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ME Awareness

Walk for ME 2020

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Do you know anyone who might like to do a sponsored walk or other activity in 2020 to help raise awareness of Myalgic Encephalomyelitis and biomedical research funds for Invest in ME Research?

Sarah-Louise Fittall Jordan, Luke Remnant, Ian McPhee and Geoff Allen, have launched Walk for ME 2020, their 8th consecutive year of fundraising in which they have raised over £150,000 for ME research thanks to walkers, runners and swimmers across England, Scotland, Wales, Ireland and the Isle of Man as well as in France, Germany, Spain, Malaysia, Australia, New Zealand and on both coasts of America!

The original idea behind Walk for ME was that friends and family of an ME sufferer did a sponsored walk on their behalf, hence the name. Since then, supporters have chosen several other activities too, in their quest to help the team raise money for biomedical research into ME.

The hope is that this will be a fun event even though it is poignant. The whole idea is that a friend or family member is doing something that their loved one would love to be able to do but can’t because of their illness.

Walk for ME has its own fundraising page for Invest in ME Research on JustGiving and a team page for fundraisers to join. This makes it easier for them to keep tabs on totals raised but if you prefer to use another fundraising platform just let them know the link.

To create your own page and join the Walk for ME fundraising team on JustGiving in suppport of Invest in ME Research:

1. Go to justgiving.com/investinm-e
2. Click the box ‘fundraise for us’
3. Either log in to your account or sign up if you’re new to JustGiving
4. Click on ‘personal challenge’ under ‘What are you doing?’
5. Follow the steps and choose your JustGiving web address
6. Click on ‘create your page’
7. Personalise your page. You can say who you are walking for and why
8. Then go to justgiving.com/teams/walkforme2020 and scroll down and click on ‘Join the team’
9. Select your fundraising page to add it to the team
10. You can then send your own JustGiving address to friends to raise sponsorship. Any target you set on your own page will automatically add to the team target.

You can find Walk for ME on Facebook and Twitter.

https://twitter.com/Walk_4_ME/status/1212000928322248705?s=20

A big THANK YOU Team Walk for ME and supporters!

Our 40 x £1k Fundraisers Challenge

Phoebe & Georgina’s Sponsored Kayak!

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By Georgina & Phoebe

Even a live Second World War grenade  couldn’t stop us! 

On Sunday the 28th of July we began our quest to conquer a 25 mile kayak to raise money for Invest In ME Research. This journey consisted of a very early start, a late end to our tiring day and a shed load of rain in between. We started at Little Haywood, near Rugeley with our team of many supportive helpers including one in a kayak too, who without them it wouldn’t have been possible. Our planned route was to follow the Trent & Mersey canal from here through 14 locks and all the way to Willington in Derbyshire 25 miles by canal.

After an hour and a half of non-stop rain Georgina began to feel the cold and we decided it would be the right decision to stop at the next lock to collect a vital and necessary dry jumper. Another hour or so passed and we were nearing Fradley where we knew we would be provided with hot food and supportive friends and family. 

After lunch we knew there was a long way to go but our friend’s banner gave us a helping boost of perseverance. The next 10 miles were rather tough, as we knew we still had a long way to go. As we neared Shobnall Marina we were instructed by police to leave the water as a live grenade had been discovered in the canal by a magnet fisherman. The canal was full of boats as it had been shut for sometime and soon the bomb disposal team were also in attendance! We decided the only option was to walk with the 3 kayaks along the main road to get back to the canal. But thankfully before we reached the road a kind family let us through their garden to get to the canal quicker. 

When we approached the last 4 miles of our trek it was encouraging to see many family members reminding us we could do it. However as time passed it became gradually harder as it was getting later and we were getting more tired.

We finally reached our destination where we were greeted by familiar faces and lots of support. We both were exhausted, proud and ready for a hot drink. We had completed 26.3 miles in total with an average speed of 2.7 mph. Everyone there was very supportive and donated generously. We would like to thank everyone who helped, donated and supported us as this is such an important yet small charity. https://www.wonderful.org/fundraiser/endurancekayaking-49b77049

A huge well done and thank you to Phoebe and Georgina and everyone supporting and cheering on these two stars, undaunted by an unexploded grenade! The girls did a lot of training to lead up to this grueling challenge. They wrote on their fundraising page,

“We are two total novice 13 year olds taking on a huge challenge to kayak 25 miles in order to raise vital funds for biomedical research into ME. We are doing this after Georgina’s sister was hit with this horrid illness age just 14 and became very poorly. ME is a multi- system disease affecting not only the neurological system but also the immune , muscularskeletal, endocrine and cardio vascular. Its life changing in short with a quality of life generally worse than a person with end stage cancer.”

The girls have raised over £2,200 including Gift Aid thanks to their Wonderful sponsors! Wonderful is a fee-free fundraising platform so every penny donated will be spent on vitally-needed biomedical ME research: https://www.wonderful.org/fundraiser/endurancekayaking-49b77049

Thank you Phoebe and Georgina for doing a Kayak for ME!

Thank you for supporting Invest in ME Research!

P.S. To our blog subscribers, apologies that you did not receive our last blog by email, marking 8 Years Doing It for ME!

Welcome to Pets Walkies for ME 2019!

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All pets are welcome to join Team Walkies for ME, an adorable offshoot of the annual May ME Awareness and Fundraiser Walk for ME.

