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!
No Longer Naive in the Ways of The Beast
After having lived for years with ME/CFS, Jody Smith learned there's more to this beast of an illness than she realized, and that what might help one person may not help others ...
Discuss the article on the Forums.

Daily Telegraph article (should be in Monday August 29 edition)

Discussion in 'General ME/CFS News' started by Dolphin, Aug 28, 2011.

  1. Jenny

    Jenny Senior Member

    Messages:
    1,224
    Likes:
    176
    London
    Ah - that's annoying. Wish I'd checked today's version more carefully!

    Jenny
  2. Esther12

    Esther12 Senior Member

    Messages:
    5,133
    Likes:
    5,003
    Good that he recognised what an important error that was, apologised profusely, and then went on to explore whether such misrepresentations as to the efficacy of treatments available for CFS may be a more likely explanation of the anger and resentment patients feel, rather than them just 'having it all wrong'. Otherwise he would have seemed like a bit of a dick.

    lol - he doesn't even seem to realise the extent to which that change undermines the thrust of his argument. "Why would patients with a severe and disabling condition be unimpressed by treatments which were sold to them as paths to recovery when they lead to one third of them gaining an 'improvement'? It must be because of the stigma that surrounds mental health issues."
  3. Dolphin

    Dolphin Senior Member

    Messages:
    6,519
    Likes:
    4,899
    I just sent in various versions of my letter (78-129 words excluding "August 29" which may not be in it if other people reply). Not my best work by far but wanted to get something in quickly.

    One should get an autoreply.

    Best of luck to anybody else writing in. Remember, best to keep them under 200 words or most likely they will either be edited or ignored.
  4. Dolphin

    Dolphin Senior Member

    Messages:
    6,519
    Likes:
    4,899
    If you had the time/energy you could re-draft and re-send.
  5. Wonko

    Wonko Senior Member

    Messages:
    627
    Likes:
    103
    England
    He's still wrong - no one "recovered" apart from the mickey mouse re-definition of "recovered" used by the PACE trial, even by their own initial defintion of "recovered" no one did.
  6. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,168
    NYC (& RI)
    Pls everyone copy and paste the comments they wrote on the website into 2 emails: one as a letter to the editor (dtletters@telegraph.co.uk) and one to the editor-in-chief of the paper, Tony Gallagher (telegrapheditorial@telegraph.co.uk). My email to the editor is below.

  7. Min

    Min Senior Member

    Messages:
    1,087
    Likes:
    901
    UK
    The charity Invest in ME have issued a letter to the Press Complaints Commission regarding recent ME articles in the media which have presented only one viewpoint.
  8. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    840
    UK
    Great to hear Min - hoped they might being the best we have in promoting (and bringing researchers) over years. I see the MEA are responding too. Hoping the whole nasty business will backfire on the instigators of this media campaign (and of course their complete and willful ignorance here in the UK Can't help noticing the glaring/combatative eyes in the face of the author here - happily unlike any Doctor I've met.)
  9. Dolphin

    Dolphin Senior Member

    Messages:
    6,519
    Likes:
    4,899
    If you're replying to Telegraph, best to reply today

    If you're replying to Telegraph, best to reply today (as they use letters on recent items).

    dtletters@telegraph.co.uk (dtletters @ telegraph.co.uk)

    "Please include name, address, and work and home telephone numbers."

    "If you haven't included your address and telephone number your letter will not be considered for publication. Only an abbreviated form (town/village and county) will be used on the letters page."

    I've seen some good letters; however, letters I've seen were generally over 200 words. I think the Telegraph will either not use them or edit them (and they may not edit them the way you would edit them).

    Best to do a letter under 200 words I think or if you do one over 200 words, if possible also send in an edited version under 200 words.
  10. WillowJ

    WillowJ Senior Member

    Messages:
    2,890
    Likes:
    2,287
    WA, USA
    I received an autoreply containing this message:

    mine was rich text or html (and I had one word in italics), but it was not attached in a document or file

    should I re-send using plain text?
  11. drjohn

    drjohn Senior Member

    Messages:
    169
    Likes:
    24
    For some balance to Professor Simon Wessely's views, Dr Max Pemberton, (Protesters have got it all wrong on ME, Daily Telegraph, 29 August 2011) might enquire and report in a follow up article, whether there are any psychiatrists who do not think that M.E. (and I mean Myalgic Encephalomyelitis, not Chronic Fatigue Syndrome) is a mental illness that should be treated by them - and who would be prepared to say so publicly, without feeling they were rocking the profession's boat too much?

