Dear Sir It was a bad day for children when ME got called by the barmy name ‘Chronic fatigue syndrome’. Some of our children can’t speak or swallow and have to be tube fed. That is so not ‘fatigue’. That is devastation. Jane Colby Executive Director The Young ME Sufferers Trust
News | The ME Association - Part 193
Look in on our ME-relevant advertisers
Our advertisers include a Welsh company that makes chemical-free mattresses, a holiday and retreats centre in Gascony, an ammonia-free hairdresser in Keighley (West Yorkshire) and an electric bike company helping people enjoy their pedal-power. They’re all relevant to people with ME/CFS and their carers. Click here to visit them
‘The roots of chronic fatigue’
From The Economist print section, 8 May 2008 ME is a puzzling illness, but it appears to have a biological basis and a test for it could be developed.
Closure of specialist paediatric units – question in the House
Labour MP for Norwich North, Dr Ian Gibson, has been asking about the recent closure of specialist ME paediatric services in Leeds, Stevenage and London.
‘Sacked Hassocks quiz contestant wins £150,000’
From The Argus, Brighton, 8 May 2008 A woman who suffered chronic fatigue syndrome was sacked from her job – but went on to win £150,000 on TV’s Who Wants To Be A Millionaire.
Closure of the IMEGA electronic news group
The IMEGA electronic news group, founded nine years ago to provide a means of contact and information between officers of local and national ME groups, was closed without warning at the weekend.
‘Man, 20, plagued by ME took own life’
From the East Anglian Daily Times, 7 May 2008 (reporter: Elliott Furniss) A YOUNG man from Colchester who had been plagued by ME for 10 years took his own life, an inquest has heard.
Incapacity Benefit: questions in the House
Labour MP Dr Ian Gibson been firing off questions to Government ministers about Incapacity Benefit and ME.
‘What it really means to be healthy’
From The Guardian, May 6 After a bout of glandular fever at university, Keith Kahn-Harris developed chronic fatigue syndrome, from which he still suffers. He explains how this debilitating and misunderstood illness has changed his life for ever.
‘Is debilitating ME in the genes rather than the mind?’
From the Daily Mail, 5 May 2008 (writer Daniel Bates) The debilitating disease ME could be in the genes, scientists say. They found that patients with myalgic encephalomyelitis shared certain genetic characteristics.
A quarter of a million visitors to this website
The 250,000th visitor to this website – since we installed a reliable stats counter in May last year – logged in earlier this morning. The quarter of a million visitors have so far read 1,349,307 pages.
Royal Society of Medicine meeting on CFS
MAY BE REPOSTED As previously announced, The ME Association was allowed to set up a display stand at the meeting on Chronic Fatigue Syndrome (NB: no mention of ME in the official title) for health professionals (only) that was held that at the Royal Society of Medicine (RSM) on Monday 28 April.
‘Seven genetic types of ME’ found
From BBC Online, 5 May 2007 Geneticists have identified a biological basis for seven different subtypes of chronic fatigue syndrome.
NICE guidelines on ME/CFS – research outcomes
Sutton and Cheam MP Paul Burstow, who is the Liberal Democrat chief whip in the Commons, put down a written question for the Health Secretary about research outcomes of the National Institute for Health and Clinical Guidance clinical practice guides for ME/CFS, which were published in the Autumn of last year. He received a written […]
Ed and Luke find source of the Amazon
Ed Stafford and Luke Collyer – who are walking the Amazon for the ME Association’s tissue bank project and five other charities – have found the source of the Amazon. Read their blog.
Blood samples wanted for ME/CFS genes expression study
The search is on for volunteers to supply blood samples to the ME/CFS genes expression study being conducted at Glasgow Caledonian University by Professor John Gow and his research assistant Dr Suzanne Hagan.
Government confirm plans for MRC panel of scientific experts on ME/CFS
The Department of Innovation, Universities and Skills – which oversees the work of the UK’s Medical Research Council – has confirmed plans by The MRC for a panel of experts to review the subtypes and causes of ME/CS.
ME Association Board and AGM summaries, April 2008
This is a summary of key issues that were discussed at three meetings of The ME Association.
Take part in survey into state of the nation’s healthcare
The Open University in conjunction with the BBC have launched an online survey into the state of the nation’s healthcare. People taking part will be asked to say what they think of services they receive from both conventional healthcare (GPs and dentists, for example) AND from the complementary and alternative practitioners.
ME sufferer scoops TV quiz fortune
A woman suffering from chronic fatigue syndrome experienced a turnaround in fortune after she lost her job but then reached the final round of TV’s Who Wants To Be A Millionaire? the next day.