Monday, 6 March 2017

Our latest ME Essential magazine, and a little toot on our own trumpet! | 6 March 2017

Untitled-4 copy

Our Spring 2017 magazine, 44 pages in all, contains stunning features about some of the research being supported by our dedicated Ramsay Research Fund.

Our new writer Sarah Staples gets to the heart of the matter as she interviews Dr Karl Morten about his plans to turn Oxford University into a global centre for biomedical research into ME/CFS.

With a background in popular journalism, she makes light, readable work of the complex science with which he’s involved. Move over Tom Whipple, science editor at The Times: there’s a new kid on the block!

We cruised to success with our ‘Make Me Better!’ Christmas Appeal – another feather in the cap for MEA fundraising manager Helen Hyland.

In less than a month generous donations from almost 430 supporters saw the appeal zoom past its £50,000 target. It ended up at a fair scrape over £60,000. We tell the story of how we’ve achieved an ambition to back the new types of science.


THIS ONE’S GOT A GREAT BIG PRICE TAG!

MEA medical adviser Dr Charles Shepherd addresses a red hot topic in ME/CFS research – the MEGA Project, which has a great big price tag. It has a brand-new Patient Advisory Group, several members of which have severe ME, and he thinks this will help keep things focused on what’s important to people with the illness.

There’s an upbeat end-of-the-year report from the UK ME/CFS Biobank, which is now wholly MEA-funded.

But in ME/CFS research not all is plain sailing. It would be wrong to pretend otherwise. Editor Tony Britton sat up with a jolt when he analysed a recent Freedom of Information Act request and found that NICE – Britain’s most prolific publisher of clinical guidelines – takes a dim view of some decent US research into ME/CFS when recommending what’s best for British patients.

On the illness management front, Dr Shepherd turns in his usual full quota of informative articles.

His latest ‘Management File’ looks at 14 alternative and complementary approaches – from acupuncture to yoga. As you would expect, he’s quick to sort out the quacks from the honest brokers in the hope that people won’t waste money on stuff that just won’t work.


LOADS TO READ IN THE QUESTIONS & ANSWERS SECTION

And in his regular Ask the Doctor section, he discusses GP refusals to refer their patients to hospital-based specialist services, heel pain and, separately, joint pain, hydrotherapy, the meaning for ‘neuroinflammation” in relation to ME/CFS, and whether supplements are just money down the drain.

News stories included are the MEA’s decision to pay US$2,000 for the independent ranalysis paper of the PACE Trial to be made open access and the latest about Dr Paul Worthley, formerly of the Burrswood Hospital in Kent.

And, of course, the report of our chairman Neil Riley to the Annual General Meeting gets good coverage in which he recaps on the essential values that all MEA trustees hold dear about the organisation.. At heart, he says, “our illness has been traced wrongly by many in the medical profession. We deserve much better. There ME Association is here to ensure that occurs.”

The magazine wraps up with decent letters pages, a sprinkling of fundraising stories, more news and an interview with the 71-year-old who still wants to climb every mountain in Wales over 2,000ft to raise money for us. Good for Andy Beaumont. He’s a fab supporter!


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