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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. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    http://www.europeanreview.org/article/5782

    Chronic Fatigue Syndrome (CFS) is a distinctive syndrome characterized by specific symptoms cluster. CFS mostly affects women and often results in severe functional limitation. Its prevalence varies from 0.4 to 2.5% in the general population. In our prior studies on the clinical features of 205 CFS patients we founded immunological and brain abnormalities. In this paper we illustrate our caseload on CFS treatment.
    PATIENTS AND METHODS: From January 2000 to December 2005, we evaluated all the patients admitted at the CFS Unit of the Aviano National Cancer Institute, for staging procedures and treatments[​IMG]. Patients not meeting the Fukuda diagnostic criteria were excluded.
    RESULTS: 250 male and 491 female (median age 35.5 and 39.3 years, respectively) were enrolled and treated for CFS. As expected, CFS resulted from previous infectious disease in all patients. Female patients showed to be more affected by symptoms than male patients. The treatment schedules followed by the patients included nutritional supplements alone, corticosteroids, antidepressant/sedative drugs, and antiviral/immunoglobulin drugs. Antiviral/ immunoglobulin drugs achieved the best response (15.3% positive responses vs. 8.3% negative responses; OR 0.44, CI 0.26-0.74, p = 0.002). The carrying out of 4 or more treatments[​IMG] showed a protective effect (OR 0.46, CI 0.28-0.77, p = 0.003). This finding was confirmed in the multivariate analysis, adjusted by type of drugs (OR 0.49, CI 0.28-0.84, p = 0.009) and number of treatments carried out (OR 0.51, CI 0.30-0.86, p = 0.01); these two variables were independent.
    CONCLUSIONS: These findings show that the antiviral/immunoglobulin approach has a longer positive disease free survival in comparison with other approaches. However, CSF still remains a difficult disease to be effectively treated.

    http://www.europeanreview.org/wp/wp-content/uploads/2847-2852.pdf
    jeffrez, PennyIA, justy and 12 others like this.
  2. minkeygirl

    minkeygirl Senior Member

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  3. Hip

    Hip Senior Member

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    The study says that antiviral + immunoglobulin drugs worked the best, but does not mention which antivirals were used.

    Note that oral immunoglobulin supplements are freely available: ImmunoLin® is a good product.

    What is ImmunoLin®?
    Last edited: Nov 15, 2013
    cigana likes this.
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i couldnt see what other antiviral was used thinking maybe they used valtrex/famvir etc but cant find.
  5. taniaaust1

    taniaaust1 Senior Member

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    Im soo glad to see such a study as this finally done.
    PennyIA likes this.
  6. Ema

    Ema Senior Member

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    It says methisoprinol or inosine. I don't really think of that as an antiviral like Valtrex et al.
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I suppose what i got out of it wasnt the individual treatments as such but more the infectious/immune treatments are more effective then other treatments mentioned. Unless im reading it wrong it also indicates a combination of treatments to be effective.
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    inosine/immunovir is indicated for herpes viruses so i suppose they just put it into the category of antivirals as thats what its used to treat. To be more precise inosine etc is an interferon inducer which itself has antiviral properties.
    snowathlete likes this.
  9. aimossy

    aimossy Senior Member

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    was this published now but it finished in 2005?
    rosie26 and August59 like this.
  10. August59

    August59 Daughters High School Graduation

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    Pretty damn bad when it takes 8 years to get something published!!!!
    Beyond and aimossy like this.
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    probably fighting a battle all the way, i wonder how much other research that proves our point is not published or held up due to politics??
    PennyIA, peggy-sue, MeSci and 4 others like this.
  12. Valentijn

    Valentijn Activity Level: 3

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    I think they're getting the data from a clinic, where different treatments were used over the years, and comparing outcomes retroactively?

    Hard to say how much of an ME/CFS study it is though ... even though everyone had viral onset, only about 25% had PEM.
  13. Iquitos

    Iquitos Senior Member

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    I hope that in the interim they've changed their attitude, indicated in their statement that this disease affects "mostly women." Technically true since more than 50% were/are female, but even in their own cohort 34% were men.

