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.
See survey live link here: https://apps.mhs.manchester.ac.uk/surveys/TakeSurvey.aspx?PageNumber=1&SurveyID=m4KKln9MH
Consent Form: participants are directed to complete a consent form and tick they have read the information sheet before completing the survey.
Dr. Keith Geraghty Principal Investigator
25% ME GROUP response to NICE call for research evidence into ME Research
LETTER FOR YOUR MP
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.
Letter to NICE concerning the removal of GET and CBT from Guidelines
Scotland’s health secretary Jeane Freeman has told ME sufferers their experiences matter to her.
ME DEBATE IN PARLIAMENT
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