1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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9th Invest in ME International ME Conference, 2014 - Part 1: Autoimmunity and ME
Mark Berry begins a series of articles on the 9th Invest in ME International ME Conference in London, with a look at three presentations on autoimmunity
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Debates on ME in Dutch Parliament May 14; & Lyme May 15

Discussion in 'Upcoming ME/CFS Events' started by Sushi, May 10, 2014.

  1. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Glad you made it there Justy--thanks for reporting in with only 3 hours sleep! :(

    Yes, when I've been in KDM's office, most of the patients were not on forums--at least the English language forums. Though I have also met several members of this forum there--which was very nice. So, looks like it is true, we are only getting reports from a minority of patients who both have ME/CFS and are being aggressively treated.

    When KDM said that 95% of his patients are now testing positive for some type of bacterial infections, this probably reflects the better testing that has become available in just the last year or two.

    These are probably a group of very nasty and persistent intracellular infections that not only cause symptoms themselves but (as Sergio said above--[he is a medical student, BTW, gone from housebound to the classroom]):
    I don't think the finding that 90-95% of one specialist's patients are positive for one or more of a group of intracellular infections in any way questions the reality of ME/CFS--it just adds another clue as to where to look to discover the mechanisms that have wreaked such havoc on a percentage of our bodies. Even if this research pans out, it is not looking like a 1,2,3 simple chain of causation but like a cascade of very complex changes that, over time, lead to such physical and cognitive impairment.

    I am one of those who is positive for at least one of these infections and I have begun to treat it, but there has been no guarantee or even suggestion that by beating down this infection, I will be well--it is more complex--but I am hoping that this is a step towards stopping the cascade. Other possible steps are presently under research, but as Rich has said, treating the terrain (in this case intracellular infections) is a necessary step.

    Best,
    Sushi
  2. justy

    justy Senior Member

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    Luckily I managed to get them to change my room tonight to a quitter one - I honestly could have gouged my ears out at one point!

    Appt went very well, will post new thread to let everyone know at some point soon.
    merylg, serg1942 and Sushi like this.
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    A report of the Dutch Parliamentary debate on ME has just appeared in a Dutch newspaper. I used Google Chrome to read it and will paste in the translation from the Dutch--obviously a poor translation but, I hope, better than nothing! :rolleyes: For anyone who can read the original, your corrections would be most welcome! The first quote is by Prof. De Meirleir, but there is much more in the article. You can see the full article here.

    And, from Dr. Hans Klein, a psychiatrist and researcher working at the University Medical Center Groningen who characterized ME:

    And again from Prof. De Meirleir:

    froufox, serg1942, Valentijn and 5 others like this.
  4. Jemal

    Jemal Senior Member

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    Has the revolution started? I wonder.
    A Dutch psychiatrist doing PET scans and finding inflammation. The hospital in Nijmegen, always promoting CBT, now doing trials with anti-inflammatory medication (they were recruiting a couple of months ago)?

    We have a long way to go, but I think the balance is tipping.
    froufox, serg1942, Sushi and 3 others like this.

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