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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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i also wrote a mail to Dr. Nancy Klimas about my trying her protocol. She did not reply to my mail.
Brave brave brave you are, thanks for this info@junkcrap50 I think she has an immune signature which predicts for whom it will work. That is something to ponder about. Anyway I took a shot.
@junkcrap50 I think she has an immune signature which predicts for whom it will work. That is something to ponder about. Anyway I took a shot.
I did see one of her videos (and I totally agree that searching through videos is a painful process! ) in which she talked about GWS and ME/CFS, their similarities and differences. But I don't remember her saying that they would respond to the same protocol. We could have watched different videos, or, perhaps even more likely, I just don't remember that part - my memory is atrocious.I saw in a video presentation of Nancy Klimas(Not able to locate it), where she made a comparison of GWS and ME /CFS and said even though they are vastly different in the blood analyses, they will both respond to the same protocol. I will try to locate it. But searching through videos is a painful process.
I agree. So unless you fit that profile, the protocol would not make sense for your case necessarily.@junkcrap50 I think she has an immune signature which predicts for whom it will work. That is something to ponder about. Anyway I took a shot.
@raghav, It may have been that when Klimas said they might both respond to the same protocol that what she was actually thinking of is postmenopausal women with ME/CFS, because the upcoming clinical trial she's doing for postmenopausal ME/CFS women is apparently going to use the same sequential protocol of etanercept followed by mifepristone that's being used right now for the clinical trial for men with Gulf War Illness (GWI).@Mary I saw in a video presentation of Nancy Klimas(Not able to locate it), where she made a comparison of GWS and ME /CFS and said even though they are vastly different in the blood analyses, they will both respond to the same protocol. I will try to locate it. But searching through videos is a painful process.
We have established 3 models that require different clinical approaches – post-menopausal women model differently than pre-menopausal women, and men model differently than women.
I think she is a huge stickler on subclassing. It sounds like she was disappointed in who picked the patients for the big riturximab trial.
Can you say more about this @Belbyr? Does Dr. Klimas have an immune signature (or subclass) that she discovered would be potential responders to Rituximab?
@nandixon I too thought of the idea of multiple cycles to bring it under control. I think that is why the monitoring period of 4 months post protocol. But if getting funds for even one cycle is that difficult then I dont know what to say.
Is your free testosterone level also below normal as well?She's going to love me when I walk through the door, I just re-ran my testosterone and it is a 126. My progesterone level is 3x's the highest amount a male should be. I'm 30...
Experimental data for endocrine-immune markers measured in male GWI subjects showed the greatest alignment with predictions of a naturally occurring alternate steady state presenting with hypercortisolism, low testosterone and a shift towards a Th1 immune response. In female CFS subjects, expression of these markers aligned with an alternate homeostatic state displaying hypocortisolism, high estradiol, and a shift towards an anti-inflammatory Th2 activation.
Reference