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Putting the record straight - info using 'chronic fatigue' as ME/CFS

Discussion in 'Advocacy Projects' started by slysaint, Nov 11, 2016.

  1. slysaint

    slysaint Senior Member

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    This is something that really bugs me. More than that, to my mind it perpetuates the whole idea that ME/CFS is only 'chronic fatigue'. We are stuck with the name (CFS) for now but that does not excuse people writing supposedly informative articles using the name of one of the many symptoms (chronic fatigue) as an acceptable moniker.

    This might be something you might already be doing but just in case..........
    Whenever I come accross this misuse of chronic fatigue I am contacting the site/author and explaining:
    "
    Throughout your literature you refer to Chronic fatigue.
    I would like to point out that this is a symptom of many illnesses and NOT the same as ME/CFS or CFS which is a disease in it's own right.
    This confusion is widespread and has lead to major problems in getting the disease the recognition it deserves.
    We know the name CFS is misleading and we hate it (why most sufferers keep the original name M.E. which stands for Myalgic Encephalomyelitis).
    But articles and literature that repeatedly make this mistake only help to reinforce this belief that CFS is only chronic fatigue and does our community immeasurable harm."

    I would urge others to do the same.

    sly:devil:
    Edit: I am posting this link here in addition to below as I think it explains the difference well:
    https://www.verywell.com/chronic-fatigue-or-syndrome-716109
     
    Last edited: Nov 12, 2016
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  2. Mij

    Mij Senior Member

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    @slysaint it's the "fatigue" curse from the CDC that continues to perpetuate this ignorance.
     
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  3. JohnM

    JohnM Senior Member

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    A case in point - https://www.nice.org.uk/guidance/conditions-and-diseases - no longer under neurological conditions, we get to have our very own category now, and yes we are labelled as Chronic fatigue syndrome; gotta love NICE, not! :(
     
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  4. paul80

    paul80 Senior Member

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    I hate the name Chronic fatigue syndrome and actually see the name as an insult. I don't understand why a lot of the people who are on our side still refer to it as M.E/CFS, why not just call it M.E.

    Also what exactly happened with the name SEID (Systemic Exertion Intolerance Disease) ?, that seems like a perfectly descriptive name for it.
     
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  5. slysaint

    slysaint Senior Member

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    Just need to clarify; this is not about whatever name people want to use (CFS, ME, SEID etc) this is about using the term 'chronic fatigue' on it's own when they are talking about ME/CFS.

    edit: if you find any instances of this but don't feel up to following it up, post the link on this thread. Also, to save time (and energy) feel free to cut and paste what I wrote at the top.:)
     
    Last edited: Nov 11, 2016
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  6. Snowdrop

    Snowdrop Rebel without a biscuit

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    Perhaps a brief statement as to why/how there is this confusion on the subject might not go amiss.

    Something like: It's understandable that the media might find this confusing. There are researchers studying the symptom chronic fatigue and not the disease ME but they have been uncareful in distinguishing between the two. CBT is recommended for the former the latter will require a biological intervention.

    Also, thanks for suggesting and or taking this on.
     
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  7. slysaint

    slysaint Senior Member

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    IMO TMI;)

    Wasn't planning to do it all myself..........was hoping others might want to do their bit as and when they can......if we all 'did' one a week, or one a month..............:cool:
     
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  8. *GG*

    *GG* Senior Member

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    Perhaps because they were not diagnosed with ME, but were diagnosed with CFS? Such as myself. I am not going to say I have been diagnosed with ME, out of respect for people who have, and for those who think the Names are Not interchangeable. Perhaps I am not aware of the Criteria that says, Yes, they are the same. Did the IOM report do that?

    I have a long history now. Have done the 2 day CPET test and was found to be "moderately" impacted. With being at 60% for a person of my age and sex.

    GG
     
  9. Barry53

    Barry53 Senior Member

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    Last edited: Nov 11, 2016
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  10. slysaint

    slysaint Senior Member

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    Came accross this website and I must say overall I am impressed with its content.
    This is the link to the relevant topic for this thread (have also put it at the beginning of the thread)
    https://www.verywell.com/chronic-fatigue-or-syndrome-716109
    But I think the rest of the info on ME/CFS is pretty good (although the stock photos are still a bit dodgy):rolleyes:
     
  11. worldbackwards

    worldbackwards A unique snowflake

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    Frankly, I'll be disappointed if you don't do all of it all the time. And so will the kittens who dislike the term "Chronic Fatigue".

