Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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Discussion in 'General ME/CFS Discussion' started by Jessie 107, Apr 15, 2017.

  1. Jessie 107

    Jessie 107 Senior Member

    My doctor has told me that he thinks I have me/cfs then referred me to a rheumatologist. After seeing him and having more blood work done, which all came back normal, he wrote to my doctor saying he thinks I have cfs and I should be referred to a cfs specialist to confirm diagnosis.
    My question is who gives me diagnosis? Is it my doctor? Or should I wait to see the specialist?
    Invisible Woman likes this.
  2. TakMak

    TakMak Coughs and sneezles spread diseasels

    Cumbria, UK
    I'm in the UK too and I got given a diagnosis of ME by my GP some 18 years ago. After a serious relapse last year I was then referred to a neurologist who was also able to diagnose ME. Because of my other symptoms I was then sent to a rheumatologist who diagnosed me with fibromyalgia. I got a feeling that they only diagnose things that they feel comfortable about diagnosing.
  3. Invisible Woman

    Invisible Woman Senior Member

    I'm in the UK and I was diagnosed by a consultant. I think my GP suspected it and had sent me off to the hospital to rule stuff out.

    It depends on how confident your GP is about making the diagnosis really. I've seen that 40-45% of patients referred to specialists are misdiagnosed and have other, sometimes treatable, conditions.

    Given the current political climate against pwME in the UK, it is not necessarily a bad thing that your GP is being a bit cautious before slapping a diagnosis on you.
    hellytheelephant likes this.
  4. ukxmrv

    ukxmrv Senior Member

    Maybe the question to ask is why you want a diagnosis and who is the expert that would be able to give you the most accurate one?

    CFS as a diagnosis in the UK can potentially be a blight on your medical records. Some doctors use it as a "waste basket" for any type of tiredness. Once CFS is on your records further investigations may stop and you can run the risk of being offered only psychological or exercise treatments.

    If you think that a CFS diagnosis may be useful to you it can come from one of the CFS clinics or various NHS Consultants. Some Rheumatologists think that Fibromyalgia and CFS are the same thing and diagnosing patients themselves.

    At this point it may pay to become your own health expert, read some of the CFS criteria and the tests needed. Also learn as much as you can about common misdiagnoses.

    Hope that helps. I'm just trying to look back and see what would have been useful for me to know at the start.

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