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.
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
Yours sincerely……
Name, Address including post code and contact telephone number.
This is our page on the Parliamentary Debates on ME research and treatment:
https://ldifme.org/parliamentary-debate-on-me-research-and-treatment/
This is our blog following the June 2018 debate: https://ldifme.org/2018/06/28/dear-mp/
Thank you for your support!