The All-Party Parliamentary Group on ME to Re-Convene – Please Invite Your MP to Attend! | 09 January 2020

January 9, 2020



Dr Charles Shepherd, Hon. Medical Adviser, ME Association.

Carol Monaghan is the Scottish National Party MP for Glasgow North West, and has been an MP continuously since 7 May 2015.

As many people will already know, the All-Party Parliamentary Group (APPG) on ME has not been active for some time.

However, following the well-attended Westminster Hall and House of Commons debates that were secured by Carol Monaghan MP in the last session of parliament, and the interest this has created in the various problems faced by people with ME, Carol Monaghan has decided that the time is right to re-establish the APPG on M.E.

I met Carol at the end of last year to look at how this might be done given all the uncertainties at the time surrounding the date of a possible general election.

Following the election, it was decided to hold an inaugural APPG meeting as soon as possible after members returned to Westminster, and this will now take place on Tuesday 14th January, at 1.00pm in Room Q, Portcullis House.

Invite Your MP to the Meeting

We now want people to contact their MPs, especially if they are known to be already interested in M.E. and invite them to attend.

For further information on the time and location of the meeting, your MP can contact Carol Monaghan via House of Commons email/telephone or consult the All-Party Notices.

Email Example

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 or M.E. I have been disabled by this disease for 20 years and depend on carers 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.

Carol Monaghan (MP for Glasgow North-West) has worked with the MEA and other national charities and led several successful debates in parliament in 2018 and 2019. She has now reconvened the APPG on M.E. and the first meeting with be 14th January 2020, at 1.00pm in Room Q, Portcullis House .

You can contact her office for more information and I would be extremely grateful if you could attend.

Yours sincerely,

Full Name and Address
*Use 0.4% of the population as the estimate of M.E. prevalence. The official range of prevalence is 0.2-0.4%.

What is an APPG?

‘APPGs allow campaign groups, charities, and other non-governmental organisations active in the field to become involved in discussions and influence politicians. Often a relevant charity or other organisation will provide a secretariat for the APPG, helping to arrange meetings and keeping track of its members.'

Source: Wikipedia

‘All-Party Parliamentary Groups are informal cross-party groups that have no official status within Parliament. They are run by and for Members of the Commons and Lords, though many choose to involve individuals and organisations from outside Parliament in their administration and activities.'

Source: UK Parliament

Background:

The ME Association

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4 thoughts on “The All-Party Parliamentary Group on ME to Re-Convene – Please Invite Your MP to Attend! | 09 January 2020”

  1. “The official range of prevalence is 0.2-0.4%.” Please can you give a source for this? What does “official” mean in this context?

    1. The prevalence range comes from research completed by the UK ME Biobank Team but it can depend on the research criteria employed. In 2010 they published a paper – Nacul et al. https://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-9-91 The NICE clinical guideline suggests a range of 0.2-0.4% although as the Nacul study explains, upper ranges can vary wildly for a number of reasons and have been reported to be as high as 2.6% but these seem very unrealistic. Hope that helps! 🙂

  2. I have invited my MP – Sally-Ann Hart, Hastings & Rye, and have received a message from her office advising me that she will attend.

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