Looking Ahead to Change: Little by Little
I don't make New Year's Resolutions. I don't think I ever really did, but the last decade or two would have been enough to stifle that impulse. I've just been too aware that I don't have that much control over what happens in my life.
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(Not a recommendation) Essex CFS service self-promotion for ME awareness week

Discussion in 'General ME/CFS News' started by Dolphin, May 14, 2016.

  1. Dolphin

    Dolphin Senior Member

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    Charming. No mention that this person was lucky.

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    http://bit.ly/24Zx8fg i.e.
    http://www.southend.nhs.uk/about-us/media-centre/southend-news/nr-56-(2016)/

    Could have been worse of course.
     
  2. TiredSam

    TiredSam The wise nematode hibernates

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    Advert dressed up as news story.
     
  3. Valentijn

    Valentijn WE ARE KINA

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    An excellent example of the power of brainwashing. Can ME/CFS patients get deprogramming paid for by the NHS afterward? :rolleyes:

    ETA - Never mind, just another quack probably lying through her teeth as a marketing ploy:
     
    TiredSam, Mij, Chrisb and 1 other person like this.
  4. Chrisb

    Chrisb Senior Member

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    I wonder whether there are no patients in Essex who have failed to recover from a virus within two years of onset and whose cases might have been reported.
     
    TiredSam and Bob like this.
  5. Mij

    Mij Senior Member

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    She got better from doing this:

    Jo shares her recovery tips

    • Nourish and hydrate yourself. Ditch the junk and eat as clean and green as possible. Avoid stimulants like caffeine and sugar - these are fake energy.
    • Get into a routine and put some structure into your day. This will enable you to see improvements.
    • Practice good sleep hygiene and keep a regular time to go to bed and get up.
    • Allow for some "me time" every day. Rest, relax, restore energy and calm the nervous system. Use meditation, deep breathing, listen to music or just sit in "nature" and be quiet.
    • Do something that brings you joy every day. Laughter is tricky when you feel so ill but it is very healing.
    • Remember that a good day is just a good day and not necessarily a recovery. The nature of CFS/ME means it fluctuates so don't overdo it. Small steps are key to recovery.
     
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  6. A.B.

    A.B. Senior Member

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    There's no guarantee that the patient story is even real. These people make stuff up all the time to tell a nice story that's good for business and attracts clients.

    Besides, from a single case one cannot conclude anything. Regression to the mean is one of the biggest causes of a treatment falsely appearing effective. One has to look at clinical trials to figure out whether a treatment works. And we all know how the biggest trial of biopsychosocial approach to CFS went.
     
    Last edited: May 14, 2016
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  7. Bob

    Bob

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    Isn't there a major conflict of interest here? Jo isn't a patient; she's an NHS employee or self-employed consultant. And its simply wrong to portray her as a patient. The info in this article is conflicted. And it's unhelpful and wrong for an NHS article to tell all ME/CFS patients that they can recover if only they were to put their minds to it. Where is the evidence to support this claim?

    "Recovery is possible - You've got the power to do it"

    "Jo shares her recovery tips"

    • Nourish and hydrate yourself.
    Drat! Why didn't I think of that?
    • Allow for some "me time" every day.
    Double Drat! Again! Why didn't I think of that? No wonder I'm not recovered!
    • Use meditation, deep breathing, listen to music or just sit in "nature" and be quiet.
    So the NHS is recommending meditation, and listening to music as a treatment for ME that will lead to recovery? Really?
     
    Last edited: May 14, 2016
  8. Bob

    Bob

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    Including stigma from professionals at the Essex CFS Service, who publicly dismiss the illness as a "meme". Yes, you read it correctly, ME/CFS is a meme, according to the Essex CFS Service!

    So, Linda is a member of staff (cognitive behavioural therapist) providing the services at the Essex CFS Service, and she apparently believes that a person is more likely to develop ME/CFS if they are a "perfectionist" or a "Type A personality". Really? This isn't an evidence-based health service - it's a cult.

    "Biopsychosocial" explains a thing or two!
     
    Last edited: May 14, 2016
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  9. tinacarroll27

    tinacarroll27 Senior Member

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    " Jo has harnessed and reined in her Type-A qualities and now uses them to find the best combination of treatments that work for her" Good god!! This is disgusting!! I suppose I shouldn't be surprised
     
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  10. Bob

    Bob

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    I don't think this article is even legal. The advertising standards agency would probably rule against it because it's promoting a service by using misleading medical claims about recovery. And I'd be surprised if it meets the NHS's editorial standards.
     
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  11. Esther12

    Esther12 Senior Member

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    Just as a piece of writing, this was painful. It helps me understand how Suzanne O'Sullivan's work could be seen as relatively impressive.

    Jo being a "health improvement practitioner" means that it's fair to hold her to higher standards than one normally would for patients anecdotes imo.
     
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  12. Bob

    Bob

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    Yes, I agree. I deleted my earlier post because I hadn't read that she is not a patient when I posted it.
     
  13. user9876

    user9876 Senior Member

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    Given the NHS is now constructed from commercial entities would a complaint to the advertising standards agency be worth while. The issue may be they are advertising to patients but the CCG are paying. It would be interesting to know what promises they make to CCG around the cost effectiveness of their treatments. Especially since the LTFU from pace showed no effect and the economic analysis of PACE seemed to use much lower costs than we see other services charging.
     
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  14. Valentijn

    Valentijn WE ARE KINA

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    Yeah, the quack running the fatigue clinic I went to claimed that I didn't need a referral for Tilt Table testing because "he'd had ME too, and the same test was negative for him."
     
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  15. worldbackwards

    worldbackwards A unique snowflake

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    I could point out that I was a lazy sod to start with, but I doubt that would do me much good either.
     
    Last edited: May 14, 2016
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  16. sarah darwins

    sarah darwins I told you I was ill

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    "... you have to stop putting the responsibility of getting better on somebody else and having the expectation that somebody else is going to 'fix' you."

    Hear, hear. Sick people have been expecting doctors to fix them for far too long. It needs to stop.
     
    KristenSF, IreneF, Solstice and 16 others like this.
  17. TiredSam

    TiredSam The wise nematode hibernates

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    x2
     
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  18. daisybell

    daisybell Senior Member

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    Well, I already follow Jo's recovery tips so I'm delighted to know that I'm recovered! :rofl:
     
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  19. Valentijn

    Valentijn WE ARE KINA

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    Well obviously you need a self-proclaimed professional to let you know that you're doing things wrong! Too much of this, too little of that ... everyone must be helped to find the elusive level of complete perfection before the magical fairies descend and sprinkle us with their Dust of Miraculous Healing.[1]

    [1] If magical fairies do not descend even when doing all of the right things in exactly the right manner, the patient is completely at fault for presumably thinking the wrong thoughts.
     
  20. Kati

    Kati Patient in training

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    That's horrible stuff. They have no understanding about pathophysiology, about the disease. They think we're simply tired, unmotivated folks who don't want to work.
     
    Last edited: May 15, 2016

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