ME/CFS Misdiagnosis on a grand scale?

Misdiagnosis on a grand scale?

Around 190,000 people have a diagnosis of MECFS in the UK, and there are approximately 9,300 newly diagnosed cases each year. Yet, how valid a diagnosis of ME/CFS really is depends crucially on the rigour of the initial clinical assessment, and the efforts made to exclude other treatable conditions that might be causing the collection of symptoms. If the examination is cursory – and if the clinician is sceptical, alienated or just plain disinterested – the “diagnosis” can easily become a convenient lay-by for clinically complex cases that don’t fit into any other category...

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23 Replies

  • This is more of less what one of my doctors said recently regarding Fibromyalgia. A difficult one this as I feel that I have the pain and the fatigue but have read that the fatigue usually symbolises ME/CFS. I have often wondered about this.

  • Marmaris, I'm sure fibromyalgia is misdiagnosed too. I couldn't raise my arms without excruciating pain and my endo and thyroid surgeon, who tested about 4 pressure points, suggested fibromyalgia. I wasn't referred to rheumatology for a proper work up and diagnosis but the pain resolved when I cleared a build up of T4 along with with other symptoms which had plagued me.

  • Well if you read the works of Dr Lowe you will find that he believed that for the vast majority of Fibromalgia sufferers there was a problem with their metabolism. The commonest issues were under active thyroid, adrenal insufficiency. He found optimally treating patients resolve most BUT not all Fibromalgia patients. He found that T3 was the best thyroid meds for such patients.

    I was diagnosed with ME/CFS nearly three years before I was formerly on the NHS diagnosed with Hypothyroidism. I wrote to the specialist explaining that I had since been diagnosed with hypothyroidism -he kindly wrote back and said it was a consequence of the condition not the cause and that I had most certainly had CFS/ME -he was a NHS specialist in the field. I cannot therefore get the diagnosis removed from my medical file. Personally I think I had hypothyroidism all along it just was not showing up on their wretched TSH blood tests for ages!!!!

  • Wavey, If symptoms improved when you started thyroid replacement therapy it looks like he misdiagnosed you, despite his expertise.

  • Yep I agree with you Clutter- but he insists that my thyroid has failed as a consequence of CFS/ME and was not there at point of diagnosis....hmmmmm. Unfortunately it means I have to put it down on any forms now -such as health or travel insurance or when applying for a job-annoying!!

  • This is me! All the symptoms since 1999. Diagnosis of hypothyroidism in 2011, post pregnancy. Recently flare took me to thyroid specialist who says I have had ME all along, that I could not have become pregnant with untreated hypothyroidism and that 10 years without treatment would have resulted in coma and death. But I had the chills, brain fog, fatigue, muscle aches. And a dermatologist during pregnancy urged me to be tested . The midwife lost the thyroid bloods and so there is no proof. I really don't want the added stigma of an ME diagnosis when I am not even sure it is correct

  • Janeymc,

    Of course you can become pregnant with untreated hypothyroidism, it's simply much harder for most people and it does increase the risk of miscarriage or pre-term delivery. 10 years with untreated hypothyroidism will only cause coma or death if you have no thyroid hormone. Many people are hypothyroid with some, but not enough, thyroid hormone.

    If you are still symptomatic ask your GP to do a thyroid function test or order a private thyroid panel via

  • Thank you. I went to the specialist with my results: TSH 2, T3 3.9 (range from 3.10) and T4 14.7 (range from 12). I was surprised more was not made of the "borderline" T3 and T4. On the plus side, cortisol testing has been ordered and a referral to Rheumatology. There is a definite hunch by the specialist that my thyroid is adequately managed and that therefore I must have been suffering from ME all these years. She believes stress has made my symptoms flare once again. I think I should be taking more thyroxine to lower my TSH and possibly be looking at some T3. But with the disagreement of a specialist this is really difficult. Regarding my child who was born during my untreated period- no signs of intellectual or growth impairment so I have been told not to worry as Guthrie was negative.

  • Janeymc,

    If you are taking Levothyroxine you are undermedicated. The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.4 - 1.0 with FT4 in the upper range in order that sufficient T3 is converted. Read Treatment Options in Email if you would like a copy of the Pulse article to show your GP.

  • Your story is identical to mine.....ME was their diagnsosis. I got better when I was on the right thyroid treatment for me....ndt. ME mysteriously disappeared! Hmmmm... Am not saying ME/CFS doesnt exist but I do think some people are mis diagnosed with ME/CFS when they really have low thyroid function which needs treatment.

