You can view the page at http://www.forums.aboutmecfs.org/content.php?211-Dr.-Peterson-Update
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, 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.
Hey Pictureofhealth,
I think the winkle in determining the drug's efficacy is that neither the patient nor the doctor can ever be 100% sure if feeling worse means you're actually getting worse, especially in a disease with as much immune dysfunction and sensitivities as CFS. IRIS, herxheimer reactions, and upregulated inflammation have all been proposed as getting better/feeling worse dichotomies. I think Dr. Peterson isn't saying that when patients report feeling worse they're lying or even that he "dismiss(es) their experiences", but rather that he puts more weight in immune markers reverting from abnormal to normal than self-reports. Granted there are many clinical markers he has yet to use, but as it stands he does the most exhaustive diagnostic workups I've ever done or heard of, and with 20+ years of ampligen, I'd venture to say he knows something we don't.
Ultimately as a practicing physician, even with one with as much ME/CFS experience as he has, you have to make difficult choices for those patients that are on the cusp and I'm sure he'll be the last one to say he has all the answers.
I'm not sure which he would recommend between the two, but he had me do both.