ME Research: It's a small world by Ffion.
In every issue of ME Essential magazine we feature the lovely ‘Poetry by Ffion’. Here, she talks about her support of various ME research charities, about Dr Melvin Ramsay, and the hope offered by research investment around the world…
I have a degree in English and French and love languages, literature, writing, art, nature and, more recently, card-making!
I also used to love opera, film, theatre, concerts, walking, socialising and, especially, travelling. Until my life changed totally when diagnosed with M.E. and, subsequently, Fibromyalgia.
I’ve always loved writing. But Ted Hughes said: “Poetry needs a reason”. It would appear M.E. is my reason.
A couple of years ago, poems started to pour out! It started with poems about living with M.E. I sent these to a few good friends who were all very complimentary.
However, they also said that, whilst their understanding of what it must be like to live with M.E. was enhanced, they were also grateful that most of the poems had some humour and lightness, wit, or irony!
As they said: “It’s such an awful disease, and people have such an awful time, it would be too unremittingly sad if there was not a touch of light in your poetry somewhere.”
I then started writing poems on other topics – not just on “M.E., FM and Me”, but also on nature, children, animals, gratitude, humour, etc….
Early in 2018, my husband decided to set up a poetry website for me and I went “live!” (Thinks… “Hmm, if I could only go live in other areas of my life!”)
- Do visit my Poetry Website – I hope there’s something for everyone.
Russell from the ME Association has been very supportive of my Poetry Website and has published a few on MEA Facebook. I had a surreal experience one evening, when I was checking my Website hits.
The hits for one poem: To A Good Man were going up and up and up as I watched! I didn’t realise at the time, but Russell had posted it on MEA Facebook, so I was watching the hits in real-time. They eventually reached over 1,600 – my best-selling poem ever!
Caroline from the ME Association has also been very supportive, publishing a poem in every issue of ME Essential magazine. So, Russell and Caroline, thank you!
Alongside poetry, I used to make cards for friends’ birthdays. But, once I became very largely housebound, their birthdays weren’t keeping up with my output. So, I started making cards, to donate to charities for them to sell to fund-raise.
I made cards for various charities and then, one day, I came across The Open Medicine Foundation in California, who conduct research into M.E. and related chronic complex diseases, such as Lyme’s and Fibromyalgia. They have Centres in Stanford, California; Harvard, Massachusetts; and in Uppsala, Sweden.
I started ‘chatting’ to OMF via email. Sadly, all my ‘chatting’ is done via email now, as people exhaust me – ‘twas not always thus…. I asked OMF if they would like me to make some ‘corporate’ cards. They would!
They would send them to donors and patients. So, I make these cards and I’m delighted to say that they love them. I receive wonderful feedback, and this is a joy to me. So, my thanks to OMF.
Poetry and card-making have been lifesavers. I can do them as and when I am able and, as my bed is only a couple of feet from my desk, the commute is ideal!
But it then struck me that, whilst I was doing voluntary ‘work’ for OMF, I was not doing anything specific for the ME Association. As I’m largely housebound, I can’t take part in fundraising activities, so I decided I would just cut to the chase and make a donation to The MEA Ramsay Research Fund!
In one of those instances of happenstance, I received an email from Angelina in America. She has had M.E. for eight years. She had organised an ME Awareness Concert in her home town and OMF had sent her one of my cards, to thank her.
She loved the card and had emailed to thank me. We started chatting (as you do!) and she mentioned that she was a neuro-endocrinologist. Her voluntary work for national charity, The Solve ME/CFS Initiative, was as a research advisor to their Ramsay Grant Program. My curiosity was piqued. Surely there couldn’t be two Ramsay’s?
Dr. Melvin Ramsay
“Is that our Dr. Ramsay?” I asked. It subsequently turned out that it was! The ME Association has, of course, the Ramsay Research Fund, because Dr Ramsay helped establish the charity in 1978 and was closely involved until his death in 1990.
Had she read his book? She hadn’t, so I sent her a copy. She was very impressed with it and ordered 45 copies to send to ME contacts and researchers globally! Angelina’s husband is a doctor, now a Board Member of the ME organisation, so, between them, they have contacts and connections with ME organisations world-wide.
Dr. Ramsay’s book, “Myalgic Encephalomyelitis and Post-Viral Fatigue States: The Saga of Royal Free Disease” – admittedly, not the snappiest title(!), but a riveting read – is available from the ME Association. If you haven’t read it, I would urge you to do so.
I know many M.E. people have difficulty reading, as do I now – thank goodness for audio-books – but it’s only about 60 pages, and can be read in small chunks, which is how I read it.
Some people with M.E. are disbelieved, even by friends and family. If you are in this unhappy position, do buy Dr. Ramsay’s book – it will help overcome this disbelief!
It’s a tragedy that our good Dr. Ramsay died just before the roll-out of the Internet. How different things would have been for people with M.E., had he lived, and published his research on the online.
Now, he is being read and appreciated globally. How I wish he were still here to see the fruits of his labour. Thank you, Dr. Ramsay, and the ME Association.
Finally, I was delighted recently to see that the New Zealand ME Organisation posted OMF’s link to my cards and poetry on their Facebook page.
I don’t think I can reach out any further around the world now, without meeting myself coming back!
I was also delighted to see posts from the ME Association on the New Zealand Facebook page. Thanks to the internet, our ME community is becoming a global village.
Everyone is talking to everyone else and, with so many good people on our side, things will change for us. Heartfelt thanks to all the good people who are working so hard for us.
- The Saga of the Royal Free Disease by Dr. Melvin Ramsay can be ordered from ME Association head office or via the website shop. N.B. Orders may be delayed until the coronavirus lockdown is lifted, staff return to work and are able to post orders.
- Read more about The ME Association Ramsay Research Fund and the research that we are supporting.
- Read the ME Association Research Summary and understand the pathology of M.E.
- Have you heard about the new MEA feasibility study that will monitor activity in people with M.E. at home? It is being led by Dr. Nicola Clague-Baker from Leicester University, with colleagues from Oxford Brookes and Manchester Universities with Physios 4 ME. We announced it on ME Awareness Day last week.
ME Awareness Month – May 2020
The Lost Years
The ME Association
Ramsay Research Fund
We are a national charity working hard to improve the lives of people devastated by an often-misunderstood neurological disease.
We believe biomedical research offers the best hope to people affected by M.E. If you would like to support our investment then please donate to the Ramsay Research Fund.
Just click the image opposite to visit our JustGiving page for single donations or to establish a regular payment. You can even establish your own fundraising event.
ME Association Registered Charity Number 801279