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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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"We don't know if these changes are involved in causing CFS or are found as a result of CFS," said study author Dr. Elizabeth Unger, chief of the chronic viral diseases branch of the U.S. Centers for Disease Control and Prevention. "Every carefully controlled scientific study on CFS helps raise the credibility of this very complex illness. Even though our findings are preliminary . . . they do support a biologic [theory] about this illness."
According to Dr. Ungers statements, there appears to be continuing confusion within this agency (and the NIH) that research, using some of the newest technology available" at that time, had not already been conducted and made known to the federal government over 25 years ago. Specifically, there was considerable clinical research conducted, which appeared to identify abnormal physiological changes to the brains of ME/CFS patients (physicians/researchers who were involved in this research - Drs. Peterson, Cheney*, Komaroff, Handelman, Goldstein). See, Hillary Johnsons (amazing!!!) book Osler's Web at pages 75-80, 126, 173, 307-321, and 687-690 - http://www.oslersweb.com/. It may be worth an investment to supply copies of this book with select passages marked to entice interest in the historical perspective of this illness."A strength of the study is that we used some of the newest technology available to look at the function of regions of the brain that may be involved with CFS," she said. "We hope the impact of our study will be to encourage further basic science investigation of CFS."
This really is great! Thanks Cort! I have sent my letter to Secetary Sebilus and others yesterday evening. I haven't found the e-mail for my Vermont Senator Sanders. He has great power and is behind the people. He is Independant. If anybody has a template for a Senator letter it would help due to my brain fog. Cut and paste I can do.!
If we could rally 1/2 of the ME CFS patients in this USA and send all our e-mails at once on a given day that "MIGHT" get some attention. Again....this is fantastic. Thanks!
I think this is a wonderful initiative. Will work on letters.
I do disagree with the statement cort wrote : Ampligen, the only drug currently under review at the FDA, has been shown to be effective (see PlosOne study) and hundreds of patients over the past ten years have shown that its safe. and with justin's suggestion to specifically mention ampligen.
maybe hundreds have used it safely. But it has also caused serious problems for others. ( I have personally used this med)
Do I think it should be approved? probably. I think the potential benefit outweighs the risks. BUT patients should be properly screened and realize if it works, it is probably not a long term asnwer, and that it could make them sicker. much much sicker. That's true, of course, of all meds -- some more than others. I would hate to see approval and it prescribed just b/c there is nothing else and have it used incorrectly. I guess that's what all the prescribing information is for.
I have a friend who had a strong negative response and b/c of decline triggered by this, is no longer on this earth.
I also have friends who have been immensely helped during time they had access to the drug. ( relapse after stopping)
Me? unpleasant side effects and no benefit. (no lasting negatives that I know of, either. )
It's a mix like everything else.
Of course, those doing the approval, probably don't understand the serious nature of this plague, and therefore don't understand the risks are for many, worth taking. Just as those risks are accessed for other meds approval for many other serious disabling illness. I think that is a problem with meds for ME/CFS.
Can't really put all the asterisks in the letter though ;- )
I just personally wouldn't single out ampligen in the letter.
Great! Thanks to John Smith, Robert Miller and Cort for this very important initiative! I have emailed mine. I'd like to request a change to the text: I believe that Ampligen has been in the FDA process since 1990 (Osler's Web p. 371); so I suggest the last sentence of the fourth paragraph be changed to read:
"Yet, ME/CFS patients continue to suffer terribly while ME/CFS as a disease has been moved through six different divisions at the FDA and the only treatment for ME/CFS has been stuck in the FDA process for over two decades."
done! sent my email in. hope others do, too.
Thanks for the template.
I sent to everyone on the To and CC email list, both my senators, my congressman and posted only the first paragraph and email addresses on FB so my friends can cut and paste quickly and easily as May 2 is not far away.
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