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.

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.

The contact information for the Worcestershire MPs is on the links page.
Below are copies of the Conservative Manifesto and the Costings Documents:

There are at present BSL versions on the Conservative Youtube page (Part 1, Part 2, Part 3, Part 4), and audio version on their website.

The Worcestershire ME Support Group’s "Symptoms of M.E./CFS" gives symptoms taken from ‘Living with M.E.’ by Dr Charles Shepherd, ‘M.E. - How to Live with It’ by Dr Anne MacIntyre, and ‘The Disease of a Thousand Names’ by Dr David Bell.  The percentages shown represent M.E. patients displaying that particular symptom.  Many people with a diagnosis of ME, and/or ME/CFS, find this helpful when explaining their symptoms to their doctor.

Worcestershire ME Support Group members' helpful and unhelpful responses.
The Worcestershire ME Support Group received members’ helpful and unhelpful responses back in 2003/2004. 

This information may still be helpful for people trying to understand ME/CFS, and how some people can be helped.  The information is taken from completed membership questionnaires in the year ending August 2004.

There is a Group Disclaimer on the last page -
"Views and opinions expressed in this document are the personal beliefs of the individual contributor.  They may not represent the feelings of all members, and are not necessarily those of the Worcestershire M.E. Support Group.

The committee and Worcestershire M.E. Support Group do not endorse or recommend any particular treatment, therapy or practitioner.  Practitioners and treatments mentioned are for information only.  Any treatment, tests or remedies mentioned may be tried at your own risk, but preferably after consultation with your GP."

The Group on Scientific Research into Myalgic Encephalomyelitis (GRSME) - Chaired by Dr Ian Gibson MP for Norwich North from 1997 to 2009, and Vice Chair, Dr Richard Taylor, MP for Wyre Forest from 2001 to 2010.

In 2006 the Worcestershire ME Support Group’s Presentation at the Gibson Enquiry included a reference to the members’ helpful and unhelpful responses.

"A couple of years ago our Group asked what members found helpful and what had been unhelpful.  The replies showed how much money and time is used going from one complementary therapy to another trying to find something that will relieve some of their many symptoms.  They also try various supplements without knowing which would be of benefit to them.  All this is costing people hundreds of pounds, and yet the majority are living on a very reduced income, or benefits."
 
Full presentation - http://www.erythos.com/gibsonenquiry/PresDocs.html

Four recent publications -
 "Supporting you and your patients with ME/CFS" - Forward-ME's Briefing for GPs.
"A Community … and ME" - Invest in ME Research’s new 42 page booklet.
"Worcestershire GPs’ CFS/ME referral protocol" - highlighted on our blog, in April this year.
"ME Association Clinical and Research Guide" - The Purple Book, 2019 edition.

The following gives more information about these publications  -

• Help your GP understand M.E. -
"Supporting you and your patients with ME/CFS" - Forward-ME's Briefing for GPs.
Copies of the 4 page Forward-ME Briefing "Supporting you and your patients with ME/CFS" were distributed at the Royal College of GPs Conference in Liverpool last month.  During the conference, Action for ME and the ME Association advised GPs on how they can best help people with M.E./CFS.

• Help everyone understand M.E.-
"A Community … and ME" - Invest in ME's 42 page booklet. 
In order to raise awareness of how ME affects a community, Invest in ME Research looks at some figures in society and views their perception of the disease and the problems they are confronted with.   The new downloadable booklet, available to share.

• Help your Worcestershire GP understand M.E.. -
"Worcestershire GPs’ CFS/ME referral protocol" - highlighted on the Worcestershire ME Social Group’s blog in April this year.  Also highlighted on the Group’s handout.

• Help your healthcare professional understand M.E. -
"ME Association Clinical and Research Guide".  Free copies of The Purple Book - 2019 edition are available for health professionals.  The MEA again offer free copies of the 214 page print version to GPs, NHS consultants and other healthcare professionals in the UK.   Highlighted on the Group’s handout.

• Help your Parliamentary Candidates understand M.E. -
If you see your local candidates or their representatives, tell them about this blog, the Worcestershire ME Social Group’s website, and our social gatherings.  Worcestershire MPs' contact information will be updated on the Social Group’s website after the General Election.

Employment Support Allowance (ESA) and Personal Independence Payment (PIP) will be discussed this Friday, 14 June. The ME Association (MEA) would like to hear of specific problems, within the past year or so.
From the MEA we hear that Dr Charles Shepherd, Hon. Medical Adviser, ME Association, and the Countess of Mar, Chair of Forward-ME, will be attending.  See the MEA article for explanations of how to respond to the MEA with your recent experiences.

