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.

Join us at our social gatherings in 2020.
All people with M.E., CFS, FMS, and their carers, friends and relatives, are welcome at all Worcestershire M.E. Social Group gatherings - please join us at whichever suits you.  Join us for a bite to eat, or just a cuppa and chat.
All 2020 Social Gatherings are shown on our meetings page.  We have Group Lunches from January to November and Afternoon Cafe Meetings from May to August, at various locations throughout Worcestershire.

For your convenience, download our Group Handout, containing 2020 Social Gatherings dates and venues.
 
ME Awareness Week in May - Monday May 11 to Sunday May 17. 
Join us at our Afternoon Café Meeting on Thursday 14 May, at the Olive Grove Café (David's Garden Centre by Cherry Lane, Martin Hussingtree, Ash Lane, Worcester, WR3 8TB)

Look out for the #Millions Missing Birmingham announcements.  Last year held on Friday 10 May in St Philip’s Cathedral Square, Birmingham.
 
New NICE Guideline on ME/CFS is delayed until the end of 2020.
The publication date will be 9 December 2020.  Last month, the ME Association (MEA) published a letter received from National Institute of Health and Care Excellence (NICE) announcing this date.

The MEA gives detailed information about the NICE Clinical Guideline review.
For more information about the guideline review, visit the NICE section of the ME Association website.

Dr Mirella Ling, Specialist in Infectious Diseases Worcestershire Acute Hospital NHS Trust, is the Lead Clinician of the Worcestershire Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) Local Multi-Disciplinary Team (Local Multi-Disciplinary Team).  Dr Mirella Ling and Dr Mark Roberts, Specialists in Infectious Diseases Worcestershire Acute Hospital NHS Trust, hold CFS/ME Clinics at Kidderminster Hospital for a new diagnosis, or when further support is required - plus an Infectious Diseases Registrar occasionally takes the clinic.

The CFS/ME Service’s website has changed.
The updated links to the Worcestershire CFS/ME Local Multi-Disciplinary Team (LMDT) page on the Worcestershire Health & Care NHS Trust website are on our ‘About ME Worcestershire’ page.

The LMDT information, includes the referral protocol giving details of symptomology and tests that should be done prior to patients being seen by the Consultants.

The 'Following discharge' link gives dates and topics for the Recovery And Management group forthcoming meetings, held on a bimonthly basis.

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

Warwick Davis, former Support Group Vice-Chair, who now organises the Worcestershire M.E. Social Group’s Lunches throughout the County, has been spreading the word. 

Warwick tells us -
“For a number of years I have been very fortunate to have had a one to one with a Third year student doctor.  My surgery is a teaching facility for the QE University Hospital, Birmingham, and one of the students was allocated to me for a case study - a long term illness, in this case ME.  My experience has cost me 30 years of my life.

This year things changed a little for I spoke to the group as whole for an hour.  Feed-back has once again been positive and they continued the discussion with the Doctor from the practice, who had sat in on the talk.  One student is now continuing with my case.

I would like to thank the ME Association for providing me with handouts for distribution to the students and the Doctor.”

Has your doctor received a copy of the MEA (ME Association) Purple Book "ME Association Clinical and Research Guide?" See also our previous "Understanding Myalgic Encephalomyelitis (ME)" blog, dated 6 November.

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.

New free MEA leaflet - giving full explanations. 
The new MEA (ME Association) leaflet is available to download and read online or print at home.  It can also be ordered from the MEA website shop or as a hard copy from the MEA head office: 01280 818964 between 9.30am and 3.00pm, Monday-Friday.

“Having a chronic neurological disease is one of the recommended criteria for NHS flu vaccination, and the classification of ME/CFS in WHO ICD10 as a neurological disease is fully recognised by the Department of Health.  So The ME Association believes that people with ME/CFS should therefore qualify for a free NHS flu jab if they decide to have one.”

The MEA website article gives us information on the 2019-2020 flu vaccine and the full leaflet weighs up the pros and cons of flu vaccination for people with ME/CFS.  It explains the science behind flu viruses and flu vaccines, and contains updated information about the strains of flu that the latest vaccination is seeking to protect people against.  Also, the leaflet gives key points in favour of having this protection, and key points where caution is required when considering flu vaccine.

We meet socially in many locations throughout the county.
All people with M.E., CFS, FMS, and their carers, friends and relatives, are welcome at all Worcestershire M.E. Social Group gatherings - please join us at whichever suits you.  Join us for a bite to eat, or just a cuppa and chat.
Our 2019 Handout gives all dates and venues for this year .

The current ME Association (MEA) Monthly Survey asks - “To what extent has loneliness and social isolation become a consequence of having ME?”  Scroll down on the MEA home page to take part.

The ME Association and Action for ME discuss loneliness during Loneliness Awareness Week.

• Loneliness, ME and the benefit of local support groups by Bill Clayton | 21 June 2019.
• How can I get connected this Loneliness Awareness Week? June 20, 2019.

 
The NHS give Loneliness and Isolation advice, both locally and nationally.

• Worcestershire Health and Care NHS Trust.
• NHS England.

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.