Do we have a good summary about diagnosis and treatment?

Discussion in 'Fibromyalgia Main Forum' started by SpiroSpero, Oct 20, 2008.

  1. SpiroSpero

    SpiroSpero New Member

    Hi all,

    since I had a talk with my aunt on Sunday (she is a doctor) I know that I need a good scientific summary about CFS, current diagnosis methods and treatment. She mixes it up with burnout syndrome ("all in their head, they need to eat healthy and they need physical activity so that they get healthy again...").

    I think we all have encountered these claims before :)
    I printed the latest research of the HHV6/7 conference in Baltymore but since it only focuses on viruses I'd love to show her sth. else.
    I'm looking for some interviews with CFS doctors. I have the interview with Dr Holtorf which is pretty nice since he talks about infections, hormones, coagulation and other parts that may interfere with this illness.

    I spoke to her about Prof Montoya and the Stanford trial but as you all know it's just a small subgroup. I know so many people who take Valcyte but there is no way that she prescribes it to me as long as I can't convince her a little bit more about the possible causes of CFS (I have an active HHV-7 infection/ Prof De Meirleir prescribed me Valcyte but I can't find a doctor who prescribes it to me so that insruance pays for it).

    It always gets fun when I talk about EBV and HHV-6 because the first thing doctors here say is: "Nearly 90% of the population are carrying this virus so you needn't worry." "Ye but I'm talking about chronic reactivation." "There is no thing as chronic reactivation...blabla" :D

    So if anyone has some good abstracts about CFS that I could show to my doctor please post them.


    [This Message was Edited on 10/21/2008]
  2. ladybugmandy

    ladybugmandy Member

    go to have dr. lerner's publications on antiviral usage for CFS.


    keep looking for specialists in your area...or you may have to travel.

    don't give up!

    good luck
  3. Rafiki

    Rafiki New Member

    the Canadian guidelines for doc.s. It's written for doctors which doctors always like :~)

  4. gapsych

    gapsych New Member

    There are several studies that may look promising.

    I know one is at Georgetown University and one at the University of Illinois. I am sure there are several more. These two studies were recruiing on this site and several people participated in the one at Georgetown.

    You might want to do a search of these.

    Can't remember if someone mentioned this but there is also a library here that may have some information.

    Knowledge is power!!

    Good luck.

  5. tansy

    tansy New Member

    have been compiled for physicians and are similar to the Canadian guidelines. The Australian guidelines include a useful tick list which can be used for diagnosis; it would exclude burn out syndrome.

    The Canadian guidelines mention problems with CBT, as it is used in countries like the UK Holland and Belgium, and graded exercise. Information on the risks of exercise regimes written for doctors are essential whilst there is now so much unecessary confusion over what ME, CFS, CFIDS are.

    Dr Byron Hyde has written about how to diagnose ME; he contributed to the Gibson parliamentary enquiry in the UK.

    Dr Maes has recently challenged the Belgian parliament; he wrote that although the CFS clinics claim they can find no immunological changes; when he tests his patients he consistently identifies them.

    I had problems with my primary care practice until several of the GPs read about Dr Jonathan Kerr's research; suddenly there was a change in attitude since it explains why we have so many seemingly diverse symptoms. Doctors are taught too many symptoms = psychosomatic.

    Good luck Spirospero.

    tc, Tansy
    [This Message was Edited on 10/20/2008]
  6. SpiroSpero

    SpiroSpero New Member

    While I just read your answers the sun came out...what a coincidence ^^

    Thanks a lot. I'll read all of it tonight :)

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