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Staph vaccine to treat CFS??

Discussion in 'Latest ME/CFS Research' started by SpecialK82, May 4, 2010.

  1. Allyson

    Allyson *****

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    Coincidentally Justy the genticist asked me about nosebleeds

    easy bruising and bleeding and slow wound healing are common symptom of EDS

    I have had nosebleeds for years but never made any connections.

    the gritty eyes - i have heard of that as a common ME symptom - like sandy grit - sleep - in the eyes - i have had it every morning for years now - i think due to dehydration maybe at a guess?

    my nose bleeds go back at least 20 years as i remeber thinking they were due to insulation we had fitted then but they persisted despite change of house to one woith natural seaweed insulation

    they are occasionally heavy but almost always there as a constant light bleed

    hope this helps some
     
    justy likes this.
  2. Helen

    Helen Senior Member

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    Hi,
    I have an appointment with Prof. Gottfries ( my first one) in June, so I hope to be back here with some information after that.

    Justy,
    Lack of vitamin A might also cause nose bleeding. People with a low thyroid are more prone to this deficiency because they can´t convert betacarotene to vitamin A. Maybe you already knew this, but just for sure.
     
  3. Snow Leopard

    Snow Leopard Senior Member

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    Several papers not yet mentioned in this thread:

    The first paper from 1998:
    http://www.ncbi.nlm.nih.gov/pubmed/10700309
    Unfortunately, the full version does not seem to be available online at the moment.

    Second paper:

    http://www.iacfsme.org/Portals/0/pdf/Gottfries Dec09 168-183(2).pdf

    The results look interesting, but the lack of replication seems to be due to the product being relatively unavailable, due to low sales (and resulting low scale/expensive production using decades old methods) and was subsequently discontinued in 2005. A few patients were allergic to the preservative too, but that would be eliminated with the development of a new product. But it seems to be a catch-22, the drug company doesn't want to bother as they don't consider there to be a market, but there won't be a market unless there were more trials...
     
    rosie26, jeffrez, ballard and 2 others like this.
  4. jeffrez

    jeffrez Senior Member

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    Yes, please! Would definitely try this. Wouldn't it suck if something that could really help a ton of us was just simply unavailable b/c the manufacturer wasn't making enough profit from it? Argh.
     
  5. Tammy

    Tammy Senior Member

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    I couldn't read all the information on this........too long for me right now, but why did they pick that particular vaccine in the first place? I suspect that whatever the immune system is doing in response to the vaccination could be improving symptoms...........like whenever I get a cold (which is not very often) my immune system kicks in does its thing and I feel better ( my me/cfs symptoms) and I mean significantly better. Another member said when she had a sinus infection, her me/cfs symptoms were better. When my body isn't fighting an infection I go back to my usual symptoms. I would be more impressed if the vaccine was having a permanent affect but the study showed that it had be continued to prevent relapse which is OK I guess...........I'm wondering if eventually it will have a lasting affect? I can't remember right now the particular vaccine that has been used for years in integrative medicine to help some conditions but the concept is not new.
     
    Last edited: Nov 1, 2013
  6. Helen

    Helen Senior Member

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    The production of the Staph vaccine was shut down as the preservative was thimerosal (mercury) that some people couldn´t handle. I don´t know If it was an allergic or toxic reaction they showed up with. I know people who were offered a trial with the vaccine but as they already had had severe reactions to amalgam/mercury fillings they were excluded when this was known
    The company claimed that it should have been too expensive for them to change the production and exclude thimerosal.
    The doctors who had been working with the vaccine, one of them a ME/CFS patient using the vaccine himself , tried to start a production but never succeeded. Too long way today, and too much money needed.
     
    Last edited: Nov 3, 2013
    jeffrez likes this.
  7. Helen

    Helen Senior Member

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    This Staph vaccine was rather commonly used from the 50ths for children with more and/or severe infections than normal. It was seen as helpful. One of the doctors at the ME/CFS clinic who got sick after a flue tried the vaccine and got much better. He has been able to work full-time.

    It was recently summarized as decreasing severity of symptoms with 50% among one third of people who got the vaccine.

    Too bad this vaccine hasn´t been developed and produced.
     
  8. Tammy

    Tammy Senior Member

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  9. Helen

    Helen Senior Member

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    @Tammy
    I was told that it was not specifically staph infections (not mentioned at all) but other infections like colds and similar.
     
    Last edited: Nov 3, 2013
  10. Tammy

    Tammy Senior Member

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    I'm still trying to figure out how this vaccine thing started?.............I mean what was the reasoning behind whoever started this thing. What gave someone the idea that the staph vaccine might help with other conditions? I am just curious as to the line of reasoning............the physiology behind it. I mean if this is truly helping some with me/cfs.......wouldn't knowing the theory behind it......be helpful perhaps for research? Is this favorable response to the vaccine.....along the same lines as what happens to some of us when we get an infection? Our immune systems are responding true a trigger.......whether it be a vaccine, infection, etc..........and as a result of whatever happens in that response process........our me/cfs symptoms are better. (only speaking for some of us)......I know this isn't the case for everyone with CFS. I remain interested in why this is happening.
     
