Welcome to Wonderful!

 

Invest in ME Research is now officially a Wonderful Charity

Wonderful.org is a fab fundraising platform which is completely free to use. Supporters can create online fundraising pages or simply donate.

 

 

Most fundraising platforms charge for providing the service, whereas Wonderful.org is a non-profit funded entirely by like-minded, philanthropic businesses making it possible for them to pass EVERY PENNY raised from your fundraising efforts and generous donations to the charity, including Gift Aid.

Invest in ME Research itself is run by volunteers and has no paid staff. It’s a small charity supported by people with big hearts. Overheads are kept to a minimum to enable all funds raised to go to promoting education of ME, and facilitating and funding biomedical research, which the charity believes is crucial in order to make progress in treating this disease. Education of healthcare staff, the media, government departments, patient groups and patients is also a priority.

First to sign up as Wonderful Fundraisers for IiMER are Georgina and Phoebe!

 

Huge thanks Georgina and Phoebe and all your wonderful sponsors helping Invest in ME Research to change the landscape of medical research and treatment for sufferers of all ages with Myalgic Encephalomyelitis.

Please share Georgina and Phoebe’s fundraising page and help spread word of this excellent new option to fundraise online and donate to a wonderful charity.

Georgina and Phoebe’s Endurance Kayaking

Invest in ME Research on Wonderful.org

 

 

Thank you for supporting Invest in ME Research!

 

Play for IiMER

 

Play for Invest in ME Research Launches With Love

 

Music was the food of love for ME at The Spinning Top in Stockport on Sunday 17th Feb. The Valentines Music Fundraiser launched ‘Play for Invest in ME Research’ created by Karen Morris to raise money for the charity’s Biomedical Research Fund while also raising awareness of Myalgic Encephalomyelitis.

The idea of Play for IiMER is to organise gigs around the country in aid of the charity. Karen hopes to organise more gigs herself if health allows (Karen has ME) and hopes that others in UK will help her to make Play for Invest in ME Research go nationwide by organising and filming similar gigs in aid of the charity.

Click here for a super selection of photos of the Valentines Music Fundraiser, where you may notice Let’s Do It for ME Bear taking centre stage!

Karen added the money to the total raised on her JustGiving page –
I Support ME Research
and there’s an option to donate by texting ISMR99 £10 (or £1-£5) to 70070.

The performances were recorded and are uploaded with each artist’s name to the Play 4 IIMER playlist on Karen Morris YouTube channel.

Many thanks to Karen and everyone who donated, watched, performed.

If you (or anyone you know) would like to join in with this event, please contact Karen Morris. You can also contact Invest in ME Research charity for help with awareness and fundraising aids, banners, wristbands, collection boxes etc.

Play for Invest in ME Research: facebook.com/play4iimer

Donate: justgiving.com/isupportmeresearch

or text ISMR99 £10 (or £1-£5) to 70070

YouTube: youtube.com/playlist
 

 

Thank you for supporting Invest in ME Research!

 

House of Commons Debate for ME

 
Thank you to all who contacted their MP for support in the House of Commons backbench debate on appropriate treatment of Myalgic Encephalomyelitis, initiated by Carol Monaghan (Glasgow North West) along with Ben Lake (Ceredigion) and Nicky Morgan (Loughborough), and held on 24th January 2019.

Thank you to those MPs who responded by attending the debate or by voicing their support for the motion and to those highlighting the work of Invest in ME Research in medical education and our patient-driven crowdfunding for the biomedical research programme of the charity’s Centre of Excellence for ME, and thank you to the supporter who initiated Carol Monaghan’s interest in ME.

Carol Monaghan began by reflecting on how little has changed in the 20 years since a debate in 1999, called by then MP for Great Yarmouth, Anthony Wright.

Sir David Amess said,
“I first heard ME being mentioned in the Chamber in the 1980s by, I think, the late Richard Holt on these Benches and Jimmy Hood on the Labour benches”.

In February 1988, Jimmy Hood, then MP for Clydesdale, presented a Bill to require an annual report to Parliament on progress made in investigating the causes, effects and treatment of myalgic encephalomyelitis, as Invest in ME Research pointed out in their document Give ME Patients a Future.

One of the sponsors of that Bill was the late Brynmor John, then MP for Pontypridd in South Wales. Brynmor John had been diagnosed with ME. In December 1988 he died suddenly, immediately after exiting the House of Commons gym. “He had been following an exercise regime based on what is argued to be unfounded and unethical medical advice: that sufferers may exercise their way toward a cure for the illness.”

It’s nothing less than tragic that over 30 years later, MPs are debating appropriate treatment for ME and pointing out the seriously adverse effects of graded exercise therapy (GET) on people diagnosed with ME.

