Dr. Kerr, I presume?
Clark Ellis brings us a rare interview with British researcher Dr. Jonathan Kerr who is now living in Colombia.
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Treatment of 741 italian patients with chronic fatigue syndrome

Discussion in 'Latest ME/CFS Research' started by heapsreal, Nov 15, 2013.

  1. NK17

    NK17 Senior Member

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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?
     
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  2. Rrrr

    Rrrr Senior Member

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    @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?
     
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  3. A.B.

    A.B. Senior Member

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    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.
     
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  4. NK17

    NK17 Senior Member

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as diagnostic/clinical criteria, are mainly focused on the female gender, cite a collection of clinical studies mostly outdated if not badly biased.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

    Rrrr Senior Member

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    @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!!!
     
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  6. Rrrr

    Rrrr Senior Member

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    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.
     
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  7. NK17

    NK17 Senior Member

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    Thanks @Rrrr we're unluckily in this together!

    United we stand, divided we fall!
     
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  8. NK17

    NK17 Senior Member

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    Thanks @A.B. for asking and reporting to us.

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

    A.B. Senior Member

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    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.
     
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  10. Rrrr

    Rrrr Senior Member

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

    Rrrr Senior Member

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  12. NK17

    NK17 Senior Member

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    @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).
     
    Last edited: Apr 26, 2014
  13. Rrrr

    Rrrr Senior Member

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    @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.
     

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