    Last edited: Nov 3, 2013
  11. Helen

    Helen Senior Member

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    I suppose there is a discussion and hypothesis, that you -and me- would like to see, in the studies presented by the researching doctors. Sorry, I don´t have access to the full articles. Maybe someone is able to find out more, as I think this is very interesting as a treatment and how it is thought to work
     
  12. Ninan

    Ninan Senior Member

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    Thanks, Hip. Now can you make the disease itself less complicated? Please? ;)

    Have you heard of the vaccine making 60-65 % better? Half of them got much better. And the effect seems to be lasting.

    "Professor Gottfries is a ME-sufferer himself and takes this vaccine to keep in good shape. The vaccine was originally designed to adress stafylocock-infections. As professor Gottfries realized that the vaccine was helpful for ME he began to treat his patients with it. Unforunantely and despite protest from Gottfries and colleagues the vaccinemanufacturer decided not to manufacture this particular vaccine in 2005. Gottfries bought a box full of vaccine for himself and this source keeps him healthy but unfortunantely he has nothing to offer his patients. Professor Gottfries has now decided to, if possible, start the manufacturing again. Research on the vaccine has been done in "Fibromyalgia/Chronic Fatigue Syndrome - Aspects on biology, treatment and symptom evaluation" in Gothenburg university."

    They need 900 000 USD. That's nothing.
     
  13. Hip

    Hip Senior Member

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    @Ninan
    Yes, I have heard of this. There is a thread about using Staphylococcus toxoid vaccine to treat ME/CFS here:

    Staph vaccine to treat CFS??

    Staphylococcus toxoid vaccine contains 80% alpha toxin (also called alpha hemolysin), which is the active ingredient.

    I tried to find a manufacture of injectable Staphylococcus vaccine, but could not find one.

    I am not sure why this vaccine was discontinued. If it was working well for ME/CFS, then you expect large sales (since 0.2% of the population has ME/CFS), and thus good profits. I can only assume that the benefits of this Staphylococcus vaccine were not that great, or the cost was very high, and that's why ME/CFS patients did not buy it when it was available in the past.

    If enough of us ME/CFS patients could get together and find a company that is capable of manufacturing this Staphylococcus vaccine, and we made it known to that company that we would all buy the vaccine (guaranteed sales), then perhaps this might convince such a company to make it again.
     
  14. Ninan

    Ninan Senior Member

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    I know these people. The reasons for discontinuating was 1) that since the coming of penicillin this vaccine was used less and less for other stuff and 2) that the Swedish FDA forbade the use on PWME:s because one of the ingredients was mercury. The authoroties were concerned that repeated use would cause poisoning. So the Gottfries clinic need 900 000 USD to manufactor a vaccine just like it but without mercury.

    The third reason was probably the usual: ME/CFS is not known and not considered a disease on which you can make money.

    There was nothing wrong with the trials or the result.
     
    Last edited: Dec 8, 2013
  15. Ninan

    Ninan Senior Member

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    It all started when prof Gottfries himself got ME/CFS. He guessed it had something to do with immunity and tried various treatments on himself. This vaccine worked. He still uses it. And they still need 900 000 USD. I'm pretty sure it has nothing to do with having an infection or not. The vaccine modulates the immune system -- they have found changes in serum -- and that's why we get better.
     
  16. Hip

    Hip Senior Member

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    Well, if ME/CFS patients in the past have taken this Staphylococcus vaccines for many years, and generally felt better not worse, then the mercury could not have been causing much harm.

    And if Professor Gottfries is still using his old stock of Staphylococcus vaccines to treat his own ME/CFS, these will contain mercury.

    I would be happy to try out a Staphylococcus vaccine with a mercury preservative, but I cannot find any manufacturers.

    This page lists various Staphylococcus vaccine manufacturers, but I cannot find any websites where they actually sell these vaccines.
     
    Last edited: Dec 8, 2013
  17. mellster

    mellster Marco

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    I think this could be the preferential treatment, avoiding ABx resistance if they are right. I also think there is a big possibility that they are onto something here, at least from what I know a big group of CFS patients are borderline anemic and this could be explained with staphylococcus destroying red blood cells.
     
  18. Ninan

    Ninan Senior Member

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    Some reacted to the mercury, some didn't. The clinic have been searching "the whole western world", as they say, but haven't found any replacer. Sadly.

    It's crazy though. People buy houses for much more and it would even be a good investment and still...

    The Meyou-foundation has raised half that amount in a short time. It should be possible.
     
  19. Helen

    Helen Senior Member

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    @Tammy , @mellster and Ninan
    No Ninan, as you say, it has nothing to do with any ongoing infection or staph´s . Its effect is on the immune system as you say. You wrote "that´s why we get better". Do you use the vaccine yourself? Good to see another Swede here :).
     
  20. mellster

    mellster Marco

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    Sure it has immunemodulatory effects,but a staph vaccine is designed to trigger staph antibody production and therefore cut down on infections, possibly incl. chronic subacute ones. Here is a recent article about a vaccine against s. aureus:
    http://abcnews.go.com/Health/story?id=117950
    Of course raging acute/progressed infections would likely need to be additionally treated either via ABx and/or phage therapy.
     

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