    It would have been better if they had said something like "As in lupus and MS, more females than males are affected."
    peggy-sue likes this.
  14. peggy-sue

    peggy-sue

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    Hmmm. We all know what is implied by framing it in terms of " the disease affects mostly women" rather than correctly, as worded by Iquitos.

    "....silly hysterical women, making a fuss again". :mad:
  15. redrachel76

    redrachel76 Senior Member

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    Maybe when they say "immunoglobulin drugs" they mean actual gamma globulin treatment, not that herbal supplement .

    It's a bit depressing for me. I was once offered gamma globulin infusions. I declined them. I didn't know that it was near impossible to get. Then the kind doctor who offered it died in a freak accident, and I lost the opportunity to try it. I always comforted myself that maybe Gamma Globulin doesn't work or make things worse etc. Now I finally see what might be good statistics on it.

    Does anyone know what "immunoglobulin drugs" really refers to?
    Last edited: Nov 17, 2013
  16. SOC

    SOC Moderator and Senior Member

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    My guess is that they mean IVIG or subcutaneous gamma globulin (both gamma globulin therapies).
  17. Hip

    Hip Senior Member

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    Yes, I think you are right: they most likely used intravenous immunoglobulin in that study, not an oral immunoglobulin supplement like ImmunoLin.

    The intravenous immunoglobulin infusions that you get in a hospital just consist of an extra injection of the immunoglobulin G (IgG) antibodies that the body itself makes to target various pathogens. These IgG antibodies are derived from the pooled blood serum of thousands of blood donors (using this many donors ensures that you collect IgG antibodies that target a wide range of pathogens). These intravenous immunoglobulin act to give your immune system an extra boost.

    Intravenous immunoglobulin infusions are the standard treatment for ME/CFS caused by parvovirus B19, and pretty effective they are too for that form of ME/CFS. Ref: 1

    The oral immunoglobulin supplement ImmunoLin is derived from bovine blood serum. Cows and humans are infected with a not dissimilar range of pathogens, and cows will make IgG antibodies for each pathogen they are infected with. These bovine IgG antibodies help humans fight these infections.

    Although ImmunoLin oral immunoglobulin is not the same thing as intravenous immunoglobulin, and is definitely not as powerful, it might be worth trying.

    Another immunoglobulin supplement is bovine colostrum (derived from the first milk from cows, rather than their blood serum), which contains around 20 to 40% IgG antibodies.
    Last edited: Nov 17, 2013
  18. ukxmrv

    ukxmrv Senior Member

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    I didn't find IVIG useful but then I didn't have any infusions at the same time I was taking antiviral drugs.
  19. Rrrr

    Rrrr Senior Member

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    bumping this thread.

    amazingly (at least amazing to me), i find myself in just this situation: i'm now taking an antiviral (famvir) and getting gamma globulin shots (subcutaneous). i will keep you posted! i just started the shots a few weeks ago and i'm going up slowly. i've been on the famvir for 10 months with no real results.

    is anyone else on both an antiviral and an immunoglobulin drugs.
    maryb and heapsreal like this.
  20. Firestormm

    Firestormm Senior Member

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    This study was looking at treatment responses - not testing to see what biological effect these treatments had or might have had, or indeed what they were supposed to be treating. So it was a retroactive look back at those patients who felt they had responded best in terms of general improvement of their CFS. Unless I have this wrong, and I haven't read the paper so it's entirely possible I have - couldn't this study be used to say: it was a response to placebo? Like, give a patient a pill it reinforces the belief that there is something wrong, but that this pill will help, and it does and the more important sounding the pill, the better the result.

    OK so I have looked at the paper. Don't get me wrong - as a patient I couldn't care less what I was prescribed, or how it actually worked, so long as I felt it did. But there was no analysis of 'disease' in this paper. Patients were judged to have recovered or improved or been cured i.e. the efficacy of the treatment was judged on the symptom improvements associated with CFS - subjective patient outcome measures with what looked to be some sort of questionnaire.

    But like I said. Correct me if I am wrong.

    Thanks Rrrr I must have missed this one first time round :)

    @Bob @Simon Have I got this wrong? Thanks
    NK17 likes this.

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