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BMJ Rapid Response: Is Chronic Fatigue Syndrome a meme? 18 June 2014

Discussion in 'General ME/CFS News' started by Firestormm, Jun 18, 2014.

  1. Roy S

    Roy S former DC ME/CFS lobbyist

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    You are too quick, Bob. I deleted my post after realizing I misspelled Blackmore and was going to repost it. :)
    Bob likes this.
  2. Leopardtail

    Leopardtail Senior Member

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    I think I would be more inclined to compare it to "The Daily Sport" or "Viz" (smutty and teenage newspapers for those not in England.
    Min likes this.
  3. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    For clarity - Ms Blackmore was not referred to in my comment, as an "expert."

    What I wrote was:

    http://www.bmj.com/content/329/7472/928/rapid-responses

    Collings and Newton (1) resurrect a ten year old editorial (2) to present an essay on the potential for viewing CFS as a 'meme-mediated' syndrome.

    In the Preface to her 1999 book 'The Meme Machine' (3) Susan Blackmore writes that most of the ideas in her book were conceived whilst bedbound for many months with a chronic, debilitating, post-viral illness.

    Forced to give up work, unable to walk, unable to talk for more than a few minutes, unable to use a computer. But she could read and she could think, and as time went on, make notes. It would be two years or so before Ms Blackmore was well enough to consider working again and to develop her ideas into the book.

    Ms Blackmore seems uniquely positioned to contribute to this discussion.

    1 Collings AD, Newton D. Re: What causes chronic fatigue syndrome? BMJ 2014 (18 June).

    2 White PD. What causes chronic fatigue syndrome? BMJ 2004; 329: 928-929 (21 October).

    3 Blackmore, Susan (1999), The Meme Machine, Oxford University Press, ISBN 0-19-850365-2.

    ------------

    Ms Blackmore has published on memes.
    Ms Blackmore has experienced a chronic, debilitating, post-viral illness.

    -------------

    Note that the BMJ site is currently loading with a new Beta website platform for which the "like" button counters have been reset to 0.
    Valentijn likes this.
  4. chipmunk1

    chipmunk1 Senior Member

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    as it has been said before most people who got CFS/ME didn't know enough about the illness to copy the behaviour.

    This can be easily verified. :whistle:
    mango, SOC, Mij and 2 others like this.
  5. Antares in NYC

    Antares in NYC Senior Member

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    Exactly!
    If my personal experience mirrors that of many other patients, it took almost 15 years for me to get a diagnosis. Fifteen long years. I had no idea of the specifics of ME/CFS until then, and I knew no other patients or anyone else affected by this disease. Nevertheless, that didn't stop a myriad of doctors to prescribe me every antidepressant under the sun when they didn't understand what was happening to me.

    Collings and Newton also make an erroneous assumption. They claimed that "being Asian" is a deterrent to getting this so-called "CFS meme fever". May I point the authors to Japan? It is well recorded that Japan is one of the countries with the highest percentages of ME/CFS patients in the world (with at least 300,000 confirmed cases). Last time I checked, Japan was an Asian country, but what do I know. I do not get to write "scholarly papers" for the BMJ.

    Some "researchers"...
    Last edited: Jul 3, 2014
  6. Sean

    Sean Senior Member

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    I had never heard of ME or CFS before I got sick, and didn't until I was diagnosed 4 years later.

    I couldn't possibly have heard of CFS because the term was only introduced in March 1988 with the Holmes definition, and I was diagnosed in late 1988.

    Furthermore, this was in the pre-internet era, when there was very restricted access to medical info for the general public.

    Not too much chance there for a memetic infection to take hold.
  7. Valentijn

    Valentijn Activity Level: 3

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    I couldn't figure out what I had at first. I just got very sick every time I came home from class after walking very fast for 15-20 minutes + 2 bus rides + 1 train ride.

    Eventually I stumbled across "exercise intolerance" - I hadn't even known that existed, but it seemed to fit with what was happening to me. Sometime after that I came across the CDC's definition of CFS, and ruled that out (along with a lot of other things) due to the symptoms not really fitting well, and the associated info making it clear it was intended to be a psychological disorder.

    It wasn't until I came across a definition of ME, I think from the Hummingbird group, that I realized it was describing my symptoms spot-on. When I realized that ME was also sometimes called CFS, after I had ruled out CFS, I was pretty shocked :jaw-drop:

    The internist independently (and probably much more quickly) came to the same conclusion when the followup appointment came around after the lab results were in.
    Bob, Antares in NYC and rosie26 like this.
  8. chipmunk1

    chipmunk1 Senior Member

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    [satire]
    Time for the next psych research study:

    Internet discussion forums as a cause of ME: Does availability of broadband access aggravate somatic symptoms?

    [satire]
  9. alex3619

    alex3619 Senior Member

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    Similar to @Valentijn , some time after I got sick I heard about ME or something (I no longer recall), but I didn't have the symptoms the journalist was referring to, so I ignored it. Later I head about CFS, but I didn't have chronic fatigue but something else, so I ignored it. Then blow me down and colour me turquoise, I got diagnosed with CFS under Holmes in 1989. Yet it was two years or more before I started looking into CFS. I naively presumed what my doctors were telling me was accurate. In 1993 I started to wake up to the truth, and first did some CFS advocacy.

