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Members of the ME Association receive a quarterly magazine – ME Essential – delivered to their homes. It features exclusive interviews, comment from MEA staff and trustees, medical and scientific developments and includes stories and opinions from people living with M.E.
“Happy New Year and welcome to the Winter 2020 issue of ME Essential. A whole new decade is upon us and I’m not sure where the time has gone! I hope you all had a relaxed and comfortable festive season and enjoyed time with family and friends.
“We are now approaching ME Awareness Week. Although it seems a long way off with four months to go, time will no doubt speed up and we are therefore already planning ahead. Our next issue will have lots of information about how to get involved and how your friends and families can help too.
- If you also like to plan well ahead for MEAW events and have ideas for a fundraising event (big or small), or simply wish to order supplies for MEAW, please email our fundraising manager Tony Britton at tony.britton@meassociation.org.uk.
- If you have stories to tell and pictures to share, poems, illustrations or recommendations/suggestions for anything at all, and would like to get in touch about being featured in our magazine, please email me at caroline.cavey@meassociation.org.uk.”
ME Essential Winter 2020
The magazine comprises 60 pages of content. We hope we have something that will appeal to everyone. Extracts from the current issue are shown below…
Our wonderful cover picture features Kate Stanforth who teaches ballet from her wheelchair. Read her story on page 24. Picture by Hannah Todd Photography.
Chairman’s Message
“Start spreading the news I’m leaving today, I want to be part of it, New York, New York…”
“With the words “I want to wake up in that city that doesn’t sleep” it wasn’t long before New York became known as ‘The City That Never Sleeps’. I was reminded of that when, two days before offices around the UK closed for the Christmas Break, I received an urgent email.
“Funding for a research project was due to start in January but at the last moment amendments were required to the contract. There followed telephone calls, a flurry of emails and finally redrafted clauses between Dr Charles Shepherd, myself and the researchers.
“Then another email arrived. The legal department for the research body was closed until the New Year. Everything ground to a halt.
“At the ME Association, things were different. We had trustees working for your charity over Christmas. Our social media team watched posts and answered questions. New research studies from around the world were read. ME Connect, our telephone helpline service, was open every day to inform, listen and support those for whom Christmas is a very testing time.
“Sure, we found time for mince pies and put up our Christmas stockings for Santa but otherwise we were here for you. Next time you hear that Sinatra song, think of us: ‘A Charity That Never Sleeps’.”
Neil Riley, Chairman, ME Association.
News
2020 CMRC Research Conference: 10th – 11th March
Full details about how to attend this year’s conference in Bristol can be found in the January news archive on the MEA website. As usual, we are providing financial help to six medical students who would like to attend.
To apply for one of these awards, we will require: Details of where you are studying, What stage in the degree course you are at (which can be an undergraduate or postgraduate degree), and, a short summary – of no more than 500 words – explaining why you have developed an interest in ME/CFS and why you want to attend the conference.
Details on how to apply for a student bursary and about ticket availability can be found on the website announcement.
The All-Party Parliamentary Group on M.E.
An excellent meeting took place on 14th January to re-establish the All-Party Parliamentary Group on ME (APPG) on ME. Around 30 MPs and staffers were in attendance and there were no shortage of offers to take on officer roles.
It’s full steam ahead with plans to set up a series of meetings to investigate areas of concern – benefits, biomedical research, children, management and NHS services, medical education, severe – and produce an APPG report. Carol Monaghan, MP, was delighted to have such broad cross-party support for the reestablishment of the APPG on ME and commented: “We will be pressing for better treatment programmes for those living with ME”.
Genetics research into ME/CFS
The ME Association has been actively involved with the ME/CFS Biomedical Partnership (MCBP) in the preparation of a major research grant application to investigate the genetics of ME/CFS.
The MCBP: Genetics and Biomarkersis a partnership of researchers, people with ME/CFS, carers and the public.
The partnership will shortly make a grant application to the Medical Research Council and the National Institute for Health Research for a very large genetic study into ME/CFS known as a genome-wide association study (GWAS).
The project will be led by Professor Chris Ponting at the University of Edinburgh in partnership with the UK ME/CFS Biobank at the London School of Hygiene & Tropical Medicine – where all the basic running costs are provided by the ME Association Ramsay Research Fund.
