Campaigning
M.E awareness for 2019
Awareness helps in several ways: it educates the public and healthcare providers, reducing stigma and promoting early diagnosis; it drives funding for research into causes and treatments, as there’s currently no cure; and it fosters empathy and support for those living with ME, who often feel isolated due to the condition’s impact on their daily lives. By shining a light on ME, we can improve quality of life for millions and push for better medical and social resources.
raising awareness for 2019
Raising awareness for Myalgic Encephalomyelitis (ME), also called Chronic Fatigue Syndrome (CFS), is vital because it’s a misunderstood and often invisible illness. ME is a severe, chronic condition that impacts multiple body systems, leading to extreme fatigue, pain, brain fog, and post-exertional malaise—where even small activities worsen symptoms.
This Years Focus
Involving adults with severe ME/CFS symptoms in developing a NICE guideline on Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management
PROJECT CLOSED AS OF 20/11
We (Keith Geraghty) have been commissioned by NICE to undertake a project looking to collect the views of patients with severe ME/CFS and to write a report of findings to their Guideline Committee.
The online survey ready linked below can be completed by adults aged 18 or over living in England or Wales. Carers or others can help complete the survey on behalf of responders.
Name of Project
Involving adults with severe ME/CFS symptoms in developing a NICE guideline on Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management
You are being invited to take part in a research study to explore the views and needs of patients with severe ME/CFS. This project has been commissioned by the National Institute of Health and Care Excellence (NICE). Before you decide whether to take part, it is important for you to understand why the research is being conducted and what it will involve. Please take time to read the following information carefully before deciding whether to take part and discuss it with others if you wish. Please ask if there is anything that is not clear or if you would like more information. Thank you for taking the time to read this.
About the research
Who will conduct the research? The project is being led by Dr. Keith Geraghty, working with colleagues at the University of Manchester Centre for Primary Care.
25% ME GROUP response to NICE call for research evidence into ME Research
Use this space to add a medium length description. Be brief and give enough information to earn a click.
LETTER FOR YOUR MP concerning nice
You should send the letter to:
House of Commons, Westminster, London SW1A 0AA. Of course, the same issues can also be raised with Members of the Scottish Parliament, Welsh Assembly Members, and Members of the Legislative Assembly in Northern Ireland.
Don’t forget to include your address – your MP needs to know that you are a constituent, and without an address won’t be able to write back! Also remember to sign and date the letter before sending.
Thank you!
Letter to NICE concerning the removal of GET and CBT from Guidelines
We, the 25% ME group, would like to make our voices heard with regard to the use of Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT) for patients with Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS).
Health Secretary pledges more support for people with ME
Scotland’s health secretary Jeane Freeman has told ME sufferers their experiences matter to her.
Appropriate ME Treatment
ME debate in Parliament
ME Debate in Parliament
ME DEBATE IN PARLIAMENT
Dear All,
The Backbench Business Committee has granted a debate on ME. It will take place on the afternoon of Thursday 24th January.
It would be helpful if you could encourage the community to approach their MPs to request their support. Any briefings would also be appreciated.
The motion to be debated next week is as follows: “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.”
Office of Carol Monaghan MP
Member of Parliament for Glasgow North West