August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
Discuss the article on the Forums.

Why are doctors and patients still at war over M.E.? How the best treatment for the debilitating con

Discussion in 'General ME/CFS News' started by RogerBlack, Aug 15, 2017.

  1. RogerBlack

    RogerBlack Senior Member

    Messages:
    884
    Likes:
    2,868
    http://www.dailymail.co.uk/news/article-4790904/Why-doctors-patients-war-M-E.html


    And it continues.
    One of the most favourable mass-media UK publications I've seen.
    Goes into PACE data release, overclaiming for PACE, tribunal, and rituximab.

    Thanks to all involved!

    There is at this time one comment by someone touting the party line of PACE et al.
    I have responded to it noting that the tribunal found no threats, (which was in the article), as well as that simon W has authored >25 papers since claiming to have 'retired'. (this seems to have been approved)
     
    Last edited: Aug 15, 2017
    actup, Roy S, Forçe e Honra and 65 others like this.
  2. Kati

    Kati Patient in training

    Messages:
    5,464
    Likes:
    19,585




    Like and retweet!
     
  3. Skippa

    Skippa Anti-BS

    Messages:
    841
    Likes:
    2,960
    Zippeeee!

    Eta: I would have thought the DM was the hardest nut to crack, so this is more than it seems.

    I always thought the SMC and crew went around beligerently(sp?) telling journos what to write, perhaps even hinting at threats, and journos don't really like that if they are the conscientious type... one day one is gonna snap and say F you... like here?
     
    Last edited: Aug 15, 2017
    dangermouse, MEMum, TiredSam and 6 others like this.
  4. Molly98

    Molly98 Senior Member

    Messages:
    501
    Likes:
    4,292
    Delighted to wake up to this this morning, such a refreshing change from usual narrative. Definitely move in right direction, in fact as uk media goes it is a leap in the right direction.

    Is this the first time a major UK paper has dared not to tow the science media center and BPS brigades line? I imagine Sir Simon and his merry band of faithful followers will be in an absolute rage this morning, insensed that they are loosing control and people in the media are daring to speak out.
    First the JHP now the Daily Mail, they are not used to this, not having 100% control of the narrative, I bet they are furious.
    Thank you to anyone involved.
    Journalist can be found on twitter it is worth thanking him I think.
     
  5. RogerBlack

    RogerBlack Senior Member

    Messages:
    884
    Likes:
    2,868
    There have been several others. None quite as good as this I think.
     
    Ellie_Finesse, Jo Best, MEMum and 5 others like this.
  6. Cheshire

    Cheshire Senior Member

    Messages:
    1,121
    Likes:
    8,999
    Last edited: Aug 15, 2017
  7. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Messages:
    5,228
    Likes:
    31,916
    Jerome Burne seems to be one of a small number of traditional investigative journalists not hidebound by a predefined agenda. He got the nuances of the story. He gets one fact wrong about my involvement but it doesn't matter. I am hopeful that a large number of my medical colleagues will find themselves reading this at the request of patients. (I doubt many take the Mail but they probably have a sister in law who does, and the President of the Royal College of Physicians is the Mail Editor's sister in law. I have known her since she was seven years old.)

    Will we be getting Wessely tweets today along the lines of 'In my personal opinion there was no interference from Russia in the PACE trial.'
     
  8. AndyPR

    AndyPR Senior Member

    Don't forget folks that you can up- and down-vote comments without signing in, so once you are done reading the comments vote accordingly on those comments that are accumulating at the bottom of the article. But what would be best would be to sign up and leave a comment as well, even just a quick one of thanks, as readers engagement in this way is what the paper is looking for - the more we engage with the article, the more likely they will publish more on the same subject. :)
     
  9. Snow Leopard

    Snow Leopard Hibernating

    Messages:
    4,613
    Likes:
    12,437
    South Australia
    It's still Daily Mail and it still has rubbish in it like "yuppie flu".

    I'm certainly not going to like or RT this one.
     
    Luther Blissett likes this.
  10. AndyPR

    AndyPR Senior Member

    Sorry but in my opinion you are being too principled for our collective good. Sure, that's a personal decision that everybody needs to take, do my principles allow me to share or retweet something, but this is a big thing to happen here in the UK.