    I carried two children to full term & they are both healthy fully fledged independent adults now. Your specialist is looking at the extreme end of thyroid failure. My blood tests looked very much like yours. I felt dreadful!!! You poor thing. I agree with Clutter you are undermedicated...unfortunately medic commonly undermedicate their patirnts out of the myth that if your bloods are in range you are optimally medicated! Wrong! Your specialist should be aiming for your TSH to be under 1 & your ft4 in the top third of the range....some people need it to be at the top of the range. Some people end up with their TSH being very low or even supressed. This does not matter so long as your ft4 & ft3,stays within the range. I was told this by a very experienced not a medic though...

  • Hi waveylines. Thank you for your response. Glad to hear I am not alone.....whereabouts in the UK are you? I am looking for a new endo who will look at my borderline bloods and help me get them optimal. Any heads up welcome. I could travel! If you have any ideas, please pm me. Thanks again

  • "These reports provide clear, formal evidence that almost half of patients referred from primary care with a diagnosis of ME/CFS actually have something else wrong with them..." one report was 2010...

    the list of actual diagnoses includes nutritional deficiencies and endocrine disorders & depression...

    My GP was quick to label me with CFS right after my Partial Thyroid op - just goes to show...

    I was told that buscipone was a diagnostic test for ME - but I haven't researched it, ME remains a “diagnosis of exclusion” (ME Research UK).

    Here's another anecdote... (popped up top of google search - I hope those misdiagnosed see it!) J :D

  • Spare, highlights the importance of specialist input, not just a GP opinion.

    This is interesting re depression and low vitD

  • In the anecdote above, she had been to several NHS specialists - usual blood tests inc. TSH but Vitamin D not considered, then referred to the CFS clinic to 'learn to live with it'.

  • ...and then of course this....

  • Marz, vitD and B12 decline in the elderly. Wouldn't it be lovely if they were universally tested before a dementia diagnosis was made and tested in patients already diagnosed?

  • Absolutely. Not forgetting the thyroid too which also winds down - if they still have one !

  • Well even a specialist might miss it too as you see from my posts above -Mine was a specialist NHS Consultant in CFS/ME -well thought off and highly respected. I also was sent to see the CFS/ME clinic to help me manage my symptoms and was taught pacing etc..... unfortunately the pacing didn't really work for me as i had to keep lowering my activity not gradually raising it as it was supposed to do......and I wonder why that could be! Ha ha!!! The physio and occupational therapist were mystified by this -but guess they wouldn't be if they'ed been told abut my later diagnosis -all makes sense! Anyway that was 10years ago -hopefully they have come on a pace since then -he he excuse the pun!!

  • I was referred to a very well respected eminent surgeon at a highly regarded orthopaedic hospital (I know he & team are amazing with acute conditions e.g. from auto accidents, but perhaps not chronic ones?) perhaps he thought thorough tests were done by GP before referral? not

    I was diagnosed with bilateral carpal & cubital tunnel which needed operations asap - however he did send me for nerve conduction tests as neck impingement suspected - although I wasn't tested above elbows they still wanted to operate!

    2 lots of physio, nerve conduction tests, 2 MRIs, can't remember, osteo etc... then I found out it was low Vitamin D :D

  • CFS - Chronic Fatigue Syndrome. You cannot diagnose someone with a syndrome. Not only is it a misdiagnosis, it's a non-diagnosis. There has always got to be 'something' else, they're just not looking for it. It's just too easy to write someone off with a 'disease' that has little in the way of means of diagnosing, no treatment and no cure. A lazy doctor's dream!

  • Let's be frank - ME/CFS/Fibro was a gift from above for the lazy doctors who couldn't be bothered to properly investigate chronic conditions that weren't easy to diagnose, never mind treat.

    I can imagine them going home feeling so good that they had 'sorted out' all their patients for that day, with a diagnosis. And from the figures, it's looks like they are still at it.

    Thank goodness for Tim Berners-Lee, who has probably saved more of us than all the GP's in the country.

  • Excellent post Hypopotamus!

  • I am not saying that CFS/ME does not exist - am just saying that i was misdiagnosed. I joined the local support group and never felt that I fitted the symptoms they were describing and experiencing. I suspect the incident rate may well be much smaller if they got the testing sorted more effectively for hormone conditions!! Am sure my specialist checked my thyroid -have no doubt of that but of course my TSH and thyroid hormones would have still be in the ranges of the 'norm.' I feel really sorry therefore for people who genuinely have the condition as it must make research very difficult as people like me get lumped in with them which will completely muddy the waters.

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