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Discussion in 'General ME/CFS Discussion' started by digital dog, Nov 22, 2015.

  1. digital dog

    digital dog Senior Member

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    I am seeing more and more news articles of immune boosting drugs being used for cancer patients.
    I wonder if we will find that more ME patients being treated for cancer improving like in Norway.
    I believe these immune boosting drugs that are given to cancer patients hold great promise for us.
     
  2. helen1

    helen1 Senior Member

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    It is promising isn't it. but it's also confusing. Rituximab inhibits part of the immune system yet the immune booster that Dr. Gottlieb used, to apparent good effect, was a vaccine which would in most cases stimulate the immune system. They're opposite immune effects. Subgroups might explain that.

    Cort explains it well in his latest health rising article.
     
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  3. sillysocks84

    sillysocks84 Senior Member

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  4. sillysocks84

    sillysocks84 Senior Member

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    Rtx wipes b cells out, so doesn't that dampen the immune response? But this Dr. Gottfries got great results from raising immune response with a toxoid in the berna staph vaccine. So what does that paradox mean? How do both ways help? If one doesn't work for a specific subset, could possibly the other treatment be the answer? @Hip @Jonathan Edwards @Theodore do any of you understand this paradox? Is it a paradox or am I missing something here?
     
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  5. Hip

    Hip Senior Member

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    Prof. Carl-Gerhard Gottfries says that he does not know the exact mechanism by which the Staphylococcus toxoid vaccine works to improve ME/CFS. However, work it indeed does: for many ME/CFS patients, including Prof Gottfries himself, regular monthly administration of this Staphylococcus vaccine makes the difference between being able to go back to full time productive work, instead of remaining at home languishing with this illness. Prof Gottfries has now used this vaccine monthly for 50 years to keep his ME/CFS at bay.

    Gottfries does note however that the toxoid vaccine has a superantigen effect. A superantigen is something which incapacitates rather than boosts the immune system. Superantigens overload the adaptive immune system, weakening its ability to mount antibody responses to infections. This is why some bacteria and viruses synthesize superantigens, in order to thwart the immune response.

    Staphylococcus in fact possesses many superantigens. On of them is Staphylococcal protein A, a B-cell superantigen, and may well be found in the Staphypan® Staphylococcus vaccine used by Prof Gottfries for himself and for his patients.

    Staphypan consists of extracts from killed strains of Staphylococcus aureus and Staphylococcus epidermidis, plus Staphylococcal alpha toxin. High levels of lipase, alpha toxin, enterotoxin B, toxic shock syndrome toxin 1 (TSST-1) and cell wall antigens were found in the vaccine in a study by Zachrisson. Ref: 1 Note that enterotoxin B and TSST-1 are potent superantigens.


    Perhaps @Jonathan Edwards can offer some insight or speculations as to how Staphylococcus superantigens might have beneficial effects for ME/CFS (perhaps by modulating B cell autoimmune processes?).

    One of Gottfries's studies:
     
    Last edited: Nov 22, 2015
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  6. alex3619

    alex3619 Senior Member

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    Superantigens do so very much. Its also the case that it probably will stimulate some parts of the immune system, and inhibit others. It will cause shifts in the immune response pattern.

    As most here know the immune system is not some monolithic thing. Its intricate. As one part gets suppressed, often some other part gets amplified. Immune cells can also migrate toward superantigen sources.

    In other words, this is the kind of thing begging for more research, and which rarely happens in any adequate sense.
     
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  7. Theodore

    Theodore Senior Member

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    I don't have the knowledge and the background to answer that! Maybe Dr. Edwards can.
     
  8. digital dog

    digital dog Senior Member

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    I always find it interesting that some people with ME are always sick and others are never sick (in the normal way).

    This probably links to what you have just posted but Im too tired and ill to work out how.

    Thank you for taking the time to reply
     
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  9. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I think I would want to see some evidence of efficacy of a staph vaccine in a reliable controlled trial format before trying to answer that one. Anecdotal evidence from a doctor who claims to have benefited himself from the treatment does not fill me with an awful lot of confidence I am afraid.
     
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  10. Hip

    Hip Senior Member

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    There were two such placebo-controlled trials of the Staphylococcus toxoid vaccine for treating ME/CFS (for the placebo they used a distilled water injection with a dye that made it look identical to the real vaccine). The larger trial followed 100 ME/CFS patients over 6 months; the smaller trial followed 28 patients for up to 6 years:

    Treatment with staphylococcus toxoid in fibromyalgia/chronic fatigue syndrome--a randomised controlled trial

    Effects of staphylococcus toxoid vaccine on pain and fatigue in patients with fibromyalgia/chronic fatigue syndrome
     
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  11. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    So why has there been no further work on this since 2002 I wonder?
     
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  12. duncan

    duncan Senior Member

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    At the risk of going out on a limb, I suspect no further work has been done on this since 2002 because that is pretty much SOP when it comes to ME/CFS research efforts - regardless of merit.

    One step forward, the next step off the cliff into never-never land.
     
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  13. msf

    msf Senior Member

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    Because, as Duncan was alluding to, the vaccine is no longer available.
     
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  14. Hip

    Hip Senior Member

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    Mainly because the Staphypan® Staphylococcus toxoid vaccine was unfortunately withdrawn from the market in 2005 (due to new GMP rules in the EU and US, the manufacturer Berna Biotech would have had to have spent a lot of money to bring this vaccine up to date with the new GMP standards, so they decided to drop it, in spite of considerable protests from Prof Gottfries and his ME/CFS clinic in Sweden, which used the vaccine as the mainstay of their ME/CFS treatment).

