Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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ME-prof. Gottfries interviewed about Staph vaccin, B12+ folate treatment a.o.

Discussion in 'General Treatment' started by Helen, Oct 3, 2014.

  1. Helen

    Helen Senior Member

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    Professor Gerhard Gottfries has been interviewed about ME/CFS and the treatments that the Gottfries ME-clinic have been most successful with so far. He also talks about their ongoing research. Prof. Gottfries got ME/CFS himself in1957 after a flue, and found out that a staphyloccus vaccine was of great help for him.

    After his retirement he started a ME-clinic! Later it was showed in studies that it made a real change for 65 % of the patients as long as they had access to the vaccine. He has made great efforts to get the vaccine manufactured again, but so far no response. Linda Tannenbaum has visited the Gottfries clinic and showed great interest in taking this further.

    (One carbon metabolism is mentioned and is equal to methylation).










     
    Last edited: Oct 3, 2014
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  2. Lillybelle

    Lillybelle Senior Member

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    Australia
    Hi. @Helen thanks very much for posting these. It's great to hear that finally some double blind trials are being done with b12 and methyl folate.
    This gives me great comfort as I've been on this protocol a while now albeit sublingual B12 and the biweekly shot(doc won't allow anymore than 1 every 2 weeks). So I feel like if the trials work a whole lot of people could start getting symptom relief if they are allowed the right level of b12.

    I shall share these with me/cfs Australia. There will be great interest. Thanks so much again.
     
  3. Helen

    Helen Senior Member

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    Hi @Lillybelle,

    A big thank should go to Erik Nilsson and his son Daniel who interviewed and recorded . I am really sorry to hear that you canĀ“t get B12 injections more often. The doctors at the Gottfries clinic (and some other too working with ME patients in Sweden) listened at their patients, and when they witnessed a strong, positive effect from B12, but an effect that faded away, they let the patients take the injections more often not to get ups and downs in wellness. Luckily, I was one of them. As you say it is about finding the right level of B12 ( and folate...) to get symptom relief.

    As folic acid has been the only form of folate to prescribe in Sweden this has been used, and with success for lots of PWME. I know this is controversal in the board, but this is a fact. More people might have gotten help if folinic acid and methylfolate also had been available.

    Like you, I am looking forward to studies in this field being presented. Hope you can find a way to get more of B12 to start with.
     
    Last edited: Oct 3, 2014
  4. Raines

    Raines Seize. Eggs. I don't know. Zebra. Eighties.

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    Helen,
    thank you for posting a link to this thread, it is very interesting and I will now try adding in folic acid to my sublingual B12.
    Proffessor Gerhard Gottfries is a very interesing man. I will have to look into him and his treatments some more.
    thanks again
     
    Helen likes this.

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