The latest issue of our quarterly magazine is dropping through members’ letterboxes this week – with a striking ‘double-take’ portrait of 19-year-old Emilia Chenery-Robson on the front cover. Emilia features in an unusual exhibition of M.E. photography by her mother Juliet, which is touring the UK at the moment (more of that later).
Inside, our medical adviser Dr Charles Shepherd is in top form – contributing a new medical management file on ‘Sleep disturbance and ME/CFS’, which should be read by everyone with the illness. It covers the use of melatonin, now available in the UK as a prescription-only drug called Circadin or through the internet, the use of anti-depressants and short-acting hynotics, as well as a whole range of routines that people are already using to try and get a decent night’s kip.
As Dr Shepherd points out, a few particularly hardy people – like Mrs Thatcher when she was Prime Minister – can survive on as little as four hours sleep a night. For the rest of us… well, there’s Charles Shepherd’s leaflet.
Non-members needn’t miss out as this article is also available as a separate leaflet on our 8-page Order Form, which can be downloaded HERE.
Incidentally, there is a almost whole page of readers’ letters on how they cope with Restless Legs Syndrome, that disturbing phenomenon so familiar to folk as they try to have some restful sleep. They arrived in our editorial office after Dr Shepherd wrote on the subject in the last issue.
There’s more medicine in our ‘Ask the Doctor’ column. In this, Dr Shepherd discusses:
• Why some ME/CFS clinics are asking more than just medical history and what readers can do if they are worried by the intrusive nature of some of the questions (“people need to know why the the questions are being asked”, he writes).
• Whether curcumin, an ingredient of the spice turmeric, has a role to play in the reduction of fatigue. As is usual, Dr Shepherd checks out whether scientists have anything significant to tell us.
• The use of fatigue assessment scales to objectively measure fatigue in M.E. – with some discussion about the measure he says is most appropriate for people with M.E, Krupp’s Fatigue Severity Scale.
• Whether feverish episodes, particularly at night, are all part and parcel of M.E. and if there is any treatment for them.
• The use of the Marshall Protocol, a cocktail of drugs and supplements, and whether it could be useful in the management of M.E. (“It seems to be very popular in America but largely ignored over here in the UK”, he writes).
• How important it is for women with M.E. in appropriate cases to be investigated for Ovarian Cancer, so vital early diagnosis can be made.
• The outlook for people with M.E. and whether it is possible to make a full recovery.
• The importance of thyroid function tests. “Unfortunately, because there is a symptom overlap between ME/CFS and hypothyroidism [underactive thyroid] the latter is often not picked up and treated as soon as it should be.”
• Weight loss – is it a symptom of M.E.?
• Vitamin B12 tests and why doctors won’t routinely recommend them when assessing people with M.E.
• The World Health Organisation classification of M.E., CFS and chronic fatigue. The reader asked: “I am currently in dispute with an insurance company over the correct classification. Could you please confirm the current position?”
State benefits are an exceptionally thorny issue at the moment – with many people with ME/CFS and other fluctuating conditions feeling that new ways of assessing their fitness for work have ripped the rug out from under them because they’re being treated unfairly and capriciously as the depth and severity of their illness are not being recognised.
With this in mind, ME Essential is running a story on our “Ten Top Tips” of things to consider when you are applying for Employment and Support Allowance. Our detailed guide to filling in the form is also available on our 8-page Order Form.
We also carry details of how to apply to take part in a Department for Work and Pensions consultation on the proposals to turn the Disability Living Allowance into Personal Independence Payments – with the DWP being serious about wanting feedback from people who currently claim DLA. And we discuss the contribution made by the Countess of Mar’s ‘Forward ME’ group to work on trying to improve the fitness to work form descriptors – work that involved many hours of work for Dr Shepherd in attending meetings in London.
Elsewhere in ME Essential:
• We report the death of MEA patron Louie Ramsay, daughter of one of our founders Dr Melvin Ramsay, and recall her formidable acting career.
• We’re looking for MEA ‘white knights’ who can help keep the Ramsay flame alive by pledging support for the “Big Give Christmas Challenge”. We have to find people willing to pledge £1,000 or more before we can apply to take part in this fundraising event.
• We announce the date for our next ‘ME Question Time – Saturday, October 8, in Huddersfield (more on the website later).
• Could you be an ME Association trustee? We’re always looking out for talented members to join the Board.
• One of M.E.’s top supporters in Parliament, the Countess of Mar, is honoured for being just that.
• The M.E. training seminar in Liverpool that has set Merseyside’s hopes on fire.
• Four pages on the Invest in ME’s international conference in London on May 20 – with summaries of all the presentations.
• A double-page spread on the role of acupuncture in ME.
• Three pages of ‘hot topics’ – mixing with the M.E. world’s movers and shakers on this side of the Atlantic.
• “One Last Goodbye”, Kay Gilderdale’s long-awaited account of the life and death of her daughter Lynn, published by Ebury Press. Kay summons up her courage to tell us what it was really like to be with Lynn and delivers on a promise to expose society’s shameful failure to recognise M.E. as a serious biological illness.
• “Simply Gluten-Free & Dairy”, Grace Cheetham’s latest cookbook, Duncan Baird Publishers. Dreamy food, cooked up gloriously by a highly sympathetic author who suffers from food intolerances.
• “ME/CFS/PVFS: An Exploration of the Key Clinical Issues” by Drs Charles Shepherd and Abhijit Chaudhuri. Only from the ME Association. Ba Stafford reviews the latest edition of this tour de force.
• “Chronic Fatigue Syndrome: Support for Family and Friends” by Elizabeth Turp, Jessica Kingsley Publishers. Cathy Stillman-Lowe asks why the curious omissions?
Paul Groves ponders the price of caring in his regular column.
Ba Stafford closes down ‘Ye Olde Therapy Curiosity Shoppe’.
FOUR PAGES OF LETTERS
• Four letters about Restless Legs Syndrome.
• One reader’s plea from the heart: “We’d love to talk to someone”.
• Nym’s mini-Guide to getting the new ESA, while Martyn Ounstead sorts out another fine ESA mess. Well done to both!
• A reader discusses St John’s Wort, Valerian and XMRV
• A nutritional view from Scotland
• Simple question about organ donation – but still no satisfactory answer.
• Living with Hypermobility Syndromes and Postural Orthostatic Tachycardia Syndrome (two letters)
• Hats off to Beryl Compton and the Bishops Frome Bingo Gang. Over the years, they’ve amassed £45,000 for our Ramsay Research Fund.
• Emily Wren remembers her day at the races – actually, the Reading Half Marathon – and what it felt like to be raising over £1,200 for her favourite ME charity.
• Katie Davies, her sister Hannah and boyfriend walked the Inca Trail to Macchu Picchu for the MEA because her mother suffers with the illness.
• Charlotte Mawdsley’s fabulous song and dance show at Hinckley, Leicestershire.
• Hannah Miller pulls off another great variety show at Wickham Bishops, Essex.
• We’ve eight guaranteed places for runners in next year’s BUPA London 10k on Sunday, May 27 – over the Olympic course. Contact Maya Thomas, our fundraiser, at firstname.lastname@example.org if you would like one!
• Vodaphone’s new commission-free text giving service: Text LDHT21 £10 (or however much you want to give) to 70070 and every penny comes to us.
• Our comprehensive ‘Gifts List’.
LAST BUT NOT LEAST
Actually it’s back where we started – with Juliet Chenery-Robson’s M.E. photography show which has opened at Peterlee, Co Durham. And, with sponsorship from a new charity called Life with Art, there are plans for it to tour the country. We’ll put up the latest information about this show at the website later today.