IiMER Wins £5000!

You did it for ME! A whopping £5,000 donation was presented by Laurence on behalf of Health Games to Invest in ME Research Chairman Kathleen McCall today thanks to you nominating and voting for the charity.
 

 
Kathleen said, “This is all about our wonderful supporters. Health Games mentioned how overwhelmed they all were with the support shown by IiMER supporters and the lovely comments. Very many thanks to you all.”

Health Games announced the winner on Facebook.
 

 
We’ve added this generous £5,000 to the offline donations on our Let’s C Research JustGiving page where we’re keeping a running total of funds raised towards our current crowdfunding target for the IiMER Centre of Excellence programme of biomedical research into Myalgic Encephalomyelitis.

Huge thanks to Health Games and all who nominated and voted for Invest in ME Research. Thank you so much for your support!
 
Thanks also Kieran James and Eastleigh News!


 

Let’s C Research!

 

Gloucestershire Friends in City News


 

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.
 

*****

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.

*****

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!

 

Letter to MPs for House of Commons Debate on ME

A House of Commons debate on ME (Myalgic Encephalomyelitis) will take place next Thursday afternoon 24th January 2019, secured by Carol Monaghan MP for Glasgow and North West. The substantive motion for the debate is:

This is our page on the Parliamentary Debates on ME research and treatment:
http://ldifme.org/parliamentary-debate-on-me-research-and-treatment/

This is our blog following the June 2018 debate: http://ldifme.org/2018/06/28/dear-mp/

As a supporter of Invest in ME Research, Paul Kayes has sent a letter to his MP which you are welcome to copy or adapt for your MP.

Invest in ME Research has since announced a new initiative in remembrance of Anne Örtegren, to establish the European ME Clinicians Council, a network of clinicians to support each other and work together.

Invest in ME Research has also produced a new document for this debate Give ME Patients a Future.

To find your MP’s contact details, put your postcode in the box on this page.

Dear MP….

I’m writing to make you aware of the following backbench debate in the House of Commons.
Carol Monaghan MP has managed to secure a backbench debate for next Thursday, 24th of January.
‘Motion relating to appropriate M.E. treatment’

I’m asking for your support by attending the debate on behalf of myself and the many other sufferers of Myalgic Encephalomyelitis (M.E.) in your constituency and to give you more information relating to the issues that will be raised in the motion.

The substantive motion for the debate MP Carol Monaghan has secured is:

“That this House calls on the Government to provide increased funding for biomedical research into the diagnosis and treatment of ME, supports the suspension of Graded Exercise Therapy and Cognitive Behaviour Therapy as means of treatment, supports updated training of GPs and medical professionals to ensure they are equipped with clear guidance on diagnosis of ME and appropriate management advice to reflect international consensus on best practice, and is concerned about the current trends of subjecting ME families to unjustified child protection procedures.”

1. Increase funding for biomedical research into M.E. this should not be difficult to achieve given that very little funding has been given for biomedical research into M.E.

I would fully endorse, support Invest in ME Research (IiMER) who currently have 4 Phd students researching M.E. and initiated the development or a Centre of Excellence for ME in Norwich Research Park based at the Quadram Institute. So far patients and their families have crowdfunded in excess of £870k in support of IiMER, which clearly demonstrates the faith patients have in IiMER.

2. Invest in ME Research and their supporters have requested that NICE remove the use Cognitive Behavioural Therapy and Graded Exercise Therapy as treatments for people with M.E. Both of these treatments have been found to be harmful to M.E. patients causing relapse and permanent damage to the patient and their chances of recovery.

You will hopefully be aware that the the current NICE guidelines are under review by NICE and that the patient community have grave concerns about the large number of biopsychosocial proponents that have been selected for the GDG review panel.

3. Invest in ME Research have information packs for GPs and Medical staff, but lack funding to deliver this to all GPs, they also plan that the Centre of Excellence in Norwich will be used for training of medical personnel. They have also initiated the formation of the European ME Clinicians Council, a network of clinicians to support each other and work together.

4. In order to increase education amongst healthcare staff and facilitate collaboration between international researchers Invest in ME Research organises annual international research colloquiums for scientists and international public conferences that attract delegates from twenty countries every year.

5. I personally hear about the devasting effect that the lack of treatment and understanding has on families with children with M.E. I know IiMER have been involved in helping many parents who encounter ignorance as to the nature of the illness and have been subject to unjustified child protection procedures as have Tymes Trust and Dr Nigel Speight paediatrician specialising in M.E.

I look forward to hearing from you as a matter of urgency as the debate takes place next week.

References…

https://calendar.parliament.uk/

http://investinme.org/ce-index.shtml

https://quadram.ac.uk/targets/me-cfs/

http://www.investinme.org/IIMER-Newslet-1801-01.shtml

http://investinme.org/IIMER-Newslet-190102EMECC.shtml

https://www.tymestrust.org/

Yours sincerely……

Name, Address including post code and contact telephone number.

Walk for ME 2019

Team Walk for ME welcomes you to their 7th consecutive year of fundraising!

 

 

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 Myalgic Encephalomyelitis.

Walk for ME has had 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. So far they have raised over £127,952 including gift aid. Every penny goes towards the search for a cure.

Walk for ME is run by Sarah-Louise Fittall Jordan, Luke Remnant and Ian McPhee. They hope 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.

In 2019, Walk for ME is again kindly supporting Invest in ME Research.

They have created a JustGiving fundraising page for anyone who would like to support or take part in Walk for ME 2019 but does not want to set up their own fundraising page: justgiving.com/fundraising/teamwalkforme2019

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/walkforme2019 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.

Many thanks to Sarah-Louise, Luke, Ian and all joining Team Walk for ME.

Thank you for supporting Invest in ME Research!

Update: Huge thanks to Lauren and family as the first to sign up for 2019!

Lauren, her husband and two children, her mother, sister and her two children, and her aunt will all do a two-mile walk to raise money for Invest in ME Research. The walk will take place near her mother’s home close to Orlando, Florida. Read Lauren’s story here: justgiving.com/fundraising/lauren-pwme
 

 

Vote for IiMER to Win £5000!

Very quick and easy to vote here: easypolls.net

 

 
Invest in ME Research has been selected by Health Games as one of four health charity finalists for the chance to win an amazing £5,000!

Simply click here and vote on the poll.

1 vote per person on the finalist poll.

The poll will be open for voting from now until 21st January.

Public winner reveal on the 28th January.

Let’s get voting!

More information on Health Games Facebook page here.

Thanks to all who nominated and to Health Games for this opportunity.

Thank you for supporting Invest in ME Research!