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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Research: Do you think it's a disease? Survey of Medical Students Australia

Discussion in 'Latest ME/CFS Research' started by Firestormm, Apr 3, 2012.

  1. Firestormm

    Firestormm Guest

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    Quite interesting this one (promise!) :angel:

    Full paper: http://www.biomedcentral.com/content/pdf/1472-6920-12-19.pdf

    Do you think its a disease? A survey of medical students


    Abstract

    Background


    The management of medical conditions is influenced by whether clinicians regard them as disease or not a disease. The aim of the survey was to determine how medical students classify a range of conditions they might encounter in their professional lives and whether a different name for a condition would influence their decision in the categorisation of the condition as a disease or not a disease.

    Methods

    We surveyed 3 concurrent years of medical students to classify 36 candidate conditions into disease and non-disease. The conditions were given a medical label and a (lay) label and positioned where possible in alternate columns of the survey.

    Results

    The response rate was 96% (183 of 190 students attending a lecture): 80% of students concurred on 16 conditions as disease (eg diabetes, tuberculosis), and 4 as non-disease (eg baldness, menopause, fractured skull and heat stroke).

    The remaining 16 conditions (with 21-79% agreement) were more contentious (especially obesity, infertility, hay fever, alcoholism, and restless leg syndrome).

    Three pairs of conditions had both a more, and a less, medical label: the more medical labels (myalgic encephalomyelitis, hypertension, and erectile dysfunction) were more frequently classified as disease than the less medical (chronic fatigue syndrome, high blood pressure, and impotence), respectively, significantly different for the first two pairs.

    Conclusions

    Some conditions excluded from the classification of disease were unexpected (eg fractured skull and heat stroke). Students were mostly concordant on what conditions should be classified as disease. They were more likely to classify synonyms as disease if the label was medical. The findings indicate there is still a problem 30 years on in the concept of what is a disease. Our findings suggest that we should be addressing such concepts to medical students.

    Note: Myalgic Encephalomyelitis was considered by 96% of respondents as a 'disease' compared to 75% for Chronic Fatigue Syndrome. Whether or not a GP or trainee considers a condition a 'disease' might determine how they respond to patients and to their needs...
    barbc56, Mark, SOC and 4 others like this.
  2. Enid

    Enid Senior Member

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    That's a relief to see Firestormm (at least for those in Aus) - I guess CFS is still a little too vague for them and carries historical baggage. Can't imagine the same here unless major changes - my experience of newly qualified Docs in A & E regarding ME was zero and they had a new idea if their limited tests failed them - "it's all in your mind".
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Depends on how they are being told to group them, eg a syndrome is a group of symptoms, where something that has a black and white diagnosis with blood tests etc can be more precisely classed as a disease. ME and cfs until a specific test is invented will be more likely to be classified as a syndrome. A syndrome doesnt mean it doesnt exist though they just havent pin pointed the cause i guess. Personally i wouldnt call hypertension a disease but then its also not a syndrome as it doesnt really have symptoms unless extremely high and there are multiple causes of hypertension. Its all very grey.

    Enid, majority of docs in australia class cfs as a form of depression and the term ME is not used alot, i dont think many docs would know what ME even was. I think the difference between the health system in australia and the UK is that i think UK docs are more stuck to strict guidelines(probably because of the Wessely mob) and over the years there has been a few groups of researchers into cfs/me, so maybe some docs have read this research. I dont think there is much taught on cfs/me in med school.

    interesting,
    cheers!!!
  4. Enid

    Enid Senior Member

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    Yes there is a tight rein here heaps. Two things come to mind - my brother (in the US Prof Neurolgy) mentioning the hours he must spend keeping up with all the latest research. And a lecture to med students by an eminent Physician - "you will have to forget much of what I'm telling you when you leave" Medicine is always on the move.

    I think the situation with GP's here is very similar to yours too and for reasons you give.
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Might be the reason why docs 'into' cfs/me have had the condition themselves or family members or stuck in the middle of an outbreak like dr peterson. Maybe we need to infect more docs, lol.
    Snow Leopard likes this.
  6. Enid

    Enid Senior Member

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    Well there's a thought (not missed before either).:cool:
  7. taniaaust1

    taniaaust1 Senior Member

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    That was a very sad result..that even now with all the studies out there that a quarter of doctors dont list cfs as a disease. I was hoping doctors were coming out of medical school more intellegent on this illness.

    I agree with heapsreal .. doctors here in Australia.. most will have never heard the term ME or myalgic encephalitis so yes would list it as a disease without knowing that its often used as another term for CFS... hence why there would of been a huge difference between the CFS and the ME... I very much doubt they would get that same big difference if they did the same study in England seeing CFS is called ME there.

    ME is treated like an illness which just dont exist at all in Australia so a doctor or med student who hasnt heard that term before would see it as a disease... (even my good CFS specialist said that ME is exactly the same as CFS.. no one seems to just believe in real ME).
  8. Valentijn

    Valentijn Activity Level: 3

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    My summary of this study: "21% of med students make random guesses when identifying diseases, and 25% of med students are verifiable idiots."

    I wonder if there was any improvement for the students that were closer to graduating.
    WillowJ and Snow Leopard like this.
  9. SOC

    SOC Moderator and Senior Member

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    As a former college instructor, I thought more or less the same thing -- 21% of the students were simply guessing based on name, not medical knowledge.