All the speakers did an excellent job of raising a range of important points, especially in the short time allotted them of 2 to 4 minutes. It was interesting to hear perspectives from MPs with backgrounds in bioscience and healthcare, and sadly all too familiar experiences and comments of their constituents.

Several speakers referred to the lack of further substantial funding for biomedical research since £1.6m spent by the Medical Research Council in 2012. This ring fencing of funds for ME was prompted by a 2011 Westminster Hall debate earned by then MP for Redcar, Ian Swales, in support of his constituents Jan Laverick (sufferer of severe ME and co-founder of our Let’s Do It for ME campaign) and her mother Margaret Laverick.

In his comments on the subject of research into ME, Steve Brine, Parliamentary Under-Secretary of State for Health and Social Care, mentioned the late Baroness Jowell. The government allocated an extra £20m, doubling the amount from the government for brain cancer research, following her death last year.

Invest in ME Research calls upon the government to ring-fence funding of at least £20 million a year for five years for biomedical research into ME. This £100 million to be a beginning to end all of the years of suffering of an estimated 250,000 citizens with ME and the millions of carers and family members affected by the consequences of the disease, and give hope for the future. It would encourage the research community to enter the field. It is not a large investment in the light of the small amount spent by the government on biomedical research into ME over the 30 or so years that MPs have been raising the matter with successive governments or compared with the loss to the economy and lives.

Kelvin Hopkins (Luton North) mentioned Dr. Ian Gibson, former MP for Norwich “and a distinguished medical scientist in his own right.” Dr. Gibson is a staunch supporter of Invest in ME Research, chairing their annual international conference and supporting the Centre of Excellence for Myalgic Encephalomyelitis.

The book by Dr. Gibson and Elaine Sherriffs Science, Politics…and ME inspired a fresh wave of positive political activism when published in March 2017, including a petition to Debate in Parliament the absence of an effective policy for the treatment of M.E, gaining almost 11,000 signatures in the six weeks prior to the snap general election in May of that year.

Liz Twist (Blaydon) thanked Pauline Donaldson of the Tyne and Wear ME/CFS support group and said she was shocked to hear that patients and families are helping to fund research themselves.

“It is really important that we find a way of having that biomedical research done through public funds.”

She went on to say that Invest in ME Research is doing much to support training for GPs and has information packs, but that the charity does not have the funds to extend that medical training everywhere.
 

 
 
Liz McInnes (Heywood and Middleton) again spoke about our friend, the late Merryn Crofts, and her mother’s criticism of the current NICE guidance, adding,

“I have also been contacted by other constituents who have urged me to take part in this debate. One of them is Rebecca Pritchard, who points out that it would not be difficult to increase funding for research, given that very little funding for ME has been given so far. She highlights the work done by Invest in ME Research, based in Norwich, and points out the huge funds that have been crowdfunded by patients and their families.”
 

 
 
Sharon Hodgson (Washington and Sunderland West) said,
“Projects such as Invest in ME Research, which has four PhD students researching ME, have been financially supported by patients and their families via crowdfunding in excess of £870,000. That is fantastic, but it should not be left to patients to crowdfund research. More funding for research will enhance healthcare professionals and clinicians’ understanding of ME, which will improve the patient experience and debunk the myths of ME being a primarily psychological condition, as we have heard about today. Clinicians must have access to up-to-date research and information so that they can give patients the best possible care and advice.”
 

 
 
Regarding education and training of GPs, Invest in ME Research provides GP info packs upon request, their annual public conference is fully accredited by the Royal Colleges, and they have a scheme whereby medical students may be directly involved in the biomedical research funded by the charity in their 4th year of training. The charity is run entirely by volunteers so that all funds are spent on the biomedical research and education projects.

At the June 2018 Westminster Hall debate, Steve Brine said he was looking forward to hearing more about the Invest in ME Research Centre of Excellence, and on this occasion he kindly mentioned Let’s Do It for ME’s Rosalind Amor on behalf of her MP Jo Churchill (Bury St. Edmunds), who said that Rosalind, who has severe ME, has been in touch with her many times on this subject.

However, he gave no indication of change in government policy on research and treatment of Myalgic Encephalomyelitis, so let’s keep doing it for ME until we have the changes so long awaited and so desperately needed.

We are immensely grateful for all support.

The full debate may be read on Hansard and watched on Parliament TV.

Invest in ME Research Comments for Parliamentary Debate January 2019

Give ME Patients a Future pdf

Invest in ME Research Centre of Excellence Executive Summary for MPs

Let’s Do It for ME page on Parliamentary Debates

We leave you with this lovely tweet from Liz McInnes.
 


 

Let’s C Research!

Thank you for supporting Invest in ME 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.