“Welcome to the autumn issue of ME Essential. It has been a busy few weeks here at the ME Association…
“You will see that we have agreed to fund two new research studies and provide additional support for the M.E. Biobank. Although we cannot release full details quite yet, we thought you would like to know ahead of the big announcement.
“We have also been working hard with our recent Severe ME campaign, including Severe ME Day, and have included an extended supplement with this magazine. We hope you will find this interesting and helpful.
“Also enclosed you’ll find a new ME Alert Card, free to members receiving this magazine in the post. If you require extras, they are available in the website shop or by using the order form and are now at a reduced price too!
“Enjoy your magazine… Don’t forget to order your Christmas cards and keep an eye out for your Christmas Magazine Supplement in December!”
The magazine comprises 50 pages of ME-related content. We hope we have something that will appeal to everyone. Extracts from the current issue are shown below…
“At our Board Meeting in August the charity’s trustees voted unanimously to put almost £200,000 into research and our pioneering M.E. Biobank. That’s real science; not the untestable realms of dysfunctional beliefs which has nothing to do with our illness.”
Neil Riley, Chairman, ME Association.
NICE Guideline Update
“In preparation for the meeting on September 5th and 6th we had over 1000 pages of information and evidence to read. Much of this related to two major reviews of all the relevant pharmacological and non-pharmacological interventions into ME/CFS that have been published.”
Dr Charles Shepherd, Hon. Medical Adviser, ME Association.
“In this issues research round-up, we will be taking a look at some recent research highlights, including a mouse model of ME/CFS, proof of inflammatory activity, treatment with faecal microbiome transplantation and an interesting theory for the mechanisms behind the illness.
“We also feature a summary of our recent look at the research on mitochondria in ME/CFS. A related key study published with funding from the ME Association, was the validation attempt of the ‘Acumen’ or ‘ATP profile’ test, originally developed by the Myhill Group which we talk about later in the magazine.”
Charlotte Stephens, Research Correspondent, ME Association.
Lyme Disease – The Facts
“Lyme Disease is becoming more common in the UK. We discuss the controversies, how best to remove ticks, the symptoms and signs – sometimes confused with ME/CFS – testing, diagnosis, the treatments available and how Lyme can become horribly chronic if not treated soon enough.
“Readers of this website blog summary should also be aware of the recent controversy relating to Lyme Disease and ME/CFS that followed a briefing held by the Science Media Centre with subsequent comments made by NHS experts appearing in the national media.”
Dr Charles Shepherd.
Ask the Doctor
Dr Shepherd's regular column where he answers medical questions from members. In this issue he responds to:
- How can I speed up my appointment with the local ME/CFS service?
- Why can’t I talk to our GP about concerns for my wife’s health?
- When can I start to drink alcohol again?
- What is a creatine kinase blood test?
- Could drugs for treating Alzheimer’s disease be of any benefit in ME/CFS?
- Has any link has been found regarding platelet abnormalities and ME?
Five Minutes With…
“In May ‘89 (aged 34), I came down with a ‘flu-like’ illness, which was worse than anything I remembered experiencing since childhood. After signing up with a local GP, she recognised post-viral fatigue, recommending a few weeks rest before carefully trying to return to normal.
“After several weeks and just getting back to work full-time, I relapsed. The GP found an interested psychiatrist in private practice, who diagnosed CFS, and advised being a deal slower in trying to resume steps to normal life.”
Ewan Dale, Trustee and Treasurer, ME Association.
My ME – Looking After Each Other
Graham and David, a gay couple who have been together since 1974, tell their story of living with ME.
“One day in 1988 Graham was reading the Sunday paper when he saw an article about Clare Francis, the round-the-world yachtswoman. She had a strange illness called Myalgic Encephalomyelitis and described her symptoms. This was our EUREKA moment and we knew – that is us! Our GP agreed and sent us to another hospital consultant who confirmed we had ME.
“We told him that we were thinking of moving to Portugal – an excellent idea, he said. Graham quit his job with mixed emotions. The job was everything he ever wanted to do but had become a nightmare with having ME. David’s employer was flexible enough to allow him to work from home about half-time.”
Real Lives – Forever and Ever
Margaret, Carol and Shirley talk about coping with long-term ME.
Margaret: “Living with long-term ME means it can be with you forever. You haven’t invited it in, and you haven’t invited it to stay. But stay it does, impacting every part of your life and changing what you know and love into something very different.
“The new normal is not what you want, yet you must learn to live with it as best you can. Here, three readers give a small insight into how things have changed for them, and how life is now.”
Carol: “In my previous life I was a beauty and perfume consultant. I was struck down with ME at the age of 36. I felt that I would shake it off. No chance. It’s still with me and I’m now 67.”
Shirley: “I accept the fact that I will never be fully well. But, when I think back, I am much better now than I was. I realise how lucky I was that my GP always accepted that I was physically, and not mentally, ill.”
Walking back to happiness: Fourteen years after becoming so unwell she struggled to leave the house more than a couple of times a week, Fiona Symington has spent the summer walking back to happiness.
To celebrate her recovery from ME, she has set herself a target of 1,000,000 steps as an MEA fundraising challenge. The last we heard was that Fiona was within reach of that – having recorded over 600,000 steps on her pedometer.
Kiltwalk: “If I still have breath in me I would do it again, even if I’m in a wheelchair!” Tracey Martin, a paramedic trained social care officer and trained first-responder before she went down with ME following a stroke nine years ago, is talking about her 11-mile walk as part of the Dundee Kiltwalk on August 18.
It’s All About ME – Disney made me question my disability
“My holiday wasn’t spent waltzing between attractions from dawn until dusk. On a typical Disney day, I had a few hours outdoors, followed by solid bedrest, a heck of a lot of medication and usually extreme coercion from my best pal Izzy before I could face venturing outside again.
“I live with constant chronic pain and fatigue: to have to queue for just one attraction, even in my wheelchair, would leave me suffering for the rest of the day.
“And if you made me choose between spending my diminishing energy waiting in a queue for a ride I might be too poorly to do the by the time I reached the front, or pacing myself and making sure I’m well enough for cuddles with Mickey Mouse, I’m sure it’s a no-brainer which one I’m going to choose.”
Pippa Stacey, Social Media Manager, ME Association.
Health – Going into Hospital
Pat Matthewson relates her story and provides tips on going into hospital if you suffer from M.E. – and also on how to avoid having a kidney removed!
“Last year I was rather shocked when I was told that I had to have a kidney removed. At about that time, Neil Riley wrote an excellent editorial about going into hospital and that much still needs to be done for ME patients.
“I copied this article and passed it around to my GP, to the surgeon and the anaesthetist. It was very timely and helpful. This was the first time in my life that I had to face major surgery.
“I was 34 when I became ill with ME and little was known about it then. My GP was puzzled, but after some pushing from my father he finally referred me to a neurologist, who did not treat me badly but suggested that I have a few days in hospital for tests. I then experienced an attitude from some nurses (please forgive me if any of you are nurses, but Neil’s article mentioned the eye-rolling some of us receive).”
“I am writing to say how much I enjoy ME Essential magazine. You have made such a change both in looks and content – so much content! You have also managed to make it feel more personal as well as amazingly informative.”
“M.E./CFS is such a lonely illness and the magazine helps us to feel we are not alone, that there are others going through the same journey as ourselves.”
Yvonne, Your Letters, Spring 2019.
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