The NICE guidelines are utterly worthless. Don't take my word for it. Read the actual figures.
GET comes out as THE most damaging therapy to those with CFS. Yet it is one of the main tools used for those with CFS. What a spectacular failure. They would simply be better off doing nothing.
DrMyhill might not have all the answers, clearly its obvious she doesn't. .....
.....If her diets don't work for you, guess what, you can stop them and continue eating your usual garbage.
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.