Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
Discuss the article on the Forums.

Daily Mail:Chronic fatigue victims 'suffer fear of exercise':

Discussion in 'General ME/CFS News' started by Min, Jan 14, 2015.

  1. Min

    Min Guest

    Messages:
    1,386
    Likes:
    1,927
    UK
    NK17 likes this.
  2. deleder2k

    deleder2k Senior Member

    Messages:
    1,115
    Likes:
    4,782
    Are they speaking of the PACE trial or is this something new?
     
  3. charles shepherd

    charles shepherd Senior Member

    Messages:
    2,238
    Likes:
    16,189
    Please note that online comments from the public can be made on the newspaper websites for articles that have been published in:
    The Guardian
    The Independent
    The Daily Telegraph
    These articles, along with other UK media coverage, are all available on the MEA Facebook page: https://www.facebook.com/pages/ME-Association/171411469583186
     
    Bob, snowathlete, Valentijn and 2 others like this.
  4. charles shepherd

    charles shepherd Senior Member

    Messages:
    2,238
    Likes:
    16,189
  5. Snow Leopard

    Snow Leopard Hibernating

    Messages:
    4,613
    Likes:
    12,435
    South Australia
    And if you do reply, remember: Quality, not quantity...
     
    Valentijn likes this.
  6. Simon

    Simon

    Messages:
    1,919
    Likes:
    14,452
    Monmouth, UK
    Couple of factual errors in their summary:
    • Most of the data came from patients who didn't get back to a normal life, ( 'normal wasn't even measured in this study) so no evidence it's 'key'
    • Not one in three but one in seven 'recovered' as a result of CBT/GET, using a definition of recovery where 'recovered' physical function is actually worse than that defined as 'serious disability' at the beginning of the trial.
     
    Last edited: Jan 14, 2015
    PhoenixDown, ahimsa, MEMum and 11 others like this.
  7. Min

    Min Guest

    Messages:
    1,386
    Likes:
    1,927
    UK
    letters@dailymail.co.uk

    Letters can be sent to tbe editor for publication, and must have your full address and phone number, not for publication but for them to contact you.
     
    justy and Wildcat like this.
  8. wdb

    wdb Senior Member

    Messages:
    1,377
    Likes:
    2,956
    London
    I'd really love to organize a trial of CBT for people complaining of car troubles, it sounds crazy but I'm 100% sure it would work.

    You start by recruiting people complaining of problems with their cars and give them questionnaires to rate how faulty they considered their vehicles to be.

    You then give them an 8 week course of CBT teaching then that symptoms that they complain of such as squeaking, grinding, knocking, tapping are all normal and should not be focused on or legitimized as signs of engine trouble and that is is toxic diagnoses such as 'blown gasket' or 'blocked radiator' that is perpetuating their harmful beliefs that there is something fundamentally wrong with their cars.

    You then give give the same questionnaires again to measure how faulty the owners now considered their cars to be since completing the treatment. Presumably many would now consider their cars to be less severely impaired.

    Then write a press release that CBT is effective in improving engine trouble in 60% of cases leading to complete repair in a further 30% of vehicles.
     
    ahimsa, svetoslav80, Raines and 24 others like this.
  9. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Messages:
    7,968
    Likes:
    12,806
    Cornwall, UK
  10. eafw

    eafw Senior Member

    Messages:
    816
    Likes:
    3,397
    UK
    All part of the ongoing push against welfare and people with disabilities. Expect to see more of this over next few months to coincide with Maximus takeover from Atos and of course gen election.

    Sadly not just the DM, the Independent, Telegraph and Guardian all repeat the propoganda without thought as well
     
    NK17, zzz, Valentijn and 3 others like this.
  11. eafw

    eafw Senior Member

    Messages:
    816
    Likes:
    3,397
    UK
    At least there are some decent comments on the Guardian and Independent. Good example:

    "It is astonishing that the UK media so willingly and endlessly recycles the flawed 'science' of Chalder and her KCL friends. ME is a complex neuroimmune illness, yet important and current biomedical research is ignored totally by Chalder and her fellow researchers - I use that term loosely - who are like spoiled children with their fingers in their ears, shouting NO, no, no! The PACE trial was a disaster on every front, yet rather than admit this, they continue to flood journals incestuously with their bizarre beliefs. For goodness' sake, journalists, get a grip, do the research, report the science not the non-science!"
     
    Kenshin, zzz, leela and 7 others like this.
  12. A.B.

    A.B. Senior Member

    Messages:
    3,751
    Likes:
    23,188
    I'm also sure it would work. CBT can change people's perceptions. Since all perceptions can be influenced, CBT should be "effective" for every problem known to man, as long we're conflating perception with reality itself.
     
