Latest Free Leaflet Update: Covid-19 and ME/CFS by Dr Charles Shepherd. 
This week, the ME Association (MEA) issued an update to their general leaflet on Covid-19 and ME/CFS.  This 12 page leaflet is part of a range of leaflets the MEA have made freely available during this unprecedented crisis. The MEA hope they will continue to provide help and reassurance and will keep updating them as necessary.
The detailed leaflet covers -
Controlling the spread of the virus;  Hand and Respiratory Hygiene;  Vaccine Development;  Testing for the virus;  What to do if you have symptoms suggestive of coronavirus infection;  Shopping - Food and Medicines;  Employment Government Guidance: The vulnerable and extremely vulnerable;  ME/CFS Research Progress on the new NICE clinical guideline on ME/CFS ;  Can pets transmit the infection?;  Possible forms of treatment;  What should people with ME/CFS do if they catch Cv19?;  Face Masks;  What should previously healthy people do if they experience symptoms suggestive of post infectious fatigue and/or ME/CFS?;  Hospital based referral services for ME/CFS
 
The MEA’s recent Covid-19 leaflets and letters are all available to download,

1. 12 page Covid-19 and ME/CFS Weekly Update -
2. 4 page MEA information on Reducing the risk of infection -  Reducing the risk of catching Coronavirus if you have ME/CFS leaflet by Dr Charles Shepherd.
3. 8 page MEA information on PVF / PVFS / ME / CFS following Covid-19 Infection - Post-viral fatigue (PVF) and Post-viral fatigue syndrome (PVFS) following Coronavirus Infection.  
4. MEA statement, signed by Dr Charles Shepherd, in Letter: Asserting your vulnerable status.
5. 4 page MEA detailed leaflet on Benefits - Your Benefits during the Coronavirus Crisis. 
6. MEA Employment Guidance: Key points on Employment, ME/CFS and the Coronavirus.  

Action for ME (AfME) have a 'Coronavirus and M.E./CFS' page - which has been set up to keep track of up-to-date advice regarding Coronavirus, and support available from Action for M.E.  AfME are monitoring this page, and it gives the time when it was last updated.
 
#MEAction continue to add information to their Covid-19 Resources page, giving information about the coronavirus outbreak and its effect on people with ME. It includes links to useful governmental sites regarding the outbreak as well as resources and articles particularly developed for people with ME. 
 
The 25% M.E. Group has leaflets available to download for people with severe M.E. on its website.

• Message from Dr Willy Weir and Dr Nigel Speight, Medical Advisor to the 25% ME Group - Coronavirus Update 7 March
• Message from Dr Nigel Speight, Medical Advisor to the 25% ME Group
  Coronavirus and members of the 25% ME Group

 
Local Information
 
Worcestershire Health & Care NHS Trust. 
COVID19 (coronavirus) - Information if attending an appointment
From Monday, 15th June 2020 if you are coming to any of our hospitals, inpatient wards or clinics it is important that you wear a face covering at all times.  The website gives full information.
 
Healthwatch Worcestershire’s Covid-19 Survey
Healthwatch Worcestershire is asking local residents to share their views during the Coronavirus Covid-19 outbreak. They have launched a survey to gather feedback about information available in relation to Covid-19 and experiences of accessing local health and social care services at this time.
The survey can be completed online via Healthwatch Worcestershire’s website - www.healthwatchworcestershire.co.uk/covid-19-survey/. You can also contact them directly for further information, paper copies of the survey, or to share any experience of local health and social care services -info@healthwatchworcestershire.co.uk or 01386 550264.
 
Healthwatch Worcestershire was established as the independent consumer champion - giving the public, patients and users of health and social care services in Worcestershire a voice. 
 

The Worcestershire County Council: Covid-19 Information. 

Coronavirus (COVID-19) Outbreak Control Plan (First issued on 30 June. available on their main Covid-19 page)
As part of the next phase of the national response to the COVID-19 pandemic, Worcestershire County Council is required to produce and deliver a Local Outbreak Control Plan. The plan details how Worcestershire County Council and its partners will prevent and respond to any outbreaks and incidents of COVID-19 in Worcestershire.
To minimize local outbreaks, we need everyone to play their part. By continuing to follow the social distancing guidance, practicing good hand hygiene and testing and isolating when necessary, we can all keep ourselves and everyone safe.
(This section amended on 1 July 2020)

Dr Kathryn Cobain, Director of Public Health in Worcestershire, explains how the R rates are calculated nationally and regionally, and that data is drawn from many official sources and the process is complex and robust.  Here in Worcestershire, we fall under the Midlands region for this data, and this includes a very large area, across the East and West Midlands. It is not possible to calculate a meaningful R rate at a very local level, for example in cities such as Worcester. An R rate even at County level would not be a reliable and robust interpretation of the data.
This is because the data gathered is at such low numbers that even a minor change can create a disproportionate difference. Locally we review a multitude of early warning indicators, and look for signs of change. We continue to monitor the situation closely to ensure the safety of our residents.
 
Take care, and stay safe everyone.

• The Chronic Illness Inclusion Project (CIIP) Survey.
CIPP - Bridging the chronic illness community and the disability rights movement.  Do you have energy limiting chronic illness (ELCI)?  Are you dealing with health condition(s) that cause symptoms such as physical fatigue, mental fatigue and pain, which significantly restrict your day-to-day activities?

