If you follow ME/CFS blogs, you have probably seen my name crop up in numerous comments. I have been accredited by the UKCP for over 20 years as a neurolinguistic psychotherapist, so I can claim to be able to tell the difference between ME/CFS, which I acquired in 1986 and a psychological complaint, which ME/CFS is not.
The title of my blog says it all: ME/CFS is made worse by exertion, and the only way we can hope to improve is to ‘lie down and fight’. Our whole culture is so locked into the idea of exercise as a cure-all, and the ability to throw ourselves about as a measure of both physical and mental health! It seems that even when we are very sick, no one, including ourself, fully realises that ME/CFS reverses all the rules.
I’ve written a book, telling you to claim your right to rest, which I really wish I could just hand to everyone who gets sick with this illness, because your doctor will tell you to exercise, which is about as helpful as telling someone with a nut allergy to go away and practice eating nuts. My book is called ‘A Beginners’s Guide to ME/CFS’, and I need some income from it, or I would give it away to anyone who wanted it. But all you need to know is in the product information on Amazon, so you could just read that and not bother getting the book. Or you could have a look at my short article, at http://www.nhsmanagers.net/guest-editorials/a-radical-care-pathway-for-mecfs (hope that works). The message is to fight for your right to conserve exertion enough to do the absolute basics and still allow your body the margin of energy it needs to figure out how to overcome this illness.
That’s all for now – hope if you have ME/CFS you will see me as an ally, and let me fight your corner – I’m quite a lot better now so I think that’s what I should be doing.