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Recent activities

Run, Simon, Run!

Simon Patchitt’s Bristol 10k during ME Awareness Week was a great success. “It’s the first time I’ve been in any kind of race since sports day in 1994,”" says Simon, who crossed the finish line in 56 minutes and 38 seconds. “I really enjoyed it, even though I needed oxygen in the medical tent afterwards!” (As it turned out the nurse remembered him from school!)

Linda, Simon’s girlfriend, has had ME for almost 10 years. She explains, “Many sufferers (like me) are severely affected, but because they often can’t go out, no one sees them, so nobody realises how ill they are. It was a great opportunity to raise awareness about the impact of ME.” Linda and Simon collected £1,085 from the event — more than double their target. “We’re so pleased — thanks to everyone who sponsored the run.” Since the race, Simon has kept up the running and has entered the Bristol half marathon in September!

Dr Chaudhuri in Glasgow Cathcart

Dr Abhijit Chaudhuri, a consultant neurologist formerly of the Southern General Hospital in Glasgow, gave a presentation at the June 2010 meeting of the Cathcart ME Support Group in Cathcart Trinity Church Hall. The talk was entitled “Developments and advances in the biomedical research and treatment of ME/CFS”, and the audience of over 200, from all over Scotland, heard Dr Chaudhuri explore the science of ME/CFS and explain some of his previous work. Dr Chaudhuri has a long-standing interest in ME/CFS and is highly regarded by ME patients and groups throughout the UK. He is now consultant neurologist at the Essex Centre for Neurological Sciences, and is involved with the ME/CFS service at the Queen’'s Hospital, Romford, Essex.

Photos of the event can be seen here, and audio CDs of the meeting recorded by Cathcart Trinity Church are available using the Group’s order form (Word format). These CDs will be dispatched over the next few weeks and into September 2010. A collection was taken during the meeting, raising several hundred pounds for ME research.

Worcestershire Group collects for ME Research UK

Pauline and Mike Pearson and Warwick Davis (pictured right) of the Worcestershire ME Support Group, together with Steve Lund and Liz Jesper of the Solihull and South Birmingham ME Support Group, organised the recent Group collections for ME Research UK. A total of £466 was collected, £310 at Becketts Farm, Wythall on Saturday 29 May and £156 at Evesham Countryside Centre on Thursday 3 June 2010.

The Worcester group is very active, and its monthly informal gatherings are held in Worcester, Droitwich, Malvern, Pershore, Kidderminster and in Bromsgrove, under the auspices of County Co-ordinator Jill Pigott. Many thanks to everyone who supported them, and grateful thanks from all our team.

Martin’s Edinburgh Marathon

Martin Brown is not a saint or a regular charity fundraiser — his main aim in running the Edinburgh Marathon 2010 on Sunday May 23rd was simply to get fit! However, after a few weeks of training, he was persuaded by a friend (while standing on the terraces of the Leeds vs Spurs FA cup match!) to make his marathon run in support of ME Research UK.

He set up his Justgiving page and has so far raised £2,319.14, almost all of his ambitious target of £2,500. And you can still donate to the cause and help him reach his goal. Amazingly, Martin also runs the Redcliffe Farm Shop — “the new place for local food from the Yorkshire Coast” — and asked all his regular customers to give half of their loyalty discount to ME Research UK during ME awareness month. Grateful thanks from us all to Martin and everyone who supported him.

Annalisa’s ME Awareness Pyjamathon

To mark ME Awareness Week 2010, Annalisa McGorlick decided to wear nothing but pyjamas for 7 days! As she explains, “Our government puts £0.00 into biomedical research for this illness, but without financial backing research cannot be carried out and this life-destroying illness will continue to go untreated and believed by many to be a psychological/non-illness.”

So at the risk of being locked up, Annalisa did just what she set out to do, as the photo proves, and has so far raised £240 for ME Research UK. And her Justgiving page is still open for donations. Annalisa’s message to all her donors is, “Heartfelt thanks from myself and many of my friends who are too ill to contemplate even a small event such as this.” And many thanks from us to Annalisa for using such a great idea to support ME research.

Tribute Acts in Charity Concert

In February 2010 Amy and Sue Bakewell were interviewed by BBC Radio Leicester at the time when the Lynn Gilderdale case was in the media. Amy is very seriously affected with ME and has lived in isolation in her dark bedroom for 14 years. Following on from then, the radio presenter visited Amy and offered to organize a charity concert to raise funds for ME research, an offer the family couldn’t refuse.

The performances at the concert were all tribute acts: The Fib Four as the Beatles, Micky Vegas as Elvis Presley, and Cliff-As-If as Cliff Richard. They all gave a super evening’s entertainment at Thornton Working Mens Club. It was extremely well supported and raised £850 for ME Research UK.

And Sue explains, “Two days before the concert on May 12th, ME Awareness Day, BBC Radio Leicester broadcast its mid morning show from our village shop. It was great fun, incorporating interviews with customers, our local ME support group, and Amy. We were pleased to be helping to raise the profile of ME with this excellent publicity.”

