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Treatment of 741 italian patients with chronic fatigue syndrome

NK17

Senior Member
Messages
592
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?
 

Rrrr

Senior Member
Messages
1,591
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., is there any chance you will be able to ask your doctor again, but in a way that does not feel threatening to him, where he does not feel he is giving advice, and instead simply reporting what meds he tends to use in his practice?
 

A.B.

Senior Member
Messages
3,780
@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 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.
 

NK17

Senior Member
Messages
592
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as diagnostic/clinical criteria, are mainly focused on the female gender, cite a collection of clinical studies mostly outdated if not badly biased.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!
 

Rrrr

Senior Member
Messages
1,591
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!

@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!!!
 

Rrrr

Senior Member
Messages
1,591
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, @A.B., for your help with this. do keep us posted regarding if you feel any better from the protocol they have you on. meanwhile, i am writing about my experience with gamma globulin here:

http://forums.phoenixrising.me/index.php?threads/gammaglobulin.28338/

i am finding that only tiny tiny doses of it helps me. if i do too much, i get much sicker.
 

NK17

Senior Member
Messages
592
@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 @Rrrr we're unluckily in this together!

United we stand, divided we fall!
 

NK17

Senior Member
Messages
592
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 @A.B. for asking and reporting to us.

Please keep us updated and good luck with your supportive treatment.
 

A.B.

Senior Member
Messages
3,780
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

Senior Member
Messages
1,591
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.

i had never heard of thymopentine, so i looked it up:
http://en.wikipedia.org/wiki/Thymopentin
 

NK17

Senior Member
Messages
592
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
@Rrrr thank your friend for reading the article we're trying to discuss and for reporting the find.

Methisoprinol also known as inosine pranobex is used as an antiviral but in reality acts more as an immunostimulant.

Dr. Paul Cheney and Dr. Nancy Klimas have been known in the ME/CFS field to use it for some of their patients, usually pulsed.

It can raise your uric acid, so it's better to monitor its level, although normally PWME, as well as PWMS, have low uric acid levels (uric acid is a natural scavenger of peroxynitrite, which is implicated in neuro inflammatory states).

In Italy inosine pranobex is manifactured by different pharmaceuticals' companies and you can get it quite cheaply in pharmacies without prescription (OTC).
 
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Rrrr

Senior Member
Messages
1,591
@NK17, my friend just sent a follow up email saying, "they used different things, not just one antiviral." i'll see if i can get more info from her.