You can find out more about the study on the FAQs page of the MCBP website here: https://mebiomed.org.uk/faqs
This is an historic opportunity for ME/CFS patients, and the ME Association is looking forward to working with both patients and the research group to help make it a reality.
There has been a fantastic early response to promotions with over 6,000 patients signing up to the proposal. Show your support and sign-up to this ground-breaking research today!
ME in the Media
Every person reading ME Essential already knows the desperation and devastation that ME causes. How it can break families and friendships and test the very limits of human endurance.
Yet perhaps one of the cruellest hallmarks of this horrendous disease is this: That despite so many people suffering, awareness of ME among the general public remains shrouded in misunderstanding and misgivings.
It is a tragic juxtaposition unique to ME. One of the cornerstones of the ME Association’s mission is to break down those barriers and tell the real stories of people with ME. And, the truth is, we could not do it without you.
Our members continue to overwhelm me, and others in the Association, with their willingness and desire to speak loudly to help spread the ME message. Since ME Essential last landed our your doorstep, we have secured and covered in the UK national and regional press, been on TV, on radio and the web….
John Siddle, PR manager, ME Association.
An interview with Dr Dane Cook by Dylan Murphy
Dane Cook is Professor of Kinesiology at the University of Wisconsin and Director of the March Center for Research in Exercise and Movement.
He is also a member of the US National Institute of Neurological Disorders and Stroke Council Working Group for ME/CFS Research Roster.
Can you tell us about your current research into ME?
My current research focuses on using exercise as a physiological challenge and determining how it affects central, autonomic and immune systems. These studies are meant to uncover pathophysiological mechanisms of disease maintenance and severity and are focused on the phenomenon of post-exertional malaise (PEM).
Medical
Ten key aspects of management
This revised medical leaflet is available as a free download and we’ll be featuring it on the website and seeking your views about management via social media later this week.
1. Make sure the diagnosis is correct and don’t automatically attribute new or worsening symptoms to ME/CFS
One of the reasons why some doctors find it difficult to make a diagnosis of ME/CFS is that this must be based on medical history alone – as there is no diagnostic blood test for this illness. However, a number of specific blood and urine tests should always be checked before a doctor confirms a diagnosis of ME/CFS. This is because there are a considerable number of other illnesses – endocrine/hormonal, infectious, immunological, neurological, rheumatological – that can produce symptoms which are very similar to ME/CFS.
It is also important to check with your doctor when a new symptom appears, especially what are known as ‘red flag’ symptoms by doctors (e.g. weight loss, joint swelling, persisting fever or raised temperature), or an existing symptom (such as joint pain) becomes significantly worse, or changes in character. Do not automatically assume that this is just another aspect of your ME/CFS. The same advice applies when you have a significant relapse or exacerbation of ME/CFS symptoms and there is no obvious explanation – such as an infection or a significantly stressful event such as a surgical operation or physical trauma…
Ask the Doctor
Fluid retention
Is fluid retention a symptom of ME? I’m in my mid-fifties, have had ME for almost 15 years and while I’m not housebound my mobility is limited, and I’ve been putting on some extra weight recently. I’ve also noticed that my ankles look puffy at times and my shoes feel tighter than normal if I’ve been on my feet a lot. My GP says that I have some mild fluid retention – he calls it oedema. He said that this can be caused by heart failure – but my heart is fine. He has suggested I wear some support stockings. Is there anything else I can do?
Avoiding prescribing errors
In addition to ME I have developed both arthritis and osteoporosis and now require drug treatment for these two conditions. I was recently prescribed a new and fairly powerful drug that soon exacerbated a number of my ME/CFS symptoms. However, I received no warning that this was something that could happen. As a result, the drug had to be stopped and changed to another one that I was able to tolerate. This upset might have been avoided if my doctor had also considered the potential side-effects a bit more carefully, and discussed them with me, before writing the prescription. Why doesn’t this happen?
When will there be a diagnostic test for ME/CFS?
We keep hearing about different abnormalities that researchers are finding in the blood of people with ME and with brain scans. So why aren’t any of these tests, especially the new one from Professor Ron Davis’s group in America, being used by doctors to help confirm that someone has ME – or does not have ME?
Dr Charles Shepherd, Hon. Medical Adviser, ME Association.