New Borough Mayor chooses ME Research UK as a supported charity

At a ceremony on 19th May 2010, Hastings’ new mayor, Councillor Kim Forward, took up her post at the annual mayor-making ceremony. At the event, dignitaries were entertained by groups from Filsham Valley and Churchwood School choir, and by members of the White Rock Youth Theatre. In her speech of acceptance, Cllr Forward said, “I hope to bring energy and enthusiasm during my role. Hastings and St Leonards are beautiful places which have so much to offer and I will strive to promote the interests of the borough and its residents.”

Cllr Forward has chosen to support three charities in her mayoral year — the NSPCC, Care for the Carers, and ME Research UK. The decision to support an ME research charity was taken because her 14-year-old son has had ME for some time, and is now able to walk again although his recovery from the debilitating illness has been slow. Among the tributes to Cllr Forward during the ceremony was one from Cllr Kramer, who said, “Kim is a qualified teacher who has taught in a variety of local primary schools for more than 20 years and I have personal experience of her being warmly greeted throughout the town by former students of hers and their parents. Kim relates to all the people she meets with warmth and genuine interest in their well-being. These qualities will be invaluable in her civic role as mayor.”

We wish Mayor Forward a successful year in office, and send her our grateful thanks for choosing us as one of her supported charities.

London Marathon 2010

April 25th 2010 was Virgin London Marathon day — a great festival of fun for everyone involved (see the photos on the official website). ME Research UK has benefitted greatly from London Marathon runners in the past. In 2008, Robert Ogden, Madhi Choudhury and Ian Bottomley ran on behalf of the charity, as did Harvey Gurry and Matthew Fielding in 2009. And this year, we were honoured to have two champions who used their individual places to run on our behalf.

One of the runners was Dan Plant whose sister had ME some years ago but has since made a wonderful full recovery, so he wanted to help raise funds for research into the illness; and he says “After a lot of training, I made it on the day and gave it my best shot — something of a miracle in itself for someone who previously considered lifting a few pints as exercise.” And the other was James Albiges who over the last few months has seen the debilitating effect of ME first hand so wanted to raise money for a cause close to his heart; his aim was “to beat 4 hours and then retire gracefully!”.

Both did very well: Dan crossed the line in 4 hours, 41 minutes and 20 seconds; and James in 3 hours, 56 minutes and 37 seconds beating his 4-hour target!

Deep RiverRock Belfast City Marathon 2010

The 2010 Belfast marathon was on Bank Holiday Monday 3rd May, and over 18,000 runners were expected to hit the streets of the North, South, East and West of the City. Over the years the event has grown tremendously, and now includes such sponsors as Belfast City Council, Sport Northern Ireland, Aer Lingus, the Daily Mirror and Athletics Northern Ireland.

This year Paul Christie Jr (pictured) and Sam McIlwaine made the run for ME Research UK, and their training was egged on by the puppy (pictured below). As Paul’s mother Antoinette Christie says, “There is now much scientific evidence that the illness is a complex physical disorder of the nervous/immune systems, possibly with viral cause. Very little help is available on the NHS, and sufferers and their carers are usually left to cope on their own whilst their lives fall apart.”

Antoinette’s son David has now been ill for six years (read David's story here), but despite the harshness of the situation, Antoinette is determined to look on the bright side and is doing her best to raise awareness of the condition. Indeed, she was part of a ‘relay team’ running on the same day, consisting of her sister Jeanette, Chris Stewart, Mark Connelly and Daddy Paul, along with another ten volunteers.

Paul and Sam have already raised over £300, and our congratulations to them for their athletic feat, and our thanks for choosing to make it in support of ME Research UK.

Alan Hume and Friends Newcastle Concert

The Alan Hume and Friends gig is a bi-annual event — a much appreciated evening of good music, good company and super food provided by the Corner House, Newcastle upon Tyne. April 17th 2010 saw the most recent in the series, this time with Alan’s wife, Yvonne, in attendance as part of the trio consisting of Alan, Bob Lang and herself. Beverley Thompson, a student of the guitar and admirer of the series of fundraising concerts, has provided this report:

“Every single musician was cheered and clapped with encores being called for all night long. Three hours goes by in a flash — it is never long enough. The well known tunes and melodies reminded me of the halcyon days of my youth, and suddenly I am eighteen again. I felt really sad this time as the familiar melodies washed over me. I so admire Alan’s efforts to help the charity with funding, considering all the organisation and arranging he has to do — a most dedicated man in regards the cause.

“Alan and Yvonne and their friends work hard throughout the year to raise money for sufferers — one of whom is their eldest daughter. His musicians come from quite far afield and give freely of their time and their talents to collect money for ME Research UK. Not forgetting the wonderful sound system provided free of charge from the Cramlington Folk Singers club. Much appreciated, I’m sure! The standards of play are so high and many serious hours of practice must go into producing such a professional concert. This year I invited my Grainger Women Writers’ club and to a man (woman?) they were thrilled with the music. They have all vowed to return to the next concert, lining up already to be first in line for tickets as more people than ever attended this years concert.”

