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9th Invest in ME International ME Conference, 2014 - Part 2: Pathogens and the Gut
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ME Association Statement: Forward-ME meeting and the NICE Guideline on ME/CFS

Discussion in 'General ME/CFS News' started by Firestormm, Jul 10, 2014.

  1. Firestormm

    Firestormm Guest

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    alex3619, Cheshire, Bob and 6 others like this.
  2. charles shepherd

    charles shepherd

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  3. charles shepherd

    charles shepherd

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    Prof Mark Baker, Director for the Centre for Clinical Practice at NICE, said: “We are unable to comment on this individual but when the NICE guidance on chronic fatigue syndrome was developed in 2007, there was not enough clinical evidence to suggest that prescribing supplements such as vitamin B12 should be recommended.

    “However, NICE did acknowledge that some people have reported finding supplements helpful as part of a self-management strategy for their symptoms.

    “If a person uses supplements and believes they are helpful to their condition and they don’t interfere with the clinical management of their condition, then NICE does not object to their use.”
    heapsreal and Valentijn like this.
  4. Sasha

    Sasha Fine, thank you

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    @charles shepherd - is this as weird as it sounds? That NICE is doing me the tremendous charming favour of not minding what supplements I personally use? What possible business of NICE could it be what supplements I choose to use?
  5. Valentijn

    Valentijn Activity Level: 3

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    So basically doctors should not test for B12 levels (according to NICE's "Do Not Do" list for ME/CFS) or prescribe B12. But B12 can be medically helpful, in which case patients should pay for it themselves and use it without the help or guidance of a doctor.

    And they wonder why ME/CFS patients end up trying so many random things on their own :rolleyes:
    Cheshire, Bob, Sidereal and 2 others like this.
  6. Firestormm

    Firestormm Guest

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    I wonder if the comments and Dr Shepherd's note about this B12 stuff shouldn't be on the related thread and not here? Only a suggestion but it might take away from the importance of what Baker was saying about the actual Guideline? Dunno.
  7. taniaaust1

    taniaaust1 Senior Member

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    umm that is quite convenient for them isnt it.
    Valentijn likes this.
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Are they going to ban all supplements from shopping centres too because that would be self medicated and encouraging false illness beliefs. While they are at it ban fruit and vegetables.

    It won't happen as the shopping Centre chains have more power than the government.
  9. Sean

    Sean Senior Member

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    I can feel a round of bolshieness coming on.

    Might be time for patients to start actively, and very publicly, flatly refusing to be used for dodgy research.

    Just say no.

    What have we got to lose?
    Valentijn likes this.
  10. ukxmrv

    ukxmrv Senior Member

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    I wonder what implications this admission will have on the Judicial Review that failed in the High Court. Thinking along the lines that making this admission now may contradict their bullish attitude and comments at that time.
    Purple and Valentijn like this.
  11. Esther12

    Esther12 Senior Member

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    Hmmm...

    Not sure if someone being somewhat open about the problems here is a good sign, or just reflects the fact that he knows that acknowledging these problems doesn't really help us, and saves him the trouble of having to go on the record defending the indefensible.

    It's a bit worrying that my first response was to be pretty pleased when someone with power said: 'Things suck and there's nothing you can do about it.'
    Dolphin, Sasha and Valentijn like this.
  12. user9876

    user9876 Senior Member

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    I see it as positive that they are acknowledging issues it suggests that the psych community is perhaps losing its blanket hold. Although I wonder if they will now start privately lobbying him.
    Firestormm and Valentijn like this.

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