1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Brain Cells Making us Sick? The microglia connection in ME/CFS & Fibromyalgia
Simon McGrath looks at theories that microglia, the brain's immune cells, could trigger and perpetuate the symptoms of ME/CFS and fibromyalgia.
Discuss the article on the Forums.

Mayo Clinic - need UR stories!

Discussion in 'ME/CFS Doctors' started by Boule de feu, Mar 23, 2012.

  1. xrayspex

    xrayspex Senior Member

    Messages:
    659
    Likes:
    70
    u.s.a.
    boule de feu, sorry for your struggles, ironic isn't it, their poor medical care drives one to anxiety and then they can cry crazy

    that would be great if someday you saw dr hyde

    since it was 18 years ago I didnt say anything, but yes I too had a lame experience at mayo.....did like one xray and rec'd going home and getting graded exercise sort of therapeutic support, back then wasnt any real diagnosis not even fibro, just somatic something or other, was useless
  2. SOC

    SOC Moderator and Senior Member

    Messages:
    4,994
    Likes:
    5,546
    USA
    I wouldn't say that's entirely true. Many of us are happy with our ME/CFS specialists and are still here. If Mayo was doing anything good for PWME, I'd think we'd have somebody here with a positive story. Not a certainty, but a good likelihood, surely. So I wouldn't call us biased in that regard. Biased against their biopsychosocial approach to ME/CFS, maybe, but that's another story.
  3. Boule de feu

    Boule de feu Senior Member

    Messages:
    1,115
    Likes:
    56
    Ottawa, Canada
    I'm glad we are having this discussion. I will keep my money and make sure I put it somewhere else.
  4. SOC

    SOC Moderator and Senior Member

    Messages:
    4,994
    Likes:
    5,546
    USA
    Best of luck with your search for good and affordable care! I'm glad your doctor is sticking with you and continuing to look for problems he can treat.
  5. Gamboa

    Gamboa Senior Member

    Messages:
    193
    Likes:
    152
    Canada
    I go back to see Dr. Hyde on April 4th. I'll ask him how he selects people and see if he will take you on.

    You are so right about him being able to identify all my pathologies, as he refers to them. I can't believe how fast things are moving already.
  6. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,447
    Likes:
    4,182
    Sth Australia
    Just cause you arent well enough to get to a decent doctor, it doesnt mean that you can never get better some. There are many things you could try which you dont need a doctor for eg methylation protocol or whatever. After all that is what any doctor would be mostly doing anyway to try to treat you...experimentation with various things.

    We are all lucky we live in the age of the internet.
  7. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,447
    Likes:
    4,182
    Sth Australia
    One thing Ive found with most doctors, is that they are very happy if they can push their CFS patients elsewhere... most doctors do not really want to be dealing with us.

    Many of the well known ME doctors are willing to work with other doctors who are interested in really helping their ME/CFS patients. There is a couple of well known doctors in other parts of the world who are helping a few australian doctors with their treatment of ME/CFS patients so I guess that can possibly happen elsewhere as well.

    Maybe try to see if there are any doctors in your local area who would be willing to try to get in touch with one of the very good ME doctors for more advice in your care and work under an experienced ME/CFS specialist.

    Ive recently found a very young doctor (she looks like she's just out of uni) and thou she hasnt currently an interest in ME but rather in womens health... Im hoping over time to be able to educate her in it. (I was fortunate as I have now got a CFS specialist also who will help teach her how to treat me).

    Maybe look for someone you can educate in helping you help yourself.

See more popular forum discussions.

Share This Page