Inform your Worcestershire MP of your situation -

Carol Monaghan MP has secured the meeting on Friday with Justin Tomlinson -  Minister for Disabled People, Health and Work  - to discuss problems relating to all aspects of claims and medical assessments for state benefits.  This week’s Benefits Discussions follows the House of Commons chamber “Appropriate ME Treatment” Debate in January. 

See “Commons M.E. Debate, 24 January. Transcripts, YouTube and Reports” on our group blog.

You can read the Appropriate ME Treatment Debate transcription in Hansard, watch the full debate on YouTube, and see reports information below.

The #MEAction Network detailed report -
‘Historic Parliamentary Debate Shaped by People with ME’ highlighted that Stephen Pound MP made an especially rousing contribution to the proceedings, declaring that:
“This House recognises the reality of your condition. This House will not sit idly by while you suffer. This House will not ignore you. This House will devote its intelligence and its resources to research, ultimately to resolve and to cure, this terrible condition (…). ME sufferers the world over must know that this House and this nation is finally speaking for you.”

The #MEAction Network told us “Over 40 MPs from across the political divide sat in the House of Commons to debate a motion on myalgic encephalomyelitis (ME), with 27 making impassioned contributions on behalf of their constituents.” and gave us links to all MPs who spoke.

The ME Association’s (MEA) press release highlighted - ‘Parliamentary Debate: Kids being taken into care by medics who refuse to believe ME is real’. 
The MEA press release states - ‘MP Carol Monaghan, who brought today’s motion, led calls for more funding for research and better medical training to help support patients.’  MP Carol Monaghan said - “Leading up to this debate, I have been asked repeatedly what I hope to achieve. Ultimately what I want, and what the ME community wants, is better treatment and care for those with ME.” 
The MEA report includes ‘Comment on the Debate’ by Dr Charles Shepherd, Hon. Medical Adviser, M.E. Association; plus a list of MPs who were present.  Also it draws attention to child protection proceedings, suspension of controversial therapies, improving medical education, and research funding.

Action for ME (AfME) pointed out that they will be working with Forward ME to share the results of its survey for NICE on CBT and GET with MPs, once the report has been published. 

Please share your experiences.  See our blog earlier this month - NICE CBT and GET Patient Survey - Please complete by 31 January. 

ME Research UK (MERUK) gave a summary and commentary on ‘Commons Debate 24 January 2019’.  The MERUK report explained that “regrettably, pressure of time meant that MPs were asked to limit their speeches progressively from 4 to 3 and then to 2 minutes apiece and so much useful comment was probably left unsaid and the opportunity to make specific points lost. Nevertheless, 27 backbench MPs had the opportunity to contribute to this important debate.”

Prior to the debate, MERUK gave a ‘Background to House of Commons Debate’ article, explaining the research situation.  

M.E. Parliamentary Debate, in the House of Commons, Thursday, 24 January, 2.00pm. (Motion quoted further below.)

All Worcestershire MPs are encouraged to attend this important debate secured by Carol Monaghan MP.  Write to your MP. 

Robin Walker, MP for Worcester, said “I believe that research into this area is vital”, in a letter following the M.E. debate held in June 2018.

On 24 January, biomedical research will be amongst a number of major issues and concerns raised. 

These are referred to in the motion:
“That this House calls on the Government to provide increased funding for biomedical research into the diagnosis and treatment of M.E., 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 M.E. and appropriate management advice to reflect international consensus on best practice, and is concerned about the current trends of subjecting M.E. families to unjustified child protection procedures.”

These issues and concerns are described in more detail in the briefing document that has been prepared and supported by national charities, who are members of the Forward ME group of charities.

The ME Association, and Action for ME give full information on this week’s debate. 

The June 2018 debate is available to watch on Youtube, and you can read the full Hansard transcript.

Full debate - available to watch on Youtube, and read the full Hansard transcript.

Also, the complete Ministerial response from a ME Association article - the Parliamentary debate on M.E. treatment and research.

Since the debate - Reports from the ME Association (MEA) and Action for ME (AfME):

ME Association: MPs demand more biomedical research for cruel ‘death sentence’ disease | 22 June 2018
MPs demanded more funding for research into a cruel “death sentence” disease affecting 250,000 people in the UK - and the immediate end to NHS-recommended treatments that are making patients worse.

Action for ME: Parliamentary debate on M.E. - our summary June 21, 2018
“At the moment M.E. receives practically no funding in terms of biomedical research…the treatments that are currently available are often more damaging to the person than no treatments at all.”