amazing!


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Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
Mark Davis (of recent cytokine study fame, and much much more!)


Meet Dr. Mark M. Davis, one of the speakers at our August 12 Community Symposium. Dr. Davis is the Director of the Stanford Institute for Immunology, Transplantation and Infection (ITI), a Professor of Microbiology and Immunology, and a Howard Hughes Medical Institute Investigator. He is well known for identifying many of the T-cell receptor genes, which are responsible for the ability of these cells to recognize a diverse repertoire of antigens.

His current research interests involve understanding the molecular interactions that underlie T cell recognition and the challenges of human immunology, specifically a “systems level” understanding of an immune response to vaccination or infection. Dr. Davis has received many honors and awards, including memberships in the National Academy of Science and the Institute of Medicine, The Paul Ehrlich Prize, The Gairdner Foundation Prize, The King Faisal Prize, the General Motors Alfred P. Sloan Prize, and being elected as Foreign Member to the Royal Society of London.
Mark Davis .jpg


Register for the symposium to hear him speak!
https://www.omf.ngo/community-symposium/


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Nickster

Senior Member
Messages
308
Location
Los Angeles, CA
This is disappointing that NIH pulled its funding. This symposium needs to get marketed and put out for the public to see Ron and his team's determination to find a cure. Maybe just maybe this symposium can generate increased private funding and put pressure on NIH to increase their funding.
Keep getting the word out.
Look how far this has come and anything is possible.
 

Alvin2

The good news is patients don't die the bad news..
Messages
2,984
As so many in US struggle to afford basic health care, this could become politically very inconvenient for the NIH.

I'm sending the article to some people I hope can help with some funding. Thanks @BurnA.
Its the other way around, republicans will argue that lowering the cost is a bad idea because as they have stated if you live properly you won't get ill so reducing the cost is socialism. Plus it gets the government out of spending money because they want to shrink the government until they can "drown it in a bathtub".
 

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
Hi guys,

So we have had an update r.e. Livestream.

Everyone who signed up should have had an email like this below just sent to them:

IMG_2067.PNG


As you can see it gives a link to watch the livestream.

You should also be able to go to omf.ngo and there should be a link on the main page. We have had such huge uptake on this that I believe the original plan to have it livestreaming on the OMF website is not possible.

Anyway, fingers crossed it should all be fine!

Keep me updated if you have issues,


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