The concert raised £685 this year, with the proceeds of the raffle adding to the funds. Thank you Alan and Friends for another successful fundraiser! During the past three years £7,595 has been raised for ME Research UK from Alan and Yvonne’s events — an incredible amount considering the worldwide recession, and a tremendous achievement indeed. The next gig is scheduled for 9th October 2010 — but do remember, tickets go fast!

Go Penguins for ME!

This winter Liverpool was invaded… by penguins! As part of the official Go Penguins! campaign, more than 100 penguins were dotted around the city, including 13 at National Museums Liverpool’s venues. They were created by artists, schools and community groups and celebrated Liverpool’s unique sense of fun and self expression.

And one of the penguins is raising awareness of ME, and benefiting ME Research UK. Called “Look at ME”, the penguin is the creation of Helen Burnley, an experimental young artist who has ME/CFS and is based on the Wirral. The key message of the artwork is: “Look at ME. Do I look like I have an invisible disability? Across the country tens of thousands of people suffer from invisible disabilities. They look well so people assume that they are… but looks can be deceiving. Is it really fair that illness is judged on looks alone? This penguin challenges common perceptions.”

Read more about Helen’'s work on her website Creative Chaos Art.

The “Look at ME” penguin has been living in the Lady Lever Art Gallery. The money raised by the whole penguin campaign will go to the Liverpool Lord Mayor’s Charity Appeal, the World Wildlife Fund, Liverpool Unites and ME Research UK.

Lynda (and Priscilla The Plastic Duck) go North!

When Lynda Marney first got ME, one of her greatest regrets was not being able to go cycling, which had previously been a great pleasure for her. But after fighting back from the illness, in September 2009 she undertook a cycle ride, an adventure which took her from Fort William to Inverness — a gruelling 85 miles over some of the toughest terrain in Britain. As Lynda (shown in the photo) says, “I just love the feeling of riding my bike — the freedom, the sense of getting around, and the feeling of the cool wind on the face!”

The ride itself went off very well, although she was black and blue by the time she got back as the track of some of the route was challenging, and other parts very steep and physically demanding, but all of it spectacular. “I also felt exhilarated by the whole event, and a great sense of achievement,” says Lynda, “though the final day up the hill out of Drumnadrochit was a monster, and things got very, very, very wet.”

When Lynda and her brother arrived in Inverness, they were met by two representatives from the Inverness ME/Fibromyalgia Support Group, and they very kindly took the riders home for feeding and watering — an absolute Godsend and an act of real kindness and charity (the photo of the Inverness group shows just how wet it was). Other kind people helped along the way, including First Scot Rail which helped by providing the tickets to Fort William and from Inverness on the sleeper train; Lynda’’s brother, Colin Bishop, who gave loads in terms of time and money to go along on the adventure; and Lindsay Mackinnon from Ticket to Ride who hired the bikes at cost and was very supportive.

And all the way, Lynda and Colin were accompanied by Priscilla The Pink Plastic Duck sporting her own tiara and very swish ME Reearch UK t-shirt! Lynda’s Justgiving page is still open for contributions — and thank you Lynda from all of us for going on this great expedition and raising almost £1,200!

LiDBA Bike Ride 2009

The 19th annual LiDBA (Liphook and District Businessmen’s Association) bike ride is one of the biggest fundraising events in East Hampshire, with more than a thousand people riding for their favourite causes each year. Cathy Susans, a nurse from Haslemere and a very successful fundraiser, organised the LiBDA riders for ME Research UK again in 2009, and the presentation evening was on October 2009 at which many thousands of pounds were handed over to more than 60 charities benefiting from the event.

In total, £1007 was raised for ME Research UK, and a cheque was accepted on our behalf by Roger and Tracy Tayler, parents of Suzy who has been severely affected with ME since Christmas 2001 and whose story can be read here. Our grateful thanks go to Cathy Susans, and Tracy, Roger and Suzy Tayler for these fantastic annual efforts on our behalf. The photograph shows some of the riders after the first mile of the 26-mile LiDBA event, including Suzy’s mum Tracy and younger sister Sammy who are shown riding side by side out of Liphook.

Tony’s Great Yorkshire Run

On 6th September, Tony Sweeney completed the 2009 Great Yorkshire Run, a 10 km race held each year in Sheffield, starting at Arundel Gate in the city centre and returning via Hillsborough to Norfolk Street.

Tony was running for ME Research UK because his wife Claire has had the illness for a number of years. As he says on his Justgiving page (which is still open for donations), “My aim was in some small way to further the cause of this great charity and at the very least raise awareness of this illness.” On the day, Tony romped home in 1 hour 1 minute and 19 seconds (see his photo on the podium), an excellent time considering that it was his first ever run, and that the winner Eliud Kipchoge took a whole 28 minutes 30 seconds to get from start to finish!

