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Dr Sarah Myhill interview

Messages
4
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
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I 100% agree with you on the NICE guidelines.
Thank you for the statistics. I keep toying with the idea of making my own website when I feel well enough and those statistics you give will be great to put in it.

The thing with Dr Myhill, it wasn't just that "her diets didn't work" for me.
It was that the diets along with the the rest of her protocol made me lose a ton of weight, got me into malnutrition. Then when I tried to eat again I had horrendous pain that wasn't wasn't there before. At the same time as the diet I was given EPD injections, painful magnesium and B12 injections and supplements to make up for the stuff that was missing in the diet.

The diet she put me on was:
no cereal of any kind - including quinoa or rice or alternatives,
no sugars of any kind including natural things like honey or unrefined brown sugar
no nightshade vegetables,
no yeasts,
no dairy of any kind,
no poulty.
no soya products

There were a number of chemicals in the supplements she used which I reacted to, She used a lot of "biolab" supplements.

When I was getting worse she just said the 6 weeks on the diet isn't up yet and then when the 6 weeks had past she just said "you should be getting better now" and that was it.

I have never fully recovered digestive function to what it was before her protocol.
While I was there she told me that she used to put people on the "pear and lamb diet" which was even more extreme.
You are correct about GET and other "official" treatments being utterly worthless... beyond terrible in my view. But still that doesn't take away the fact that I suffered greatly on her then 1995 treatment.
I've heard she does the Paleo diet now which is a bit easier than what she was doing in 1995 when I saw her. Yet it still seems a bit too extreme to me. For example does she weigh the patients and make sure they take bloodtests during the treatment so that they don't lose too much weight?
While I believe that some M.E patients might be lactose or frucose intolerant, putting everyone on an extreme Paleo...or even more the more extreme diet like what I was on isn't a good idea.

You are right that I should have stopped her diet and treatment straight away as soon as I was feeling bad. But I was 19 years old at the time. I was pushed and encouraged by her and my parents to do the whole thing. Also the mainstream treatments of damaging exercise and lack of sympathy and knowlege from normal doctors at the time made her crazy treatment look great. There was no internet at the time and I was pretty naieve.

My complaint to the GMC didn't go through BTW. b/c too much time had passed before I was well enough to complain.

I still maintain that what she did to me was too extreme and damaged my health and that anyone who choses to visit her should be careful.

Rich's methylation treatment is a million times more gentle and harmless than what she gave me or is still doing.
I must rant here that I bitterly resent being the guinea pig for her formulation of current protocol.


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.