Our latest website poll | why we are asking how long it takes to get a firm diagnosis of ME/CFS? | 31 August 2015

August 31, 2015

The reason we are asking this question is because the results will link in with this year's Big Give Christmas Challenge.

This will be raising money to support an MEA campaign in 2016 to improve the time it takes for people to get a firm diagnosis of ME/CFS.

We know from previous patient surveys, and from member feedback, that obtaining a diagnosis of ME/CFS can still be a long and frustrating process – mainly because some doctors are still not sure how and when to make a diagnosis of ME/CFS.

Unnecessary delays in diagnosis often lead to bad management, or no management at all. This is a situation which is clearly unacceptable and needs to change.

So the money we raise during the Big Give Challenge this year will be used to provide educational information to both health professionals and members of the public on how to recognise the early signs of ME/CFS and what should then be done to confirm the diagnosis. We shall also organise a medical seminar on the subject.


5 thoughts on “Our latest website poll | why we are asking how long it takes to get a firm diagnosis of ME/CFS? | 31 August 2015”

  1. I was given a slip excusing me from working for 8 weeks, because of chronic fatigue (F 48.8) after a 10 minute chat with a gp, who told me to go and claim DLA. (I got myself to the CAB for help with that, they said; “You got yourself here so you’re not entitled to it, go away.” I was ill for weeks after getting there. I didn’t know how much harm I was doing, trying to do stuff.
    He said to come back in 6 months.
    I did, he did not change anything.

    14 years on, I still do not have a diagnosis, and my gp, point blank, refuses to give me one.
    No help, no advice. Left to rot.

  2. I was given a diagnosis from a general medical consulant at my local hospital
    Quote, we cant find anything wrong with you so you fall into the cfs/me catagory.
    treatment Amitriptyline, that was 7 years ago like peggy-sue says no help no advice
    left to rot.

  3. Having had PVFS for a year, signed off from work, and still very ill, I was fortunate that a bright young locum doctor referred me to a Consultant Neurologist who after a month of tests diagnosed me with M.E.

    The problems then began when although having been given the above diagnosis, the Head Doctor of my Health Centre was extremely brusque with this diagnosis, as he did not believe in ´Malingerers Excuse´ (M.E.) and dictated this to his 5 other doctors in the practice accordingly.

    This meant that I could not access any medically related social services or welfare benefits…absolute hell.

    1. My GP rapidly referred me to a Consultant – this was in 2003 – who diagnosed PVFS and signed me off for 6 months. He did various tests. Unfortunately, he didn’t advise me to limit my activity in any way, and I made no progress towards any sort of recovery. His successor told me to double my exercise level within 3 months! When this didn’t work, fortunately a specialist ME/CFS clinic had just opened and I was referred to that. I was diagnosed with CFS/ME there by a psychiatrist who told me he thought ME was a biopsychosocial illness – this was in 2005 – two years later, though the initial diagnosis enabled me to get benefits in the then less draconian benefits regime.

  4. These are experiences I hear and read about all the time, what,s the point of a early firm diagnosis if all it does is get the door to any medical care from the NHS firmly slammed in your face ?

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