1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS and the Magic of the Canine Factor
There's been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They've been fairly indifferent to my presence and we've shared a live-and-let-live...
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ME awareness week UK news articles .

Discussion in 'General ME/CFS News' started by pollycbr125, May 11, 2010.

  1. pollycbr125

    pollycbr125 Senior Member

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    yorkshire
    ..sufferers are often still totally physically exhausted like theyre operating at about 60 per cent of the real them. A simple walk to the local shops can leave them flat out:

    jees i wish i felt like i was operating at 60 % of the real me ........ i wouldnt llike to put odds on what % of the real me im operating at :eek:
  2. Angela Kennedy

    Angela Kennedy *****

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    Hi Adam,

    There may be few shops for your chocolate cure, but there are always a few lamp-posts in the street for the pole-dancing. You will be well again...
  3. IamME

    IamME Too sick for an identity

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    "Staying in bed all day ... may slow recovery and trigger relapse"

    Is he having a laugh? Since when has a pwME got worse through resting (or respecting disability more like) except in Wessely's mind? Even the psychs are struggling to prove deconditioning. That phrase "staying in bed all day" sounds like something the BMJ "lazy bastard" nurses came out with. For the most severely affected it's hardly a "balance" and who decides whether it's "balanced" or not since the term balance tells the onlooker nothing. "building up" sounds more like GET than pacing...

    It's a really poor piece that seems to be written as a joke. The UK XMRV study is described as a replication when it was not!
  4. Angela Kennedy

    Angela Kennedy *****

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    You know - this really is an appalling article. Shepherd has been in the 'ME game' for years now. He would, surely one would think, be aware of the problems in how ME is portrayed. Yet he consistently manages to write in a way that allows trivialisation and misunderstanding of ME/CFS to continue.

    When people analyse his writings - like here, for example- so many little uses of language occur consistently that portray sufferers and what they suffer in this silly little vague way. He continues to write downright inaccuracies (that 'replication' theme he won't let go of) about the condition, promote stupidly flawed research projects such as that chocolate one, the homeopathy one etc. even though he's known to have been a member of 'quackbuster' organisations (with Wessely no less), which makes sufferers appear even more 'wooey' inclined.

    What is this man thinking of?
  5. Adam

    Adam *****

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    Is he having a laugh?

    He's having a laugh.
  6. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    I note that the articles on this site all have an "expert".

    But the article says

    "Compiled: Karen Williamson"

    I'd be interested to know much input Shepherd had and whether he had editorial control over the text or whether he supplied some text and the article was written up the compiler. Since he's flagged it up on Co-Cure he is presumably happy to have his name associated with the content.
  7. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Clay, Alabama
    Well, I have read The Guardian article twice. It's not perfect on the facts, but it is fair in my opinion. It addresses the controversy part of it, which I wish would get even more attention.

    Tina
  8. IamME

    IamME Too sick for an identity

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    I don't accept that sitting on the fence which is IMO a generous interpretation of the article, is fair for us. It allows people a get-out-of-jail card if they want to continue to believe we're the whingy troublemakers of ill-dom and that the establishment is doing its best with a problem (or people) which is just really "too difficult".

    Mention of the NICE JR is one-sided with no response canvassed, ditto Santhouse's quotes. The WPI test is mentioned but curiously, not the IC's kneejerk response test fiasco; I guess that didn't show up in Boseley's quick Googling or maybe she had the "save State embarrassment" filter turned on. No other biomedical evidence gets a mention, leaving the dangerous fallacy of ME the "mystery illness", unchallenged.

    Lynne Gilderdale's case is described as "extraordinary", in other words, it's highlighted because it's supposedly an exception to the rule and not in any way representative of the abuse and neglect going on. The CEO of astroturf AfME opines school absenteeism and describes us as "washed out". Whitewashed out, more like.

    Most of the negative language used is directed against patients. The word "radicalised" is nowadays most often used in connection with Islamic terrorism, so the psych school scores again with activism misleadingly associated with violent extremism, with a cowardly lack of specificity. Boseley condemns the whole field and entire internet presence of patients as "inflammatory" and too "traumatised" to attract the interest of researchers yet this sort of sensationalism has only ever attracted more and more psychobabblers and quacks, seemingly eager to wag a finger (but we mustn't wag one back and be good little sheep). The fact of the matter is that the field is grossly non-level, you can't use science by itself to solve a political problem, and we would take to the streets like any other civil rights groups if we weren't so damned sick.

    So if this were any other hard done by, acutely vulnerable minority, would this "sometimes they ask for it" and "it's all too difficult" subtext be acceptable?
  9. Angela Kennedy

    Angela Kennedy *****

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    Hi IamME

    Short answer to your last question - no. There is something singularly odd about the way ME/CFS patients and advocates are treated (abused) which I'm still trying to put my finger on.

    Bosely's article followed a rubric that has been common in reporting about ME/CFS for years. Your analysis here is particularly apt. What is it that makes this blatant trivialisation of the illness, this painting of advocates in books, newpaper articles, journals, as extreme conspiracy theorists/nutcases/terrorists, so common, so banal?

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