    I was actually impressed that, with all the bad PR we've had over the past 20+ years, 75% of medical students understood that "CFS" is a disease, not a life choice. ;) I'm not sure we'd get results that high if we polled the current GPs in our local clinics.

    To be a very useful observation, they should have reported the numbers for 1st, 2nd, and 3rd year students separately. Does more medical school improve their understanding of ME/CFS, or degrade it? Nevertheless, this backs up our insistence that the stupid CFS name significantly negatively impacts our doctors' perception of our condition.
    WillowJ likes this.
  10. taniaaust1

    taniaaust1 Senior Member

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    I wondered that too... maybe they were even worst by then.
  11. Enid

    Enid Senior Member

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    Any intelligent Docs around - at least one of four (juniors in A &E having imposed a psycho on me) came eventually to admit - you know when you are ill. Now if one is falling about and passing out wouldn't anyone in their right mind think obvious.
  12. Esther12

    Esther12 Senior Member

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    'Many medical decisions based on a doctor's vague hunch'... anyone surprised?
  13. Ember

    Ember Senior Member

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    I'm glad to see that ProHealth isn't pulling their punches on this:

    More evidence the name chronic fatigue syndrome still generating physician disrespect

    Article:
    Do you think it's a disease? A survey of medical students

    - Source: BMC Medical Education, Apr 3, 2012

    http://www.prohealth.com/library/showarticle.cfm?libid=16909
  14. SickOfSickness

    SickOfSickness Senior Member

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    I'm sure the general public would say "myalgic encephalomyelitis" is a disease. It sounds serious. I'd be afraid to tell someone I have that. I think they would be scared of catching something serious.

    Just the word "syndrome" in anything makes me think "not disease" :(
    Firestormm likes this.
  15. WillowJ

    WillowJ Senior Member

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    syndrome isn't necessarily code for "not real". Look at this list of syndromes: http://medical-dictionary.thefreedictionary.com/syndrome (Some have been upgraded to diseases - addisonian syndrome has become Addison's disease, for example).

    all the same, to pick one vague symptom and rename a group of patients for that, is not useful; then most fail to perform differential diagnosis or epidemiology, and there is no structure which will provide a meaningful amount of funding for useful research, and the resulting bad information is constantly repeated by the health authorities, everyone naturally gets the wrong idea...

    it takes a reasonably committed person to dig into the available information and find out something close to the truth
  16. ramakentesh

    ramakentesh Senior Member

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    My experience in Australia is quite different. Im yet to meet a GP that does not believe in CFS / ME as a phsyiological disease state - most have called it Post-viral-fatigue syndrome and we have had some high profile sufferers in the past here (football players, swimmers, etc).
    POTS and OI is also often in the media through the Yellow Wiggle.
  17. ramakentesh

    ramakentesh Senior Member

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    AIDS is a syndrome
    Firestormm likes this.
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I have come across a few docs here that believe in cfs, post viral fatigue etc but have said they dont know how to treat it other then sleep meds for sleep dysfunction and tricyclic antidepressants for sleep, mood and pain, but i think these guys are rare. After being on these forums for awhile i really only know 2 docs who try other treatments like av's, antibiotics etc (in Brisbane and Melbourne) maybe a few more but not many. One doc said he doesnt like to treat cfs patients as they are too hard to work with because of their condition ie too complicated and overlapping issues, its easier to keep doing 10min appointments and making money then spending time with cfs patients.

    cheers!!!
    WillowJ likes this.
  19. Valentijn

    Valentijn Activity Level: 3

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    I think the "fatigue" part is the problem more than "syndrome". AIDS has "auto-immune" in it, which points to a disease mechanism, and sounds a lot more legitimate than "fatigue syndrome".
  20. Googsta

    Googsta Doing Well

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    Similar experiences HR.
    I had an advantage as I had known my GP since I was a baby, it was clear something was very wrong. He was happy to work with me on my treatment but there were still days he was frustrated.

    Unfortunately I had to leave him behind when I was first married. I've had to 'break-in' many ignorant GP's since then. I thought I was out of luck after I first saw my current GP in my wheelchair & came away in tears. Hubby persuaded me to give him one last try, to our suprise he'd rang the ME/CFS society & had some info sent out!

    I've seen numerous Psychiatrists & Psychologists and they have ALL beleived it to be a disease. My last Psychiatrist told me about the Discovery clinic, I hadn't heard of it!

    I refuse to call my condition CFS to anyone now. I sent my Neuro a ICC Brochure & several research papers that were indisputable. I saw him yesterday, I got the feeling he thought I was a wee bit cheeky but he is now calling it M.E! Mind you, he was pretty lost discussing OI & NMH too.

    I refuse to say CFS straight out, they get "M.E, it is a serious disease. It was wrongly termed ChronicFatigueSyndrome for many years but it alot more than chronic tiredness. I have brain lesions, I've been raced to hospital having seizures, I cannot even stand-up without collapsing etc"

    I think it is more uncomfortable for me than for them. So far they are bewildered & actually ask me for more information, I try to always have something on hand or a good website link. I handed out another ICC today, I think it's worth every bit of two bucks to get them into the hands of health care workers.

    I put up with CFS related abuse for years, no more :innocent1:

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