    I hear that this kitten has just been specifically informed that slysaint will NOT be doing this entirely by herself:

    [​IMG]

    I think it's a shame that you'd let a poor, innocent creature down like that.

    Shameful.
     
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  12. slysaint

    slysaint Senior Member

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  13. worldbackwards

    worldbackwards A unique snowflake

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    I'm just amusing myself, pay no attention to me. :)
     
    Last edited: Nov 13, 2016
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  14. OverTheHills

    OverTheHills

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    @worldbackwards I laughed my head off. Are you sure you aren't Armando Ianucci or Chris Morris?

    Joking aside, well done to @slysaint, that sort of awareness raising is very important. Every little helps.
     
  15. worldbackwards

    worldbackwards A unique snowflake

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    I just had a odd vision of slysaint working day and night to trace down every lead put up on here to appease the Kittens Against Chronic Fatigue (KACF) whilst everyone else sat around on their arses unable to help. I'm not sure that anyone else thinks it's very funny though.

    Perhaps I've watched one too many episodes of The Day Today, although I tend to feel these days like I'm living in a particularly lengthy run of Blue Jam.
     
    Last edited: Nov 13, 2016
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  16. slysaint

    slysaint Senior Member

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    It's hard not to :p.......although I haven't the faintest idea what you are on about half the time..........you caught me at a bad moment...........:devil:
     
  17. worldbackwards

    worldbackwards A unique snowflake

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    Ah well, you aren't alone there. :)
     
  18. slysaint

    slysaint Senior Member

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    Didn't know where to post this and didn't feel it worthy of a new thread.
    I was looking at the Nightingale website and was somewhat dismayed to find our two favourite UK ME charities there; but anyway clicked on the Action for ME link which took me here: http://www.afme.org.uk
    Association for Myalgic Encephalomyelitis........??:cautious:

    except under heading ME Management:
    "
    The Balance Between the Mind and the Body
    Research has shown that mental and physical health are closely connected. In other words, mental health problems can also cause physical problems and vice versa. And this is especially obvious in ME patients many of which also suffer from depression. What is more, depression often makes the already unbearable ME symptoms even worse. Most health experts reject psychotherapy and psychological counselling as sufficient for successful ME management but there is a general agreement that it is a very important part of ME treatment."

    AND YET Under a heading of 'Severe ME'
    "
    The Need for Increased Awareness of ME, Especially in the Medical Community
    ME awareness among the general public is low. Most people have never even heard about it, while those who did tend to underestimate its seriousness. What is more, the condition is misunderstood even by the medical community as many health experts refuse to acknowledge it as a physical illness. This clearly reveals the case of Sophia Mirza whose death is widely considered as the consequence of misunderstanding of ME and underestimating the risk and severity of potential complications. Mirza’s doctors refused to acknowledge physical symptoms of the condition and treated her for mental disorder. As a result, her health deteriorated rapidly and in 2005, she died from complications of the condition, becoming the first person in the UK whose death was directly attributed to ME. She was only 32 years old."

    I've sent Nightingale an email with regards to their links but wonder how many other sites might be directing people to this one (it says Content on this website copyrighted © by AFME.ORG.UK 2015 so it's not that old).
     
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  19. Valentijn

    Valentijn Senior Member

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    Because we need to communicate with people who don't recognize ME as a disease, and might think we're just really emphatic in talking about ourselves :p And since the primary point of communication is to be understood, it's often more effective to use ME/CFS instead, especially where there is limited space to explain the naming issue and indulge in the long discussion which usually follows.
     
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  20. Webdog

    Webdog Senior Member

    I've been rather disappointed at the number of doctor's who continue to use "chronic fatigue", even after being asked to please not use that term.

    This includes my former specialist at the Open Medicine Institute! I couldn't believe in conversation they commonly use the term "chronic fatigue" at OMI without apparently recognizing the inappropriateness.

    Personally, I find fighting the label "chronic fatigue" a futile game of whack-a-mole. I suspect "chronic fatigue" will stick around until the name "chronic fatigue syndrome" itself is retired.
     

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