ME Research UK — Energising ME Research

Home > Support us >

Recent activities

Rare Oul’ Times in Newry

In the play, The Rare Oul’ Times, two of Ireland’s most outrageous and notorious drinkers and literary figures, Brendan Behan and Patrick Kavanagh (played by Oliver Moore and Ken McElroy who are pictured), discuss their successes, failures and love lives in 1950s Dublin. The play, performed by The Nomadic Theatre Company, has been a great success at home and abroad, and September 2011 saw a special performance in aid of ME research in Newry Town Hall.

The event was organised by Chairman Malachy Byrne and the members of the Newry and Mourne ME/Fibromyalgia Support Group. As Joan McParland explains, “We raised £2,100 for ME Research UK’s research, and had a memorable night’s theatre that sent the audience home with a tear in their eye and a smile on their lips.”

Veronica’s Half Marathon

Along with 15,000 other runners, Veronica McMahon took part in the Cardiff half marathon on 16th October 2011, the biggest road race in Wales. She was running for our charity because a close family member has been suffering from ME for over 15 years now. As Veronica says, “She is housebound and if she exceeds her limited ‘energy ration’ even by having visitors longer than an hour or so, she relapses with flu symptoms and pain and it takes days, weeks or even months to recover her former energy levels, during which time she cannot have visitors at all. The neurological illness ME is not simply fatigue.”

On her Justgiving page – which is still open for donations – Veronica has raised almost £1,000, a tremendous achievement – and the photo shows Veronica after the marathon showing the family her medal.

From Monmouth to St Davids

Gwyneth Hopkins is a stalwart walker who has undertaken several treks for charities, including ME Research UK, over the past few years. As she says, “I love the outdoors, and am grateful to be able to explore the countryside as I suffered from ME for five years (at first bed-bound, then in a wheelchair). I have made a complete recovery and have been well for over two and a half years thanks mainly to a variety of complementary therapies and great family support.” Gwyneth has a website which explains about her illness, her recovery and her walks for charity.

From 11th to 20th June 2011, Gwyneth walked for ten days from Monmouth on the English/Welsh border to St Non’s chapel near St David’s in Pembrokeshire. The walk was almost 150 miles, and Gwyneth carried a 14 kg pack including camping equipment, and stayed on small farm camp sites along her trek. To date, Gwyneth has raised £655.60 through her Justgiving page, but the site is still open for donations. Thank you to Gwyneth and her supporters for a sterling effort.

Trivia Quiz — win £30

Jane Hurst’s annual charity trivia quiz accepted its final entries for 2011 at the end of June, and if you were one of the winners of the £30 grand prize or organic chocolate runner-up prize, then congratulations! As well as being great fun to do, all the proceeds went to ME Research UK and the 25% ME Group.

Many thanks to Jane for all the hard work she put into this year’s quiz, and we’re already looking forward to the next one!

Great Salford Swim

The British Gas Great Salford Swim is an annual one-mile outdoor swim through a spectacular location — the rejuvenated docklands of Salford Quays. In 2010 it attracted 2,000 participants of all swimming abilities, from first-timers to Olympic champions, and was covered live on TV as part of Manchester’s big day of sport.

Taking part in this year’s race was Alison Etheridge who undertook the swim on behalf of ME Research UK, and on 15th May she powered her way through the quays in great style. Alison’s mum has suffered from ME for over five years, so she believes that something has to be done to further biomedical research into the illness. So thank you Alison for making your valuable contribution.

Summertime Quiz

Ian Steven is a quiz master extraordinaire who, for many years, has been formulating and distributing his own quizzes on behalf of a plethora of charities. As he says, “Creating quiz questions is a hobby of mine, but the great thing is to see money going to good causes from something I enjoy.” Although based in Scone, Mr Steven’s mailing list stretches across the UK, and he now does four to five different quizzes every year for different worthy organisations.

ME Research UK was the beneficiary of the quiz in the Summer of 2011, and the photo shows Mr Steven presenting a fistful of cheques to Dr Neil Abbot, totalling £437. As Neil said, “Our charity came to Mr Steven’s notice when the Perth ME Group had a stall in the local library during ME Awareness Week. It shows what awareness raising can do, and we are tremendously grateful to the local ME group, and to Ian Steven for the very successful outcome.”