Real Lives
I had always been full of life…
From dreams of working with horses or becoming a vet, going to art college and generally living an active, sporty life, Dolores was struck down with a virus that led to ME. This is her story…
Life is not how I knew it. Gone are the days of living life with the freedom to do as I wish – no spontaneous fun for me. No sprinting, no concerts, no dancing, no drawing or painting – things I loved. I still find it confusing and irritating to be so restricted by my body. I want to feel alive again and be part of the world, but I simply can’t achieve those things in this body, not yet.
My life is made up of choices, not exciting things – mostly necessities. Everything has to be in stops and starts, broken down into manageable stages. It feels weird to have to do that but if I don’t I suffer. I’ve rebelled against these shackles; I still do when I get to the end of my tether – I get angry. It’s not right to have to live like this…
The world of dance
Kate Stanforth thought chronic illness had ruined her dreams of doing ballet. She now teaches dance from her wheelchair…
Ever since she was eight years old, Kate Stanforth wanted to be a professional ballet dancer. She would train for hours before school, after school and at weekends. Dance was a huge part of her life. But one morning, when she was 14, she woke up and felt so unwell, she could barely move.
Kate quickly deteriorated and was eventually diagnosed with myalgic encephalomyelitis, also known as chronic fatigue syndrome. Eventually, Kate started to use a wheelchair and she thought she would have to leave the world of dancing behind. But now, age 25, Kate has built up her strength and is now teaching ballet from her wheelchair…
When I crash
The push/crash part of Myalgic Encephalomyelitis is well known to people with ME/CFS. Exert yourself too hard physically and/or mentally and you ‘crash’ – your normal symptoms flare up, sometimes new and exciting ones show up, and you’re hurting.
In scientific terms a crash is called post-exertional malaise (PEM) and unless you’re managing your ME/CFS really well you’re going to have to deal with it… sometimes frequently.
For me, a crash feels like I’m falling out of control. I imagine I’m falling down a deep, dark hole (like a dry well). My instinct is to fight it, to put my hands out trying to grab onto the walls, but this only causes more injury and makes things worse. The more I fight when I’m crashing the longer and more severe the crash becomes.
I feel anxious because I know what’s coming. My mind races trying to find a way to avoid the pain and exhaustion that by now are inevitable. Added to this I also feel somehow that I have caused it to happen, that it’s my fault for over-exerting myself, but the truth is I didn’t do anything wrong and it’s not my fault I am ill…
Fundraising
Go Blue 4 ME
Go Blue for ME, one of our most successful ever regular fundraising campaigns, will run again this year. While we’re keeping some other surprises up our sleeves, the main Go Blue fundraiser will be held during ME Awareness Week in May. The dates for that are Monday, 11th May to Sunday, 17th May. So please block out those dates in your diaries and get ready to slap on the war paint!
Wear blue clothing – we’ve got some cracking T-shirts which will transform the way you look. You could complement the shirt with blue leggings, skirts, wigs and make-up. Cover your front door and the garden gate with blue tinsel held back from Christmas. Put a blue bulb in your porch lamp.
Hold your own blue tea parties – the tablecloths, cakes, crockery and posters could all be colour-coordinated if you plan far enough ahead. Anna Redshaw is hoping to hold her usual iconic Blue Sunday Tea Party at Tinwell, near Stamford. Check out what’s available to decorate your event in your local party shops. Remember, the colour’s BLUE!
Get married in blue that week! You’d really make the news if you could tip off the papers and let them know why you’re doing it. Ask the ME Association for stocks of posters and our ‘ME Hurts!’ leaflet. To spread the message. Invite your local paper to take the photographs. Go virtual tea party for those who will not be well enough to travel to you on the day and take photos of everything – we’d love to use them!
| Member Feedback “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.” |
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ME Essential Frequently Asked Questions Index
In every issue of ME Essential magazine, Dr Shepherd answers questions from members on a whole variety of subjects relating to life with M.E. that together provide a useful source of reference.
You can view or download our latest index and then find answers from your own back-copies of our magazine, or contact head office who should be able to assist.
The ME Association
Please support our vital work
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If you would like to support our efforts and ensure we are able to inform, support, advocate and invest in biomedical research, then please donate today.
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