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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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Just like @Rrrr I'm more than curious to learn which A/V they use and in which order.
Is it possible to know the names?
@A.B., thanks for asking him. as i'm sure you understand, i was not asking for advice, but rather asking to hear which antivirals and immunoglobulin he tends to use with his patients. oh well. thanks for asking.
do you know what the "lighter" interventions are that they tend to use first?
I can tell you that for sure at this specific clinic they didn't and still don't use the CCC or the ICC to diagnose.
I know this because I follow closely what is happening and how the medical field is moving in Italy in regards to ME/CFS.
On March 25 there was a meeting in Rome, most of the names involved in the CFS field were present, Prof. Tirelli included and they presented this document from the Agenas, the national agency of regional health services.
These "new" guidelines use the Fukuda as diagnostic/clinical criteria, are mainly focused on the female gender, cite a collection of clinical studies mostly outdated if not badly biased.
IMHO it's a big mess.
I can tell you that I personally exchange thoughts with a real researcher/immunologist from Italy, who was present at the meeting and is saddened by what this colleagues have come up with. There is nothing new or helpful in this guidelines.
It is old and trite. The document is in italian (my native language) and I read all of it.
If you use crap to write guidelines on ME/CFS all you ever going to get out is more crap.
Sorry for being so explicit!
I understood, and said that it was a request for clarifying an aspect of this study for a curious patient. Maybe I can get the info next time.
Anyway, I was prescribed a course of two months of high dose l-acetylcarnitine injections, high dose B12 injections, and branched chain amino acids. He said (I'm paraphrasing) it was preferable to start with things that were not foreign chemicals.
Thanks @Rrrr we're unluckily in this together!@NK17 oh, i totally understand your frustration and anger. i've been near bedridden for 1 full week, this past week, and that comes after 24 yrs of being sick, homebound and bedridden much of the time. so your anger and frustration are understandable to me!!!
Thanks @A.B. for asking and reporting to us.I understood, and said that it was a request for clarifying an aspect of this study for a curious patient. Maybe I can get the info next time.
Anyway, I was prescribed a course of two months of high dose l-acetylcarnitine injections, high dose B12 injections, and branched chain amino acids. He said (I'm paraphrasing) it was preferable to start with things that were not foreign chemicals.
I can tell you that for sure at this specific clinic they didn't and still don't use the CCC or the ICC to diagnose.
I know. It would be interesting to hear the rationale behind this.
By the way, the website of Dr. Tirelli names some of the pharmacological interventions for CFS used in the clinic:
High dose immunoglobulin, magnesium, acetylcarnitine, antivirals such as amantadine, acyclovir, and immunomodulators such as thymopentine.
@Rrrr thank your friend for reading the article we're trying to discuss and for reporting the find.a friend read the study we are discussing on the thread and wrote me this:
The only antiviral drug mentioned in the paper is methisoprinol.
http://en.wikipedia.org/wiki/Inosine_pranobex