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
In preparation for a talk I gave about what it’s like living with pain, I asked a few questions on my blog to see what other people experience. Here’s a round-up of the answers people gave.
Thank you to all those who shared their experiences with me. 32 people took part and I’m grateful for the time and energy you spent.Read More »
In my talk Living With Pain on 7th February, I referred to several studies and other resources. Here are links to these and some additional ones on living with pain and hidden chronic illness, and improving our care. Read More »
Living with a long term condition affects every minute of the day, every activity, and they require so much effort and planning to manage. A study on this came up with a marvellous infographic – a must see for health professionals to understand this burden.Read More »
On Thursday 30th of November I will be hosting a webinar for health professionals on behalf of Action for M.E. and I’d like you to get involved.
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This M.E. research round-up covers studies published up to 16 October 2017: Defining M.E./CFS, Patient surveys after using CBT, GET and pacing, Brain activity in adolescents with CFS, Recovery in M.E. and CFS. Read the research round-up
me + my medicines is a new communications charter which aims to improve the way we talk about medicines. The charter will be launched at a free event on Thursday 12th October in Leeds, and patients, carers and health professionals are invited to attend.Read More »
This M.E. research round-up covers studies published up to 16 August 2017: The UK M.E. biobank, Searching for ways to improve diagnosis, Looking at sleep problems, Primer for health professionals on M.E./CFS in children, Impact of UK specialist CFS/M.E. services. Read the research round-up
This M.E. research round-up covers studies published up to 16 June 2017: The genetics of fatigue, Sleep patterns in teenagers with CFS, Sub-groups by comorbidities, Gut bacteria and irritable bowel syndrome in M.E./CFS, Similarities with other neurological illness, Experiences of healthcare: two studies. Read the research round-up
How can we become more empowered, and what do health professionals need to know to enable this?Read More »