Dr Charles Shepherd, Hon. Medical Adviser, ME Association
& Secretariat to the APPG on M.E.
Please invite your MP
The November meeting of the All-Party Parliamentary Group on M.E will be covering diagnosis and management and the draft of the new NICE guideline on ME/CFS – due to be released 10 November 2020.
The meeting will take place via Zoom on Tuesday 17th November – from 9.30am to 10.30am. Your MP can obtain details on how to attend by emailing Carol Monaghan MP, Chair of the APPG for M.E.
There will be presentations from Professor Julia Newton (Newcastle) and Dr Sue Pemberton (York) – who will be covering key issues relating to diagnosis and management of M.E – activity management and pacing in particular.
A person with M.E. will be talking about their experiences of obtaining a diagnosis and information on management. We will also be updating MPs on the draft NICE guideline which will be with stakeholders for consultation from tomorrow.
We obviously want to encourage attendance from MPs in addition to members of the APPG – who will have already been notified. Attendance will be helped by people with M.E. writing to own MPs.
Guidance on writing to your MP
MPs receive a huge amount of correspondence. We suggest you keep your email/letter short and limit it to four or five short paragraphs.
Diagnosis, Management, and the New NICE Guideline on ME/CFS
Para 1: Introduce yourself as a person with M.E and point out that people with M.E often have to wait for over a year to obtain an accurate diagnosis. Even when this has happened they often struggle to find a health professional who can provide sound advice on management.
Para 2: Inform your MP about the date and time of the APPG meeting and the need to contact Carol Monaghan MP for details on how to link in to the meeting.
Para 3: Add in anything that you want your MP to raise in relation to diagnosis or management – either from personal experience, or any other local or national issue (e.g. lack of any local hospital-based referral service; the new NICE guideline).
Para 4: Thank your MP for taking an interest and hopefully attending the meeting and joining the APPG on M.E.
Template email to your MP
The following can be used as a template. Please ensure you adjust the information to suit your own circumstances and include (if you want) an estimate of the local prevalence of M.E. in your area.
Dear XXXX
I live in XXXX [and work part-time from home for the ME Association (MEA) who do wonderful work supporting people with myalgic encephalopathy (also known as chronic fatigue syndrome) or M.E.]
[I have been disabled by this disease for 20 years and depend on the help and support of others for much of my daily needs.]
M.E. is not a new disease. The medical profession has known about it for decades and yet we still don’t have an effective treatment. It has been estimated that M.E. could affect as many as [2,200 people in Cornwall*] and 265,000 in the UK.
We desperately need the help and support of our MPs if we are going to get the necessary research funding and medical understanding to really make a difference to all these people’s lives.
Carol Monaghan (MP for Glasgow North-West) chairs the APPG on M.E. and the next meeting will focus on the diagnosis and management of the condition, with presentations from Professor Julia Newton and Dr Sue Pemberton.
You might have heard that NICE has now published a draft of the new clinical guideline on ME/CFS which forms the framework for care in the NHS. It has generated a lot of media and community interest, and will also be discussed by the APPG.
The next meeting will take place from 09.30-10.30am on Tuesday, 17 November via Zoom conference. You can contact Carol Monaghan via her office for more information and I would be extremely grateful if you could attend.
Yours sincerely,
[Full Name and Address]
END
[*Use 0.4% of the population as the estimate of M.E. prevalence. The official range of prevalence is 0.2-0.4%. You can search on Google for population estimates in your area. These will likely be based on reports from the Office of National Statistics (ONS).]
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