Tony raised over £730 and has been amazed to receive sponsorship from Hong Kong, Singapore and Ireland, as well many friends in the UK. And his son was delighted with his Dad’s success, as the photo shows (and more lovely photos are on the Justgiving page). Thanks a million, Tony and Claire!

Record donations from The VegEPA for ME Scheme

The VegEPA for ME Scheme, through which every pot of Vegepa sold raises 50p for research into the illness, now has members across the world. The scheme was initiated and is organised by Lynne Kersh, who has cared full-time for her daughter, a long-term ME patient, and from the proceeds Lynne has just been able to present another donation to our charity. As Lynne says, “I’m absolutely delighted that during the life of the scheme we have been able to donate over £30,500 to ME Research UK. More is being collected every day towards our next donation — and the scheme now has some 4,500 members in 20 different countries.”

From the first donation of £1,200 in September 2006, the scheme has gone from strength to strength, climbing progressively over the three years to more than £30K (as the chart above shows).

The photo shows Lynne presenting a cheque to Dr Neil Abbot and Dr Vance Spence of ME Research UK after one of Vance’s talks on Biomedical Aspects of ME/CFS. Lynne explains, “It is always enormously uplifting to hear a presentation from the world of ME’s most distinguished experts, and great to see research moving forward.” Dr Spence, Chairman of ME Research UK, said, “We warmly welcome Lynne’s personal donation from her scheme — £30,500 is an amazing achievement. The role of the dietary therapies, including EFA supplementation, in bringing about symptomatic relief or resolution is an unexplored area of science, and we recognise that much more needs to be done to research the possible link between symptoms and supplementation — indeed, we would look favourably on applications from established academic researchers to carry out such work. And thanks to Lynne’s donation, and others like it, we have been able to action projects, such as the brain, liver and muscle project at the University of Newcastle, so we are extremely grateful to Lynne and all her members across the world.”

Isle of Grain Fundraiser

The Isle of Grain Disabled and Carer’s Group are very active fundraisers for charity in Kent, and this Summer they had a fundraising stall at their local fete, with proceeds of £110 going to ME Research UK. Joy Birdsey, a good Friend of MERUK (she is on the far left of the picture in the red cardigan and red shoes), was instrumental in organising event, and she says, “The weather was windy and it did not start to rain until about 4.15 pm, so they were very lucky on the day. Bill Nicholson was marvellous — he sat in his wheel chair having wet sponges thrown at him [centre of picture, with his friend Margaret Nelson laughing in the background and a flying sponge coming towards him] and the Disabled and Carer’s Group joined in later.”

As Joy continues, “The importance of this event was to help people understand ME and to show that very disabled people can raise funds and still have a useful part in society. One of the most important issues for all of us is that a definitive test for ME should be found, as until a scientific test is available we can never move forward with our case to the medical profession.” Our grateful thanks go to Joy and to all the members of the Isle of Grain Disabled and Carer’s Group for their wonderful efforts.

Simon’s Skydive down the North Face of the Eiger

To raise awareness and help fund further research into ME, Simon Overton is planning to skydive from the North Face of the Eiger on 31st July 2009. The Eiger is one of the most famous and written-about peaks in the world, and the battle to climb the North face (which towers over 5,000 feet) has captivated the interest of climbers and non-climbers alike since the time of the first attempt in 1934.

Simon has been battling illness for a long time. Following a viral infection, he was admitted to hospital with increasing symptoms, but was told that his condition was “all in the mind”. He recovered but relapsed while climbing at altitude in the Tien Shan Mountains, and back in the UK was eventually seen by Dr Julia Newton at the Royal Victoria Infirmary in Newcastle-upon-Tyne. She was able to demonstrate that Simon did indeed have problems with his autonomic nervous system. As Simon says, “Thanks to her intervention I am doing very well on the drug midodrine and have seen a massive improvement in my condition. As a driven and dynamic individual I am now able to move my life and career forward.”

Now Simon is determined to spark research into this forgotten illness, and so intends to tandem skydive jump down all 5,000 feet of the mountain — a dramatic and dynamic intervention indeed! You can start supporting Simon’s exciting venture by visiting his Justgiving website.

Rhiannon’s Skydive

Rhiannon Jones, who was 60 this year, wanted to celebrate by doing a sponsored skydive to raise funds for ME Research UK. After several cancellations due to bad weather, she finally made her dream come true on 31st May 2009 when she went WHOOSH and jumped from the plane. The photo shows Rhiannon at the moment of free-fall, and footage of the dive will soon appear on YouTube, so we can all follow it in real time.

As Rhiannon says, “I was thrilled that so many people visited my Justgiving page and that over £1,500 has been raised. To everyone, your kindness and generosity are greatly appreciated! The appeal will remain open for a few more weeks so if anyone else out there would like to make a donation they are very welcome.”