    Keela Too, zzz, alex3619 and 5 others like this.
  13. chipmunk1

    chipmunk1 Senior Member

    Messages:
    764
    Likes:
    2,818
    control group would be car owners that don't get any support or help at all.

    i believe could work well enough to get at least a statistically significant difference and thus could then be marketed as evidence-based or "scientifically proven" solution and it would demonstrate that there is nothing that CBT can't treat and all problems of mankind are due to false and negative beliefs. the psychs would love it.
     
    zzz and MeSci like this.
  14. Wildcat

    Wildcat

    Messages:
    1,424
    Likes:
    3,663
    .
    So, ME is an irrational fear condition, according to our free, brave, and independent minded British newspapers. And the treatment consists of...... reducing fears.
    .

    The Guardian
    http://www.theguardian.com/society/...se-hinder-treatment-study-me#comment-46103742

    ‘Chronic fatigue syndrome patients’ fear of exercise can hinder treatment – study’

    [Photograph of man hiking on moorland]
    'A man walks through the Yorkshire Dales. Guiding CFS patients through a gradual increase in activity could help in treating the disease'

    ‘Researchers say belief that activity will make ME worse can limit effectiveness of graded exercise therapy or CBT’

    ‘Patients’ fear that exercise or activity will make chronic fatigue syndrome worse can significantly hinder treatment of the debilitating condition, according to researchers.’




    The Independent
    http://www.independent.co.uk/life-s...ndrome-can-benefit-from-exercise-9976254.html

    ‘Chronic fatigue syndrome sufferers 'can benefit from exercise'

    ‘People who suffer from chronic fatigue syndrome (CFS) can improve their symptoms of exhaustion by reducing their fear that exercise will make their condition worse, researchers have said.’




    The Telegraph
    http://www.telegraph.co.uk/news/sci...e-syndrome-say-researchers.html#disqus_thread

    ME: fear of exercise exacerbates chronic fatigue syndrome, say researchers’

    ‘Kings College researchers found patients who were able to overcome their fear about exercise showed the greatest improvement in symptoms’

    ‘People suffering from ME should get out of bed and exercise if they want to alleviate their condition, a major study by King's College has found.

    Research found that therapies which encourage regular activity are the best way to tackle chronic fatigue syndrome but many patients are afraid it will make them more tired or achy.’





    The Daily Mail
    http://www.dailymail.co.uk/health/a...-activities-aggravate-condition.html#comments

    ‘Chronic fatigue victims 'suffer fear of exercise': Patients are anxious activities such as walking could aggravate the condition’

    Helping patients overcome fears was key to getting back to a normal life

    · Gradually increasing exercise regime can help overcome symptoms

    · Cognitive behavioural therapy was likewise effective

    · Both treatments enabled at least one in three to recover from the disorder

    · Syndrome leaves many bed-bound or in a wheelchair


    Sufferers of chronic fatigue syndrome are being held back from recovery by fears about exercise, claim researchers.

    A new study found some people with the disorder were worried about doing activity such as walking in case it aggravated their symptoms.

    Helping them overcome those fears was key to getting back to a normal life through supervised exercise and talking therapies, it is claimed.’


    .
     
    Last edited: Jan 14, 2015
    Min likes this.
  15. deleder2k

    deleder2k Senior Member

    Messages:
    1,115
    Likes:
    4,782
    Dah... What a load of bullshit. Haukeland University hospital will publish their open phase 2 Rituximab trial which shows as good results as the double-blinded study did. Hopefully the same newspapers will write a story about it.
     
    MEMum, taniaaust1, SDSue and 13 others like this.
  16. Snow Leopard

    Snow Leopard Hibernating

    Messages:
    4,613
    Likes:
    12,435
    South Australia
    Guys, I have to disclose a conflict of interest: I have been exercising for several years. I have gained back muscle strength, but my mental fatigue (and permanent headache) are unchanged.
     
    justy likes this.
  17. Min

    Min Guest

    Messages:
    1,386
    Likes:
    1,927
    UK
    How one earth do we address this relentless propaganda?

    It seems an impossible task when when the UK's larger M.E. charities are collaborating with White et al, and fundraising from people they claim have M.E. doing marathons, 90 mile walks etc.
     
    redrachel76 and justy like this.
  18. Bob

    Bob

    Messages:
    9,844
    Likes:
    33,946
    England (south coast)
    I think that's a great analogy. If like to see that published somewhere.
     
    leela likes this.
  19. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Messages:
    7,968
    Likes:
    12,806
    Cornwall, UK
    Perhaps we should do a study on whether people are afraid of walking in front of cars in case they get run over, or of eating wild fungi without checking whether they are edible, or of rubbing dog sh*t in their eyes in case they get Toxocariasis, or of jumping into bonfires in case they get burnt...and of course silly diabetics are afraid of stuffing themselves with sweets.

    So much irrational fear out there - we really must get over it - health and safety gone mad...:rolleyes:
     
    Last edited: Jan 14, 2015
    leela, alex3619, Valentijn and 4 others like this.
  20. Bob

    Bob

    Messages:
    9,844
    Likes:
    33,946
    England (south coast)
    They've published a new pace trial paper, along with lots of propaganda. Same pace trial but rehashed data and new analyses. But nothing of substance. There are a number of new threads about it, as well as this one.
     
    Antares in NYC and Wildcat like this.

See more popular forum discussions.

Share This Page