1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Hillary Johnson on CDC's Reeves & XMRV findings

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by mezombie, Oct 25, 2009.

  1. IamME

    IamME Too sick for an identity

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    http://www.prohealth.com/fibromyalgia/library/showarticle.cfm?id=3942&t=CFIDS_FM

    "I strongly encourage low level interval aerobic activity (that is, repetitions consisting of 3-5 minutes of exertion followed by 5 minutes of rest). Even the sickest patients can tolerate this low level of activity without triggering a flare. [LOL really] Over time the exercise period may be increased while the 5 minute rest period is maintained. ... and maintaining low level aerobic activities is the very most important treatment"

    People have to go quite far for him to disagree:

    http://www.prohealth.com/library/bulletinarticle.cfm?ID=5931


    http://aboutmecfs.org/Trt/TrtExercise.aspx

    "The key to a successful exercise program ... ME/CFS patients that carefully manage their exercise program can increase their stamina and reduce their pain. ... researchers and physicians are devising ways many CFS patients can glean benefits from exercise while sidestepping its costs."

    [ref to Bateman and Van Ness who are of a like mind]

    Pacing is nothing to do with an "exercise program" and five minutes of rest/exertion/rest/exertion sounds like a "torture therapy". (I'm assuming this isn't five minutes of lying down using an onscreen keyboard.)

    If someone is suffering from "doing too little", whatever they have they almost certainly don't have M.E. as people with ME are neither deluded nor lazy and I''ve never known anyone who was "doing too little".
     
  2. IamME

    IamME Too sick for an identity

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    People do as much as they can, or have to, regardless of their severity. Why claim otherwise?

    The suggestion that pain etc is somehow a product of inactivity, o worsened by inactivity is peurile within the context of this disease. All the evidence is that pain and other symptoms are exacerbated by exertion and to some degree or other releived by rest (unlike the official CFS!). To suggest otherwise is to agree with the psychs who time and again insist CFS "is no exception" to their bog standard get-fit-feel-better nonsense. And Lapp et al seem to forget that there is no official or widespread medication or care guidelines for ME/CFIDS so we have a further incomparability to just about any other disease where "gentle" exercise is recommended.
     

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