10.00 am, Tuesday 16 June - All-Party Parliamentary Group (APPG) on ME Meeting.
 
The ME Association (MEA) announce that the APPG on ME will be Focusing on Young People when they meet virtually next week. 
 
This meeting will cover issues relating to children and adolescents with ME/CFS - including diagnosis, medical management, education, inappropriate social services interventions.  There will be three presentations from:

• Dr Nigel Speight - Consultant Paediatrician and Medical Adviser to The ME Association and TYMES Trust

• Tony Crouch - Paediatric social worker and social work adviser to TYMES Trust, 25% ME Group, Hope 4 ME and Fibro NI. 

• A parent of a child with ME

The presentations will be followed by discussion and questions from MPs.
 
Please email your own MP and ask that they attend this important meeting.  Please ask your MP to contact the APPG on ME Chair, Carol Monaghan MP for details on how to join. Contact details for all Worcestershire MPs. 
 
All-Party Parliamentary Group on Myalgic Encephalomyelitis (ME)
Purpose - To seek to improve health, social care, education and employment opportunities for ME sufferers and encourage biomedical research into the cause and treatment of ME.
 
Background:

• 2019 Parliamentary briefing paper on key issues facing people with ME.
• Commons M.E. Debate, 24 January. Transcripts, YouTube and Reports.

ME Charities and APPG on ME write to Supermarkets & UK Government.

ME Research UK - letter explaining how things are for people with ME/CFS.

Letter sent to major supermarket chains and UK Government from UK ME charities and the All Party Parliamentary Group on ME
Posted on 27 Mar 2020

We are writing on behalf of the adults, children and young people we support who have Myalgic Encephalomyelitis (M.E.) (also known as Chronic Fatigue Syndrome, or CFS), asking for your help.

The Government has identified that people with chronic neurological conditions, including M.E./CFS, are at increased risk of severe illness from Coronavirus.

More than one in four people with M.E./CFS are so severely affected that they are unable to leave their homes independently, and even those with the milder form of this non-visible illness struggle to access services and support.

Many of those we support have relied on the excellent home delivery service you offer for years, to get food and essential supplies. But over the past few weeks the increased demand has meant they are unable to compete with healthy people who are able to spend longer online, searching for slots and sourcing deliveries.

We are also hearing from those who are able to visit stores who have tried to use the dedicated shopping times for those at risk – but who have been challenged because the debilitating pain, fatigue and cognitive difficulties that come with this non-visible condition cannot be seen.

We are now seeing a huge increase in the number of calls to our already busy helplines, with many telling us they do not have any food in the house.
While those who are house/bed-bound are not necessarily included in the Government’s official category of “vulnerable,” this does not give the full picture.

This group of increasingly desperate people are unable to visit a store and many have no friends or family to support them. They need urgent help now – please will you:

• include those house/bed-bound by M.E./CFS in your priority access group for your online service?
• allow those with M.E./CFS, who are able to leave the house, access to priority shopping times in store?

We would be happy to provide our members with a resource they can download that shows they have a chronic neurological condition and are eligible to use this service.

Our teams are happy to help answer any questions or provide more information.

Carol Monaghan MP, Chair, APPG for M.E.

The Countess of Mar, Chair of Forward-ME

Ben Lake MP; Jim Shannon MP ; Mark Tami MP Dr James Davies MP; Edward Davey MP: Alex Sobel MP; Dame Diana Johnson MP.

Sonya Chowdhury, Chief Executive Action for M.E.

Nigel Riley, Chair, ME Association

Sue Waddle, Vice Chair, ME Research UK

Esperanza Moreno, #MEAction UK

Helen Winning, Chief Executive, The ME Trust

Simon Lawrence, Chair, The 25% ME Group

Jane Colby, Executive Director, Tymes Trust

Janice Kent, Director, reMEmber

Dr Nina Muirhead, Chair, Medical Education Group UK CFS/ME Research Collaborative

Dr William Weir

Dr Nigel Speight
 

Tuesday 3rd March - All-Party Parliamentary Group (APPG) on ME Meeting.

