‘84% of British neurologists don’t view CFS as a neurological illness’ – survey results discussed | 9 April 2011

April 16, 2011


From the Journal of Psychosomatic Research, 9 April 2011

In Press

Papers, articles, editorials

Chronic fatigue syndrome: Labels, meanings and consequences
doi:10.1016/j.jpsychores.2011.02.002
Link: https://www.ncbi.nlm.nih.gov/pubmed/21624573
Copyright © 2011 Elsevier Inc. All rights reserved.

In Press, Corrected Proof, Available online 9 April 2011

Article in Press, Corrected proof

Wojtek Wojcik a, , David Armstrong b and Richard Kanaan a
a Department of Psychological Medicine, Institute of Psychiatry, King's
College London, London, UK

b Department of General Practice, King's College London, London, UK

Received 20 December 2010; revised 31 January 2011; accepted 3 February
2011. Available online 9 April 2011.

Abstract

In this month's issue, we report a survey of members of the Association of British Neurologists, which asked if they viewed chronic fatigue syndrome (CFS) as a neurological condition-84% of respondents did not. This is at odds with current classification in ICD-10. We discuss the difficulties of classifying CFS and myalgic encephalopmeylitis (ME), including historical and sociological factors, the pitfalls of the physical/psychological dichotomy and why classification matters to doctors and patients.

20 thoughts on “‘84% of British neurologists don’t view CFS as a neurological illness’ – survey results discussed | 9 April 2011”

  1. O goody! I can hardly contain myself. All this ‘good press’ we are getting of late…

    First Ms. Parry, then Prof. Sharpe on ABC Radio tonight, and this from the neurologists…. Woopee!

  2. Then again… when was the last time I actually saw a neurologist anyway? Hmmm…. try NEVER!

    It has been immunologists pretty much all the way with me I seem to recall.

    O I did have a scan once – about 12 years ago – looking for brain tumours I think… Hmmm… Nah don’t remember seeing a neurologist then either…

    And now my Head of Immunology is retiring in June. Hey ho… back to the GP I crawl…

    1. Yes, Me too. Sent to see Infectious Diseases Doctors every time ……. (Funny how I.D. Doctors can’t spot an infectious disease though !)

      Never seen a Neurologist, despite asking repeatedly to be referred. Looks like it would have been a complete waste of time anyway – just like every other NHS led line of investigation.

      When will they finally realise that there’s lots to study in our pond, if the people who pretend to be doing so, go beyond gazing at their own reflection.

  3. Neurologists didn’t think MS or Parkinsons was neurological either, until the tests were found to prove it. Diabetes was thought to be hysterical, once.

    Funny how both Sophia Mirza and Lynn Gilderdale’s autopsies showd Dorsal Root Ganglionitis, an inflammation of the spinal chord.

    That’s two young women in the UK in recent times, both with ME and in their 30’s who had pathalogical evidence of what the description of what Myalgic Encephalomyelitis means. (Muscle brain/spine inflammation).

    Murine Leukemia Viruses cause encephalitis in mice….

  4. This survey does no more than underline the immense harm done to the clinical understanding of CFS by the Psychiatric charlatans in this country who continue to waste valuable research and treatment resources on their half-baked theories.

  5. This maybe good article to wave in the face of the Government and health officials to point out how poorly trained these people are. Firstly, in the disease ME, and secondly in how to interpret abnormal neurological tests. You don’t put objective results back in a box to ignore because you don’t feel like dealing with the disease.

    1. Hi JT.

      What’s a ‘neurological test’?

      I wonder how many sufferers out of the estimated 250,000 have ever a) seen a neurologist, or b) received said ‘tests’, or even c) have seen a medical professional who would recognise a possible neurological ’cause’ and thereby refer them to a neurologist or said neurological tests?

      Then again, if, as you I understand believe, XMRV and/or other viruses have a role to play in some of those diagnosed specifically with CFS or ME (either version) or CFIDS for that matter; wouldn’t it be more pertinent for Immunologists to be the principal consultant?

      You know I understand that the main observable diagnostic tool that a GP has for Parkinson’s is a trembling hand when that hand is laid flat on a table. That and the speech and memory – but the tremours are a sign. Amazing no? In this day and age, what a patient looks like, acts like, sounds like, speaks like – still is most relevant before any diagnosis or referral is made.

