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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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Dr Sarah Myhill interview

Discussion in 'General ME/CFS News' started by justy, Jul 20, 2012.

  1. teefy

    teefy

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    Hi Redrachel

    I've had ME/CFS for 14 years and have been persistently affected by gastric problems, primarily what could be described as IBS. I think that Sarah Myhill's (and other's) hypothosis that so many of the symptoms overall can be explained by mitochondrial failure is absolutely robust, but I am less convinced by her dietary recommendations, and what you have described from your experience as her patient seems really extreme.

    Having just watched the video, and being familiar with her website, I would certainly agree with: i). low GI and elimination/reduction of refined carbs, and ii). elimination/reduction of fermentables like lactose, gluten etc. However, I think there's more dogma than substance with the Stone Age Diet concept, and the more radical version which you described I can imagine might really be more harmful than good. Poultry, soya and some grains are actually included in her current recommendations and I don't know why she would recommend avoiding them, it's inconsistent.

    The reasons why I find the Stone Age diet problematic is that firstly I don't believe the standard food pyramid is nutritionally wrong, and secondly there is an inadequate amount of insoluble fibre. Further, getting your fibre primarily from berries, leafy greens and pulses rather than grains will also expose you to lots of fermentables like the fructose, raffinose and galactans in those foods - really bad if you have intestinal bacterial overgrowth.

    I would strongly challenge the view that grains and dairy foods are necessarily bad: it's the gluten, lactose and high GI content and not the fact these food types are the creation of human agriculture that is bad. The insoluble fibre found in grains helps to cleanse the guts, and there are low GI products like Cambrian wild rice, brown basmati rice, and multi-grain gluten free breads (for instance) which are both highly nutritious and fulfil fibre needs very well. With dairy it's the lactose and not their being dairy per se which causes problems, and whey products and some cheeses have negligible lactose, and several benefits.

    I love Sarah Myhill, I really do, her work has helped me probably more than anyone else, and God knows I have had little help from the "treatments" I've received elsewhere, so I'm a bit taken aback by hearing of a former patient having had a bad experience. However, as I said I think her ideas on diet are derived more from dogma than factual substance, and the information on her website in this regard would benefit from being amended, it's far from optimal.

    I am only able to keep my gut symptoms at bay by:
    1. Non-FODMAPs diet - or very limited at least. Lactose, gluten and fructose are out, but also fermentables like raffinose and galactans found in many vegetables and pulses.
    2. Plenty of insoluble fibre - from grain sources.
    3. Regular amoxycilin.

    Regards
     
    justy likes this.
  2. taniaaust1

    taniaaust1

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    Its sad you had such a bad experience. Sounds like the main issue is she wasnt "listening" when you told her you werent doing so well on her diet. She should of listened better and acted on that eg changed things

    I can thou understand her putting everyone on her diet for 6 weeks to see if it helps or not. England such as it is as far as CFS goes.. I guess she wouldnt be able to be getting her patients tested in lots of areas just to try to find out what kind of diet individuals would do best on eg 2hr GGT test with insulin, fructose intollerence breath test, food intollerence testing etc.. so it can only come down to trial and error... fortunately with many of the patients finding it quite helpful.

    For myself.. advice on her site.. eg B12 injections was the first ME breakthrou I had with my condition after more then 10 years of trialing things which didnt help. Also a very strict diet (similar to hers in some way eg I cant eat carb things ..no cereals, rice etc, no sugar of any kind (includes no honey)... hardly no fruit.. at one point no dairy)... was another thing which really helped in my case. Im so so glad I now have a diet I do better on (Its boosted my health) thou it is greatly limited.

    I think everyone just needs to "cautiously" trial different things..and only you yourself can know if something is helping or not.
     
    redrachel76 likes this.
  3. taniaaust1

    taniaaust1

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    Maybe if chickens in England are being fed hormones?.. may make some say to avoid chicken.
     
  4. Sporty

    Sporty Senior Member

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    Essex, UK
    Hi, how are you Justy? :0)
     
  5. justy

    justy Senior Member

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    Hi @Sporty - still hangin'around here...

    How are you?
     

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