The latest issue of the ME Association’s quarterly magazine, ME Essential, is landing on members’ doormats this week with an extra heavy thump.
This is because it contains a 24-page printed version of the MEA’s online questionnaire – which is rapidly turning into the biggest-ever survey into what illness management measures work best for people with ME/CFS, those that don’t and the ones that are less successful.
“Online, the survey has been started by 2,400 people so far and it’s got another month to run”, said the ME Association.
“It’s already yielding some fascinating information – including the most up-to-date picture anywhere of what sufferers really think about officially-approved but controversial approaches like Cognitive Behaviour Therapy and Graded Exercise.
“Not only that, but we’re picking up terrific information about the success or otherwise of the use of a number of drugs, and a whole range of complementary and alternative treatments – including approaches like Reverse Therapy and the Lightning Process.
“To make sure that all MEA members have a chance to get their views across, particularly those who cannot use the internet, we’re inviting them to complete our highly detailed questionnaire and get it back to us by 31 August.”
Those who can use the internet, but haven’t yet filled in the form, are being reminded that the questionnaire is still available at the MEA website. It doesn’t have to be completed in one go but can be saved and returned to later simply by clicking on the ‘How do you cope?’ box on the website home page.
A REPORT WITH RECOMMENDATIONS
The ME Association said: “Our aim is to produce a fully-informed report on illness management measures which work in the best interests of people with ME/CFS and their carers, and get these views across to the medical establishment, with recommendations for action.”
The main magazine opens with a look at a stunning advertising campaign which blazed a trail for the first-ever ME Awareness Week in Malta – a simple approach, carried out with style and panache, which got islanders and the rest of the ME world looking.
And ME Essential is packed as usual with news and views – including a report of the court hearing which paved the way for a judicial review into how the National Institute for Health and Clinical produced its Guideline into ME/CFS in August 2007. We dip into the last meeting of the All-Party Group at Westminster which heard harrowing accounts of how children with ME are being mistreated by care proceedings.
There is a report from the Invest in ME international conference in London which tried to sort out the medical muddle of ME/CFS by teasing out its confusing sub-types. And our medical adviser, Dr Charles Shepherd, reviews Professor Peter White’s presentation at a Royal Society of Medicine conference on CFS. They clearly didn’t see eye-to-eye!
GIVE US SUNSHINE – BUT TAKE CARE
Dr Shepherd makes out a case for taking a closer interest in the absence of the “sunshine vitamin” – Vitamin D – in the development of ME/CFS. And we look at how carers – many of whom are as hard up as the people they are looking after – might be able to claim a valuable benefit.
Other medical topics include melatonin; ribose energy supplement; Can I catch ME?; Is the diagnosis correct? and Why won't my doctor prescribe this new treatment?
Readers’ letters, news from our growing band of fabulous fundraisers, our own MEA happenings, adverts… yes, they’re all there. And the package landing heavily on doormats this week also contains our Annual Prize Draw tickets and a new printer cartridge and mobile phone recycling envelope.