9 May 2011
A summary of recent M.E. related stories in the news. Headlines appearing in the media as dated.
Bedbound in a darkened room with severe M.E.
Kerry Newnham, who has severe M.E., has spent 14 years bedbound in a darkened room, and has not been able to have a bath now for 18 months. Her mum Angela, who cares for her, says Kerry cannot have anyone even sit and talk to her because she cannot cope with that sort of stimulation. Kerry lives in Norfolk, where the charity Invest in M.E. is hoping to set up a research centre for M.E.
Lowestoft Journal, p 1-2
Much more research needs to be done
Kay Gilderdale, whose daughter Lynn had severe M.E., talks about coping with the illness and how much more research needs to be done. Action for M.E. is raising funds to set up a biobank for M.E. research, says Chief Executive Sir Peter Spencer, while the lack of diagnostic test and ready cure contributes to misunderstanding around M.E.
Aberdeen Press & Journal, p 12-13 and online
No evidence of XMRV
A team led by Dr Ila Singh, University of Utah, examined the blood of 100 patients and 200 healthy people but found no evidence of XMRV. The team also found no evidence of the retrovirus in the blood of 14 CFS patients identified as XMRV-positive in an earlier study undertaken by the Whittemore Peterson Institute in Nevada.
LA Times, online
Free M.E. awareness posters and leaflets
In a letter to the editor, Sir Peter Spencer, Action for M.E., asks people to display the charity’s awareness posters and leaflets during May, M.E. Awareness Month. To order free copies, contact Action for M.E. at firstname.lastname@example.org.
Wirral News, online
Ashby Times, p 12
Coalville Times, p 12
Stirling Observer, p 26
Swadlincote Times, p 12
Important to raise awareness
In a letter to the editor, Dr John Greensmith says that the recently published story of Rachel Lindan, who has M.E., illustrates why it is important to raise awareness and continue with research to find an effective treatment for M.E.
This is Staffordshire, online
Veronica Thomas, who has fibromyalgia, describes living with the illness, and says that people living with fibromyalgia, CFS and autoimmune conditions have to deal with people saying that they don’t look sick, despite the fact they are very ill.
Bella Online, online
Finding the cause of M.E.
Some researchers have been unable to find the retrovirus XMRV that Judy Mikovits, Whittemore Peterson Institute, discovered to be linked to M.E., writes Michael Barrett. He compares the difficulty in finding the cause of M.E. with attitudes to Aids in the 1980s, and the fact that a small but influential group, including a Nobel Prize-winning scientist, initially denied the role of HIV in causing Aids.
New Statesman, online
Oxfordshire events for M.E. Awareness Week
Susanna Geddes has had M.E. for 23 years, and hasn’t been able to read a book, watch TV or make a meal in all that time. Patricia Wells, who also has M.E., lay in a darkened room for five years. Both women live in Oxfordshire, where Oxfordshire M.E. Group for Action can offer support and advice. The group also has a full programme of events planned for M.E. Awareness Week. To find out more, see www.oxnet.org.uk/omega.
Oxford Times, online
New support group in Exeter
Emma Webb, Anne Madray, Joanne O’Donnell and Evelyn Paul, who all have M.E., have set up new group Support and Awareness of M.E. Exeter. The group, linked to Action for M.E., had 35 people turn up to its first meeting in April and will now meet on the second Friday of each month at Jury’s Inn, Exeter.
Axe Valley Midweek Herald, p 9
Pamela Chesnye held a carnival party with tombola, raffle, race night and Easter egg hunt to raise money for Action for M.E.
Grimsby Telegraph, p23
M.E. is very isolating
Hannah Tiptree has had M.E. for three years, and hopes to raise awareness of the condition by hosting a fundraising variety show on Saturday 14 May, 7.30pm, Wickham Bishops Village Hall. Hannah says that having M.E. is very isolating, and decided to host this event to being M.E. to people’s attention.
Colchester Gazette, p 14
Fiona Dalgleish, whose 10 year old daughter Rachel has M.E., held afternoon tea at Westwood Baptist Church on Saturday 7 May to raise money for the Tymes Trust.
East Kilbride News, p 6
New herbal medicine legislation
Judy Hayman, who was diagnosed with M.E. in 1997, worries that new herbal medicine legislation will lead to a ban on the food supplements that help her manage her symptoms. The EU Traditional Herbal Medicines Directive came into force on 1 May.
Guernsey Press & Star, p 9
A sentence of M.E.
In a letter to the editor, Dr John Greensmith asks people affected by M.E. to get involved in his project, ‘A Sentence of M.E.’, by emailing a single sentence describing life with M.E. to email@example.com.
Droitwich Standard, p 8
In response to a reader asking how to help her 70-year-old sister, who has M.E., herbalist Liz Sanders says that rest and increased levels of B12 may help, and that high doses of kelp can also be useful to boost the thyroid.
The Weekly News, p 10
Bedbound with M.E.
Mary Craske, who was bedbound with M.E. and needed round-the-clock care, says the Lightning Process helped her to recover.
North Norfolk News, online
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The information contained within each press summary is provided for your personal information only. It does not necessarily reflect the views of Action for M.E.