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BUPA Great Edinburgh Run

The BUPA Great Edinburgh Run, a 10 km road race, which took place on Sunday 6th May 2007 attracted 8,500 participants from every corner of the UK and every postcode in Scotland, bar the Outer Hebrides. Distance runner Liz McColgan was running for Leukaemia Research, and Ben Connolly (pictured) was running for ME Research UK, and was cheered on by his wife Donna, a member of ME Support Fife. After gathering in the sponsorship money, Donna found that £380 has been raised — so congratulations to Ben, and many thanks!

A sizzling ME Awareness week in Belfast

Paul and Antoinette Christie were on the march in Belfast to raise awareness of the illness that has severely affected their son, David. The local events, which coincided with ME Month, were organised by the family and friends in Orchardville on May 8th 2007, and included a traditional music night in the Fort Bar. Then, on May 9th an ME Awareness Day was held at St Mary’s Grammar School on the Glen Road; on May 11th, six local men had their hair shaved to raise money; and a further ME Awareness Day was held at Asda Westwood on May 12th. Not only that but on May 13th sponsored spin cycles were held in the Falls and Whiterock Leisure Centres. “We hope to raise as much money as possible,” said Antoinette. “Every day for David is like a month. We want to raise awareness about how severe this illness is, yet there is no money from the government for diagnostic tests.” Antoinette has also planned a huge event which is set to take place later this year. A ‘Stars in their Eyes’ event will be held at the Devenish Complex on October 27th. A table for ten at the event costs £50, and anyone who would like to help Antoinette with her fundraising efforts can contact her on 07809 370811. All money raised will go towards researching the illness.

Stoneball 2007

April 14th 2007 saw a most remarkable occasion — the StoneBall event. This formal, black-tie ball at the Royal College of Surgeons of England was organised to raise money for Matthew Stone, a young man in his twenties who suffers from chronic myalgic encephalomyelitis (ME), and to highlight this extremely debilitating and increasingly common illness. Matt’s family and friends have been raising awareness of his plight, and have in the past organised a series of fundraising events — including a charity festival in aid of Matt’s Appeal, a Fun Sports day, and a London to Brighton bike ride. You can read more about Matt’s story here.

For the Stoneball night, 318 people gathered for a champagne reception, followed by a 3-course evening meal with wine and chocolate fountain (see pictures). After speeches, which included some information on ME/CFS and the work of ME Research UK, there were raffles and auctions, including a handbag auction (in which a signed £5 is placed in the bag by the people who want to win it) which alone raised £1,050! Everyone loved the 11-piece jazz band, and the ski-jump-shaped ice model, through which liquid flowed, was a star attraction. As the organisor, Ross Coomber, said, “The night was very successful, everyone enjoyed themselves, people learnt more about the illness, and we managed to raise a bit of money as a bonus — the final amount should come to several thousand pounds!”

Tom and Paul’s Bath Half Marathon

Hooray! Tom Whittingham and his friend Paul Lannon finished their Bath Half Marathon on Sunday, March 25th 2007, coming in at 1 hour 44 min and 1 hour 54 min, results which delighted them both. On the day, they were helped along by all the support they'd received from their individual sponsors and through their Justgiving sites.

Visit Tom’s site and Paul’s site.

Tom’s sister, Naomi, has had ME for over 17 years, and it has had a great impact on the life of the family. As he says, “ME has completely taken over Naomi’s life: she was a happy 13 year-old, whose life was literally taken away from her. She is housebound, disabled, and relies completely on full time care from my mother.” The photo shows Paul and Tom after the race — studies in black, white and blue — and they say that, after matching company sponsorship is taken into account, the total raised should be around £2,300, a spectacular result for which we send our grateful thanks!

Aunt Margaret’s Collection

Aunt Margaret — great Auntie of David Christie — went on a collecting spree round her local shops in Belfast, and amazingly raised £400 for our research programme. The photo shows Auntie Margaret with her niece, Antoinette, holding some of the money raised.

You can follow Aunt Margaret’s example by collecting (or shopping) in Belfast. Read recommendations, reviews, tips and photos of Belfast posted by real travelers and locals at the Belfast Travel Guide.