    It would be instructive to discover how many people with M.E. (separated out of the CFS bundle of illnesses) have been referred to psychiatrists and returned to the care of their GPs with a note saying this was not a case for their speciality, without having had any treatment at all and also, of those who did have the treatments that Professor Wessely recommends, what percentage have not recovered at all, or were worse after it.

    Will Max investigate some other views, or just settle for Professor Wessely's say-so?

    Yours sincerely
    Dr John H Greensmith
    ME Community Trust.org
  12. Firestormm

    Firestormm Senior Member

    Messages:
    5,819
    Likes:
    5,941
    Cornwall England
    I only ask that people respond to what was actually said in the articles themselves - one might stand more chance of being published.
  13. drjohn

    drjohn Senior Member

    Messages:
    169
    Likes:
    24
    Can't be absolutely sure but I think I have used rich text and I have certainly used italics, I think it is attachments they won't have. I usually prepare work in notepad and then copy it into an e-mail. It also gives me a folder to keep for a short while at least if anyone else sends a letter or makes a comment about the same thing. The idea is that, when I have a moment, I delete the older ones -- I have thousands!!
  14. WillowJ

    WillowJ Senior Member

    Messages:
    2,890
    Likes:
    2,287
    WA, USA
    thanks, drjohn

    (I view all my incoming emails in plain text so as to have the background grey for easier reading and no colorful, large, or otherwise jarring fonts, and the html does come as if an attachment, but I think this is different from what they mean, and I can easily convert to html whenever needed)
  15. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    840
    UK
  16. Bob

    Bob

    Messages:
    7,753
    Likes:
    9,286
    England, UK
    I just thought I'd point out that we don't actually have any 'recovery' data for the PACE Trial yet. That is yet to be published.

    I can't work out where he got "at least one in three patients". I can't think of anything that this might relate to in the published PACE Trial paper.

    The PACE Trial paper published data for participants who were in a 'normal range'.
    'Normal Range' is a concept devised by the authors, for the purposes of the study, and does not indicate good health or recovery.
    If Pemberton is refering to the 'normal range' figures then he is being misleading because some patients were already in the 'normal range', or close to it, before entering the Trial (or after receiving SMC), so the 'normal range' figures do not indicate how many participants actually improved by a significant amount, but only how many patients were in the normal range whether they had improved or not.

    If Pemberton is refering to the 'normal range' figures, then the 'one in three' figure does not refer to patients whose improvement was attributable to GET or CBT, but it refers to improvement attributable to SMC+GET (28%) or SMC+CBT (30%) (SMC = specialist medical care).
    The net number of participants in the 'normal range', whose improvement (but not necessarily a significant or clinically useful improvement) was attributable to GET or CBT, was 13% for GET and 15% for CBT (Improvement in the SMC group was 15%).

    Using a fairer assessment method of the Trial, the number of participants who improved by a minimum amount (i.e. at least a clinically useful improvement), for both of the primary outcome measurements, was 15% (attributable to CBT) and 16% (attributable to GET). But, to emphasise, this only indicates that the participants had been helped by at least a minimum improvement, and does not indicate any type of recovery. Put another way, about 85% of participants were not helped by GET or CBT, using a 'post-hoc' assesment of the trial which was included in the published paper.

    The average improvements in fatigue and physical function, attributable to CBT and GET, are even less impressive.

    Spin. Smoke. Mirrors. Lies.
  17. Dolphin

    Dolphin Senior Member

    Messages:
    6,519
    Likes:
    4,899
    Good points, Bob.

    In case, you missed it, on Friday, the article said:

    this was changed to
  18. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    840
    UK
    Much shuffling about and changing of positions no doubt (well the science is in).
  19. Bob

    Bob

    Messages:
    7,753
    Likes:
    9,286
    England, UK
    Thanks Dolphin.

    I've been away for a few days, and I'm slowly catching up with the media storm!

    Got to give credit to Wessely for his total and utter manipulation of the media.
  20. Bob

    Bob

    Messages:
    7,753
    Likes:
    9,286
    England, UK
    The actual (unspun) figure is 1 in 7 patients improved from CBT and GET (No more than 16%).
    6 in 7 participants did not benefit from CBT and GET.

See more popular forum discussions.

Share This Page