How many times have you used the NHS (GP, clinic, hospital etc.) in the last 12 months because of your M.E.?
 
ME Association’s September website survey - 
The MEA ‘quick survey’ is half-way down on the home page of the MEA website  www.meassociation.org.uk . 

The MEA are asking people to contact them, as well as voting on the survey
“Whatever your reasons for using (or not using) the NHS, we’d really like to hear from you.

Please join what we hope will be a productive discussion on Facebook, and share your own experiences. You can also send them to us in an email (Title ‘The NHS and M.E.’).”

The MEA we want to talk about the NHS and the extent to which people with ME/CFS use the services that are currently available to them.
The MEA full article explains how the NHS can support people with M.E. - or see the pdf below.

Severe M.E. was featured on BBC Radio 5 live - in the Afternoon Edition programme. 
You can listen to the ME/CFS feature at - www.bbc.co.uk/programmes/b0bd75rp  - it begins at 2hrs 8mins into the broadcast.  It followed the 3pm news and continued until about 3.35pm.

Dr Charles Shepherd, the ME Association Hon. Medical Adviser, was interviewed by presenter Nihal Arthanayake, along with a former university student suffering from severe M.E.  The feature also included pre-recorded interviews from Gary Burgess and Merryn Crofts' sister Amy Williams, and feedback from listeners about their experiences.

Around one in four people with M.E. are severely affected by the condition. They are house or bed bound, unable to properly care for themselves or even wash properly, with some even reliant on tube feeding.  Many people with M.E are light and sound sensitive, with people with Severe M.E. often forced to live their lives in darkened rooms.

Severe M.E. articles from Action for ME and the ME Association

Action for M.E. highlight their awareness-raising film, My life is over: the pain of severe M.E., explaining what it's like to live with severe M.E.  Plus, Emily Collingridge’s book Severe M.E./CFS: a guide to living offers guidance on every aspect of living with severe M.E.

M.E. Association’ press release concentrates on two teenagers hit by devastating severe M.E. who reveal the brutal reality of life with the disease. 

The MEA detailed article gives links to

• Daily Mail 'Teenager is left battling chronic fatigue after a parasite burrowed into her EYE: 19-year-old claims the bug was in tap water which ended up on her contact lens and could now kill her'
  
• Daily Mirror 'Girl’s life ‘ripped to pieces’ after parasite found in tap water burrows into eye where it is now sleeping'

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.”

A 3-hour Westminster Hall debate on Myalgic Encephalomyelitis (ME) treatment and research has been scheduled for Thursday, 21st June, 1:30-4:30 p.m.

The ME Association, #MEActionUK, Action for ME and The ME Trust, jointly produced a parliamentary briefing for use by MPs in the debate.  This briefing is intended as a comprehensive resource for MPs, to provide any extra information required to supplement the concerns raised by their constituents.

Encourage your MP to attend - forward the Parliamentary Briefing, and describe how you are affected by M.E.   Scroll down here for all Worcestershire MPs’ contact information.

Further information from -
#MEAction:-
UK: Urge your MP to attend the 21st June debate on ME.
The ME Association:-  
Carol Monaghan and other MPs secure Westminster Hall debate on M.E. | 07 June 2018.
NICE decides to Fully Update its guideline on ME/CFS! | 20 September 2017 
Action for ME:- 
Westminster treatment and research debate confirmed.   -
The Canary
An MP is calling for a debate into one of the ‘biggest medical scandals’ of the 21st century.
The truth about NHS research funding that should shame the government.  

To see the messsages from the takeover /George & Marina:
use this twitter search link (searches the @WorcsHealthCare account
from 7th to 10th May).

Marina (Team Lead/ Specialist Occupational Therapist) and George (Honorary Assistant Psychologist) dropped in on the social group at the afternoon cafe meeting today.

Events in Worcestershire and nearby during May:      

• Wednesday 4 April - Sunday 20 May
Art and Verse Exhibition at the Artrix, Bromsgrove. Invisible: A New Look at M.E. by Anne Nicholls

From MEA facebook on 20 April:
Anne Nicholls who is exhibiting at The Artix in Bromsgrove, was interviewed on BBC Radio West Midlands recently.  The interview takes place at 1hr 20mins into the broadcast, and lets you know what the exhibition is all about as well as raising awareness of the issues relating to M.E. (Interview available until 15 May).
 
• Thursday 10 May
Worcestershire M.E. Social Group Afternoon Café Meeting -
- The Olive Grove Cafe, - David's Nurseries, Ash Lane, Worcester, WR3 8TB
David's Nurseries is closing but the Olive Grove Cafe is open. Cafe website & facebook.
Join us for a bite to eat, or just a cuppa and chat.
 