8th International IACFS Conference

The 8th International IACFS Conference on Chronic Fatigue Syndrome, Fibromyalgia and other Related Illnesses (formerly AACFS) was held at Bahia Mar Beach Resort, Fort Lauderdale, Florida, USA in January 2007, with a clinical/research conference from 12 to 14 January and a patient conference from 10 to 12 January.

ME Research UK’s Chairman, Dr Vance Spence, gave a presentation on ‘Inflammation and arterial stiffness in patients with ME/CFS’, presenting exciting new data on arterial stiffness and high sensitivity C-reactive protein. The conference was an excellent opportunity to assess the current state of ME research, and Dr Spence says, “I hope to be able to convey some of the excitement I feel when I see new projects and fresh data coming on-stream.”

The professional conference focused on pathophysiology and treatment, and sought to unravel the enigmatic inter-relationship of the various immunologic, neurologic, endocrinologic and cardiovascular abnormalities. There were also lectures on the latest research, newest clinical protocols and where research can go from here.

Click here for complete conference information.

Caroline and Steph’s 20K Cycle

On 30th August 2006, Caroline Hilton and Steph Henshaw went for a bike ride — not a saunter round the park, but a 20K cycle ride around Richmond Park! Caroline’s mum has been suffering with ME for over 20 years now, and has lived with the illness through the debates of the past decades. As Caroline says, “For many years, there was a debate as to whether it was actually an illness at all. But over time, bodies including the WHO, the Department of Social Security, the Department of Health, and a variety of public bodies have come to agree that it is real.”

Incredibly, from their Justgiving page and offline giving, Caroline and Steph have raised £1,105.51, and they had a wonderful time. “We know it seems like everyone’s doing some kind of hop, skip and a jump at the moment,” says Caroline, “but this is something we’ve been meaning to do for a very long time and it’s been a great experience.”

Old Time Music Hall

Ladies and Gentlemen! Phenomenal felicitations and splendidly stupendous salutations are well deserved by the Victory Players of Balcombe who donated the profits from their Old Time Music Hall evenings in October 2006 to ME Research UK.

Enthusiasm, entertainment and enjoyment were the hallmarks of the bubbling Old Time Music Hall, and leading this rowdy extravaganza was the ebullient Chairman Rodney Saunders, full of excruciating introductions and innuendos, oozing bonhomie, and egging the audience on to even greater excesses. The involvement of the audience was an essential ingredient in the show’s success. They joined in the choruses with gusto, shamelessly shouting ribald insults, or ‘oohs, aahs and boos’ when the action merited such vulgarity. The gorgeous Can Can girls were received with enormous enthusiasm and later rewarded ardent fans with stolen kisses.

There was the inevitable over-acted Victorian melodrama featuring a wicked landlord (boos), drunken guardian (oohs), fair maiden (aahs), and rescuing hero (cheers). The evening ended with a bravura performance by Hugh Bottomly in full highland kilt singing ‘The Sergeant Major’s on Parade’, followed by the crowded Victory Hall erupting in a deafening rendition of ‘Rule Britannia’.

The photo shows Rodney and Barbara Saunders presenting the cheque for £1582.69 to Dr Vance Spence at the Gateway. Their son, Robert, who designs the posters, pictures, programmes and website for the Victory Players, has been very ill with ME for 15 years, and the family would dearly like to see a breakthrough in the diagnosis and treatment of the illness.

Antoinette’s Fundraising Blitz

Paul and Antoinette Christie had a marvellous idea: to hold a series of fundraisers to raise awareness of the illness that has severely affected their son, David. “I don’t believe there is enough medical awareness of ME — some of the medical profession don’t even recognise the illness — so we decided to hold a series of events to raise money for research.” says Antoinette.

It was only three years ago at the age of ten that David lifted the national title for Jujitsu, but these days the teenager faces enormous difficulty getting out of bed. As Antoinette says, “David was like any other teenager at school, but he took a viral infection and started to become very ill. He was in and out of hospital for a month getting test after test but they all came back ‘negative’, and it was another year before a diagnosis was made. Now in constant pain and always exhausted, David has not returned to school since then, and was diagnosed with ME in October 2005.

