Minutes just released for the 15 July 2015 meeting of the cross-charity Forward-ME group record a discussion with Dr Martin McShane of NHS England on getting him to recommend that the NICE guideline on ME/CFS should be revised.
The guideline, which should be based on the best available scientific evidence, and which is followed by all NHS doctors, has been much criticised by charities for its weak diagnostic criteria and its recommendation of cognitive behavioural therapy and graded exercise therapy for ME/CFS.
The guideline has not been updated since 2007 and was put on the ‘static’ list in 2014, meaning that it would not be revisited for another five years.
At the meeting, Dr McShane said that the guidelines for many diseases were likely to go unreviewed because of resource pressures on NICE and that he could not tell NICE that ME/CFS should take priority over other conditions.
However, Dr Charles Shepherd of the ME Association pointed out that graded exercise therapy was causing harm to patients and that if a drug was causing harm, guidelines would be reviewed immediately.
He also said that Professor Mark Baker had sent a strong message that NICE would seriously consider changing the guidance on ME/CFS if NHS England advised them to.
Dr McShane agreed to write to NICE and to show Forward-ME a copy of his letter. Dr Shepherd handed Dr McShane a copy of the ME Association’s recent patient survey, which details the harms caused by graded exercise therapy and the failings of the current guideline.
Follow-up correspondence with NICE and NHS England is still in progress.
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September 28, 2023
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We are writing this article to share some exciting news! On Tuesday, September 26, ME advocates delivered copies of the book, The Puzzle Solver, by Tracie White with Ronald W. Davis, PhD, along with information about ME and Long Covid to Senators on the Hill. The books were donated by an individual living with severe ME/CFS in an effort to raise
3 thoughts on “Push to change ME/CFS NICE guideline”
Carnt live like this something needs to be done were dying just like any others suffering illness such as cancer heart decease etc etc x
It’s definitely time that organizations understand how dangerous these recommendations are! I like the comment from Dr Charles Shepherd “… graded exercise therapy was causing harm to patients and that if a drug was causing harm, guidelines would be reviewed immediately”.
It’s time for this dreaded illness to be taken seriously rather than something that happens simply because we aren’t thinking happy thoughts or that we’re “just tired”.
Me/cfs is not all in the head, I’ve had counselling, tried exsersize I found the more activities and daily chores I done I had no energy what so ever left not even to eat, I awake in the night and not had the strength to even pull the covers over me, why can’t ppl understand this is real and it effects physically all over your body and a whole list of different diagnosis, it’s never ending and hard to accept and live with as it is, we do have down days due to being not believe and he constant every day illnesses that occur, no one will ever understand unless they have it, I will explain, images our body’s is a charger we plug it in to recharge once it’s run out of power, one charged which can take days our body’s are still never functional to the point where we have full power,little by little we use his power to eat, drink, try to get dressed, wash, daily tasks are a burden and can be so hard to do without help of others but the more we do the more that charge goes quicker than healthier ppl, I am a person to believe in never giving 8nto it, I’ve paced and still it’s hard to live with, days and weeks you can be isolated as you have no energy to do shopping, socialise, outings, your home is your everything including your sofa and bed cos that’s where I spend most of my time, it’s not fun! I would give anything to get my life back I’m on all kinds of meds and nothing seems to help, it just eases symptoms a slight bit, living with this is so hard each day, every day is not the same , I wish ppl could understand it’s like toxic entering your body, you feel as though your guna die and yet no one seems to know how to treat it and all different name calling it, this was once called yuppy flu and nurses and patients went down with it only a few maybe got better but a lot didn’t, so why has our government not calling for the research to be done, this is not in the mind maybe government needs to spend a day with ppl that has it so server they are unable to get out of bed feed ect, I just wanna say it’s real look closer and spend time with ppl who have it and maybe government will see its not all in the head. I hope this has made ppl understand
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