Carol Monaghan (MP for Glasgow North-West) has re-established a new All-Party Parliamentary Group (APPG) on ME. 

Biomedical research discussion at the next meeting on Tuesday 3rd March, from 1- 2 pm.
 
The March APPG on ME meeting will provide an opportunity for MPs to learn about issues and developments in biomedical research and funding through a series of short presentations and a Q&A discussion.
There will several specialist guest speakers who will discuss their research: Professor Julia Newton from Newcastle University, Professor Chris Ponting from the University of Edinburgh and a representative from the UK ME Biobank.

Contact your local MP, and explain how important this meeting is to you.
 
Action for ME are asking - Will your MP attend the APPG for M.E. in March? 

The ME Association and #MEAction give a joint statement, explaining what’s next for the APPG on ME, and giving a list of all MPs who attended the first meeting in January.  

Background:

• 2019 Parliamentary briefing paper on key issues facing people with ME.
• Commons M.E. Debate, 24 January. Transcripts, YouTube and Reports.

Please invite your MP to the meeting. 
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.  Dr Charles Shepherd, Hon. Medical Adviser, ME Association, met Carol Monaghan following the election and it was decided to hold an inaugural APPG meeting as soon as possible.  This will be on Tuesday 14th January.
Contact information for all Worcestershire MPs is on our website.  Your MP will be able to obtain times, venue, etc from Carol Monaghan MP.  If they are unable to attend, they can still register their interest by emailing Carol Monaghan’s office.
Background:

• 2019 Parliamentary briefing paper on key issues facing people with ME
• Blog post: Commons M.E. Debate, 24 January. Transcripts, YouTube and Reports.

 
The ME Association and Action for ME give further details on their websites, including template email examples for your use.

July 2015


All Party Parliamentary Group (APPG) on ME -
new officers

Following announcement on Action for ME (AfME) and ME Association (MEA) websites

The APPG on M.E.: new officers
www.actionforme.org.uk/get-informed/news/policy-and-campaigns/the-appg-on-me-new-officers
8 July 2015 All-Party Parliamentary Group on ME | now officially re-registered | 8 July 2015
www.meassociation.org.uk/2015/07/all-party-parliamentary-group-on-me-now-officially-re-registered-8-july-2015/ The All-Party Parliamentary Group (APPG) on M.E. has been officially re-registered following the inaugural election of officers on Wednesday 1 July at the House of Lords.

The Countess of Mar was re-elected and new officers were elected for the remaining positions. The named Officers of the APPG are now:

Chair: Sir Peter Bottomley MP
Co-Chair: Countess of Mar
Vice-Chair: Mark Tami MP
Secretary: Jacob Rees-Mogg MP

The APPG on M.E. aims to improve the lives of people with M.E. by working collaboratively to stimulate greater understanding and awareness of the illness and tackling key policy areas to improve outcomes for people affected by M.E.

The group will now be listed in the official Register of All-Party Parliamentary Groups and consists of backbench Members of the Houses of Commons and Lords. Although it does not have any formal powers, it plays an important role in drawing the attention of MPs, Ministers and Lords to M.E. related issues.

Thank you to everyone who encouraged their newly elected (or re-elected) MP to join.