“He now spends his time trying to cope with considerable levels of pain seven days a week, relying on a steady staple of medication to stem the pain. This has been a terrible shock to the whole family, especially since a similar thing happened to David’s elder brother. David was always such an outgoing lad, he was a scout and very outdoorsy, but now he doesn’t leave the house.” 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 first charity night was held at Davitt’s GAC in June, where a disco was held alongside a raffle of goods donated by local businesses. Then, in the following months, Antoinette continued her campaign, approaching local shops directly for donations — and a range of businesses responded, including the Indian Ocean Restaurant and Creighton’s garage. And then, Antoinette’s friends and family made up blue ribbons and sold them in the local chemists! And the final fundraiser was in the Devenish Arms Complex in Belfast on November 4th which was a pull-out-all-the-stops bash with Elvis impersonator Jim Brown, and an auction including Steve Collins-signed boxing gloves and Lionel Richie tickets.

The evening was a tremendous success — see the photo of Antoinette, Paul and David’s elder brother Paul above — and the family are keen to thank everyone who attended: “We’d like to thank all those who donated gifts for our ballots and auction, to all those who sponsored tables for the night (Arrow Travel, OK Windows, Midas Touch, Mane Stop, Ciseaux, L’egance, Isobell’s, Maria Theresa, Whiterock Leisure Centre, Curley’s and Hewitt Meats), and of course Jim in the Devenish. And to the people with ME who attended the night.”

From the great variety of events organised by Antoinette, Paul and the family, raised over £5,000 for a range of ME oganisations, including over £3,000 for ME Research UK. The photos show the presentation of the cheque by Antoinette and Paul at the Devenish Arms Centre, and the reception of the cheque by Dr Vance Spence and Priscilla Wares at our headquarters. As Vance said, “We always say that the ME community punches above its weight, and Antoinette and her family show just what can be done by one family with the drive and verve to raise awareness of the illness.”

Mount Kilimanjaro Presentation

On Friday 1st December 2006, Dr Richard Taylor, MP for Wyre Forest and Vice Chair of the Parliamentary Inquiry on Scientific Research into ME, collected on behalf of ME Research UK a cheque for £2,250 from Simon Winnall and Ian Winstanley. Dr Taylor was guest speaker at a meeting of the Worcestershire ME Support Group in the Library in Kidderminster, and kindly agreed to accept the cheque on our behalf at the meeting.

As Jill Pigott, co-ordinator of the Worcestershire ME Support Group said, “We were delighted to help organise the presentation. Simon’s mother Rosemary and I represented our support group when we spoke at the House of Commons in April before the Gibson Inquiry panel put together to study aspects of ME. So, it was logical that the family’s connection with the Gibson Inquiry and their support of ME research should have been brought together in this way.”

In September 2006, Simon Winnall and Ian Winstanley had embarked on a great expedition to North-East Tanzania to climb Mount Kilimanjaro, the highest peak in Africa at 5,895 m. Simon and Ian funded the trip themselves, so all money raised could go towards the ME Research UK research programme.

Simon’s sister, Nikki Winnall, has suffered from severe ME for the last 8 years and is currently bed-bound with bouts of total paralysis, hence their wish to use the expedition to raise funds for research. As Simon says, “When Nikki was fit she used to love the mountains; she once walked from North to South Wales to raise money for Great Ormond Street Hospital.” You can read more in the recent story, ‘Mountain mission inspired by ill sister’ which appeared in the Kidderminster Shuttle.

Their climb took over 6 days, with the main challenge coming from the extreme altitude since there is only half the air to breath at the summit compared with sea level. Simon made it to the summit of Kilimanjaro and returned in mid-September. He was enormously lucky that he had no altitude sickness, but he had to help carry members of the team down from the summit ridge.

Only half of his group made it to the summit, however, indicating what a serious undertaking this venture was. Simon says, “It was hard going and I am very pleased to have made it. Although I have done quite a lot of mountaineering in the UK, this was much harder than I thought it would be. We have had wonderful support from sponsors and if ME research can benefit from the money raised, it will have been very well worthwhile.”

As our Chairman, Dr Vance Spence, says, “I was a mountain climber and mountaineering club member myself before I got ill, so I do recognise what Simon and Ian went through to do this on our behalf. I am full of admiration for them, and send them our warmest thanks for their terrific achievement.”