Walkies for ME is arranged by Ian McPhee. The team comprises a group of wonderful pets whose humans have Myalgic Encephalomyelitis.

These lovely dogs, cats, horses and others will be doing a walk on their human’s behalf or resting with them, providing comfort and love.

They have their own JustGiving page justgiving.com/fundraising/walkies-for-me-2019 and are raising funds for Invest in ME Research charity.

You can, of course, create your own fundraising page for the team, like Cheyenne Hope’s for dynamic duo Lizzie and Kenzo planning to do 31 walks in 31 days for Invest in ME Research!

Walkies for ME also has a Facebook page facebook.com/WalkiesforME/ where folks can share photos of their pets and where you can let the team know if your pet would like to join in. All Pets Are Welcome!

Thank you for supporting Invest in ME Research!

Invest in ME Research is an independent UK charity finding, funding and facilitating a strategy of biomedical research into Myalgic Encephalomyelitis (ME or ME/CFS). The charity is run by volunteers – patients or parents of children with ME – with no paid staff. Overheads are kept to a minimum and all funds raised to go to promoting education of, and funding for, biomedical research into, ME. Our efforts are focused on setting up a UK Centre of Excellence for ME which will provide proper examinations, diagnosis and in time treatment(s)/cure(s).

Gloucestershire Friends in City News

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Mike Harley met with members of the Gloucestershire ME/CFS Friendship Group on Sunday after completing the Gloucester Half Marathon in training for the next of his 28 EU Marathons charity challenge for Invest in ME Research.

Congratulations to Mike and his supporters for tipping over the £15k mark towards his fundraising target of £26,200!

Mike raises awareness of the issues around ME (Myalgic Encephalomyelitis) in every country he runs in, supported in his outstanding efforts by his wife Cat.

Team Harley now includes baby Lucy who watched Daddy race for the first time on Sunday and achieve a personal best!

Mike and Cat fund all their own travel and other expenses for the challenge so every penny raised goes the vital biomedical research funded by the charity.

The following extract is from a great article by Ed Stilliard, Chief City Reporter for Gloucester Live, published prior to the race, which includes the story of one of Mike’s friends with ME, Rachel Ephgrave, pictured below.
 

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Bristolian Mike Harley, 36, is also running that race for his friend Rachel Ephgrave from Cheltenham who suffers from ME (myalgic encephalomyeltis), also known as chronic fatigue syndrome.

He wants to raise cash for the ME research charity Invest In ME (www.investinme.org) and is dedicating the race to the Gloucestershire ME/CFS friendship group.

The Gloucester race is training for a challenge which he already part of the way through completing – a marathon in all 28 EU countries.

His next marathon is on March 17 in Cyprus which will be followed by marathons this year in Slovakia, Latvia, Hungary, Romania and Portugal.

He said: “I have raised nearly £15,000 so far and up to £250 for the race next Sunday already.

Former physics teacher Rachel Ephgrave, 43, who has had ME for 12 years, said: “It is so encouraging to see Mike raising awareness of ME and raising funds for biomedical research by running marathons across the EU.”

She said a quarter of those affected are either housebound or bedbound and it has forced her to rely on others to help her.

“Since becoming unwell I have had to give up my teaching career, I generally need to use a wheelchair to leave the house and have lost a large amount of my independence,” she said.

“I rely on my family and friends to help me with basic things like doing the washing, cooking, collecting my son from school and giving me lifts to medical appointments.

“ME is a difficult illness for others to understand as you can often appear well when seeing someone for an hour or two, then [a range of symptoms hit] later when you are on your own.

“When I am at my worst I struggle to think, have difficulty finding words and speaking in sentences, I find sound and light difficult to tolerate, I cannot concentrate to read or watch TV.

“I can be too weak to sit up or move around, and become freezing cold as I cannot control my body temperature.

“I have no choice but to lie still in the quiet, often in pain, until I start to feel better, while relying on others to look after me.

“Having been ill this long I know that my best hope is biomedical research into understanding the causes of this illness, hopefully leading to treatments.

“I have so many things that I want to do in life; an effective treatment cannot come soon enough for me and my family.”

To find out more about Mike’s challenge visit his webpage and to sponsor him click here.

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Extract above from Road closures announced for marathon in Gloucester today.

Many thanks to Ed Stilliard, Gloucester Live, Mike Harley, Cat, Lucy, Rachel Ephgrave, Linda Hending and the Gloucestershire ME/CFS Friendship Group and to all Mike’s sponsors and supporters.

Please share the links widely to help Mike achieve his fundraising target and to help raise ME awareness across Europe.

Invest in ME Research is Chair and founding member of the European ME Alliance, which formed the European ME Research Group in 2015 and has just formed a European ME Clinicians Council.

Find Mike’s EU Marathons on Facebook and @MikesEUmaras on Twitter.

Mike’s excellent EU Marathons website and JustGiving page for donations.

Thank you for supporting Invest in ME Research!

 

Caroline John’s Christmas Appeal Donation

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Another bauble added to the Invest in ME Research Christmas Tree courtesy of a generous £1000 donation by Caroline John from Scotland.

Caroline is a bespoke jewellery designer who has had ME for over three decades. Her story led the charity to write on the topic of people long-term ill ME.

Caroline’s story and the charity’s article are at this link.

Thank you Caroline and everyone supporting Invest in ME Research!

p.s. If you’re bagging a Black Friday deal online and want to help the charity at the same time, please remember the Ways to Raise Funds for Free for Invest in ME Research.