    Today I much prefer to use ME over CFS or ME/CFS or CFS/ME. Let me give a reason why: do doctors refer to a patient having possible heart-disease/cancer/AIDS? Why should we lump things together? The criteria select an only partially overlapping cohort, and technically if you have ME you cannot have CFS, because CFS is a diagnosis of exclusion.
    Bob, rosie26 and Valentijn like this.
  10. alex3619

    alex3619 Senior Member

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    I think I read that study, though I am not sure. Or maybe they keep talking about it as though there was a study, whereas its only fictitious.
  11. Nielk

    Nielk

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    Eleven years ago, I was at the height of my career. I was an active member of my community and took care of my family and household.

    One day, I decide that I had enough of this rewarding life. I wanted a change. I started searching on the internet for some strange obscure illnesses. I considered various different options but, finally settled on the much desired chronic fatigue syndrome.

    It seemed like a perfect fit for me. I loved being ridiculed, and I was particularly seeking to become very isolated from all people that I loved in my life.

    I made sure to memorize all the critical symptoms in order to hopefully qualify for a diagnosis. I searched for a cfs specialist in my area and came to him with all my "new symptoms". I felt really excited when I finally received an official diagnosis.

    Since then, my life has improved so much that I have kept insisting all this time that this is what I suffer from in order to remain in this much desired state of having this disease. I love my life now as it is. I love the way doctors and people in general look at me.

    The best part is the fact that my family have lost a functioning mother/wife. I can't describe how rewarding this feels and this is why I am so satisfied in this state and will keep on insisting that I have this disease no matter what.
    horcrux, vli, PhoenixDown and 19 others like this.
  12. Cheshire

    Cheshire Senior Member

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    Yes, the only "secondary gain" that could explain we resort to such a meme is masochism.
  13. Firestormm

    Firestormm Guest

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    If I understand this notion of 'memes' (and I don't pretend to understand it very well), then it would also apply to doctors. The way I see it - and it's all philosophical so has no relevance at all in the medical domain in my view - then doctors would 'latch on' to CFS and apply the label to patients before properly trying to understand and diagnose what was wrong with them. So, whilst many of the critiques above are I think valid - we can also perhaps lend this same theory to doctors and one might then use it to 'explain' why it is that patients are arbitrarily assigned this umbrella... It could go even further and be used to help try and explain why things that might previously have been put down to other factors become assigned to ill-health and CFS. Things that have no right doing so... How often do we complain that 'chronic fatigue' has become wrongly a part of 'ME'? Or that in media reports only 'fatigue' is shown as the problem? If anything I would say that 'fatigue' has become a meme...

    Sorry. Just rambling and delaying taking a shower...
    horcrux, catly, rosie26 and 5 others like this.
  14. A.B.

    A.B. Senior Member

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    What's the secondary gain for doctors and health care providers when labelling CFS as psychosomatic?

    If I look back, people who proposed psychological explanations for my problems were really just looking for excuses to avoid the issue.
    Antares in NYC and Valentijn like this.
  15. chipmunk1

    chipmunk1 Senior Member

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    if patients don't want to get better why do they keep visiting healthcare providers?

    also why are the symptoms relatively stable? Conversion could take any form any time. Why do most patients keep a constant symptom pattern over time?

    if the psyche can emulate so many diseases why don't we have cases that switch between ME, Psychogenic Blindness and Psychogenic Epilepsy? On and off.

    Bedridden to energetic epileptic becoming blind and deaf later only to become bedridden again.
    Last edited: Jul 4, 2014
  16. Mij

    Mij Senior Member

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    No kidding. It's a trend and we're all anxious to go out and buy designer sheets and pajamas.
    Sidereal, heapsreal and chipmunk1 like this.
  17. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Interesting what you say about Japan as i think they were one of the first authorities to find nk function abnormalities and named the illness nk disease??

    I also wonder if there is alot of translation issues with other non english speaking countries and also use other names then cfs or even ME. Possibly even other treatments(not necessarily cures?) in these other countries.

    It also seems that research outside of say usa, uk and australia is just ignored or not relevant so we have to invent the wheel again.

    I have spoken about this before but eastern block countries have been researching ways to treat viral infections for decades and having some success with different interferon inducers. It seems that the western countries aim their viral research into vaccines and preventing viral infections rather than treating viruses once they occur??
    Valentijn and Antares in NYC like this.
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Also why would one pick cfs/me if they were going to fake something. oh lets pick this illness that no one believes so we can rip off the system. Doesnt make sense to me??

    Psychobabbler diagnosis is used when they cant work something out, hopefully antidepressants make you not worry about feeling like shit and stop pestering doctors who dont know how to treat you.
  19. Tom Kindlon

    Tom Kindlon Senior Member

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    I submitted this in reply to the Collings & Newton BMJ e-letter http://www.bmj.com/node/759165 which said "CFS, then, might be usefully viewed as a meme, a dysfunctional culturally-transmitted idea-infection."

    Normally the BMJ publish nearly all of my e-letters but didn't on this occasion for some reason. I've heard from two other people whose e-letters also weren't posted.

    This isn't my tightest letter - I just wrote it quickly but it ended up taking some time so thought I'd share it.

    -------

    Last edited: Jul 4, 2014
  20. chipmunk1

    chipmunk1 Senior Member

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    This describes the concept of somatisation disorders very well.
    Antares in NYC and Keela Too like this.

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