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The PACE of chronic fatigue

Discussion in 'General ME/CFS News' started by ixchelkali, Apr 15, 2011.

  1. ixchelkali

    ixchelkali Senior Member

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    The Irish Medical Times

    http://www.imt.ie/opinion/2011/04/the-pace-of-chronic-fatigue.html

    Dear Editor,

    Im not sure how big the circulation of Irish Medical Times is outside of Ireland, but I reckon it must be a little unusual for you to receive three letters in a week, all from abroad, about one news item reporting a Lancet study on ME [White et al. Lancet 18 Feb 2011].

    I dont think any of your correspondents in your April 1 issue were very pleased with you, or the Lancet for that matter. I wonder if the number and content of these letters says something about the disease ME itself? All three letters have the tone of the wounded victim, a sort of passive anger.

    The result of the research was not suited to the needs of these individuals; it did not correspond with their illness as they saw it. The title chronic fatigue in particular does not suit the pathology; myalgic encephalomyelitis (ME) does.

    Myalgic encephalomyelitis does have a certain ring to it. It sounds more like a real disease, although, if you think about the words, they dont make sense. An equivalent in another organ system might be something like: Hepatic gastrointestohepatitis. In any case graded exercise, according to one of your correspondents, is dangerous in this condition and has been shown to be so by the major ME charities.

    I would like to suggest that ME sufferers have adopted a sick role to try and cope with a society which is rather nihilistic. ME could be interpreted as a physical and cultural response to a society that has lost meaning, personal communication and human relationships a sort of physical infection from postmodernism.

    Unfortunately, adopting this physical illness model requires some rationale, an evidence base, and I would suggest that the unusually strong reaction you have received points to a need to defend that physical illness position, and to reject evidence which might threaten that passive, victim role. A look on the web shows that there has been a huge response from individuals and ME groups to the original Lancet article.

    There is one thing that is not affected in ME at any rate, and that is the ability to use a computer. One of the characteristics of the disease, it seems, is a desire to write about it. I wonder if internet usage itself should be investigated as a possible link? In fact, I would like to suggest a new condition: Bloggers disease.

    Dr John Monaghan,
    Portiuncula Hospital,
    Ballinasloe,
    Co Galway.
  2. Esther12

    Esther12 Senior Member

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    "ME could be interpreted as a physical and cultural response to a society that has lost meaning, personal communication and human relationships a sort of physical infection from postmodernism."

    That does have a certain ring to it. It sounds vaguely sophisticated and philosophical. But if you think about it, it doesn't really say anything... it's just the empty ramblings of a sad little man.

    Dr Monaghan decided it would be sensible to profile patients based upon his browsing of the internet. He found that, or those CFS patients posting on the internet, all were able to use a PC. All were also writing about their illness, which is how he was able to identify them. This indicates to Dr Monaghan that writing on the internet about one's illness may be a characteristic of the disease. Can anyone here point out where Dr Monaghan may have gone wrong?

    Imagine someone profiling gay people in this way. Or any other marginalised group. Or imagine if a CFS patient had written to the Irish Medical Times with such a smug collection of ad hominem. Dr Monaghan's letter talks of the need for some rationale or evidence base to support a physical illness model, yet he does not seem to recognise that his letter is just a reflection of his own prejudices and emotional reasoning.

    I think Dr Monaghan needs to recognise that it is not modern life that is responsible for his sense of a loss of meaning, personal communication, or human relationships... it's because no-one wants to spend time with someone too stupid to recognise his own ignorance.
  3. ixchelkali

    ixchelkali Senior Member

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    :Sign Good one::D:D
  4. SaveMe

    SaveMe *****

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    lets write this mo fo a bad comment
  5. Bob

    Bob

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    I think the letter sums up exactly how most of the medical profession really view CFS/ME and patients with CFS/ME (But most of them aren't quite that overtly honest about it!)... That sort of attitude would explain the prejudiced action that the scientific community take against CFS/ME researchers that Dr Friedman talked about at the State of the Knowledge conference.

    Esther, your post is inspired! And I think you sum it all up perfectly with 3 short words: "sad little man"! ('little' referring to his mental outlook, rather than his physical stature.)
  6. Esther12

    Esther12 Senior Member

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    Thanks.