Cath’s Tattoo for ME Awareness Day

There’s an old Iban proverb from Borneo that says that “a person without tattoos is invisible to the Gods”. Well, Cath Roberts must be in the heavenly spotlight now since her ME Awareness Day 2009 event was to have a tattoo!

As an ME sufferer for over 11 years, Cath knows the devastating effect it has on lives and families. And her aim was to have a tasteful, feminine and floral tattoo design that incorporated the ME Awareness Week logo of a blue ribbon. Tattoo D-day was May 12th, and the venue was Chameleon Tattoo Studio in Lancaster (which donated £20 to Cath’s campaign). The photo, courtesy of the Lancaster Guardian 15th May 2009, shows Cath Roberts, her daughter Jennie Keighley, and tattooist Mark Goulding from the Studio looking very pleased with their efforts, as well they should. You can see the colour of the blue ribbon of ME Awareness Day used as the colour joining the flowers on Cath’s ankle, blue swirls to represent the ribbon, and three pink flowers.

As Cath says, “The ankle is healed up now and I’m none the worse, luckily!. I’m so glad I did this as £440 has been raised for the cause.” And there is still time to make your donations at Cath’s Justgiving page to give your support to someone now in the spotlight of the Gods!

Three Peaks of Yorkshire

Chris Langdon and his girlfriend completed the Three Peaks challenge on Sunday 3rd May 2009. Three Peaks of Yorkshire takes in the three highest peaks in Yorkshire — Pen-y-ghent, Whernside and Ingleborough — and the aim is to do the 25 miles within 12 hours. They did it in 9 hours and 52 minutes, exceeding the target time by 2 hours and 8 minutes.

Chris explains, “My mother was diagnosed with ME before I was born, and I am hoping to raise as much money for the research into ME so that someday there will be a complete cure.” This is the second event Chris has undertake for ME Research UK — the first was leg waxing in 2007 during which Chris gave up all his hairs in the cause of ME research — and his Justgiving page is still live and receiving donations.

London Marathon Heroes

As a fundraising event, there is no marathon in the world that comes close to the Flora London Marathon. One of the dominant images of the race is that of thousands clad in fancy dress, tramping the cobbles in support of charitable causes dressed as rhinos, football team mascots, giant trees and the like.

In 2008, we had three runners — Robert Ogden, Madhi Choudhury and Ian Bottomley — and in 2009 our two London Marathon runners were Harvey Gurry and Matthew Fielding. Both did exceedingly well: Harvey, of the Plymstock Road Runners, crossed the line in 3 hours, 15 minutes and 46 seconds; and Matthew in 4 hours, 24 minutes and 2 seconds.

Matthew was particularly happy the night before the big race as his fiancée made him a special meal. More of his photos can be seen on his Picasa web album page. Our grateful thanks go to Harvey and Matthew, whose efforts raised almost £1,600.

From Hilary’s sofa to your wallet

Hilary Muray can’t ascend Annapurna in a caterpillar costume, bicycle across the Sahara in a diving suit, run the London Marathon in a Superwoman outfit, walk 5 km or even 500 yards dressed as herself — because she’s too ill! So, she’s been asking people to sponsor her to lie patiently on her sofa for a day on 1 June 2009, and the response has been amazing, as her Justgiving fundraising webpage shows.

Hilary explains, “On that day it will be exactly eleven years since I was struck down with ME/CFS. The sofa is where I spend most of my time because I have so little energy. I’m mostly virtually housebound.” She continues, “They say there are up to 250,000 people in Britain with the illness, 25% bedbound or housebound — that’s 62,500 people, nearly two London Marathons’ worth of severely affected people… or 71 miles of end-to-end sofas.” The picture shows the VERY sofa where Hilary will spend her VERY special day.

Deep River Rock Belfast City Marathon

On 4th May 2009, Antoinette Christie and her husband Paul, son Paul, sister Jeanette and a few friends once again took part in the Deep River Rock Belfast City Marathon to raise much needed awareness about and funds for biomedical research into ME. As Antoinette says, ”There is now much scientific evidence that the illness is a complex physical disorder of the nervous/immune systems, possibly with viral cause. Very little help is available on the NHS and sufferers and their carers are usually left to cope on their own whilst their lives fall apart.”” Antoinette’s son David has now been ill for six years (read David’s story here) but despite the harshness of the situation, Antoinette is determined to look on the bright side and is doing her best to raise awareness of the condition.

The marathon was on Bank Holiday Monday 4th May, and over 15,000 runners hit the streets of the North, South, East and West of the city. The event has grown with the inclusion of new sponsors which now include Deep River Rock, Belfast City Council, Sport Northern Ireland and many others. Antoinette and the family have raised over £1,200 through their Justgiving page, and our Chairman Dr Vance Spence says, “We always say that the ME community punches above its weight, and Antoinette and her family have shown just what can be done by one family with the drive and verve to raise awareness of the illness. Their efforts deserve all our support.”

