ME Essential, the quarterly magazine of The ME Association, is now out. At 44 pages, it’s our biggest issue in years.
The magazine contains information on how we hope to make the most of the main findings of the Gibson Inquiry Report into the state of ME research in the UK and the latest state of play in the fight to persuade NICE to improve its dreadful clinical practice guidance for ME/CFS.
But one of our main campaign trails has gone cold – thanks to the dead hand of bureaucracy at the Department for Work and Pensions.
The DWP has ruled out any further discussion over its ME/CFS medical guideline for decision-makers responding to claims for Disability Living Allowance and Carers Allowance. So, for the time being, it looks as though we are stuck with Version Nine.
The ME Association is cementing its growing relationship with The Young ME Sufferers Trust by publishing a major article by their executive drector Jane Colby. In “Schools swept by ME plague’, Jane reflects on a major headline 10 years ago which changed the way people thought about ME in children and young people.
And Jane has also written a leaflet on “ME, Children and Young People” which is now available by using our new four-page pullout Order Form in the centre pages, or at our website https://meassociation.org.uk
In January, we said a sad farewell to MEA trustee Angie Flack, who died after a six-months-battle against a highly aggressive brain tumour. In this issue, we explain why Angie means so much to The ME Association today and, of course, we shall never see her like again. We shall miss her.
MEA medical adviser Dr Charles Shepherd reviews the evidence for the use of Essential Fatty Acids in the treatment of ME/CFS symptoms – concluding that things like eicosapentaenoic acid (EPA), fish oil and Evening Primrose Oil supplements appear safe and generally well tolerated.
A bumper Question and Answer session with Dr Shepherd on four “hot” topics: daytime sleepiness; creatine supplements; beta-blockers and the possible use of the Disability Discrimination Act in a negotiated return to work.
Professor John Gow returns to work on his vital MEA-funded genetic study at Glasgow Caledonian University. We chart the course of progress and tell readers how they can contribute to The MEA Ramsay Research Fund which helped to make it happen.
An important anti-viral study at Stanford University, California: Rebecca Anne Smith from The Times describes a small study on the use of valganciclovir (Valcyte) with people with ME which holds out some hope for future treatment.
Nutritionist Sue Luscombe discusses those end-of–2006 headlines which suggested that eating dark chocolate might make people with ME feel better. It might have been a yummy morsel of a research study, but was ME ever included in the wording on the wrapper?
Store worker wins £700,000 payout.
MEA launches new website at the same address: www.meassociation.org.uk
The Queen honours Dorset Group president
Carlisle group launched with £40,000 grant
THE MEA STORY SO FAR
Our chairman Neil Riley reports on his first full year in office, and there’s a range of stories from our last Board of Trustees’ meeting, an Extraordinary General Meeting to tweak our governing Memorandum and Articles of Association and our Annual General Meeting.
Treasurer Ewan Dale reports how, although not flush with funds, financially we remain on an even keel. And we were delighted to welcome our patron, Lady Hagart-Alexander, and our former chairman John Brodrick, who both joined us for our EGM and AGM in Bicester.
NEW MEA ORDER FORM
A four-page pullout Order Form is included in the middle of ME Essential, packed with items of literature.
New leaflets are:
- Dr Shepherd’s management file on Essential Fatty Acids,
- Jane Colby’s leaflet on “ME, Children and ME”,
- Dr Ho-Yen’s article on the internet myths that surround Lyme Disease,
- “Healthy eating and ME/CFS”, by senior dietitian Rhona Wilson who has worked on an MEA-funded study, and
- a new ME Connect leaflet called “Caring for a person with ME”, prepared with the help of the Princess Royal Trust for Carers, which runs 100 carers centres throughout the UK.
Other new items include:
- the transcript of our medical meeting at Chester last year (speakers: Dr William Weir and Dr Charles Shepherd), and
- the Department for Work and Pensions’ controversial medical guidance for ME/CFS, together with a copy of the considered response from a group of leading charities, including The ME Association.
For the moment, we shan’t be sending out copies of the very last item on the Order Form – the conclusions of the Gibson Inquiry Report into the state of ME research in the UK, together with a proposed Early Day Motion (EDM) to be signed by MPs and a template letter to be sent to MPs. This is because Dr Ian Gibson MP will not launching the EDM while there is a very real prospect of a counter-campaign being mounted against it by an ME activist faction. This news arrived after ME Essential had been sent to the printer.
Ba Stafford discusses Alex Barton’s book “Recovery from CFS: 50 personal stories” and “Toxic Childhood – how the modern world is damaging our children and what can we do about it?” by Sue Palmer. Tony Britton reviews Dr Darrel Ho-Yen’s paperback “Ticks: your pets, your family & you”.
- Severe sufferer Margaret Tracer writes about the postman’s visit, TV and radio and the simple pleasures that springtime brings.
- Tony Dolphin explains why he uprooted from wet and windy Lincolnshire and went to live in southern Spain.
- And ME Essential cover girl Kerri Simpson, better known to those who have bought her first book “Karma” as Holly A Harvey, explains why it took years to get it published.
- A birthday year good turn which became a massive knit-a-thon for Jan Scarrott.
- Scottish minister, the Rev Stephen Brown, who ditched his 50th birthday party in favour of staging a concert for The MEA.
- Our vice-chairman Rick Osman runs for us again in The London Marathon. You can find his online sponsor form at https://meassociation.workwithus.org/rickosman
- How a public vote propelled one of our top fundraisers last year, Katharine Vile, into the elite Triathlon Academy.
NICE compliment from Action for ME founder – plus hill-walking, light bulbs, computer rays, could ME be masking something else?, insomnia, Blue Badges, Esther Rantzen and the “Lightning Process”, and dark chocolate.