Information required for All Party Parliamentary Group on ME (APPG) on 22 January.   Please can you help   I am collating information given on page two of the membership questionnaires for the current year.  
There maybe a few people I will contact direct if I have specific questions following on from their replies, but in the meantime, if you have seen Dr Mark Roberts and have (or have not) been referred to the Local Multi-Disciplinary Team (LMDT), and feel there is anything you would like to add either about your appointment with Dr Roberts or the LMDT - please let me know. (Names are not included on the collated information)   The following describes the type of info required:   Permission to Repost   Following are extracts from messages received from Charles, on IMEGA-E
(he has given permission to repost)   "It would be very helpful if anyone … … … could let the MEA know if any significant changes have taken place, or are due to take place, with regard to existing NHS services provided by the 13 CNCCs (Clinical Network Co-ordinating Centres) and their LMDTs (Local Multi-Disciplinary Teams) - especially closures or cut-backs that have not already been discussed by the APPG.
We can then raise these as specific issues with Ann Keen at the APPG meeting on January 22.   It's most important that we get to know of any concerns re CNCCs and LMDTs that are not already on record.   A similar request for info will be going out in January ME Essential. The MEA wants to receive all types of feedback about current and proposed NHS hospital based services for people with ME/CFS.   This can include: positive experiences;
negative experiences;
concerns;
information about closures or cutbacks etc etc.   We are quite happy for this request to be reposted as widely as possible."     Renewal of your membership helps the Group help people with ME/CFS/FMS.  If you have been meaning to complete the form, but not got round to doing so, - please send it to Bob soon.  His address is on page 2.    

Jill Pigott 
Patient/Carer Representative 
Worcestershire M.E. Support Group

Hello all,

As you will see from the following, MPs who represent members of our Group have been informed of the date of the next All Party Parliamentary Group on ME meeting.

Please encourage your MP to become involved in this Group.

Many thanks

Jill

Jill Pigott <worcsmegroup@yahoo.co.uk> wrote: Date: Sun, 16 Dec 2007 22:41:51 +0000 (GMT)
From: Jill Pigott <worcsmegroup@yahoo.co.uk>
Subject: APPG on ME - Tuesday 22 January
To: Michael Foster paynem@parliament.uk,
Mark Harper harperm@parliament.uk,
Sylvia Heal heals@parliament.uk,
Julie Kirkbride kirkbridej@parliament.uk,
Peter Luff luffpj@parliament.uk,
Jacqui Smith smithjj@parliament.uk,
Michael Spicer stewartj@parliament.uk,
Dr Richard Taylor PRICEMAH@parliament.uk,
Lynda Waltho walthol@parliament.uk,
Bill Wiggin billwigginmp@parliament.uk
CC: Countess of Mar marm@parliament.uk,
Liz Lynne MEP elynne@europarl.eu.int


Just to let you know, the following message was received via IMEGA-E:

APPG on M.E.
www.afme.org.uk

The next meeting of the All Party Parliamentary Group on M.E. will
take place in Committee Room 17, House of Commons, at 4pm on Tuesday
22 January.

Unfortunately the Secretary of State for Health was unable to attend
on any of the dates suggested but Ann Keen MP, Parliamentary Under
Secretary of State for Health Services, has agreed to speak to the
Group.

Details are being finalised and an agenda will be circulated in due
course.

Mrs Keen is well aware of M.E. issues, both as a former nurse and as
constituency MP for members of Network MESH (West London).

Best wishes to all for Christmas and the New Year
and thank you for your support during 2007

Jill Pigott 
Patient/Carer Representative 
Worcestershire M.E. Support Group
(www.geocities.com/worcsmegroup/)
(01905 455187)

--- In IMEGA-e@yahoogroups.com, "Colin Barton" <colin.sussexme@...>
wrote:

APPG on M.E.
www.afme.org.uk

The next meeting of the All Party Parliamentary Group on M.E. will
take place in Committee Room 17, House of Commons, at 4pm on Tuesday
22 January.


Unfortunately the Secretary of State for Health was unable to attend
on any of the dates suggested but Ann Keen MP, Parliamentary Under
Secretary of State for Health Services, has agreed to speak to the
Group.

Details are being finalised and an agenda will be circulated in due
course.

Mrs Keen is well aware of M.E. issues, both as a former nurse and as
constituency MP for members of Network MESH (West London).




[Non-text portions of this message have been removed]

--- End forwarded message ---