Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
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ME/CFS Awareness in Romania.

Discussion in 'Advocacy Projects' started by bananabas, Sep 12, 2015.

  1. bananabas

    bananabas Senior Member

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    It is hard to evaluate the current level of ME/CFS awareness in Romania. I have yet to meet a doctor that has heard of this, or another pacient. A web search reveals a few outdated articles, and no official organisations.

    A bit of digging on PR revealed two Romanian users, @romeomilea and @Alexandru Matei.
    If there are others, I urge you to come forward, and perhaps together we can set up a Romanian website with information for pacients, useful links, a curated list of helpful doctors, and perhaps even kickstart some fund raising initiatives.
     
    worldbackwards, ZudZud, Hutan and 4 others like this.
  2. ZudZud

    ZudZud

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    Hi @bananabas

    As you might have figured out for yourself, this is a bad place to be if you're chronically fatigued. After seeing a couple of dozen doctors over the past ten years, I ended up with a list of people to never visit again and just a few that helped.

    I know one that really helped me with things like
    "hey, you didn't test for those things yet, it could be -insert rare disease here- "
    or
    "it might be wise to repeat that test 6 months from now just to monitor it".

    She helped me find a few severe deficiencies and an infection, rule out a lot of autoimmune diseases, that was great since it was more than any other doctor did for me, but as far as CFS goes, everyone here is in the dark, even though there are some like her, who understand the disease exists, they don't have the knowledge, resources, labs and willingness to specialize in such an obscure condition.

    You will not find anyone to (for example) help you set your methylfolate dosage or anything like that. As far as doctors here are concerned, if they didn't learn about a substance in school (based on books written in the 50's) then such a substance does not exists and therefore it doesn't concern them. It's solid logic, right?

    I have not met any specialists on ME/CFS around here, had my share of bad and very bad experiences with doctors.
     
    Last edited: Dec 21, 2015
    bananabas likes this.

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