    I did have a (imo) better reply... but my browser deleted it!! I've had a busy week, and it was entertaining dragging myself to re-type a post in reply to a letter saying how CFS seems to have no impact upon patient's ability to use the internet. It would be great if it were true. I'm off to bed now!
  7. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    And wankers like him thought Pasteur was a lunatic for suggesting "unseen bugs" caused diseases, or that washing your hands after autopsies would prevent so many women dying after childbirth by that doctor...

    Moronic Wankeritis is a psycho-social disease spreading around the medical world because so many of them are arrogant stupid bastards divorced from reality they couldn't treat a patient if they don't have an expesnive pill for it AND an expense account with the pharma corp who sells it...! :p
  8. Sean

    Sean Senior Member

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    Need to be careful here. It is possible that most medical professionals do not see us this harsh way, but are not in a position to argue against the currently dominant and strongly enforced psycho-social view. No point in an individual doctor speaking out when they are not recognised experts and will suffer serious professional consequences, thus leaving them unable to help anybody, let alone us.

    Sad, but the brutal political reality, for now.

    Not to mention his moral stature.
  9. Tulip

    Tulip Guest

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    "Doctors" like this only continue to make fools of themselves when they deny the over 5,000 scientific papers and journals documenting biomedical abnormalities in M.E. patients. Really, no one can help you when you are that stupid.
  10. Snow Leopard

    Snow Leopard Senior Member

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    To be honest, this is one the reasons why I didn't write a letter myself..
  11. biophile

    biophile Places I'd rather be.

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    Obviously an ignorant comment which doesn't take into account how difficult it is to write when ill or sustain such writing, and what is at stake if we don't do anything and remain over the barrel while people play with our lives.
  12. ixchelkali

    ixchelkali Senior Member

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    At the bottom of the letter there is a place to post a comment, under the heading "Speak Your Mind." But apparently the Irish Medical Times has no intention of actually allowing anyone to see what you write when you "speak your mind," because I posted a comment yesterday morning and it has yet to appear. So although it's "preaching to the choir," I guess I'll just post it here:


    Whereas apparently adopting a psychological illness model requires no evidence or rationale. What does the need to reject published medical evidence point to?

    Just last week the American National Institutes of Health held a two-day "state of the knowledge" symposium on ME/CFS, presenting research on infectious diseases, systems biology, immunology, neurology, exercise physiology/energy metabolism, diagnosis and biomarkers. PubMed lists hundreds of studies demonstrating physiological abnormalities in ME/CFS patients. And yet somehow you feel that your pocket psychoanalysis of people you have never met holds more validity than the body of peer-reviewed data. In what way is that evidenced based?

    "... a sort of physical infection from postmodernism"??? Uh, yeah, that makes a lot more sense than patients being sick from any of the lingering viral infections they've been shown to have, or from the immune dysfunction (!!!).

    Isn't it just barely possible that patients simply feel the need to object to being characterized by unsubstantiated pseudo-psychological codswallop?
  13. Dolphin

    Dolphin Senior Member

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    Thanks for sending in a message. To be honest, I think it is too early to tell for definite whether they will post your comment. They probably don't have a full-time IT person/whoever approves comments may not have seen it or they may have felt they needed to show it to somebody else first. Also, I've just noticed you're in California which is around eight hours behind Ireland so you may have posted it after office hours.

    I hope they do put up your comment.
  14. Dolphin

    Dolphin Senior Member

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  15. ixchelkali

    ixchelkali Senior Member

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    Thanks, Dolphin. I enjoyed reading the responses. I doubt they will affect the opinion of someone as arrogant and lacking in compassion as Dr John Monaghan (he doesn't seem the type to allow facts to get in the way of his opinions), but I'm glad his slander of ME/CFS patients won't stand unanswered. Actually, perhaps we should thank him for illustrating so well the attitudes that patients have to contend with in the medical community.

    I am appalled to learn that he is a member of the Ethics Working Group and of the Fitness to Practice Committee of the Irish Medical Council. Is making unfounded, unsubstantiated blanket mental health "diagnoses" of patients he has never met considered ethical in the Irish medical community? Is making public jokes at the expense of sick people their idea of "standards in practice"?
  16. Dolphin

    Dolphin Senior Member

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  17. urbantravels

    urbantravels disjecta membra

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    Perhaps a note to those organizations, including a pointer to the text of his letter, might not go amiss. Perhaps it might come better from one of our Irish members?
  18. Sean

    Sean Senior Member

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    Seems to me he has left himself wide open to formal complaints about his own ethics and fitness to practice.

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