Belly Dance Halfa

Lynne Chapman teaches belly dance and organises a Belly Dance Hafla every six months, donating the profits to charity. And, in June 2011 in Rugby, she hosted the Benn Hall Summer Hafla for ME Research UK, raising £380 during an evening full of dancing and fun. Lynne explains, “I have had ME since I was twelve, and when I started to learn to belly dance I could rarely make it through a whole class, so I sat down and watched quite a lot and learned. I still have the illness and hate the fact that I cannot do as much as I want to, but my quality of life is so much better since finding this dance. I now have a career (which is in my opinion the best job in the world), and my body is a lot stronger.”

Lynne’s stage name is Fulya, and she is now an aficionado of belly dance (as her website Kookiekaftan explains). “The wonderful thing about this dance is that you don’t need to be of a certain height, weight or age to do it, it looks beautiful and graceful on every size and shape. Many dancers use a coin belt or chain, which represents a dancer’s dowry – before there were bank accounts dancers used to sew the coins they were thrown for their art onto their clothes for safe keeping; when a dancer was rich enough she could take a husband. The weight of the coins helps you to locate your hips to shimmy and move them better,” she explains.

Dr Judy Mikovits in Northern Ireland

On 22nd May, Dr Judy Mikovits’ plane descended dramatically from the sky into Belfast. She had come at the invitation of Joan McParland with the help of Antoinette Christie (both introducing Judy in the photo) to give a talk on the work of the Whittemore-Peterson Institute of which she was Director of Research until recently.

To one of the largest audiences ever seen at an ME event in Northern Ireland, Judy gave a presentation entitled “Clinical implications of XMRV/HGRVs in ME/CFS” in which she described XMRV, her findings in ME/CFS patients, and associated issues. After the lecture, there was a long question and answer session, in which Basil McCrea, Chairman of the NI Legislative Assembly’s University and Higher Education Committee, took an active part. Fortunately, one of the participants has produced an excellent pictorial summary of the event.

Two celebration cakes (donated by Hugh Boyle, the vice-treasurer of the Newry and Mourne ME/Fibromyalgia Support Group) had been baked to mark the event: one for ME Research UK and one for the Whittemore Peterson Institute. Joan McParland summed up the event by saying, “Judy is an extremely warm human being and willing to do anything she can to help, and it was a delight to be able to have her here to give such a wonderful talk.”

Clwyd ME Support Group Conference

The Clwyd ME Support Group was founded by committed campaigner Barbara Turnbull after she developed ME in 1988, and is now one of the most active local support groups in the country. Each year, the group hosts an annual conference in Clwyd, and in June 2011 the main speaker was Sue Waddle from ME Research UK (pictured far right), who spoke about the charity, its current research projects and activities, and the many issues surrounding the illness. Occupational therapist Lynne Williams also gave a short presentation on her role specialist ME/CFS team in Herefordshire, and this was followed by a lively question and answer session. The meeting was opened by Alyn and Deeside MP Mark Tami who takes an active interest in ME and is a strong supporter of the Clwyd group.

As Sue summed up the meeting, “I received a very warm welcome from everyone I met in Wales. It is inspiring to see such an active local group who persevere despite this illness, and the involvement of the local MP was a particular boon.”

Great Ocean Road Half Marathon

The Great Ocean Road Marathon took place at Apollo Bay, south of Melbourne, Australia on May 15th 2011, with three runners taking part for ME Research UK: Chris McIntosh, Ben Holdsworth and Ryan Patrick Kelly (pictured). The guys’ friend, Joe Hallett (who recently did a sky-dive over Kent for our charity and whose sister Amy has had ME for several years), was also due to run but had to return home to England early due to tragic circumstances. However, his three friends very kindly took up the cudgels on our behalf despite only having two weeks to prepare, raising over £2,200; their Justgiving page remains open for donations.

Joe was travelling around the world and was in Australia when he got the tragic news that his best friend James Kourzaris had been shot in Sarasota, Florida on 16th April. James’ family and friends have since set up a charity called Always A Chance in memory of the two men killed; its aim is to change the lives of young people at risk of being involved with violent crime.

Running South Korea

The Seoul International Marathon 2011 took place on 20th March, and one of the runners crossing the finish line at Jamsil Olympic Main Stadium was Julie Maycock, running her first marathon on behalf of ME Research UK. Julie, who is teaching English in South Korea, trains at the Gwangju Running Club, and was inspired to do something for ME research by the experience of her childhood friend, Amy.