      1. So, unless ‘we’ are suffering severely and are confined to bed (in hospital or at home), what do we present visually to a GP? Anything more or less than others who might be referred to a neurologist’s domain?

        I am genuinely intrigued by this survey. I shall await publication and read with interest.

        MS and Parkinson’s, as Jace believes above, were not thought of as neurological in origin, and why should they have been?

        It’s a funny old world isn’t it? Modern Medicine! I don’t know… give me some mercury to swallow or some blood letting anyday – at least my time would come sooner 🙂

      2. Neurological tests (plural) as in a neurological examination.

        Plenty of those that show abnormalities in people with ME, from reflex hammer to MRI scans. If a cohort is studied using a weak definition, that defines nothing, then many will have normal results on those tests, but that doesn’t stop the signs being neurological.

        You are quiet right about needing a different specialist if HGRV’s are causing disease in people. However, it would be more on the lines of HIV than immunologists or neurologists. A broader range of understanding of the human body would then be required. In fact this is an entirely new field, as HGRV will obviously not be causing disease in the same way as HIV does in AIDS.

        1. Let’s say (for argument’s sake), I had proven MEncephalomyelitis? A suitable scan or whatever had showed the necessary inflammation – ok?

          Now. What ‘treatment’ would be more suited to me then as opposed to now? Now being where I am assumed to be suffering from a neurological condition of unknown origin.

          Just as a matter of interest. What treatment might I be afforded for inflammation of the brain stem, say, or spinal cord, or both?

          1. Not sure what you are asking?

            There are of course treatments for inflammation. But that isn’t the whole tale and it will depend on other signs.

  6. I was diagnosed by a professor of neurology 20 years ago. Sadly he is no longer with us. However, I think he was a forerunner in the ‘chair’ that Julia Newton now holds and, indeed, he said I had organic destruction of the central nervous system including brain tissue. He went on to say that I had no need of psychiatry.

  7. This is very depressing I agree. But at least it shows that people are very likely not overly negative when they describe the attitude of their GP’s. After all, if this is the view of the neurologists then what hope for the GP’s.

    My GP told me he was very open to the idea that ME was pychological but that he had read nothing about it. This shows I think the willingness to disbelieve the official line without any prompting. I bet many neurologists know little about it and hold thier view based on the same bias/lack of research mix. I asked my GP to spend just 30 minutes researching ME, especially the recent research. He refused, even though he has three ME patients.

  8. This has confirmed my opinion that it is probably not in my best interests to raise the possibility with my neurologist that I may have M.E. Because my initial symptoms were clearly neurological, I was suspected of having MS. Twelve years later, in the absence of a diagnosis, I now suspect that I actually have M.E. I am reluctant to raise this with my neurologist, because I assume this will mean I will be discharged from his clinic and pushed in the direction of pointless CBT and GET. What a ridiculous and depressing situation to be in…

  9. Has anyone found this article yet? I mean is it due for publication in May, or this month as stated above? The link doesn’t seem to be working?

  10. Anne Robertson

    It does not surprise me that 84% of Neurologists do not consider ME/CFS a Neurological condition when you see that for the last 25 years ME/CFS has been consistently portrayed as a psychological disorder and along with most other members of the medical profession have no training or experience of the illness. The NICE guidlines ensure that referral will not be made as a matter of course which will continue to ensure that the majority of neurologists will remain untrained and inexperienced.

  11. ‘TJ’ has asked me to post these thoughts on his/her behalf:

    Like to say…..my symptoms of ME put me into inpatients in Neuro Ward as all my signs were Neurological.

    Absolute minimal testing done but those done I was positive for was totally ignored by Neurologist. Amazing.

    I was treated very ignorantly by more than one Neuro…..totally arrogant towards me.(eventually diagnosed with CFS a somatic condition by a Neurologist!!!!). I swear they hindered me hugely.

    A newly trained Dr told me they are still told in study that this condition is somatic/psychological. Time this stopped.

    Part of NHS Consultants and Dr’s contract is for them to keep updated with medical findings and information. The Government have written that our condition is not somatic. So it’s time the Dr’s conditions of contract are upheld ie pull them up on this and make them stop being allowed to get away with their attitude.

    I wonder if they would behave in this manner if their own close family fell prey to our condition…I think not.

    Thankfully I have an amazing GP, who does not think I am mad or suffering from a mental disorder but the wrongful treatments given within the UK is all he can offer me (not his fault).

    TJ

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