As you may be aware, NICE is reviewing its guideline for CFS/M.E. As part of this, they have asked patients to complete a survey on their experiences of cognitive behavioural therapy and graded exercise therapy to help inform their new guideline.
Action for M.E.’s Big Survey on living with M.E./CFS in the UK asks about our experiences with health, education, employment and welfare benefits. Our answers will influence their strategy and inform their work for the next five years. The deadline for completing the survey is Friday 2 August 2019. Go to the survey
It’s a long one covering the last six months – I had to take some time out from volunteering. This M.E. research round-up covers studies published up to 30 September 2018: Quality of sleep, Defining M.E., Autonomic nervous system abnormalities, Natural killer cells and the immune system, Diagnosing M.E./CFS, Impact of M.E. on mental health. […]
This M.E. research round-up covers studies published from 17 March 2018 to 16 May 2018: Standing unaided, Glucose and muscle cells, Unwanted effects of rituximab, Blood sample analysis. Read the research round-up
Activated patient, CCG, Care plan, Person-centred care, Reablement, Safeguarding, Self-management…there’s a lot of jargon in health and social care! This great A-to-Z from Think Local Act Personal is good to have handy: Care and Support Jargon Buster
NHS England are asking for the public’s views on having access to GP appointments online in the near future. Would they be helpful? Do you have any concerns about using them?
On May 12th every year since 1937, UK citizens have been contributing a diary to the Mass Observation Archive. This year there’s a special focus on people with M.E.Read More »
It’s M.E. awareness month, and we’ve been taking #ThisisME selfies describing how our M.E. affects us.
Taking part in this campaign and sharing other people’s #ThisisME selfies has made me reflect on how far I’ve come but there are so many more people still experiencing severe M.E., unable to do everyday things for themselves and being house- or bed-bound.Read More »