Inside our quarterly ‘ME Essential’ membership magazine | Spring issue, March 2013

Our latest quarterly magazine is being delivered to members this weekend – with a photo on the front cover of medical adviser Dr Charles Shepherd, following his recent interview in the Daily Telegraph.

The Telegraph joined a number of national papers last year whose columnists made wild assertions about the nature of M.E. This interview, reprinted with permission in full on pages 6 and 7, formed part of our attempt to help set the record straight. We think our members – particularly those who don’t use the internet – should have opportunity to read it.

Dr Shepherd’s keynote article – the latest in his series of ‘Medical Management Files’ – will equip readers with all the tools needed to help develop a good working relationship with their GPs.

It’s a complex relationship that needs handling with care, on both sides, writes Shepherd. And don’t overload your family doctor with stuff printed off the internet: “some of my medical colleagues have an almost instant allergic reaction to ‘information off the internet'”, he writes.

In the ‘Ask the Doctor’, Charles Shepherd answers the following questions:

* What can I do to persuade ny husband to seek help for his depression?

* My overall stamina is declining – is this middle age or ME/CFS?

* Could the jaundice mean I have Gilbert’s Syndrome?

* Can tinted glasses help with my headaches?

* Do I have to give my whole body if I want to donate specific tissue for research?

* Are private clinics for ME/CFS worth the expense?

* Why isn’t more sleep research being carried out?

* How can I get my MP interested?

There’s an interesting piece by former school Head of English Craig Morris on his first horrendous 18 months searching for help after diagnosis. He eventually found it after being pointed towards a specialist occupational therapist and the Liverpool ME/CFS service.

Jane Colby, executive director at the Young ME Sufferers Trust, writes about how their input influenced the development of a new Department of Education guideline on education for children who cannot attend school because their health won’t permit it.

In our book review section, we look at the Oxfordshire ME Group for Action’s new book of poetry, Poetry from the Bed, revisit Elizath Turp’s guide on Chronic Fatigue Syndrome/ME: Support for Family and Friends, and mention Rachel Clarke’s first novel Falling Through the World. As an aside, there’s a brief report on the £100,000 jackpot rung up by newly established crime writer, Malcolm Mackay.

And such was the quality of Daphne Caton’s report of our ME Question Time, held in conjunction with Shropshire ME Group in Shrewsbury last October that first appeared in her own group’s newsletter, we reproduce it almost in full in a five-page report in ME Essential.

Two pages of readers’ letters, bringing up the rear, show how we welcome conversations with our membership.


Note from Neil Riley, our chairman, about his Editorial entitled:
“Wild strawberry: is this how freedom tastes?”

For the last 9 months I have been drinking a supplement called Fresubin. You can get the protein or energy versions. It was prescribed by my dietician for the sole purpose of putting on weight as, following surgery, I had substantial gastro problems and shrank to 9st. 7lbs. As I am 6 foot tall, I was getting very thin and very worried.

Fresubin is an entire diet. It has every mineral and nutrient that you need. You need nothing else and I get through about 6 bottles a day.

BUT and it is a very, very big BUT:

Everyone with ME is an individual. . We have different immune responses. Different severity. Different food problems. Different volumes of different bacteria in our guts.

I have been on several courses of both anti- fungal and anti-biotic treatment in the last 18 months because of serious gastro problems.

No conclusion can be drawn from the Fresubin drink diet alone. The pharmaceutical treatments may have played a substantial role. I simply do not know.

The fatigue symptom of my ME has improved by about 60% but I still get infections that last a long time. Now I rarely get cold feet or hands and my body is much warmer. Before I was always shivering.

Why have I improved? Scientifically, I haven’t a clue!

But as the only change in my life is my diet and the anti fungals/anti-biotics then I attribute the improvement to them. I am beginning to think that the gut has much more influence on illnesses than previously thought. Certainly Dr. Chia and the recent studies coming from Australia and the USA indicate that there may be some link. But “may” is the operative word here.

My wife, Mary, says I am so much easier to live with now! Now that is what I call a result.

Neil


ME CONNECT HELPLINE

0344 576 5326

Available every day of the week between these times: 10am - 12noon, 2pm - 4pm and 7pm - 9pm.

Calls cost the same as other standard landline numbers (starting 01 or 02). If you have a call package for your landline or mobile phone then calls will normally come out of your inclusive minutes.