Fiddler On The Roof

Broughty Ferry Amateur Operatic Society has just completed its week’s run of the popular musical Fiddler On The Roof at the Gardyne Theatre, Dundee, to packed houses and great acclaim. The show tells the story of milkman Tevye and the Jewish village in which he lives in Tzarist Russia in the early 20th century. The production also featured ME Research UK’s own Communications Officer, David Newton, sporting a newly grown beard as Motel the tailor. The society was kind enough to allow ME Research UK to make bucket collections on each night of the show, which yielded over £300 from the generous audience to benefit continuing research into ME/CFS. Congratulations and many thanks to all at Broughty Opera.

Swimming with Dolphins

Edwina Evans, Worcestershire ME Support Group’s Bromsgrove Area Contact, is just back from Florida following her swim with the dolphins on Monday 20th November 2006 to raise money for the Worcestershire ME Support Group and ME Research UK. On arrving back, she said, “It really was a wonderful experience; I spent the next 23 hours in bed but it was worth it.” Edwina has suffered with ME for 15 years, and this has been a particularly bad year for her. Three years ago she won the accommodation for a holiday in Florida which she took up.

It had always been one of Edwina’s ambitions to swim with the dolphins, so she booked a swim at Discovery Cove, Orlando. She says “I am not a very confident swimmer as I am scared of water, so this was going to be a really big challenge. I knew that this would take a lot of pacing and probably a lot out of me, but I thought I could put the experience to good use by raising money for ME research and our local group.”

Donations can still be made via Edwina’s Justgiving web page; and to support the Worcestershire ME Support Group, a county-wide group that holds monthly meetings in Bromsgrove, Kidderminster, Malvern, Pershore and Worcester, please use the form:

Edwina Evans sponsorship form (pdf 10 KB)

Double Run for Research

Matt Snelling completed an astonishing double recently when he ran for ME Research UK in both the Great North Run on 1st October 2006, and then the Great South Run on 22nd October 2006. And through the generosity of his friends and supporters, he’s raised over £1,300 which could be eligible for matching corporate funding. The photo shows Matt braving the blinding rain in his ME Research UK t-shirt during the Great South Run.

As Val, Matt’s mother, says, “It was raining like I have never seen rain in my life, but Matt came through like a champion. It means so much to us, as Matt’s sister, Rebecca, is now bed-bound with ME, and we so wanted to do something to try to make a dent in the illness.”

A loud thank you to the whole family from all of us — to run one marathon is something, but to run two 21 days apart is an amazing achievement!

LiDBA Bike Ride 2006

Liphook villagers celebrated raising a final total of more than £51,000 for charities and good causes at the 16th annual LiDBA (Liphook and District Businessmen’s Association) presentation evening at Bramshott Parish Club and Institute on 13th October 2006. The bike ride is one of the biggest fundraising events in East Hampshire, distributing funds to 60 registered charities (representatives of some of which are shown in the photo below), one of them ME Research UK which benefitted to the tune of £1,400. LiDBA vice chairman Philip Jordan praised the efforts of all the organisations and individuals who took part in the bike ride. He said that 1,131 people had taken part in the 25-mile ride in June, and thanked all the riders for helping with the fundraising effort.

Cathy Susans, a nurse from Haslemere and a very successful fundraiser, was awarded the Michaelson Cup, which is given to an individual or organisation who has worked tirelessly for the community. Cathy arranged riding teams at this year’s event for ME Research UK, the Chase Children’s Centre in Bordon and the Ola Morgan Trust. Our warm thanks go to Cathy, and to Roger and Tracey Tayler, parents of Suzy who is severely affected with ME, who once again helped to ensure our charity benefited from this annual event.

Altamont Garden Open Day

On 1st July 2006, a special event took place at Altamont Garden, known as the most romantic garden in Ireland and an enchanting blend of formal and informal gardens located on a 100-acre estate in county Carlow. The special day was a team effort organised by Jane Donald, who has had ME for six years, and Robert Miller of Altamont. Ireland’s top gardener, Gerry Daly, was the special guest and dispensed his expert horticultural knowledge on the day. And there was classical music while strawberries and wine were served on the lawn, and for the children there was face-painting and a model railway.

Several local newspapers covered the event, giving Jane the opportunity to describe ME and the need for research to a wider audience. Amazingly, almost £10,000 was raised, which is to be divided between ME Research UK and the CFS Research Foundation. Our thanks go to Jane and Robert for this remarkable achievement, a great event and a wonderful outcome.