    You don't like that it's from the Daily Mail. I don't like that it's in the Daily Mail, in fact I hate the way that they demonise large portions of society for "entertainment" purposes, but the article itself is a big step forward for the UK mainstream media, and the fact that it is in the Daily Mail, whose typical readership are probably exactly the people that we need to educate, is actually a big plus point. And you don't like the fact that it mentions yuppie flu - personally I think that there is far more good in the article than there is bad. So, on balance, I have liked and shared this article, because I believe it does far more good than harm.
     
  11. Stewart

    Stewart Senior Member

    Messages:
    291
    Likes:
    3,432
    It's obviously completely up to you what you choose to like, retweet or promote in any way. But the more attention that articles like this get - highlighting the issues with PACE, GET and CBT and emphasising the biological evidence - the more awkward it will be for NICE to ignore the calls for a full guideline review.

    The thought that there are journalists out there who are prepared to scrutinise their decision-making process - and possibly a large degree of public interest in the story - will definitely give them pause for thought.
     
  12. Snow Leopard

    Snow Leopard Hibernating

    Messages:
    4,613
    Likes:
    12,437
    South Australia
    I don't believe that promoting this article will have any benefit in the big picture and I don't believe it is worthwhile to do "deals with the devil".
     
    Luther Blissett likes this.
  13. lilpink

    lilpink Senior Member

    Messages:
    873
    Likes:
    5,515
    UK
    And this: http://www.independent.co.uk/life-s...news/why-wont-they-believe-hes-ill-59669.html
     
  14. Londinium

    Londinium Senior Member

    Messages:
    170
    Likes:
    1,385
    Excellent, excellent, excellent.

    And whilst my political leanings might not be in line with the Mail's, it's worth noting that:
    • The Mail has covered the JHP issue twice, with a broadly even-handed approach, whereas the Guardian has written diddly-squat; and
    • The Mail has one of the highest circulations of any UK newspaper / website.
    So very pleased it's appeared here.
     
  15. lilpink

    lilpink Senior Member

    Messages:
    873
    Likes:
    5,515
    UK
    Jerome Burne has a record of writing properly researched pieces and has always been even handed with the information he has uncovered apropos this disease. In other words he's a 'good egg'.

    Although not the main 'take home' message from this paper, I do think we need to squirrel this observation away on the basis that if the DM in future (perhaps at the mercy of the pen of another less educated journalist) attempts to use the 'abuse' and 'threat' nonsense against us we can point to this moment where the DM itself has reported that under oath a member of the Wessely School had to admit that these threats simply didn't exist.

    "
    Indeed, one expert witness for the researchers drew parallels between these ME/CFS 'activists' and animal rights groups, suggesting there was a serious risk of violence to researchers if the data was released. But then the Information Commissioner's Office became involved and the university was ordered to cough up the data. It refused and then spent more than £200,000 to have the order dismissed.

    This was rejected by a tribunal (as for the claim of threats being made, under cross-questioning the expert witness admitted there hadn't been any)."



    Read more: http://www.dailymail.co.uk/news/article-4790904/Why-doctors-patients-war-M-E.html#ixzz4poZz8DCX
    Follow us: @MailOnline on Twitter | DailyMail on Facebook
     
  16. lilpink

    lilpink Senior Member

    Messages:
    873
    Likes:
    5,515
    UK
    I notice the BPS school is now awake and demoting comments made by people with ME at the DM thread. ;):rofl:
     
  17. Stewart

    Stewart Senior Member

    Messages:
    291
    Likes:
    3,432
    And now that the Daily Mail has printed this (is this the first time a major UK media organisation has highlighted the fact that the Tribunal judgement disproved the death threats narrative? I think it might be...) other journalists might also pick up on this point in their future coverage of ME/CFS issues.
     
  18. Mrs Sowester

    Mrs Sowester Senior Member

    Messages:
    1,033
    Likes:
    7,283
    Not even good at trolling are they?
     
    actup, ladycatlover, Chezboo and 5 others like this.
  19. Woolie

    Woolie Senior Member

    Messages:
    1,930
    Likes:
    14,556
    I respect that, @Snow Leopard. You have to do what feels right. Sometimes, caring about the means as well as the end does pay off in the long run.
     
    Luther Blissett likes this.
  20. lilpink

    lilpink Senior Member

    Messages:
    873
    Likes:
    5,515
    UK
    :thumbdown::rofl: :thumbsup:
     

See more popular forum discussions.

Share This Page