Invisible Illness Awareness Week 2016: Our Voices Need to Be Heard
Never heard of Invisible Illness Awareness Week? You're not alone. Jody Smith sheds a little light to make it more visible
Discuss the article on the Forums.

Rod's back! Coverage in The Spectator, 2nd November

Discussion in 'General ME/CFS News' started by worldbackwards, Nov 2, 2015.

  1. worldbackwards

    worldbackwards A unique snowflake

    Messages:
    2,091
    Likes:
    10,358
    Earth
    Everyone enjoying themselves?

    http://blogs.new.spectator.co.uk/20...e-syndrome-is-not-actually-a-chronic-illness/

    The Spectator have already followed up with this from Isabel Hardman, presumably to offset criticism. Basically pushing the Sharpe line...

    http://blogs.new.spectator.co.uk/20...ed-that-me-is-not-actually-a-chronic-illness/

    Which she now, from my observations on Twitter, probably wishes she hadn't bothered writing.

    OK, obviously Liddle is a scumbag. Nothing new there.

    Hardman's reactions are more interesting and I feel sorry for her, and understand why she might think twice before "defending" ME patients again. She's in a situation where she's debunked a false claim. She's done everything by the book, she's gone to the researchers themselves, she's accepted their authority. She's also found out that, for ME patients, this isn't up to much and she doesn't understand. Oxford University! What could be more solid and respectable than that. Why should she dig deeper? Why would there be any question over the veracity of such a solid institution?

    And this is where we lose every time. When Sharpe and co published that paper, they knew full well that it showed CBT/GET to be, long term, no better than doing nothing. But they also knew that the credibility of the people likely to point this out is zero. Less than zero. If there is a measure of credibility equivalent to 0 degrees Kelvin, the "absolute zero" of temperature, that is where our credibility lies.

    And so they knew that they could say whatever they wanted, because the only people who would gainsay them look like cranks and conspiracy theorists, rather than patients who have discovered from bitter experience that the agenda of these treatments is not to make them well, whatever else it is.

    And essentially decent journalists like Hardman, a political lobby hack who's job is not to know the ins and out of scientific papers and long running medical feuds, end up on the receiving end of a lot of criticism, by and large measured from what I've seen, about something they know nothing about. But, if they default to received wisdom and their own experience, what it comes down to is; that distinguished Professor Sharpe and his polite statements vs an anti-science rabble who don't want to hear the inconvenient news.

    And so we end up in a situation where the truth is in plain sight and nobody wants to see it. Because it comes from the wrong mouth.
     
    Last edited: Nov 2, 2015
  2. worldbackwards

    worldbackwards A unique snowflake

    Messages:
    2,091
    Likes:
    10,358
    Earth
    To be honest, James Coyne isn't doing us much good on there. I suspect he hasn't learned from bitter experience what happens when you get worked up.
     
  3. Wildcat

    Wildcat

    Messages:
    1,424
    Likes:
    3,663
  4. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Messages:
    5,228
    Likes:
    31,895
    I tried to post this on Harman's comments:

    Dear Isabel,

    I am afraid even you have got it wrong. I am a retired professor of medicine at UCL and have a lot of experience with designing therapeutic trials. The PACE trial is completely valueless because it breaks the most basic rule of reliable trial design - it is unblinded and has subjective end points. Ask any trials designer and they will tell you this is a waste of time. The fact that Oxford University is involved means nothing - there are people who do not understand what they are doing in all major universities.

    The reason the patients are vociferous is that they are being forced to accept very poor science. If I Had ME and realised just how bad this trial is I would be spitting blood as well. This is the Emperor with No Clothes in Spades. Just sit next to a professor of clinical pharmacology at dinner sometime and ask about this trial - it is about time the psychiatry profession realised they can no longer get away with this sort of rubbish.


    But I don't think I am logged in. I cannot cope with all these logging in procedures. If anyone like @Dolphin can post it by proxy then that would be good. Sorry for being a wimp.
     
    green_monster, leela, Woolie and 39 others like this.
  5. adreno

    adreno PR activist

    Messages:
    4,843
    Likes:
    11,020
    cfsStevew, Hutan, Cheshire and 2 others like this.
  6. Tom Kindlon

    Tom Kindlon Senior Member

    Messages:
    1,377
    Likes:
    8,244
    I've posted it for you now:
    http://blogs.new.spectator.co.uk/20...ctually-a-chronic-illness/#comment-2339408066

    ETA: Looks like it has been deleted. Can't help. Not sure if anyone else can.
    @Jonathan Edwards

    I checked my account and it was marked as spam. Maybe somebody else can post it but don't put a link in it (I linked to the Jo Edwards' post on PR).
     
    Last edited: Nov 2, 2015
  7. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,812
    Rod Liddle and his fanclub aren't worth engaging with. They are 100% trolls ... completely uninterested in the facts. And anyone who might be capable of rational thought would not go near his blog.
     
    leela, SOC, SilverbladeTE and 4 others like this.
  8. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,812
    He's allowed to get worked up. He isn't an ME patient :p
     
  9. worldbackwards

    worldbackwards A unique snowflake

    Messages:
    2,091
    Likes:
    10,358
    Earth
    Yes, but it isn't him who'll get it in the neck. Other Spectator journos already talking about ME trolls (though it's not just him to be fair).

    However, fair to say @Bob has been an absolute star. Polite and effective. It can be done!
     