Stonehunt Over London

Following on from such classic events as Stoneball 2004 and Stonefest 2005, expectations for the July 8th 2006 Stonehunt were understandably high. Amid blazing sunshine and with the spirit of Matt Stone, who has chronic ME, permeating all the participants, the day began at the Burghers de Calais monument alongside the Houses of Parliament where more than 140 of Matt’s friends in 29 teams of five met up in varying states of fancy dress to take on a citywide hunt, completing puzzles and tasks along the way. Think Anneka Rice with far too much Red Bull on board and you’ll have a vague idea of what was demanded.

Once Big Ben had struck 12 noon the participants were let loose, although there had already been one snag with the team dressed up as superheroes not realising that two men wearing Spiderman and Incredible Hulk costumes might attract the attention of the vigilant police around Westminster who believed ‘fathers for justice’ were ready to make another protest! Once cleared up, the competitors had to make their way to Lord’s cricket ground, Waterloo, New Bond street and Fleet Street in order to collect vital points where they met up with organisers and just like every task had to take a photograph to prove they had done it.

Some of the tasks were a little more extreme than others, but everyone got into the swing of things. Examples included ‘be a mannequin’, ‘meet a celebrity’ (including Juliette Lewis) and ‘serve a drink in a bar’ (see photos). With all the photographic evidence collected, it was back to Anexo bar in Farringdon for a few drinks, a barbeque and the all-important prize-giving. Points were awarded for completing the tasks, but with plenty of bonus points available for humour, creativity and originality. With all involved, including members of Matt's family, enjoying a fun time at the bar, the best pics were shown much to the amusement and embarrassment of those concerned.

The well-deserved winners ‘How-Ayman’ took the coveted Stonehunt trophy while the ‘Superheroes’ took the best-dressed prize, despite their brush with the law. Most importantly of all, plenty of money was raised for Matt’s ME appeal — and a wonderful £2,000 raised for ME Research UK — and the constant support for Matt and his family was there for all to see.

It has been over four years now since Matt was first diagnosed with his illness, and while we all hope he will make a full recovery as soon as possible, it was great to see so many people get involved in his honour. He would have loved it, and fingers crossed he will be able to get fully involved soon enough. Huge thanks goes to the organisers Rob Ogden, Tom Cropper, Kate Terry, Sarah Mould, Maurice Goldstone and Dean Wilson.

£1,200 Donation via The VegEPA for ME Scheme

The VegEPA for ME Scheme, initiated and organized by Lynne Kersh, has now been running for five months and has just sent in £1,200 for our research funds. The Scheme, through which every pot of Vegepa sold raises 50p for research into the illness, now has members across the UK, throughout Europe and as far away as Australia.

Lynne, a full-time Carer of her 24-year-old daughter Daliany who has had ME for nearly 9 years and who helped come up with the idea, explains, “Given my connection with ME, and our positive experience of this supplement, I thought I’d develop a scheme that would bring these products to PWME at a greatly reduced cost, while helping research into ME at the same time. I am delighted with the scheme’s success in such a short period of time, and if people might benefit symptomatically then so much the better!”

Dr Neil Abbot said, “Evidence on the specific efficacy of a whole range of supplements (and therapeutic interventions) for the symptoms of ME/CFS is seriously lacking — and this is also true for omega supplements. However, Lynne’s personal donation from her scheme is a welcome one, and will help us to plan and fund our portfolio of research studies.”

High Peak Trail 2006

The thousands of excited spectators who cheered the opening of the High Peak Railway in June 1830 — described as one of the most extraordinary feats of 19th century railway engineering — never imagined that exactly 176 years later six intrepid adventurers would be walking the High Peak Trail for ME Research. Yet, they did, and had a wonderful time!

The lads (pictured above resting briefly by a gate) all work at Nissan Motor Parts Center in Lutterworth, and were encouraged in their quest by Jane Shaw who has had ME for a number of years and is a Friend and member of the Warwickshire Network for ME. During their walk — which took several days — the guys covered the 17.5 miles of traffic-free trail for walkers, horse riders and cyclists.

The photo (right) shows Bruce Taylor, Works Manager at the Nissan Motor Parts Center, presenting a cheque for £1,143 to Jane Shaw who received it on our behalf, while some of the walking team look on. Thank you Nissan, Jane and family, and the guys for helping us climb the biomedical research mountain by yomping the High Peaks of Derbyshire!

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