Dr Anna Ruddock, Advisor to the CIIP, says
"We are conducting this survey as part of the Chronic Illness Inclusion Project (CIIP). The CIIP works to build a collective voice for people with chronic illness so that we are better accounted for and included in society. The aim of this survey is to gather evidence for an inquiry by the UK Parliament’s Women and Equalities Committee into the unequal impact of Coronavirus (Covid-19) on people with protected characteristics. The Committee will use this evidence to provide recommendations to the UK government. We want to ensure that the impact of Coronavirus on people with chronic illnesses is taken into account during this process.

It should take no longer than 15 minutes to complete the survey. You can save your answers when you need to rest and return to the survey later. By completing the survey you are contributing to the effort to make the response to Coronavirus more equitable – thank you."

• Chronic Illness during the Coronavirus Covic-19 Pandemic.
This video is popular with people affected by ME.   The comedian, Miranda Hart, says - "If you are bored enough have a listen! I had a few things to share".  The part about chronic illness is mainly from around 10:40 onwards.  ME is specifically mentioned.

Another 'Chamble’ from Miranda Hart - again includes awareness on chronic illness. During this video, Miranda Hart reads, and discusses "Life in Lockdown: What Matters When All Is Lost" written by Naomi Whittingham.  Well worth watching - starts after about 14 minutes.  Naomi is the late Betty Hughes' granddaughter

• Short video to raise awareness of severe ME
In 2015, the late Betty Hughes' grandson Tom Whittingham, created a very moving ME Awareness YouTube video explaining how things are for his sister Naomi who has severe ME, and their whole family.
(From 2015 News)

The next Worcestershire NHS CFS/ME Service Recovery and Management group, on Wednesday 25 March, is being led by Sarah Sherwood, who will be talking about pain management. Sarah is an experienced Psychologist with the Pain Management team in Worcester.

The Recovery and Management group is run on a bimonthly basis, and is open to anybody who has previously received treatment from the NHS CFS/ME Service and has now been discharged.  It aims to provide people further support without having to be re-referred to the CFS/ME Service.

All sessions are run by staff members of the NHS CFS/ME Service and are held on the last Wednesday of every other month at Ability House, St John's Campus, Henwick Grove, Worcester, WR2 6AJ.
 
The Group’s 2020 Timetable -
 
March 25th 2020 - Pain management (Sarah Sherwood)
May 27th 2020 - Nutrition (Pam Clarke)
July 29th 2020 - Pilates (Sue Bratton)
September 23rd 2020 - The Alexander Technique (Rachel Kevern and Lesley)
November 25th 2020 - ‘Bring and share’ crafts and Christmas social

Please check the NHS CS/ME Service website for further information, and call the service to confirm your attendance beforehand.

The ME Association’s (MEA) article about their new leaflet summarises all the key clinical, research and political evidence supporting a neurological classification for myalgic encephalopathy/encephalomyelitis (M.E.).

A very useful leaflet, at the time when the Worcestershire Health & Care NHS Trust are requesting your opinions and feelings to help develop their future local Neurology Rehabilitation Care Services.

The MEA article includes two free factsheets - an overview of M.E., and a summary of the key research evidence of all the abnormalities found in M.E.
The MEA explain that Neurological disorders are diseases of the nervous system, which include structural, biochemical or electrical abnormalities in the brain, spinal cord or peripheral nerves that can result in a range of symptoms.

In this leaflet, Dr Charles Shepherd summarises all the key clinical, research and political evidence that supports the World Health Organisation’s classification and UK Government’s recognition of ME/CFS as a neurological disease.

The leaflet has been produced to support anyone who needs help understanding or conveying the neurological basis for the illness. It was fully revised and expanded in January 2020.

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.

Sadly, we’ve heard from Pauline Ovenden’s daughter, Heather, that Pauline has passed away.  Pauline Ovenden, was President of Herefordshire ME/CFS/FMS Group.
 
Pauline was a survivor from the Royal Free Hospital outbreak in 1955.   She was highly articulate, utterly dedicated to the process of informing the public better about ME; and as a Royal Free veteran she carried more authority than the rest of us.  In November 2004 the Hereford Support Group included Pauline’s “Personal Account of the outbreak of ME at the Royal Free Hospital” in their newsletter. 

This was then included in the Worcestershire December 2004 newsletter.
Pauline was a founder member of the Herefordshire ME/CFS/FMS Group 33 years ago, and part of a team that promoted a set of guidelines to local health authorities on ME.  Also, she represented the Herefordshire ME/CFS/FMS Group at NHS Worcestershire and Herefordshire ME/CFS Local Multi-Disciplinary Team (LMDT) steering group meetings, and the West Midlands ME Groups Consortium.
 
After the publication of the Chief Medical Officers report on M.E/C.F.S. in January 2002, the Guardian described how in 1955, Pauline was working at the Royal Free hospital in London when large numbers of staff were felled by a mysterious illness.
 
In 2007 Pauline was awarded the Herefordshire Voluntary Action ‘Volunteer of the Year’ Award in appreciation for her work for sufferers nationally and locally, and on a personal basis.  This was publicised by the ME Association.
 
We understand that Pauline’s funeral is on Friday 1st March at Hereford crematorium, 3pm.

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)

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 .