1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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New service for ME is ‘godsend’ (News Article)

Discussion in 'General ME/CFS News' started by Kina, Oct 24, 2013.

  1. Kina

    Kina Moderation Team Lead

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    Ontario, Canada

    OH arghhhhhhhhhhhhhhhhh!
  2. WillowJ

    WillowJ Senior Member

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    I agree with your assessment!
  3. SOC

    SOC Moderator and Senior Member

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    Sheesh! :rolleyes:
  4. Snowdrop

    Snowdrop Senior Member

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    Yes, arrrrgh. It provides good reason to never press like until I've read to the last sentence.
    Bob and peggy-sue like this.
  5. minkeygirl

    minkeygirl Is Jim Jones alive and well on PR?

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    I'm dumbfounded that idiots still think that is even a viable treatment.

    ARGHGHGHGHGHGH!!
    svetoslav80 and peggy-sue like this.
  6. Desdinova

    Desdinova Senior Member

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    Well we did point out how those with mobility and transportation issues couldn't get treatment or participate in study programs. But still I digress ARGHHHHHHHHHHHHHHHHHHHHHHHHHHhhhhhhhhhhhhhhhh..........
    peggy-sue and WillowJ like this.
  7. Firestormm

    Firestormm Guest

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    Good news for those finding the service useful. Bad news for those who are not and from whom we hear nothing but only presume exist.
    Valentijn likes this.
  8. alex3619

    alex3619 Senior Member

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    This is the honeymoon period. They have been told they can be helped, but treatment has barely begun. They have been convinced its all worth it. Many of them will not have ME. Many will have PVFS and get better within six months to one year, sometimes two years. Those who recover will be spun as miracle cures for the treatment. Those who do not will be dropped and abandoned.

    Does anyone recall my parable on how quackery works?
    SOC, svetoslav80, peggy-sue and 2 others like this.
  9. aimossy

    aimossy Senior Member

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    what is PVFS?
  10. Snow Leopard

    Snow Leopard Senior Member

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    Post Viral Fatigue Syndrome
  11. aimossy

    aimossy Senior Member

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    urrrgh im an egg that's actually obvious now.ha
    thanks snow!
  12. alex3619

    alex3619 Senior Member

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    PVFS = Post viral fatigue syndrome, such as occurs in a normal case of Mono or a bad flu. A percentage go on to develop something like ME or something similar, but we still need more research on this despite the Dubbo studies. Post viral fatigue can last six months, sometimes two years, and rarely for five years. It resolves on its own. ME patients possibly get a touch of it when they get a flu or something and then recover some weeks to months later, but this is not certain. There is too much we do not know.

    There is another way to look at this though. ME may just be a more severe form of PVFS. We don't know the exact nature of ME versus PVFS. We don't even understand the full mechanisms involved in garden variety post viral fatigue.

    PS What Snow Leopard said. ;)
    peggy-sue and aimossy like this.
  13. Valentijn

    Valentijn Activity Level: 3

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    The quackery usually does seem good at first - patients are reacting positively to someone who understands their symptoms and disability. The practitioners are also validating the experiences of the patients, as well as offering optimism.

    But then the bullshiting and torture and brainwashing start. And at some point the patient figures out that, although the practitioners do know about the symptoms, they think they are the result of psychological disorders and/or deconditioning.
    SOC and aimossy like this.
  14. Esther12

    Esther12 Senior Member

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    BPS lot have been talking about getting the anecdotes they want into the media. If they're promoting their services, they get to choose which patient experiences are heard about.
    Snow Leopard, peggy-sue and Valentijn like this.
  15. alex3619

    alex3619 Senior Member

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    That is something we can change. It just takes some organizing, and contacts in the local CFS community.
    Valentijn and rosie26 like this.

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