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I really, really dislike this article. It's definitely not the only one I've read in the MEA's magazine that keeps me from being a member (I was a member for 12 months some time ago and decided not to renew). I don't see why the MEA cannot have a set of guidelines which all their published...

I came across this guidance. It applies to England, but some of the principles contained in it may be useful in other countries: https://www.voiceability.org/uploads/Challenge_Guidance_-_Advice_for_Advocates.pdf Edit: This guidance also gives some advice on Independent Mental Health Adcocacy...

I just thought it would be worth starting a thread for links to resources that can be used in supporting individuals with personal or professional advocacy (as opposed to general M.E. advocacy issues). This could apply to helping individuals obtain appropriate care, benefits, disability...

A more modern but counter example is the film industry's disturbing portrayals of 'Fabricated or Induced Illness' in a child. One film I can think of is 'The Sixth Sense'. I'm not a parent of a child with M.E., so I have no idea if this sort of media promotion is making things worse for them...

Ha ha...when I was reading it I thought, 'Well that's me f***ed!

Yes, what is needed is the appropriate social care assessment and the necessary practical support put in place for the person returning home. How can this 'trial' not end up being confounded by other projects that are increasingly being rolled out by various NHS trusts and local authorities...

They seem completely oblivious to the fact that we have a science curriculum in schools that is compulsory up to age 16 (in England, but devolved countries have a comparable one): https://www.gov.uk/government/publications/national-curriculum-in-england-science-programmes-of-study

From page 3 of the book:

I note the authors use the term 'fair test'. This term was part of the UK National Curriculum in maths and science when I was working in schools 10-15 years ago as a Learning Coach/Learning Support Assistant. It used to really grate on me as it's so unscientific. I emailed my daughter (a...

I was thinking more for creating a public record for members of the public and more neutral journalists, rather than changing these individuals' views. I agree that it's a waste of energy trying to engage in critical debate with certain people, especially those who as you have said, are happy to...

I no longer work with the NIHR as it became evident to me that much (if not all) of the 'patient involvement' was a tick-box and somewhat patronising exercise.

But it may still be useful to quote their words back to them as a public record, even if only to highlight and make their hypocrisy evident.

I have only just realised (via Google) that Iain Chalmers is one of the founders of Cochrane! My copy was signed by him with a thank you message. https://en.wikipedia.org/wiki/Iain_Chalmers

I was recently sent a free book from NIHR as a 'thank you' for the past work I had done for them as a patient rep. The book is entitled, 'Testing Treatments - Better Research for Better Healthcare' and is authored by Imogen Evans, Hazel Thornton, Iain Chalmers and Paul Glazziou. I haven't had...

The article begins: Is this a fair and accurate comparison? What image is this comparison designed to invoke in the minds of the article's readers? Compare what Charles Shepherd says about there only ever being a tiny number of individuals accused of harrassment with the following Guardian...

A long, but very enlightening read on the subject of healthcare learning from the aviation industry's approach to improving safety: https://www.newstatesman.com/2014/05/how-mistakes-can-save-lives

The lead author's work (Hyland) has been discussed on this thread: https://www.s4me.info/threads/body-reprogramming-patient-guide-for-recovery-using-the-hyland-model.8037/#post-142011

But it doesn't have a singing mouse like my hot water bottle cover!

Have you tried Sloggi? https://www.justsloggi.co.uk/sloggi-maxi-ladies The only brand that work for me (although I like the 'midi' versions). Also, they put the label on the outside with a single stitch so it can simply be unpicked, so they're great for those with skin sensitivities.

He's just using old school 'divide and conquer' tactics by implying there is the majority of nice, reasonable patients who want his help verses a minority of unreasonable, highly vocal and contentious ones, hell bent on stopping him providing his benevolent service - thereby damaging the...