Our 52-page quarterly ME Essential has been posted out to members – with a picture of Nicola Engler on the front cover and a wide range of topics and features inside.
Lots of members go straight to the medical stories to find out if there’s anything we can tell them them which will help them manage the illness, its symptoms or the effects it has on their lives.
In this issue – unusually for the ME Association –we’ve deliberately chosen a dual approach to medical and complementary approaches.
Our medical adviser, Dr Charles Shepherd, provides his usual analysis of evidence-based medical and research topics while Ba Stafford and Wendy Swindlehurst take a cherry-picking, lighter approach with the first of two articles entitled “Does a little bit of what you fancy do your ME any good?”
Dr Shepherd’s main article – his usual keynote ‘Management File’ – discusses what we know so far about the XMRV retrovirus and murine leukaemia viruses. He’s followed the great debate sparked by the Whittemore Peterson Institute study in the Science research journal in October 2009 and knows every twist and turn so far.
In his ‘Ask the Doctor’ notes, another regular feature of ME Essential, he covers the following topics (and not all of them are medical):
How best to handle an appeal for Employment and Support Allowance
What to do if you are faced with an inordinately long waiting time for an appointment at your nearest NHS specialist clinic for ME/CFS, all supposing there actually is one in your area
Throat and Voice Symptoms
Wheat Intolerance, once coeliac disease has been ruled out of your illness profile
Industrial Injury Benefit
Why does the ME Association have to charge for its booklets and leaflets
The Creatine kinase blood test.
At the other end of the spectrum, Ba Stafford and Wendy Swindlehurst take up almost five pages for a light-hearted gallop through some of the approaches that people said helped them (or didn’t help them) in our huge Illness Management Survey a couple of years ago.
Ba and Wendy discuss what they found out about Agnus Castus, the Alexander Technique, Aloe Vera, Alpha Lipoic Acid, Aurofix (eh!), Bach Flower Remedies, the Bowen Technique, Buteyko Breathing Technique, Caprylic Acid, Chelation therapy (this stumped them!), Chi Kung exercise, Coenzyme Q10, Cold baths and showers, Colonic irrigation, Cranio sacral therapy, Crystal therapy, Echinacea, Extra Sensory Perception, Gingko biloba, Ginger, Grapefruit Seed Extract, Green barley grass, Guaifenisin, HTP, Lymphatic drainage massage and Magnetic therapy.
In the news section, we cover the UK ban on people with ME/CFS donating blood from November 1 and question the reasons behind this. There’s a word-for-word account of Dr Shepherd’s interview by Evan Davies on BBC Radio’s news agenda-setting Today programme.
Our cover girl Nicola Engler – actually a remarkably composed 26-year-old young lady –describes the art club she’s running from home.
We have some very readable articles among the general features:
Retired GP Dr Keith Dunbar discusses how your GP has shrunk in stature “from mini-god to mere mortal’ over the last few years and offers some sound advice on what to do if you need to change your family doctor.
Journalist Paul Groves opens up another chapter of his marriage to Rachel in his regular Carers column. This time, he writes about helping Rachel become more independent by exercising less of a grip over her access to family and friends and describes a great day they both had at a family wedding.
And fundraising has really got exciting at the ME Association – which is why we have given over almost seven pages to it in this issue. Latest highlights include:
Ed Stafford becomes the first man ever to walk the whole length of the River Amazon, and raise money for the MEA’s tissue bank appeal in the process. His friend, Mark Barrowcliffe, discusses Ed’s rise to fame why he hung in so tenaciously. It turns out he didn’t want to look silly by giving up when things really got rough,
Those magnificent men in their old tractors and barrows – the Mid Ulster Vintage Vehicles Club – raised many thousands of pounds for our research fund in 20120. We tell the story and pay tribute, in particular, to the remarkable men (and women) of the O’Neill family who made it all possible.
Kit Arnold’s book and CD sale at a Devon tourist trap.
The annual Worcester Zombie Walk when Tracey and Andy Monaghan renewed their wedding vows. Andy was told “You may now eat the bride!” Absolute nuts of an event and arguably in the worst possible taste, but it runs successfully every year.
The annual pedigree and companion dog show at Denholme Park, Bradford, which Elizabeth Evans has run since the ME Association was founded. It has raised thousands of pounds for our work.
Warburtons Bakery in Bristol used their loaf and raised money for us during a bakery products competition.
Alex Hodbod, who’s never done anything as ambitious in his sporting life, took part in the Kent Windfarmer Triathlon.
Martin Stevens, Scott Biggs and a friend paddled their kayaks 50-miles along the upper reaches of the River Severn to follow up Hayley Steven’s successful cuddly toy stall at the Warton Carnival.
No Letters to the Editor in this issue – where were you our letter writers? – but we published two great poems by Leanne Hunter and Peter McCourt,who have minds that soar to the sky and hopes that at the moment are bedbound by their ME.
ME Essential is posted out quarterly to ME Association members. Details of how to join can be found by clicking on here.
Details of how to contact our new fundraiser Maya Thomas can be found by clicking here and scrolling down the page. Please contact her if you would like to raise some money for us.