Enhance Advocacy For People with ME/CFS in the UK - Take the Action for ME survey


Founder of Health Rising and Phoenix Rising
Staff member
Dear all,

I'm doing a piece of research for Action for ME to look into the difficulties people with ME/CFS have with getting the healthcare, benefits and social care support they are entitled to. I would be ever so grateful if you could take a few minutes to answer my survey questions.https://www.surveymonkey.com/s/careandsupportsurvey

The purpose of the research is to test the level of need for advocacy for people with ME/CFS. An advocate is someone who speaks up on your behalf to help you express your needs and wishes and secure your rights. Action for ME is designing a national advocacy to help those who have difficulty obtaining care and support and who have no one to speak up on their behalf.

The survey is for everyone with ME/CFS, whether or not you've used an advocate or made any claim for social care or benefits.

I'm very grateful to everyone who got in touch with their experiences already. Please do take this survey as well because we need as big a response as possible to persuade funders of this cause.

Catherine Hale

Following our Severe M.E. Symposium in November last year, Action for M.E. is exploring how we might set up an advocacy service to help people with M.E. access health, social care, welfare and support services.

This survey is for anyone with M.E./CFS. You don’t have to have used any services, or had an advocate in past to answer the questions. Your experiences will help us build a picture of the need for advocacy.

Independent advocacy is about giving people as much control as possible in their lives. It helps people understand information, say what they want and what they need and get the services they need .

This survey is quite long, so please pace yourself and take your time. If you would like to ask a carer, friend or family member to help you complete it, please do so. There is a progress bar at the top so you can see how much you have done.

You can take a break from this survey at any point and it will automatically return to where you left off. If you are unable to finish it, or would only like to fill in certain sections, that’s absolutely fine – any information you can share with us is valuable.

The deadline for taking part is Friday 12 June 2015.

Thank you for your help.


Active Member
The question about 'Would an advocate have helped' was hard to answer, because I think I've got everything that is going by myself, painful as it was. The problem is, there's precious little going in the UK...

Also, it asks how I've been for the last 3 months - depending on what the intention behind that question is, my answer may be misleading. I am 'mild' according to your description, but only because I do minute-by-minute self-care. It could easily slip into moderate or severe.

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