Sandie’s Great Manchester Run

Sandie Fisher completed a personal best (68.37 minutes) when she completed the Great Manchester Run on 17th May 2009, and smashed her fundraising target in the process, raising almost £2,000 with more still coming in through her Justgiving page. As she says, “It’s amazing, really. What can I say? Everyone has been so generous.”

The photo shows Sandie with her sister Laura (on the right) who is 24 and has suffered from ME for over four years, with an enormous impact on her day-to-day life. Sandie’s aim is to have Laura running the 10k with her as soon as she’s well — let’s all hope that’s just around the corner!

Rotary Shakespeare Half Marathon

On Sunday 26th April 2009, a fearless mother-daughter duo, Mary and Shonagh Hill (pictured in t-shirts), did a marvellous thing by running in the Rotary Shakespeare Half Marathon to raise money for both the 25% ME Group and ME Research UK. They undertook the daunting task of the half-marathon — a full 13.1 miles — because family member Sarah (Mary’s daughter) has had chronic ME for 19 years and during that period little money has been invested into biomedical research into the illness.

The family’s Justgiving page is still open for post-event donations, and both Mary and Shonagh did extremely well to get around the course in a good time; Mary crossed the finishing line in a lightning 02:27:48 while Shonagh was one second slower at 02:27:49. (We think they synchronised their times, don’t you? See the photo-finish photo!) Thanks to both, and their supporters, around £1,800 will have been raised, from which both charities will benefit. A great achievement and a wonderful day!

At the AGM of the Shrewsbury ME Group meeting in May 2009, Mary formally presented the cheque to Dr Vance Spence who had travelled down to give a talk on the science of ME/CFS.

Stunning Images

“The Citizen” newspaper (24th November 2008) printed an interesting article about Veronica Jones from Clearwell who turns her photographs into cards to sell for ME Research UK, while also helping other sufferers with online support groups.

Veronica has suffered from ME for over 12 years and for her the daily task of being able to sit up is almost impossible. As she says, “I can't even sit upright to use a wheelchair because it would be too difficult, and if I do too much then I get flu-like symptoms and get really ill. I can drive a bit as the car seat is more reclined, and can go a few steps from the car or kneel down to take photos.”

Veronica was diagnosed with ME in 1997, and was a teacher for the blind, a job she loved, and was devastated when she had to give it up. She loves photography and was a member of Coleford camera club before getting ill, so Veronica now finds that the best ways to help are to take photographs and turn them into cards to raise money for research, and she adds, “I also try to help other sufferers and help run an online support group (www.mechat.co.uk) which is invaluable especially for people who are housebound.”

The photographs shown are of ‘Clearwell Castle in Autumn’ and ‘Autumn Trees in Clearwell’, both taken by Veronica.

Fundraiser in Aid of ME Research

A charity fundraiser in aid of ME research was held in the Felons Club, Belfast on 17 October 2008. The evening was organised by Antoinette Christie —- whose Bebo page can be seen here — and the evening included a disco, charity auction and other surprises.

The photo shows one of Antoinette’s previous events during which a group of blue-haired people invaded Belfast.

Manchester to Blackpool Charity Bike Ride

On 13 July 2008 Chris Wilkinson took part in the annual charity bike ride from Manchester to Blackpool (and home to Skelmersdale) — a total of 100 miles — raising almost £200 for ME Research UK. The bike ride started at Albert Square in Manchester and continued along country lanes through Leigh, Haigh Hall, Preston, Inskip, ending at the Mirror Ball at the South Promenade in Blackpool where riders and friends could enjoy a barbecue, beer-tent and live music. Indeed, some even partook of a well-earned massage thoughtfully provided by volunteers!

The photograph shows Chris, resplendent in ME Research t-shirt, and many thanks to Chris and the family for taking on this challenge!

Lands End to John O’Groats Cycle

In May 2008, Rachel Bennett cycled from Lands End to John O’Groats — a distance of 874 miles, the greatest distance between any two points in mainland UK — to raise money for our charity.

Rachel was part of a larger group of cyclists (pictured below) all raising money for their favourite charities, and when her online donations via the Justgiving site were included, the total raised amassed was almost £3,300!

It was quite a trip, and the mid-way point was reached at Windamere where a sign marks the mid-point (437 miles to go either way). On reaching her destination, the mound near the John O’Groats Hotel marked the site where Dutchman John De Groot constructed his eight-door octagonal house in the early 16th century, running a ferry to Orkney charging 4d, a sum which became known as a Groat.

Thank you John for naming the spot — and thank you Rachel for reaching it on our behalf.

25th Anniversary of Aberdour Festival

The annual Aberdour Festival is ten days of celebrations with arts, crafts, song, dance, puppetry, sports and so much more, and the 25th Anniversary Festival 2008 was a landmark event. The organisers had created a broadly appealing programme of events, which included Eddi Reader, Albannach, Dorothy Paul, Henry Sandon of the Antiques Roadshow, and the popular ceilidh band Callanish. For classical music lovers, they ran a series of three concerts by young musicians from “Live Music Now” in St Fillan’s Church. Favourite events such as the arts weekend were still included, along with many new acts in the halls and hotels in Aberdour, including John Cairney returning to his favourite Fife village for “My Scotland Story” at the Woodside Hotel. The week-long, action-packed series of events for all ages included the Raft Race, Donkey Brae 7 and 2 mile runs, and the village market.

