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CFS/M.E. ~ A Guide to Wellness by John H. Wolfe

Discussion in 'General Treatment' started by John H Wolfe, Sep 10, 2012.

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Do you think the guide offers good advice, on balance?

  1. Yes

    3 vote(s)
    11.1%
  2. Didn't read it

    4 vote(s)
    14.8%
  3. No

    20 vote(s)
    74.1%
  1. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
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    Likes:
    3,355
    Cornwall, UK
    Re your reference: most of this refers to increasing fluids, not specifically water. It is also titled 'GENERAL INFORMATION BROCHURE ON ORTHOSTATIC INTOLERANCE AND ITS TREATMENT'. It appears to relate to NMH and classic POTS. I do not have these. Not all people with ME/CFS have. I have hypertension, and possibly the opposite postural changes to people with POTS, as I get tachycardia when I lie down rather than when I stand up.

    Also, it is advice from a clinic, not a scientific paper, and it does not have in-text references to scientific papers on which the advice is based, just a bibliography at the end from which it is impossible to ascertain which article/paper relates to which statement.

    Basing your own advice on someone else's unreferenced advice risks disseminating incorrect information, as well as a possible 'Chinese whispers' effect in which each person who repeats info gets something slightly wrong, and so on.

    I find it odd to take diverse bits of info from diverse sources, some being advice from other sources which do not show clearly their own evidence base, and some derived from scientific papers (yet even these have not been carefully analysed for rigour and credibility), then collate them together and put one's own name (or even more strangely, an assumed name) to the results.

    I consider that science-related advice, especially when people's health and welfare are at stake, should be based predominantly on original scientific papers which the writer has analysed and shown that s/he understands.
    Valentijn and aimossy like this.
  2. Snowdrop

    Snowdrop Senior Member

    Messages:
    359
    Likes:
    492
    Toronto
    Old post I know but I just wanted to say that the small gain I have made to my health from the lowest point is due in large part to the fact that I finally took the 'bold' step of staying in bed after waking in the morning.

    The 'natural' thing to do is to get up when one wakes in the morning no matter how unrefreshed and try to get on with the day and accomplish something of what needs doing (sporadically between resting on the couch). Instead, one day I just stayed in bed finally fell asleep again and discovered I had a better day. Now it's my routine.

    I wake constantly in the night and take a long time to fall asleep so that extra few hours has helped as I cannot nap during the day. Once I'm up my brain becomes too engaged I think.
    Valentijn likes this.
  3. John H Wolfe

    John H Wolfe Senior Member

    Messages:
    220
    Likes:
    36
    London
    I included 'fluids' and your warnings re: osmotic diuresis/polyuria in my protocol subsequent to your last response :)

    It's from Rowe's hospital, who deal with a great many ME/CFS patients. Almost 100% of PWME have demonstrable orthostatic intolerance of one form or another

    How curious! Have you had high blood pressure readings in all positions? (standing, seated, prostrate)

    I'm not sure any studies have attempted to examine this?

    At the very top of my protocol, you may not have noticed, it reads:

    The advice given in this guide is based upon:

    My understanding of the rudimentary underpinnings of general good health
    My understanding of the illness and its underlying causes
    The expertise of a number of specialists (both conventional and 'alternative')
    My personal experience with ME/CFS over more than a decade

    Individuals are at liberty to decide for themselves whether this an appropriate basis upon which to be giving advice, and I am afraid I am not going to deny visitors to my blog the many benefits that many of us enjoy from such carefully considered, altruistic endeavours simply because this or that person is not satisfied that component parts have yet been tested to destruction

    Again, a multi-source, multi-disciplinary, integrative approach may not suit everyone but there are many, such as I, who believe that this type of approach is the one most likely to bear the most fruit, given the complex, multi-systemic, nature of our illness

    Even if I had the time/energy to limit my protocol/advice to strictly scientific sources narrowing it thus would vastly decrease both its efficacy and its accessibility/resonance with those whom have already come to certain similar realisations/rules of thumb for themselves

    More critical evaluation would be great, but unfortunately I have bigger fish to fry right now, I am juggling an awful lot and my disease model is to my mind a lot more important in terms of the benefits it may bring to research/the community

    Not sure what’s wrong with putting my name, or my pseudonym to my protocol but if you have any constructive suggestions for a funkier name then feel free to share them :)

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