    CantThink, helen1, SOC and 3 others like this.
  10. Wildcat

    Wildcat

    Messages:
    1,424
    Likes:
    3,663
    .
    James Coyne is getting it in the neck. ME patients have been making polite comments in the national papers and journals for years ..... and still get it in the neck merely for politely for stating facts ...
    .
     
  11. worldbackwards

    worldbackwards A unique snowflake

    Messages:
    2,091
    Likes:
    10,358
    Earth
    But he gets to walk away. Whereas for us it becomes another example of ME advocates who can't behave themselves. The polite comments will be forgotten soon enough. They'll remember that.
     
    Antares in NYC likes this.
  12. Marco

    Marco Grrrrrrr!

    Messages:
    2,379
    Likes:
    3,175
    Near Cognac, France
    I like Rod. Refreshingly non PC for a labourite and tells it as he sees it; In this case and in his previous writings on the subject he picked the wrong topic on which to vent his spleen and will soon find himself on the wrong side of the issue. Not that he minds I'm sure as it's all grist to the mill.

    Isabell on the other hand is a complete dilettante in her day job (how she ever ended up as deputy editor of the Speccie is beyond me) and obviously has less of a grasp of the issues around CFS/ME and CBT. If she thinks she's helping she isn't.
     
  13. Scarecrow

    Scarecrow Revolting Peasant

    Messages:
    1,897
    Likes:
    5,353
    Scotland
    So has MEMilitant. I'm not sure why those quotes were deemed so offensive that they merited being made an example of. Embedding them at the bottom of the blog just makes Hardman look a bit oversensitive.
     
    SOC, Bob, GalaxiiGrl and 2 others like this.
  14. adreno

    adreno PR activist

    Messages:
    4,843
    Likes:
    11,020
    And how many other issues has he been on the wrong side of, if this is his approach to facts? But I guess if you like reading opinionist junk, it's for you.
     
  15. Tyto alba

    Tyto alba

    Messages:
    83
    Likes:
    335
    This is a magic act, and it's all about distraction and sleight of hand.

    Press release that generates extraordinary headlines and article on front page of Telegraph and Daily Mail.
    Patients in uproar.
    A second, carefully worded, but ambiguous, statement about being misrepresented in the first press release.
    More patient uproar, but how can patients be so ungrateful - the PACE trial therapies are beneficial to patients.
    A Guardian article, with a peculiar, 'on the surface' about turn from the author.
    'Ex' CFS researcher points at and promotes Guardian article.
    More patient uproar.
    A further Daily Mail article - no right to reply because comments disabled.
    Spectator good cop bad cop routine.
    'Ex' CFS researcher points to the good cop article and promotes it.

    Patients portrayed as being ungrateful for the research/how it's stigmatising mental health issues - the straw man arguments are appearing everywhere.
    Patients portrayed as abusive militants - how can they be sick if they argue so much.
    Certain figures are maneuvering themselves amongst all this to be the 'voice of reason', the 'truthholders', the real patients champions, if only those ungrateful ME sufferers would aquiese.

    But the important issue in all of this - the null results are being buried.
     
  16. TiredSam

    TiredSam The wise nematode hibernates

    Messages:
    2,677
    Likes:
    21,535
    Germany
    I had no idea that anyone could stoop that much lower than Max Pemberton. There has to be a level below which we decide not to go, and I think this article easily qualifies. Why even respond or go near his site, he's just an attention-seeking wind-up merchant with a pack of trolls at the ready. Does anyone who isn't a pig-ignorant bigot give a **** what he thinks about anything?
     
    green_monster, Katherine, SOC and 3 others like this.
  17. Chrisb

    Chrisb Senior Member

    Messages:
    1,050
    Likes:
    5,354
    It is amazing that Liddle was once a BBC editor, and that it was apparently he, and not the employer, who terminated the relationship.
     
  18. sarah darwins

    sarah darwins I told you I was ill

    Messages:
    2,467
    Likes:
    10,480
    Cornwall, UK
    So, the question is: how do we get a major British newspaper to publish an article by Jonathan Edwards, rather than a comment below the line.

    Because nothing much will change until we start seeing contrary opinions published by people who aren't patients but scientists/doctors. What happened with The Telegraph last week was a perfect double-hit for us: first "The Science", from the psychiatric perspective, of course. Then the contrary view. By a patient. Naturally. It all reinforces the "only ME patients think they are really ill" myth.
     
  19. worldbackwards

    worldbackwards A unique snowflake

    Messages:
    2,091
    Likes:
    10,358
    Earth
    To be honest, the tone felt a bit aggressive. Bob engaged in polite conversation. MEMilitant started in confrontation mode (the name is probably a joke, but I doubt it helps). In a situation where no one has to listen to us and has preconceptions of who and what we are, I feel that it helps to be nice even if you're seething. And especially if someone doesn't know they've done anything wrong.
     
    CantThink, Scarecrow and Cheshire like this.
  20. TiredSam

    TiredSam The wise nematode hibernates

    Messages:
    2,677
    Likes:
    21,535
    Germany
    Could this just be complete incompetence? Two writers at the Spectator (does anyone read it since Christopher Hitchens died?) decide to get in on the topic of the week, a couple of days late, and they try taking opposing views but as neither has done any research or knows anything about it, they both just end up throwing words on the page and making rather a mess.

    Or was Rod Liddle asked to go "abuse" fishing, and has just got himself a rather good catch?

    What would happen if they were completely ignored and no-one posted anything?
     
    SOC, WillowJ and Chrisb like this.

See more popular forum discussions.

Share This Page