The photo shows Moira Robb and her husband Mike who hosted one of the arts and crafts venues presenting a cheque for £300 raised at the event to our Chairman Dr Vance Spence at our headquarters in August 2008.

Southend Half Marathon

In a magnificent run, Sarah Stone completed the Southend Half Marathon on Sunday 8 June in 2 hrs and 4 mins, raising over £1,800 for ME Research UK. The course went along Southend Sea Front and was a beautiful day — although very hot for the runners.

Sarah explains, “I wanted to raise money for the charity as ME is an illness very close to my heart since my brother, Matthew, has suffered from it for the last six years and now has it so severely he has been in bed for the last five years. I hope that the money raised will help with the ongoing research and ultimately to find a cure.” (Read Matthew’s story here.)

Sarah’s Justgiving page is still open if you wish to contribute after the event, and our warm thanks go to Sarah for 124 minutes of uplift for people with ME everywhere.

Presentation at New Horizons conference

Our New Horizons conference on May 6th had several highspots, but a major one was the presentation to Dr Vance Spence of a portrait! The watercolour had been painted by Moira Robb, who had been a professional portrait painter before contracting ME which has left her very severely affected with neurological and brain symptoms.

Dr Julia Newton presented the portrait to Vance at the end of her own keynote lecture, and as she explained, “It was Vance’s 60th birthday very recently, and I’ve been asked to present him with this portrait to honour this landmark lifetime event, but also in recognition of all his work on behalf of ME patients over the past 25 years. Many people with ME have known about the progress of the ‘secret’ portrait for a long time, but it seems secrecy has been maintained, and today seems the perfect time and perfect venue to present the final work, which Moira says should come from all ME patients.”

Moira says, “My aim was to capture the twinkle in his eye and his sense of humanity, and the painting is to say a big thank you for shining a light of truth on this illness which has taken away so much of our lives.” As Vance was unfortunately not able to attend the conference, he was given the portrait symbolically via a huge overhead-projected image; the real thing was presented later at a private ceremony.

Steve’s Tour De Force

Steve Cox loves cycling — indeed, he cycled from John O’Groats to Land’s End in 2006 (pictured) — and has just completed a tour from the north to the south of France for ME Research UK.

Steve’s wife, Rosie, has had ME for most of her life, and Steve’s wish is to see her well and touring with him saddle by saddle. Rosie explains, “Steve’s marathon cycle started on 24th May from Calais to Arras; by May 29th he had reached Tournas on his way to Tournon sur Rhone; and by 2nd June he had finally reached the Mediterranean at Montpelier. A long and hard slog, but he loved doing it.”

Steve’s Jusgiving website will be open until August if you want to contribute to thank him for his ’Tour De France‘.

ME Awareness Week 2008 in Northern Ireland

Antoinette Christie of Familyfights4me had a hectic ME Awareness week planning a series of events in Belfast designed to energise awareness of the illness that has severely affected her son, David (read more about him here).

The first big event was the Belfast Marathon on Monday 5th May, and Antoinette had teams in the Team Relay with five people in each team. Other events included a fundraiser in the Laurel Leaf Bar on May 10th, “Remembering the Children with ME” at Curley’s Supermarket on 12th May, and a collection on National ME Awareness Day at ASDA Shopping Centre. Excitingly, West Belfast Black Taxis has nominated Antoinette’s campaign to receive the money from its wishing well for the whole month of June 2008.

Thanks to Antoinette and the family for all their work for what has been a “rollercoaster” month — and a full compliment of photos of the month’s events can be found on Antoinette'’s Bebo page.

Presentation to the Cambridge ME Support Group

On Monday 5th May, the evening before our conference at the Wellcome Trust Conference Centre outside Cambridge, Sue Waddle visited the local Cambridge ME Support Group to give a powerpoint slide presentation on ME Research UK, its role, and current biomedical research projects.

The meeting at the Hilltop Carers’ Centre was attended by group members, families, carers and friends, and the hour-long presentation — covering issues such as funding, diagnostic issues and research projects on brain imaging, gene markers and vascular investigations — was followed by a question-and-answer session, and the presentation of a group donation towards MERUK’s research programme.

Rosemary Humby, committee member of the group, said, “We were absolutely delighted to have Sue Waddle from ME Research UK come and talk to our group — she is an excellent ambassador for the charity. It was a most enjoyable evening, and Sue gave us lots of interesting information; it was sobering, however, for us all to see just how limited MERUK’s research budget is, especially compared to that of UK cancer research charities! We’ll continue to watch the progress of their projects with great interest.” The group photo shows (L to R) Sue, Rosemary Humby and Linda Foley at the end of the meeting.

