Showing posts from November, 2020

How Many?

(This very painful poem by Linda is from my new book;"More Notes For Carers" which is out soon.) How many days, weeks, months, years, has the sun, shining outside my window called to me to come out and play, Yet I have been unable to comply? How many times has the world passed me by, the simplest of things being impossible to achieve? How many years have I lain in bed unable to move, speak or get even the simplest most basic need met? How long have I sat in impossibly twisted painful postures paralysed stiffly, feet glued to the floor too heavy to move? How many, many thoughts have been lost, barred access to, how many words misspoken or phrases cut short or twisted into unrecognisable form, Too many to count, too many to tell, too many to remember? How much pain can one body take, burning, throbbing, itching, screaming, continuously, With no let up, no respite, no remission, no effective treatment? How much harm has been done to me by ordinary things like insignificant nois

Initial Impressions of the Draft Nice Guideline

Thoughts From a Very Quick Reading On the surface it feels refreshingly different, but there are huge concerns. Without any clear definition of what NICE means by”ME/CFS”,the Guidance can only be generalised energy management, which is exactly what, on quick reading, it seems to be. The Fatigue Centres, far from being dismantled, appear to have been accorded expert status, from an initial read. This is a huge concern. Without defining what Severe and Very Severe ME actually are and not including a full symptom experience, we fear people will still not be understood and will still be at risk. If you do not acknowledge the real symptoms of the most ill, you are never going to get the Guideline right for them. On first reading, the Guideline does not give us much confidence that it has any idea about Very Severe ME or how to approach someone, or what they need or how to provide it. How, for example, can people with Very Severe ME realistically do CBT with the level of Cognitive Dysfunc