Diagnosis?

Hello Starbys,

I am new to HU. I read your post and you are obviously clued up on the subject. I wonder if you or others would give me an opinion please. Briefly, I became fatigued following a flu like virus in 2002. Visited countless doctors where I was fobbed off until 2011, when a new doctor at my local practice took me seriously and sent me to an NHS specialist. After a few minutes of conversation the 'specialist' declared me as having CFS/ME and asked what I thought he should do about it! I answered "How about some tests to see if I am suffering from some other illness that could be causing the fatigue". The answer, which I am sure you have heard before was "Under the NICE guidelines I can offer you no tests, only GET and CBT". I explained that I had been a member of a CFS/ME/FM group for years and none of those at the group that had taken up this offer had improved, in fact most were made worse. So I declined his offer of therapy(?)

In my opinion, I could be suffering from one (or more) of a whole range of illneses, but have no way of finding out what, or at least eliminating illnesses that can cause fatigue. lupus. Has anyone been through anything similar? Any advice would be welcome please.

Best regards,

Somediagnosis

3 Replies

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  • According to NICE guidelines your GP is correct the treatment for CFS/ME is CBT and GET, (check out pacing also).

    HOWEVER - to diagnose CFS/ME it is done through a process of elimination 0 the GP needs to carry out the physical tests to make sure they are not the root problem. At the very least there should have been a whole battery of blood tests to rule out Thyroid or Iron problems, among many others!

    Go back to your GP, (or see a different one in the practice) and ask for tests to rule out any physical causes of your difficulties.

    Good luck

  • The ME association have a booklet (The Purple Book) free for GPs, you need to ring them with your doctor's name and address - the book is free:

    meassociation.org.uk/2014/0...

  • Hi somediagnosis,

    I'm afraid u are in the same rubbish boat we are all stuck in.

    The NHS do the most basic set of blood tests, and no other tests and then diagnose 'CFS/ME'.

    As a result, many people are misdiagnosed and find out years later that they had another disease all along.

    Some obviously do have ME but there are no definitive answers as the NHS won't routinely do the tests.

    You are quite right that chronic fatigue is just one symptom of numerous chronic diseases, only one of which is ME.

    Whether it is more likely you have ME or something else depends on what your other symptoms in addition to fatigue are.

    Or do you just have fatigue?

    If you have other symptoms, if you could tell me what they are - only if you want to that is - then I could try to point you in the right direction of some possible causes that you might want to consider looking into with your drs.

    But these would just be estimates based on a fellow patient's knowledge as I am not a Dr.

    But I will try to help you out if u tell me what your other symptoms apart from fatigue are.

    it is a very complex subject with a long and messy history and it's understandable you are having a hard to time getting to grips with it as all patients with a 'CFS/ME' diagnosis do in the first few years of diagnosis.

    I only know so much as I've been ill for so many years.

    if you would like to discuss further then ur welcome to reply to this post! :-)

    My reply may be delayed but I always try my best to reply as soon as I can.

    best wishes,

    also welcome to the community, I hope you find it helpful here!

    Starbys :-)

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