Rosemary and seven other members of the group attended the New Horizons conference on May 6th, the day after Sue’s talk, and helped greatly by organising and monitoring the poster sessions! So, a great thank you from Sue and the team to Rosemary and the group!

London Marathon Heroes 2008

As a fundraising event, there is no marathon in the world that comes close to the Flora London Marathon. One of the dominant images of the race is that of thousands clad in fancy dress, tramping the cobbles in support of charitable causes dressed as rhinos, football team mascots, giant trees and the like. By 6.30 pm on 13th April 2008, 34,420 runners had crossed the finish in The Mall, making the Flora London Marathon 2008 the third biggest in the 28 years of the event. And three of them were running for ME Research UK!

Our warmest congratulations go to Robert Ogden and Madhi Choudhury, and Ian Bottomley who coursed home within 13 minutes of each other, around the 4 hour mark — a tremendous achievement. The lads’ Justgiving webpages are still open for donations, and to date have jointly raised almost £4,000 for our charity.

Highlander Mountain Marathon

To raise awareness and help fund further research into ME, Simon Overton’s friends Jon Gay and Peter Ward ran the gruelling Highlander Mountain Marathon, a two-day event in the Scottish Highlands which started on Saturday 5th April 2008. Jon and Peter came third against stiff opposition from more well known teams, so this was an astounding result — and they finished the event still wearing ME Research UK vests. Jon said, “It certainly spurred us on knowing we were running for such a worthwhile cause.”

Simon knows what the illness is like. Following a viral infection, he was admitted to hospital with symptoms of weakness that increased on standing. He also had a number of other symptoms that showed central nervous system involvement. At the time Simon was told that his condition was “all in the mind”. He recovered, but climbing at altitude in the Tien Shan (The Sky Mountains, one of the world’s biggest and highest mountain land on the south of Central Asia), he relapsed and was told by a neurologist in the Kazakhstan capital Almaty that he had a problem with the blood supply to his brain.

As he explains, “On returning to the UK, I faced the disbelief that many people with Myalgic Encephalomyelitis encounter from doctors. I continued to be severely intolerant to exercise with numerous relapses and hospital admissions, but with the assistance of Prof. Terry Daymond, Dr Byron Hyde and Dr Vance Spence, I was eventually seen by Dr Julia Newton at the Royal Victoria Infirmary in Newcastle-upon-Tyne, who has received a start-up grant from ME Research UK to investigate the link between orthostatic symptoms and ME. She was able to demonstrate that I did indeed have a problem with his autonomic nervous system.”

At present, Simon is awaiting surgery later in the year to correct some of the damage to his autonomic nervous system, and says that “this is one success story that would not have been possible without the work of ME Research UK”.

Jon Gay (pictured) who ran the Highlander Mountain Marathon was the man who single-handedly helped organise Simon’s rescue after his collapse at altitude. Jon and Peter have created a Justgiving page so people can donate towards their efforts — they say that donations are most welcome!

TICR Journal Club

The Institute of Cardiovascular Research (TICR) at the University of Dundee holds a regular journal club for researchers and clinicians to discuss new research, and on Friday 28th March the subject was ‘Chronic Fatigue Syndrome: New Paradigms’, sponsored by ME Research UK. Presentations by Dr John Dick, Dr Gwen Kennedy and Dr David Newton were followed by a lively discussion. The meeting was a good opportunity to educate a broad audience about clinical and research aspects of ME/CFS.

Fundraiser for ME research in Belfast

Saturday 27th October was the date for Antoinette Christie’s fundraising night at the Devenish Arms, Belfast. Over 500 people came for the night, and the evening was opened with a song from Andrea Hanaway, followed by a few opening words from Dr Vance Spence, Chairman of ME Research UK, who had come from Scotland with his wife to support the event and say thank you to Antoinette and the family. Councillor Bernie Kelly, the Deputy Mayor of Belfast (pictured with Vance), was a distinguished guest.

As she said, “I attended this fundraising event to help raise awareness of ME, which has affected Antoinette’s son, David, and stripped his young life of everything he once took for granted. I was saddened to hear about the lack of support for people like David and his family and pledged to help the family access services.”

Entertainment was provided by the compere for the evening, Citybeat presenter Robin Elliot, followed by Michael Persell (as Neil Diamond), Tony Ajir (as Lionel Richie) and Bernard Tohill (as Joe Dolan), and the revelers spent the remaining hours dancing the night away with DJ Pado, and more songs from Andrea Hanaway!

As Vance says, “All of us at ME Research UK would like to add our voices to the congratulations to Antoinette for the marvellous evening. We were impressed by the energy and drive that Antoinette and her family and friends had put into it, and particularly moving was the concern of everyone there about the biomedical predicament of her son; like so many others, the family seems to have been left to cope as best they can. As Antoinette says, there should be a proper ME clinic in Belfast putting priority on biomedical investigation, and a dedicated ME nurse who can visit the housebound.”

© 2010 ME Research UK — Charity Number SC036942