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The Summer Issue of ME Essential magazine will be delivered to members soon – if they haven't received it already!
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.
“Welcome to this bumper Summer issue of ME Essential! I do hope you are all looking after yourselves.
“There was such a lot of information we wanted to give you, particularly in relation to Covid-19 and the fantastic DecodeME genetic research study, that your magazine pack has a fair few inserts this time.
“We hope you will find these both useful and interesting. As well as that, the magazine content is overflowing!
“Thank you for all your letters and stories. We received so many stories that it simply wasn’t possible to publish them all this time.
“If yours has been left out I really am sorry, but they will appear in future magazines and your efforts will not be wasted. But please do keep your stories coming in!”
- 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 Summer 2020
The magazine comprises 68 pages of content with additional inserts covering more recent developments.
We hope we have something that will appeal to everyone. Extracts from the current issue are shown below…
Chairman’s Message
“There’s a strange woman in our house. She says she’s my wife”.
Since the corona ‘lockdown’ began, Mary, my wife, has been at home… all the time! Not that I’m objecting, you understand. It’s just, well, strange.
Her world is usually outside. Visiting friends; giving talks; babysitting the grandsons; off with the walking group. Suddenly that’s stopped and I have her in the house, all the time!
She’s joined the everyday life of you and me, the ‘lockdown kids’ with ME. It’s no big deal for you and I. We’re used to it; the social isolation; lack of companionship. Yet it’s a strange new world for our carers and families…
Neil Riley, Chairman, ME Association.
Chairman's Message New Research Investment The CMRC Conference
News and Research
New study to measure physiological changes in daily activity in people with ME
We are excited to announce the funding of a new research study that will examine the feasibility of measuring various physiological data during daily activity in people with Myalgic Encephalomyelitis/Encephalopathy (ME).
Funding for this new study has come from the MEA Ramsay Research Fund. It represents the first research of its type to be conducted in the UK.
The study is titled: “Feasibility of investigating oxygen consumption (VO2), Heart-Rate, Blood Pressure, lactic acid levels and activity levels of people with ME during normal daily activities.”
The research will be led by Dr Nicola Clague-Baker (above), an Associate Professor of Physiotherapy and lecturer at the University of Leicester.
Recruitment has been delayed because of the Covid-19 pandemic, but is expected to begin by the end of this year or early in 2021. Participants will be recruited online once ethical approval has been granted…
The UK CFS/ME Research Collaborative (CMRC) conference
The ME Association encourages undergraduate and postgraduate medical and science students to develop a clinical or research interest in ME/CFS at an early stage in their careers.
The CMRC Research Conference took place in Bristol in March and the
students funded by the ME Association each wrote a short review of the
conference for publication in ME Essential.
ESME BRITTAIN
I’m a 4th year medical student at Cardiff University and hope to become a GP. I was diagnosed with ME/CFS in 2011, aged 13, and have been managing the illness ever since.
I had no knowledge of ME/CFS prior to my diagnosis, and it soon became apparent that my teachers and peers had little understanding of it. My parents were frustrated by the lack of information available to them, and also the stigma that appeared to be attached to ME/CFS.
This sparked my interest in ME/CFS research, and I hope to contribute much more in the future…
Covid-19 and ME/CFS Ask the Doctor Severe ME Week
Medical
Reducing the risk of catching Coronavirus if you have ME/CFS with Dr Charles Shepherd
People with ME/CFS are already in a vulnerable/high risk group when it
comes to catching this infection – mainly because it is highly likely to cause an exacerbation of existing symptoms, or a more persisting relapse.
The general risk from catching coronavirus also increases further if you have any of the factors below that are being identified as likely to make people more vulnerable to the infection. In particular:
- Age over 70 years
- Male
- Obesity
- Black, Asian or minority ethnic background
- Having other chronic medical conditions – e.g. coronary artery disease, diabetes, respiratory disease
- Vitamin D deficiency
In addition, there are a number of social, work and demographic situations which make people more likely to catch the infection:
- Having a high-risk occupation – working in health and social care, retail, and public transport
- Spending all or much of your working time indoors away from home where a lot of people gather in places such as shops or offices
- Living in a part of the UK where there have been a disproportionate number of cases of COVID-19
- Living in a residential or care home
So it’s important for everyone with ME/CFS to do all they can to reduce the risk of catching this infection. This means adopting a way of living that is based on individual circumstances and individual risk factors.
- Almost zero risk – staying at home, not going anywhere, and not meeting anyone else
- Low risk – staying at home for most of the time but going out for a walk or an occasional visit to the shops
- Higher risk – leaving the house and going to work or school, or using public
- transport, or living with people who are going to work or school or using public transport
I have put together a 10-point guide to the most important measures that will help to prevent you catching this infection…
Severe ME Week
Severe ME Week runs from Monday 3rd to Sunday 9th August.
We believe that people with Severe ME deserve to have a dedicated week that brings attention to the reality of their level of disability and their
particular concerns.
By bringing these issues to the awareness of the public we hope it will
continue helping to end the ignorance.
For Severe ME Week 2020 we focus on the issues faced by people severely and very severely affected and hear stories from people whose lives have been overwhelmingly affected.
For those with ME who aren’t currently experiencing such extreme levels of disability, you are very likely to remember those times when your ME was at its worst. For people with severe ME this feeling can be permanent.
Those who are severely and very severely affected need help to let the world know the reality of life with ME.
If you would like your story to be heard online during this special week, please email it to feedback@meassociation.org.uk or to caroline.cavey@meassociation.org.uk if you would like it considered for the Autumn issue of ME Essential magazine.
Severe ME – A Conundrum in Care Your wonderful fundraising efforts! A review of ME Awareness 2020
Your ME Awareness Stories Nutrition trends Healthy recipes
| 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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You can join or renew membership online, or complete an application form – especially if you would like to pay by annual standing order and receive £10 worth of free leaflets – and return it to us in the post.
ME Essential Frequently Asked Questions
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 the latest list of frequently asked questions and then find answer from your own back-copies of our magazine, or contact head office who should be able to assist.
The ME Association
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