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.
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did someone say Peptide T is not FDA approved? Dr. Mikovits said in an email that it is approved...
whoa, if it was shown to make ME better before and it is owned by drug company, also no side effects, then why isn't it already on the market and being sold as treatment for us? I mean, I know of all the bias, but a drug company don't care about bias, they care about customers for a product. And they will have a lot of customers in PWC.
I just called RAPID Laboratories, Inc. in the USA to ask some questions about XMRV and Peptide T and, to my happy surprise, Candace Pert herself answered the phone. She was very sympathetic to our situation (in terms of CFS) and is reading Osler's Web to learn more. What is important for this group discussing Peptide T to know -- before anyone goes running around trying to buy or make or take Peptide T -- is that, according to Candace, Peptide T may not even be the right peptide for XMRV. I think she was saying that there are other Peptides that might be more appropriate for XMRV, but that the studies have not been done. She stressed that the folks working on this (did she mean working on the use of Peptide T and XMRV or did she mean working on XMRV in general? I am not sure) are Frank and Sandra Ruscetti, the husband and wife team at the National Cancer Institute (NCI). And of course she mentioned Judy Mikovits as the one to contact re: XMRV studies in general.
Has anyone been in touch with either Judy Mikovits or the NCI Ruscetti researchers re: Peptides and XMRV? That may be the next step.
Candace was very nice and I am glad she is on our team.
I just emailed Sandra Ruscetti this email:
Hi Dr. Ruscetti,
Thank you for your research into XMRV. Many of us around the globe are holding our collective breath in hopes that XMRV will be found to be the cause of Chronic Fatigue Syndrome (CFS), and that treatments will soon follow.
I am wondering if you are doing any studies re: XMRV that I can get into, or know of any studies I could try to get into?
Separately, I am wondering if you have looked into Peptide T, or Peptides in general, as a possible treatment for XMRV? I just got off the phone with Candace Pert who suggested you and Frank are the people to talk to about that. And earlier Judy Mikovits mentioned in a talk that a past study found Peptide T effective in treating CFS. Do you know, is anyone pursing that now?
CFS 20 years