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The Independent - What are the symptoms of ME and how is it treated? May 2019

Discussion in 'General ME/CFS News' started by Sly Saint, May 12, 2019.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Pretty awful article imo.
    Includes quotes from SC AfME, and the MEA making the psych vs physical point.
    Also links to MERUK and the CDC.

    Very muddled mish mash.

    Not the best kind of 'awareness raising'.

    https://www.independent.co.uk/life-...gue-syndrome-symptoms-treatment-a8903161.html
     
  2. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Yes, it is dispiriting to see such dumbed-down fluff that completely misses the point pretty much every time. If this is advocacy, who needs enemies?
     
  3. obeat

    obeat Senior Member (Voting Rights)

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    Why on earth is SC in charge? She's running a charity for " anything goes"
     
  4. Esther12

    Esther12 Senior Member (Voting Rights)

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    The article draws attention to how the ME Association's website on the controversy is problematic: https://www.meassociation.org.uk/about/what-is-mecfs/

    There's a lack of meaningful details and it will encourage journalists to write unhelpful articles like this imo.

    @Russell Fleming - is there any way that could be updated? Or maybe even the 'controversy' section removed?

    Focussing on the psychological/physical aspect without providing any explanation of the problems here risks making patients look bad imo.
     
    MEMarge, Trish, ladycatlover and 7 others like this.
  5. JemPD

    JemPD Senior Member (Voting Rights)

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    and of course the obligatory photo of a healthy young woman siting in bed looking a bit sad :banghead:
     
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  6. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    I agree this from mea website isn’t helpful. It is also out of date, it includes CFIDS as a name, who uses that now? But doesn’t mention SEID which I think is sometimes used in the states, media at least. It is also surprising in the what-Is ME/CFS section, no mention of PEM.

     
    Last edited: May 12, 2019
  7. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    It's awful enough that it's not worth clicking through. There is no opportunity to comment either.
    Pathetic news coverage.
     
  8. Chezboo

    Chezboo Established Member (Voting Rights)

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    Thanks for the warning. I think I'd prefer to not give this one traffic.
     
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  9. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Too bad this media outlet doesn't pay for fact checking.
     
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  10. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    What a pile of tripe might as well have been written 5 years ago. Some criticise MEAction at times but compared to this the messaging for MillionsMissing is spot on. I am fairly supportive of MEAssociation but I refuse to be involved with any material that has the its real it’s physical slogan. As for AFME it is now 9 months since they supposedly had their road to Damascus moment about behavioural approach and despite employing a number of staff they still haven’t managed to review and update their web content and booklets. I described AFME as a chocolate teapot today also enlightened a couple of folks about PACE involvement. I will not stop criticising them until they stop meriting it.
     
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  11. Hutan

    Hutan Moderator Staff Member

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    The Independent article is also dreadfully boring. My eyes glazed over and I couldn't be bothered to finish reading it, and I care a lot about ME/CFS.

    Perhaps the boringness is a good thing, the average reader isn't likely to even get to the CBT and structured exercise recommendations.
     
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  12. BruceInOz

    BruceInOz Senior Member (Voting Rights)

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    I'm not sure whether to be very disappointed that the MEA seems to be recommending homeopathy and acupuncture or pleased that it considers behavioural therapies to line up between homeopathy and acupuncture.
     
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  13. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    i found the multitude of adverts too distracting...well at least it distracted me away from the very dull ‘I’ve got to do a school essay so what can I cobble together from google’ content that they seem to think is journalism.

    Very underwhelming must try harder D+
     
  14. rvallee

    rvallee Senior Member (Voting Rights)

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    Hey, the SMC did boast that most newspapers outsourced science reporting to them. And they suck even worse than that so... could have been worse.

    Maybe it wasn't a good idea to have an obviously political "charity" dominate so much science communication. Which is extremely ironic considering the alleged reason it was created.

    Seriously the SMC needs to be investigated yesterday, this is, and I believe this is the proper technical term, whack.
     
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  15. rvallee

    rvallee Senior Member (Voting Rights)

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    Well, alternative medicine is alternative medicine so it's pretty fair.

    The difference being this thing called "evidence" following this other weird thing called the "scientific method", which is clearly a huge mystery to the psychosocial ideologues.
     
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  16. Forbin

    Forbin Senior Member (Voting Rights)

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    So, somewhere between "no one" and "all people"-1 then.
     
  17. Amw66

    Amw66 Senior Member (Voting Rights)

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    This is where ME missed the boat again. A once a year opportunity to gain mainstream coverage and there is no coordinated statement on behalf of PWME; numerous soundbites of slightly contradictory information that can turn people off / reinforce stereotypes.
    This is where Valerie Elliot Smith's idea of a single PR representative body would make a world of difference.
     
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  18. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    The Independent website is a navigate. I hate reading things on their site, even if the Guardian turned me off years ago.
     
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  19. ladycatlover

    ladycatlover Moderator Staff Member

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    Oh, I missed that completely! :wtf: After the first few lines my mind just glazed over and nothing went in. :yawn: Had to turn off adblocker to read it too - wish I hadn't bothered now. And the number of ads was just incredible - makes it impossible to read, which is prob why I missed the CBT and exercise recommendations. :asleep:
     
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  20. rvallee

    rvallee Senior Member (Voting Rights)

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    About as valid as "some cancers spontaneously heal by themselves". Correct, but it's meaningless as an argument to advocate to end all cancer research and hand out cancer patients some self-help "tough shit" books instead.

    The casual indifference to millions of ruined lives from medical professionals is absurd and terrifying. Something's really wrong with the culture.
     
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