News | The ME Association - Part 193

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

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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.

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.

  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.

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.

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.

Labour MP Dr Ian Gibson been firing off questions to Government ministers about Incapacity Benefit and ME.

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.

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.

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.

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.

From BBC Online, 5 May 2007 Geneticists have identified a biological basis for seven different subtypes of chronic fatigue syndrome.

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 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. 

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.

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.

This is a summary of key issues that were discussed at three meetings of The ME Association.

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.

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.