The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

Radio on ME/CFS Sat 5th Nov 9-10amGMT

Discussion in 'Action Alerts and Advocacy' started by Jenny TipsforME, Nov 4, 2016.

  1. Jenny TipsforME

    Jenny TipsforME Senior Member

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    This morning there's going to be a radio show on Radio Bristol about ME, with EC and people on that side of the debate.

    You can listen here http://www.bbc.co.uk/programmes/p001d79q
    9-10am GMT, not a good time for us Bristolians with ME to do a good job of sounding very reasonable whilst clearly communication the nature of our objections!
     
  2. Jenny TipsforME

    Jenny TipsforME Senior Member

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    I think it maybe possible to phone in wherever you are though when I phoned in for the John Darvall show they did want to know which neighbourhood I lived in.
    • On-air - call a show: 0845 900 5 949
    Text: 81333 and start your message with the word "Bristol" - you will be charged at your standard message rate.

    I can't emphasise enough that due to the position we have been put in (gaslighting) a useful goal of contacting the programme is as much about humanising us as sane, reasonable people to the public as it is getting across the specific points.

    This programme is unlikely to be the friendly platform that John D provided and the adrenaline from that wiped me out. I think it is unwise for me to phone in again this week.
     
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  3. Jenny TipsforME

    Jenny TipsforME Senior Member

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  4. eafw

    eafw Senior Member

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    Last edited: Nov 5, 2016
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  5. Jenny TipsforME

    Jenny TipsforME Senior Member

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    Just listening to the programme. It all sounds so sensible it almost convinces me!

    Is she right that we're misreading the Dutch FITNET follow up study?

    She describes PACE as a great, great study so think I'll double check for myself. ..
     
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  6. Ysabelle-S

    Ysabelle-S Highly Vexatious

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    Anyone still propping up the PACE trial should step down immediately. The only reason they're getting away with it is the SMC and friendly media organisations are protecting them. Protecting THEM and not the patients. But they cannot stop the fall of PACE. Nor can they pretend they didn't know it was happening.
     
  7. Countrygirl

    Countrygirl ME is not MUS

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    Janet Dafoe response to FITNET:

    I'm a Child Psychologist, I know CBT, and I know ME/CFS. This study E Crawley is doing is a travesty!

    Facebook: Janet Dafoe
    November 2 at 10:42pm ·
    Good article responding to the initiation of ANOTHER ridiculous expensive study now starting in the UK by Esther Crawley, one of the people involved in the discredited debunked PACE Trials. Horrifying that she's now focusing on CHILDREN withME/CFS, treating them with Cognitive Behavioral Therapy via Skype, This just has to stop! The U.K. people seem blind to all the great science showing that ME/CFS is a physical disease in which the metabolism of ATP is disrupted causing severe symptoms in all body systems. It is just ridiculous to claim that CBT could cure this! And the study she is basing it on from the Netherlands had NULL results!! What is wrong with these people! My heart goes out to those patients in the UK. THEY FEEL EVEN MORE DESPERATE THAN THE PATIENTS HERE!
     
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  8. Snow Leopard

    Snow Leopard Hibernating

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    The same trial where Dr White criticised the 'recovery' criteria as being too lax? ;)
    (ironically the same criticism many have had of the PACE trial 'recovery' criteria)

    The data shows patients had the same level of 'recovery' regardless of whether they were initially randomised to FITNET, whether they were originally in the control group and then recieved FITNET after the trial, or whether they were in the control group and did not recieve FITNET.

    This is the graph:
    http://pediatrics.aappublications.org/content/pediatrics/131/6/e1788/F2.medium.gif
    It shows that the scores were similar at LTFU regardless of the treatment before or after the trial.
    http://pediatrics.aappublications.org/content/131/6/e1788.long


    It's the same lie that was told about the PACE trial followup - the data (in the appendix) showed that when divided into such groups, the scores were similar, regardless of whether they received treatments during or after the trial or were in the control group and opted for nothing after the trial.
     
    Last edited: Nov 5, 2016
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  9. snowathlete

    snowathlete

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    Bad methodology is unforgivable in itself, but I'm not sure how to describe these situations where they say the data shows one thing when it shows another, as this is even worse.
     
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  10. Snow Leopard

    Snow Leopard Hibernating

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    Consistently misreporting scientific facts in the media is scientific misconduct.
     
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  11. Countrygirl

    Countrygirl ME is not MUS

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    I think you will find it was Prof Peter White and Trudie C who said that. (Perhaps Crawley did as well, and I missed it)

    They wrote (I have the quote on Word) that they found their definition was so lax that some on entry would have qualified as recovered.

    (yes, I know.........ironic)
     
  12. Snow Leopard

    Snow Leopard Hibernating

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    Yes you're right, my mistake.
     
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  13. Cinders66

    Cinders66 Senior Member

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    Did Crawley say PACE reanalysis still show patients much More like to get better if they seek treatment? A) not true b) no qualifying statement to the public that this applies to the ambulent and likely newrly Ill not previously "mismanaged"..
    The public are essentially getting the message that CFS and GET have effective treatment in behavioral therapy. It doesn't matter if you Aslo say we believe in biological basis, the effect on Our ability to fundraise To fund research is huge.
    Listening to that interview i'd conclude ME/Cfs (Esther quick to use ME in first answer) is mainly fatigue with "often" other symptoms and PEM not that it's multi system disease defined by PEM. I'd not realize the severely affected existed and I'd think behavior therapy and sleep and exercise mainly sufficient to solve the "condition"

    If the charities can't get her to understand this then what's the point of being constrained in "their big tent" CMRC?
     
    Last edited: Nov 5, 2016
  14. sue la-la

    sue la-la

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    Transcript of Radio Interview - Esther Crawley & FITNET
    (also available as a PDF, at end of post)


     

    Attached Files:

    Last edited: Nov 5, 2016
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  15. Countrygirl

    Countrygirl ME is not MUS

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    @thank you sue la-la

    Is it also professional misconduct to peddle misinformation?
     
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  16. Jenny TipsforME

    Jenny TipsforME Senior Member

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    Thank you this is useful
     
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  17. Jenny TipsforME

    Jenny TipsforME Senior Member

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    ["Countrygirl, post: 783350, member: 397"]

    This is also the bit that stayed in my mind too. flabbergasted that all other global research batted away like this!
     
  18. Snow Leopard

    Snow Leopard Hibernating

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    TL;DR: same old lies you've seen before.
     
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  19. Esther12

    Esther12 Senior Member

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    Outstanding! Thank you.
     
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  20. eafw

    eafw Senior Member

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    this is brilliant suelala, did you stick it in the other thread as well ?
     
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