• Friday 11 May
Birmingham Millions Missing Protest.
People from Worcestershire are welcome at the Birmingham Missing Millions Protest being organised by the Walsall Fibro and ME Link and Solihull & South Birmingham ME Support Group.
 
• Monday 21 May
Worcestershire M.E. Social Group Lunch
- The Mayfly Restaurant, Cob House Fisheries, Worcester Road, Wichenford, Worcester, WR6 6YE
Join us for a bite to eat, or just a cuppa and chat.
 
• Wednesday 30 May
Worcestershire NHS Chronic Fatigue Syndrome/M.E. Service Recovery And Management (RAM) Group.

Update: Dr Mirella Ling will not be at the May RAM meeting but will be now at the July one.
 
Worcestershire NHS Chronic Fatigue Syndrome/M.E. Service
Recovery And Management (RAM) Group Calendar

Topics for May and July -

• ‘Travelling with CFS/ME’
• ‘A Medical Perspective’ - guest speaker - Dr Mirella Ling, Lead Clinician of the Worcestershire Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) Local Multi-Disciplinary Team (LMDT)

The Recovery And Management (RAM) group is run on a bimonthly basis.  It is held on the last Wednesday of every other month at Ability House, St John's Campus, Henwick Grove, Worcester, WR2 6AJ.

The RAM group is open to anybody who has previously received treatment from the service and has now been discharged.  Each session is open, though it is requested that you call the service to confirm your attendance beforehand (01684 612671)

Please take part in the ME Association website survey now.  The MEA are focusing on work and education issues.  Explanations are in the “Countdown to ME Awareness Week article”.

• ME Association: The countdown to ME Awareness Week begins today and we’re focusing on issues relating to work and to education | 12 April 2018
  
  

Action for M.E. is supporting the Millions Missing campaign at an event in Geneva - You can get involved from home.

May 12th has been designated as International Awareness Day for Chronic Immunological and Neurological Diseases (CIND) since 1992. The CIND illnesses include Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Fibromyalgia (FM), Gulf War Syndrome (GWS) and Multiple Chemical Sensitivity (MCS).

A brief history of International May 12th Awareness Day.

People from Worcestershire are welcome at this event being organised by the Walsall Fibro and ME Link and Solihull & South Birmingham ME Support Group.

This year’s Birmingham Millions Missing Protest will be taking place on Friday 11 May at St Philip’s Cathedral Square, Colmore Row, B3 2QB, from 12.00 noon to 3.00 pm.

Anyone from Worcestershire who would like to attend is most welcome for as short or as long a time as they can manage - bring family and friends to swell the numbers too.  Bring shoes, labelled ‘millionsmissing’.  Also, anyone who would like to send a message, please email for further details.

Updates appear on the event’s facebook.
Facebook Group: Millions Missing Birmingham UK (need to login)
Facebook Event: Millions Missing - Birmingham (don't need to login to view)

About the 2017 Birmingham Millions Missing Protest:

Post from this blog.

2017 05 12 M.E. action Birmingham Millions Missing Event - YouTube
34 secs. 15 May 2017 - Uploaded by Richard Lewis
Gathering for the group photos, which can be viewed here, with the rest from Fri 12th May's ME awareness ...
 
Campaigners step out for ME | Shropshire Star
10 May 2017 - “The Birmingham rally is part of the 'Millions Missing' international campaign which works to improve the lives of those with this debilitating long-term illness. Many cities around the world will be rallying.” ME stands for Myalgic Encephalomyelitis, otherwise known as Chronic Fatigue Syndrome. Across the ...
 
Alison Jay shared an event to ITV Central's timeline: Alison Jay - MILLIONS MISSING EVENT – FRIDAY 12TH MAY 2017 ...
MILLIONS MISSING EVENT – FRIDAY 12TH MAY 2017. TIME: 1.00 – 5.00 pm, VENUE: St Philips Cathedral Square, Colmore Row, Birmingham B3 2QB. Awareness Day is held on 12th May, as this was Florence Nightingale's Birthday and it is believed she had Myalgic Encephalomyelitis (ME). This year is the 25th .

Documentary “Unrest” at the Artrix Cinema, Bromsgrove 
Sunday 8th April 2018 at 7.30pm
 
Disbelieved by doctors, Jennifer Brea turns the camera on herself to reveal the hidden world of millions confined to their homes by ME in her film.
 
Exhibition - Invisible: A New Look at M.E. - will be open on performance evenings
 
Also, Info is on Page 38 of the Artrix magazine.

Previous blog post about "Unrest".
Blog post about exhibition "Invisible: A New Look at M.E.".