In 1994, both were 15 years old and about to sit their GCSEs, with the world at their feet. Suddenly, things changed for Amy when she developed ME, becoming so ill that she was bed-bound in a blacked-out room. In the 17 years since, Amy has remained ill and house-bound, though she has recently started to improve. Julie says, “I can’t begin to imagine what it must be like to have your life on hold, hoping that one day you’ll be well enough to lead a ‘normal’ life.”

Julie completed the marathon in a fantastic 4:24:26, raising almost £650. Her Justgiving page is still open for donations, and you can read more about her Korean and other adventures at her interesting blog. Thank you, Julie, for running your first ever marathon in support of both Amy and ME Research UK.

Talk in Sheffield

Saturday October 9th 2010 was the AGM of the Sheffield ME Group and guest speaker was our Chairman Dr Vance Spence who gave an hour-long talk entitled “ME/CFS research — today and tomorrow” which included recent developments on XMRV and research on children with ME/CFS.

Click here for a summary of the talk in pdf format, 721 KB.

The venue was the The Circle in Rockingham Lane, Sheffield, which is the home of the local group, and the lecture theatre was full of members and their families and friends. Vance was accompanied on his journey from Perth by Robert McRae, a Trustee and co-founder of ME Research UK, and both were presented by Ute Elliott (pictured) with a cheque for £343 raised on the day. As one of the supportive emails afterwards said, “I attended the excellent and approachable talk on Saturday in Sheffield… Thank you for explaining things so well and making a complex subject approachable.”

Double skydive for ME research

May 15th was a dramatic day in Maidstone, because Sam and Joe Hallett descended in a 10,000-ft sky-dive over Kent for ME research during ME Awareness Week. Their sister, Amy, who has had ME for five years takes up the story: “It was a very long day for them both as, due to cloudy weather, they had to wait until after 4 pm until the jump could begin. But they said it was worth it and loved the experience, although they were both indeed very scared, and Joe actually has a fear of heights but overcame it by thinking of me being so ill.”

Sam and Joe managed to raise an amazing £1,588, surpassing their target of £1,000, mainly via their Justgiving page where the messages and donations spurred them on. Also, Amy kept singing, texting and Facebooking them with, “I believe I can fly”, the song by R Kelly which helped them — and they actually sang this song when they jumped, so it is the family’s special song now. Amy continues, “When they landed they both said it was the most fantastic experience and wanted to do it again — their exact words were ‘awesome’, ‘breathtaking’, ‘brilliant’. Sadly, I was not well enough to travel to join them, but I got to watch it all on the DVD of their jump and live their experience. I am incredibly proud of them and love them very much.”

Walled Garden visit

Two great supporters of ME Research UK visited on 17th September 2010 for a meeting, afterwards whisking Dr Vance Spence (centre) off for lunch in the Walled Garden, a local tourist attraction based at Pitcullen House in the grounds of Murray Royal Hospital near the historic Scone Palace.

Iain Lee (left) and Andrew Gardner (right) have been firm supporters of the charity for many years, and have arranged marathon runs, football collections and collection boxes placements on our behalf. Both are keen members of the Scottish Parliament’s Cross Party Group (XPG) on ME which is presently discussing proposals for the new Scottish Good Practice Statement on ME/CFS, a document which aims to provide general practitioners with guidance that can be used to assist with the differential diagnosis and clinical management of patients.

Lovely to see you, Andrew and Iain! It's always a great pleasure to have Friends of ME Research UK visit the charity.

Cakes in Perth

Selina and Chris Wilkinson, who were on a fortnight’s holiday in an idyllic secluded cottage in Scotland, popped into our headquarters at the end of August 2010, bringing a box of cakes! Long-time supporters of ME Research UK, Chris had undertaken the 100-mile Manchester to Blackpool Charity Bike Ride for us in 2008, and Selina who requires a wheelchair for her ME has been passionate in her belief of the need for research.

The photograph (taken after scoffing the cakes) shows them both, with Dr Neil Abbot, in the garden of the Gateway Centre in Perth. They had been particularly impressed with the landscapes of Tayside and Fife, and had had a wonderful time touring around. Thank you Selina and Chris for dropping in to brighten up the day!

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.”

© 2011 ME Research UK — Scottish Charitable Incorporated Organisation No. SC036942