How long did it take for you to obtain a diagnosis for your ME/CFS? | take part in our on-line survey for February 2016

February 1, 2016

In our ‘quick survey' this month, we are asking people how long it took for them to obtain their diagnosis of ME/CFS – because we would like some up-to-date figures for a campaign in ME Awareness Week to try and persuade more doctors to commit to early and accurate diagnosis in order to improve the health of their patients.

Our Big Give Christmas Challenge, which was held in December, raised over £12,000 to pay for the campaign which will be aimed at getting a simple and clear message into doctors' surgeries in May.

The message is that early and accurate diagnosis will help patients make informed choices about their futures. Many patients will therefore be able to avoid acting on inappropriate advice to exercise their way out of this illness – which countless patient surveys have shown can actually be harmful to the health of people with M.E.

We have had to amend the quick survey this morning because, when we posted it last night, we omitted a key question that asks how many people have had to wait over 10 years for a doctor's diagnosis. We apologise for this and ask for those who took part in the survey overnight to come back to it again today and do it once again.

13 thoughts on “How long did it take for you to obtain a diagnosis for your ME/CFS? | take part in our on-line survey for February 2016”

  1. After about 1 yr a homeopathic doctor suggested it was a possibility. After about 2 years, an NHS consultant did.

  2. About a year and it was by Hospital Physician. Started with infection and viral labyrinthitis. Next they thought brain tumour and that was negative. Progressively kept getting worse until diagnosis. Now 18 years later my surgery doctors are saying I’m suffering from various conditions and that M.E. cannot still be infectious to be affecting me. What can I say??? Not fit to argue with them.

  3. I started with other diagnoses, then ME, but they were only assessing using Oxford Criteria. That’s still the same throughout UK, isn’t it? So it’s a rubbish bin diagnosis.

    We need much more discerning criteria. Personally, I favour ICC – Intermational Concensus Criteria. I insist this is used now. When GPs read this, they sit up and take notice. They treat this seriously.

    Charles Shepherd, I’m not sure what Me Ass think of Oxford Criteria and Fuduka Criteria. They are dismissed by many people with severe ME as too vague to discriminate between ME and other illnesses

  4. It took 3 years after I retired on health grounds in 1993. The GP felt that I had ME (that was in 1993) and she did call it ME before referring me to Professor Behan, a renowned expert in neurological sciences in Glasgow. I was later referred to Infectious Diseases in Edinburgh. We have very poor services in Scotland with one ME nurse in my region despite lengthy deliberations at a cross party group on ME which I regularly attended. GPs are unaware of the good practice statement developed at this group but my GP warmly received the ME Association’s guide on ME CFS PVFS An Exploration of the Key Clinical Issues as did the breast cancer unit when I was treated for breast cancer. I provided copies for both by way of education.

  5. It took 6 months for a GP to suggest ME. However, it took 2 years to get a diagnosis from one of the NHS ME clinics.

  6. At least 16 months until diagnosis, but I’d had years of abnormally fatigued periods, that came and went and were dismissed by doctors They waited to diagnose me until I couldn’t get out of bed. Had I been given a diagnosis and advice in time, it could have been nipped in the bud, as rest always improved it. But I felt I had to try and work in order to prove I was genuinely sick. As a result, I was bedridden from late 1988 to early1996. I have never recovered. I’ve just had another five years of being bedridden or housebound, after taking on too much responsibility in 2010.

  7. Like Helens939, I was also diagnosed by Professor Peter Behan – then Doctor. It was late 1983/early 1984 and I had been ill since September 1982 with what turned out to be Coxsackie b4. My diagnosis was complicated by the fact that I was an undergraduate student who had just started a year abroad in France and when I returned home two months later because I felt so ill, gastric symptoms and severe headaches, it was suggested I was homesick by my feckless GP – as I’d had many routine tests which came back negative, but of course I just got worse and worse and a locum eventually realised I probably had Coxsackie, which was confirmed by blood tests. Referral to Dr Behan followed and after many blood tests and EMG and muscle biopsy ME was diagnosed. My mother did a lot of phoning around, before Behan referral, my late father was a consultant anaesthetist and one of his colleagues gave me ACTH injections which helped a little. My ME diagnosis was a huge relief because I now knew why I felt like I was dying. And while it was not easy getting a diagnosis, I am thankful that this was pre-Wessely school nonsense, and that I was referred to a true ME specialist. I would have refused to do GET – had it been recommended – as I would have been physically unable. I remain ill 33 years on.

  8. My diagnosis was complicated by the fact I have the slow onset type of ME. I started having problems about 12 or so years ago with exhaustion, but we kept putting it down to other problems as I also suffered from tension headaches/migraines and had ongoing back pain/problems. It was about 4 years ago when I reduced working to 2 days a week and found this still wasn’t helping that I seriously asked the doctor to take these symptons differently from the others (particularly has they (head/back pain) were quite minimal by now). I was also by now getting what I now know as classic ME sypmptons, post exertional malaise (all the time) and regular muscle pain and then general aching all over like flu, temperature control, regular sore glands/throats, brain fog, and sleep was simply not refreshing any more.

    I suspect I originally just had CFS, but because it was never diagnosed and therefore addressed, it became ME. After about a 14 months of investigation of everything else by 2 different doctors (another complication, I moved & had to start again), and as all the symptoms were getting worse, I was finally diagnosed with ME. I’ve now had ME for about 4 years.

    There is a big problem with the slow onset/gradual decline type of ME, in that I think it is very hard to diagnose if you have other health problems, as the doctors put your symptons down to those.

  9. It took me over 10 years to get a diagnosis. I was just put in the suffering from stress and depression group and basically treated as a time waster. This was 20 years ago.

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