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!

Advent Calendar for ME

Invest in ME Research begin their advent calendar with Myalgic Encephalomyelitis itself, using an article from some of the most knowledgeable and pioneering of advocates for people with ME. The article is called ‘Information for Clinicians and Lawyers’ and was written in 2001 by Eileen P. Marshall, Margaret Williams and Professor Malcolm Hooper. Day 1 – What is ME?

 

 

The advent calendar is part of the charity’s Christmas / New Year Funding Appeal.

Please help promote this appeal on social media and through hospitals, GP surgeries and schools.

The more we can educate and the more we can raise awareness then the more rapid will be the solutions.

Sign up to receive the free Invest in ME Research Newsletter by email.

 

Thank you for supporting Invest in ME Research!

 

Christmas Shopping
Awareness and Fundraising
IiMER Funding Appeal
 

Barnaby’s Birthday Fundraiser for Invest in ME Research

That excellent Eaton-Jones fellow is celebrating his birthday by fundraising for Invest in ME Research. Barnaby wrote,

“On Saturday, I turn 45. Every year is a struggle for most people with health issues but this is a charity about the most underfunded and maligned of diseases that affects so many people that it *should* be up there with the more ‘known’ ones. I’ve suffered with it for over 25 years and I have fought for better awareness and understanding. Of all the many M.E. charities, this one – for me – seems to be doing the most to get to the root of this disease and work out a way to somehow give all level of sufferers hope for the future. If you can spare the minimum donation of £4, I’d be most grateful. But, I also understand if you can’t in these times of austerity and uncertainty. Thanks for reading and, if you’re able to, thank you for supporting.”

Barnaby’s Facebook Fundraiser is open for two weeks and if it doesn’t give you the option to donate in your currency you can follow his friends’ kind lead and donate via our current JustGiving page Let’s C Research!

There’s also some exciting news. It has been Barnaby’s lifelong dream to have something broadcast on BBC Radio and it will happen! ‘I’m Sorry I’ll Read That Again…. Again!’ airs on BBC Radio 4 Extra from 21st December. See the tweet below for dates and times for the four weekly episodes and read all about it here.

 


 

Best Birthday Wishes Barnaby Eaton-Jones and congratulations on your news!

Thanks everyone supporting Invest in ME Research!

 

Barnaby’s Birthday Fundraiser on Facebook

Let’s C Research on JustGiving