    Prof Gottfries says that he has been unable to find a replacement vaccine anywhere in the Western world.

    Gottfries is a psychiatrist by profession, and only set up his ME/CFS clinic and his research program after his retirement in 1992. However, he initially started using this vaccine to treat ME/CFS some 50 years ago, just after the 1957/8 Asian flu epidemic, which apparently triggered a chronic fatiguing illness in some patients in Sweden.

    During the epidemic, a hundred or so of these extremely fatigued post-Asian flu patients were referred to Gottfries's psychiatric unit, because at the time the internists could find nothing wrong with the patients, and no explanation for their severe fatigue, so assumed a psychosomatic illness. But Gottfries investigated these patients and their medical history carefully, and found that they were quite mentally normal.

    Gottfries then caught the Asian flu himself, and soon after developed exactly the same fatiguing illness. He spent several years in self experimentation, trying out treatments, and discovered that this Staphypan vaccine pretty much eliminated his fatigue, and allowed him to go back to work. He soon also discovered that this vaccine worked for many other Swedish patients with Asian flu-triggered ME/CFS.

    Then for a while Gottfries began treating ME/CFS patients in his psychiatric unit using this vaccine, but eventually the head of the unit, who did not like this setup, asked him to stop. Gottfries only then took up the vaccine research and treatment after his retirement. Though he himself (and some others too) have taken this Staphypan vaccine every month for 50 years, which enables him to continuing working. He says when he stops, he gets a relapse (he stockpiled doses of the vaccine just before it was withdrawn).


    All the above comes from this video interview with Prof Gottfries.
     
    Last edited: Nov 24, 2015
  15. msf

    msf Senior Member

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    Sounds like some kind of parable.
     
  16. Helen

    Helen Senior Member

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    The complete list of works on the Staphypan vaccine from the homepage of the Gottfries Clinic.
    http://www.gottfriesclinic.se/forskning/egna-artiklar/
    The vaccine wasn´t on the market after 2006.

    Barregard L, Rekic D, Horvat M, Elmberg L, Lundh T, Zachrisson O. Toxicokinetics of mercury after long-term repeated exposure to thiomersal-containing vaccine. Toxicol Sci 2011 Jan 20. (Epub ahead of print).

    Carl-Gerhard Gottfries* MD, PhD¹, Ove Häger RN¹, Johan Gottfries PhD², Olof Zachrisson MD, PhD¹. Immunotherapy of Fibromyalgia and Chronic Fatigue Syndrome by a Staphylococcus Toxoid Vaccine Bulletin of the IACFS/ME Vol 17, Issue 4 Winter 2009-10,1-11.

    Gottfries Carl-Gerhard, Häger Ove, Regland Björn, Zachrisson Olof. Long term treatment with a staphylococcus toxoid vaccine in patients with fibromyalgia and chronic fatigue syndrome. Journal of Chronic Fatigue Syndrome Vol 13(4) 2006 31-43.

    Zachrisson O, Colque-Navarro P, Gottfries C.G., Regland B, Mollby R. Immune Modulation with a Staphylococcal Preparation in Fibromyalgia/Chronic Fatigue Syndrome: Relation Between Antibody Levels and Clinical Improvement. Eur J Clin Microbiol Infect Dis. 2004 23: 98-105

    Zachrisson Olof, Regland Björn, Jahreskog Marianne, Jonsson Michael, Kron Margareta, Gottfries Carl-Gerhard. Treatment with staphylococcus toxoid in fibromyalgia/chronic fatigue syndrome – a randomised controlled trial European Journal of Pain 2002 6:455-466.

    Gottfries C-G (1999) Treatment of fibromyalgia and chronic fatigue syndrome with staphylococcus toxoid. Proceedings of ”The clinical and scientific basis of chronic-fatigue syndrome: from myth towards management”, International meeting in Sydney, Australia, 11-12 February, 1998, pp 69-78.

    Andersson M, Bagby JR, Dyrehag L-E, Gottfries C-G (1998) Effects of staphylococcus toxoid vaccine on pain and fatigue in patients with fibromyalgia/chronic fatigue syndrome. European Journal of Pain 2:133-142.
     
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  17. msf

    msf Senior Member

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    I´ve forgotten (and am too lazy to check): did Gottfries link the efficacy of the vaccine to finding of Chlamydial HSP60 in ME patients?
     
  18. Helen

    Helen Senior Member

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  19. Hip

    Hip Senior Member

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    The study by Carl-Gerhard Gottfries, Olof Zachrisson, Jonas Blomberg et al, which found autoantibodies to heat shock protein HSP60 in 24% of ME/CFS patients, provides some evidence for an autoimmune basis to ME/CFS.

    Though HSP60 autoantibodies are not the only autoantibodies that have been found in ME/CFS; several other types of autoantibodies have also been found.

    In general, Prof Gottfries thinks that ME/CFS is likely caused by a lingering infection, and/or an autoimmune response triggered by that infection.

    As far as I am aware, there is no specific link between the vaccine treatment and the discovery of these autoantibodies to HSP60. However, it is conceivable that the benefits of the Staphypan vaccine arise through it ameliorating the autoimmune processes in ME/CFS patients; but what the mechanism of amelioration might be, that remains open to speculation.
     
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  20. msf

    msf Senior Member

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    That was a confusing paper. It definitely mentioned Chlamydia somewhere - were they suggesting molecular mimicry?
     

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