Inside our membership magazine ‘ME Essential’, Spring 2011

We engage in a bit of wishful thinking in the latest issue of our ME Essential membership magazine with photos taken by Ian Barter, which would look even better on the side of bus shelters or billboards. But thanks, Ian – they gave us an excuse to daydream for a day or two.

Inside the 48-page magazine, ME Association chairman Neil Riley brings us firmly back to earth when he says in an editorial that the PACE study results will not improve the lives of people with ME:

So after spending over £5 million, the PACE Trial tells us what? That if you give a variety of patients with differing forms of fatigue a mixture of cognitive behaviour therapy and graded exercise, some will feel an improvement in symptoms and some may recover.

But that’s that got to do with you and ME? We are not fatigued, as the PACE Trial therapies would have us think, by deconditioning or some misguided illness belief. Our friends and families know only too well that we are seriously ill. We are not the people we were.

The PACE results will not improve the lives of people with ME. So what is the way forward? It has to be bio-medical research. Our Ramsay Research Find does nothing else but support such research. Current research projects include a scheme to set up a central ME tissue bank in a UK hospital. We are also funding a study at the University of Newcastle into abnormalities in muscle.

The ME Association seeks the answers to out future in the biolofy of your body not the outmoded PACE Trial assumption of your mind.

And we welcome the Medical Research Council’s announcement earlier this year that they have committed £1.5 million to spend on research into the illness.

Our medical adviser, Dr Charles Shepherd, comments:

The ME Association very much welcomes the decision by the Medical Research Council (MRC) to fully accept the list of biomedical research priorities that were drawn up by the MRC Expert Group on ME/CFS last year.

We are also very pleased to note that £1.5 million of ring-fenced funding has been allocated to specific areas of biomedical research that were identified by the Expert Group. This is a guaranteed position on research funding for a specific disease that the MRC seldom takes.

These two decisions represent a very significant shift in the way the MRC views ME/CFS research and they should ensure that research into the underlying physical caise of the illness is no longer something that is only funded by charities such as the ME Association.

As a result of this announcement, we also welcome the opportunity for the charity sector to co-fund high quality biomedical research in partnership with the MRC.

On other pages, ME Essential fairly bristles with good quality, well-thought through medical and research information.

In our regular, keynote Management File section, Dr Shepherd reviews the information we publish on Employment Issues and ME/CFS with an updated version of our most highly requested leaflet. We needed to revise this one as new benefits and regulations which impact on people of working-age are swirling round in the raging millpond that is the Coalition Government’s approach to welfare “reforms”. Dr Shepherd’s review will help readers grasp what is happening.

In a less controversial area, Charles Shepherd also found time to write a shorter Management File on Restless Legs Syndrome – under-recognised, under-diagnosed, under-treated and thoroughly unpleasant for those who suffer from it.

In ‘Ask the Doctor’, he tackles these subjects:

Amitriptylene for headache

Blood bank and biobank donations

Should I tell my employer that I have ME?

Sickness certificates from my GP

Hypermobility syndromes and ME/CFS

Ill-health retirement

Immunoglobulin treatment for chronic pain

Indepent Social Care Assessment (with thanks to Cathy Stillman-Lowe for the factual information)

Post-Mortem Research

Is Post-Viral Fatigue Syndrome the same as ME?

Could I have HIV/AIDS rather than ME/CFS?

There’s research news – with Dr Shepherd updating readers on the latest state of play in the UK biobank and tissue bank projects, Dr Ros Valling’s report of Dominic O’Donovan’s presentation to a recent scientific conference in Australia of a study involving four post-mortems of people with ME/CFS (including Sophia Mirza’s) and an interesting piece of research from Spain involving 60 patients which showed that graded exercise and CBT combined with pharmacological treatment produced “only short-term improvements’ in health. [PACE – put that one up your spout and chew on it!]

Features include:

A rave review by Steve Challen of his yoga class in Daventry, Northamptonshire

Physiotherapists discussing the need for a gentle approach to exercise in ME

Our carers columnist Paul Groves writing about how the tables were turned in his household – when Rachel had to care for him for a change

Another visit to our olde curiositie shoppe for therapies run in a light-hearted way by Wendy Swindlehurst and Ba Stafford

Jane Colby, from The Young ME Sufferers Trust, calling on parents to keep her in touch with how their children’s education is progressing

The MEA Adventure Challenges for 2011 – a hike up Scafell in the Lake District and a five-day bike ride in Tuscany

Letters

‘ESA: don’t let the tribunal grind you down’ (Martyn Ounstead)

The placebo effect (Dr Keith Dunbar)

‘Poems with power’ (Christine)

Blood donation (Reg Betts)

Persistent hoarseness (Belinda Tilley)

Comparison of care with cancer patients (Deborah Winters)

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