The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

"Chronic Fatigue Syndrome: What’s in a Name" - Neurology Now

Discussion in 'General ME/CFS News' started by Kyla, Oct 3, 2015.

  1. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    http://journals.lww.com/neurologynow/blog/webextras/pages/post.aspx?PostID=17

    Does anyone have access to "Neurology Now" to see the rest of the content mentioned (on the IOM report ) ?


     
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  2. jimells

    jimells Senior Member

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    How condescending. The author is ignorant of the history or disingenuous, probably both. It's not exactly a secret that "ME" was the name until CDC decided to define the illness out of existence, on orders from disability insurers.

    The excerpt suggests that the essay is just another distraction from the fact that there is *still* inadequate funding for research and patient care and that government agencies intend to maintain this policy for as long as possible. If the author follows the usual methods of modern "journalism", these issues might be mentioned - in the last paragraph.
     
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  3. mfairma

    mfairma Senior Member

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    And now for more insight on the issues, we turn to someone who has recently read wikipedia . . .
     
  4. alex3619

    alex3619 Senior Member

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    "Many people in the CFS community prefer ME because it sounds more “medical” and doesn’t carry the stigma that tends to be associated with CFS."

    I think this qualifies as a myth. So many have said it so many times that people just presume it has some validity. A lot like an urban legend.
     
  5. alkt

    alkt Senior Member

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    well if we are allowed to have a preference for the name of a disease that steals our lives away. would return it to atypical polio which it was known as prior to ramsey naming it as m.e . at least that was a disease taken very seriously by doctors and governments.
     
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  6. alex3619

    alex3619 Senior Member

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    The reason atypical polio was good was there was a close association with polio outbreaks and what came to be called atypical polio.

    Now we do not have polio outbreaks any more. So selling this name would be very hard to do, it would be treated even more skeptically than CFS.

    However we know that polio is from the enterovirus family. We know that, in animals at least, other enteroviruses can cause a polio-like problem. So there is a case that while polio is nearly fully eradicated the other enteroviruses do not even have a vaccine. They are also strongly implicated in many ME outbreaks, and there are occasional epidemics.

    However, since polio was massively vaccinated against, I wonder if this made a difference to the number of ME outbreaks. They simply disappeared ... until you realize that many outbreaks that sound similar now go under other names. Post Q fever, post SARS, post Ebola, etc. Did they stop, or were they relabeled? If they were relabeled, what does this mean about the nature of ME?
     
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  7. Snow Leopard

    Snow Leopard Hibernating

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    "And CFS is still associated among some with the term “yuppie flu,”"

    Maybe because journalists like you keep repeating it. FFS...
     
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  8. Vic

    Vic

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    Eh, from what I've seen it's true. CFS really isn't that bad of a name description-wise. To be fair, ME really isn't that bad either. They both have a large amount of truth to them. They're both incomplete, but the "encephalomyelitis" just doesn't fit everyone, and it's not because they're "different diseases."

    HAH! Yeah.
     
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  9. halcyon

    halcyon Senior Member

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    Not only that but the clinical presentation is very similar with a biphasic onset, i.e. initial gastrointestinal/respiratory illness that appears to improve though is instead followed by onset of the disease.
     
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  10. Forbin

    Forbin Senior Member

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    By a strange coincidence, many physicians prefer to be called "doctor" because it sounds more 'medical" and doesn't carry the stigma that tends to be associated with "sawbones." *


    [* 19th century slang for a surgeon during a time when amputation was the most common form of surgery. Later, slang for any doctor.]
     
    Last edited: Oct 3, 2015
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  11. Sean

    Sean Senior Member

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    If it quacks, is it still a doctor?
     
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  12. halcyon

    halcyon Senior Member

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    If someone doesn't fit encephalomyelitis then that's probably not what they have then, it doesn't mean the name is wrong.
     
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  13. jimells

    jimells Senior Member

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    The name issue is such a powerful agent for distraction that even in this thread it we are once again lost in the weeds. Has anyone read the entire article? Does it discuss anything in the IOM report besides the name?

    Personally, I prefer to focus on the policies and the institutions that created and support them. This publication is clearly one of those institutions.
     
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  14. Dr Speedy

    Dr Speedy

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    Free Subscriptions
    Neurology Now is available free of charge to individuals with a neurological disorder, their caregivers, and family members/friends residing in the U.S only. Note: This publication is only available for distribution within the US due to FDA regulations. http://journals.lww.com/neurologynow/Pages/subscriptionservices.aspx
     
    Last edited: Oct 4, 2015
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  15. snowathlete

    snowathlete

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    This is only part of the text so I'll withhold judgement but what I've seen here, it could be better, it could be worse. It seems a bit amateur to me, statements put in without checking validity etc. I agree with him that ME is inaccurate in most cases. But saying bizarre things like "but Dr. Sabin is on the fence. He prefers the term CFS, if people were to take it more seriously." Yet it is apparent that people are not taking it more seriously, if they were then it wouldn't be the issue that it is and he wouldn't be talking about it. It just doesn't seem logically thought out really.
     
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  16. halcyon

    halcyon Senior Member

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    Based on what evidence?
     
  17. mfairma

    mfairma Senior Member

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    Whether the name is accurate or not is beside the point. We don't want a new name. We want the old name.

    Discussions of the name place us in an unfair bind of having to justify the name to people who lack understanding of ME or awareness of the sociopolitical context and do not share uniform agreement of what disease is even to be named. Its ridiculous. That journalists all too often suggest this "discussion" has validity shows how little is understood about the situation.
     
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  18. snowathlete

    snowathlete

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    Exactly...Not many people are able to show they have Encephalo = brain, Mye = spinal cord, Itis = inflammation, and neither is there sufficient peer-reviewed evidence for it in the majority of people who are diagnosed with ME or ME/CFS.
     
  19. halcyon

    halcyon Senior Member

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    And how would we show it without dying and having an autopsy?
     
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  20. Large Donner

    Large Donner Senior Member

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    So should the people who do show those signs have the term taken away from them? What sense does that make.

    Let me guess, if you have CFS then theres no point scanning you to see if you have signs of inflammation cos "CFS is a more accurate name .....errrmmm.... for people who don't have signs on a scan"?

    How about doing different scans, more scans, higher magnet field scans?

    Also notice he says ME means fatigue or pain caused by .....

    How many people on this site have had a scan of their spine?

    Medical science is in a very bad way, if it prefers syndrome labels by removing any access to differential diagnosis and it has forgotten that the spinal cord is part of the CNS.
     
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