• ME Association Full Guidance:  Coronavirus and ME/CFS by Dr Charles Shepherd
Dr Charles Shepherd, Hon. Medical Adviser of the ME Association (MEA), gives a new blog containing important new information and guidance that has emerged since the last main MEA update was published on Tuesday 24 March.  It features comprehensive and up to date details on all aspects of coronavirus and ME/CFS, and includes all the latest information and guidance from the UK Government.

This latest blog gives up-to-date information on -
1. Controlling the spread of the virus
2. Testing for the virus
3. What to do if you have symptoms suggestive of coronavirus infection
4. ME Association working arrangements
5. Employment
6. Shopping – Food and Medicines
7. Government Guidance: The vulnerable and extremely vulnerable
8. Research
9. The new NICE clinical guideline on ME/CFS 
10. Can pets catch and transmit the infection?
11. Possible forms of treatment  

The blog is followed by the main guidance section, containing -
A. The Coronavirus (Covid-19) – What it is, testing, treatment, vaccination etc.
B. What are the symptoms of the coronavirus infection?
C. What should you do if you have a new onset of cold or flu-like symptoms?
D. Who is most at risk of catching this infection?
E. Why people with ME/CFS should qualify as being vulnerable.
F. Why people with ME/CFS are not considered extremely vulnerable.
G. How can you prevent yourself from getting infected? Can pets transmit the infection?
H. What contact can you still have with other people? Social mobility, distancing, self-isolation and shielding.
I. What help is there for carers?
J. Education and Employment.
K. Shopping, food and medicine delivery.
L. Foreign Travel.
M. Hospital and other medical appointments.
 
• The 25% M.E. Group inform us of the useful medical information when treating COVID-19 in patients with underlying myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) and severe fibromyalgia (FM).   The two page leaflet available to download states that if your patient has been diagnosed with ME/CFS/severe FM, you should assume they have a serious, chronic, multisystem illness that may negatively impact their prognosis. The intention of this letter is to provide basic advice and medical/scientific information about ME/CFS/severe FM that can inform medical decisions.
 
• #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.
 
• 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.
AfME’s Advice for people with M.E.

Other than on social distancing, no specific advice has been shared for people with M.E. If you are concerned, we urge you to seek professional medical advice.

Dr Nancy Klimas, Director at the Institute for Neuro Immune Medicine at Nova Southeastern University has shared a video, COVID-19 and M.E./CFS. Dr Klimas recommends following guidelines on hand washing and social distancing, and offers her thoughts on face masks, and taking supplements. She says that people with M.E. “probably are at a greater risk if you're exposed, because one of the underlying problems in M.E. is that the cells that protect you from viruses are less functional. Most of you have plenty of these cells, but they've been working so hard that they've depleted their resources and they're not able to do as much if they come across a virus.”
 
• Coronavirus (Covid-19): Letter to Supermarkets & MPs
Initially shown on the ME Research UK website, followed by articles from The ME Association, the 25% ME Group, and Action for ME who all write about the need for priority shopping for people with ME/CFS.
 
• The ME Association told us about a Listening Books offer.
Listening Books, that great online institution who have Stephen Fry as their patron, have come up with a special offer to help people while away the hours while they are in lockdown.

For those who really can’t afford the £20 a year to borrow up to 10 audiobooks a week, they’re offering completely free membership instead.  And, unlike some state benefits, there’s no means test – just a requirement from you to pop a note into their honesty box which says you can’t afford the fee.
 
• 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

 
Take care, and stay safe everyone.

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
 

Guidance on social distancing for everyone in the UK and protecting older people and vulnerable adults.

• The UK Government announced new guidance with regard to people with underlying health conditions and Social Distancing.
This guidance is for everyone. It advises on social distancing measures we should all be taking to reduce social interaction between people in order to reduce the transmission of coronavirus (COVID-19). It is intended for use in situations where people are living in their own homes, with or without additional support from friends, family and carers.
 
• The ME Association gave a new detailed ME Association Guidance on 17 March following the Government’s announcements that day - Coronavirus Covid-19: Latest Government advice and what it means for people with ME/CFS.  Dr Shepherd explained that the UK Government has released new advice and recommendations that will affect people with ME/CFS.

Further comprehensive information is available from the MEA Guidance published the previous day -  'ME Association Guidance: Coronavirus and ME/CFS by Dr Charles Shepherd' on 16 March.
 
The MEA explained, that with the UK government now moving on from attempted containment of the virus to delaying the spread, we have also reached a new stage when it comes to how people with ME/CFS should be reducing the chances of catching this infection.
The MEA said the key preventative measures remain exactly the same:
– avoiding infections on surfaces by keeping them clean, wherever possible,
– thoroughly washing hands and wrists after touching surfaces away from home,
– not touching your face,
– keeping well away from anyone who has any signs of an infection,
– keeping a safe distance from everyone else – even people you know!   
 
• #MEAction now have a 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.
 
• Action for ME (AfME) now 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.
 
• 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

• #MillionsMissing will be virtual this year. 
The situation of COVID-19 is rapidly changing. We wanted to be optimistic that this situation would improve for the better, but even in the last 48 hours the situation has dramatically shifted. The WHO is officially classifying the virus a pandemic. COVID-19 is now affecting more than 127,000 people worldwide. 
We can’t in good conscience, continue with in-person #MillionsMissing events. We care about the health of you and every person that would have come to these events. We are still doing #MillionsMissing on May 12th. It will all be virtual. Our community has always had a strong, powerful, and supportive virtual presence. This event will be no different. 

• Occupy M.E.  Safety in Isolation.   
A helpful blog from Jennie Spotila, giving information on physical/emotional safety while we all live with new restrictions and social distancing/isolation, particularly useful for people with ME and their families and friends.
 
Take care, and stay safe everyone.

(post updated on 21 March)

The Worcestershire ME Social Group Lunches and Afternoon Café Meetings are being cancelled for the time being, due to the situation with Coronavirus (covid-19).

This includes the social gathering on Monday 23rd March, plus dates on the Worcestershire ME Social Group website - http://worcsmegroup.weebly.com/meetings.html

Our Coronavirus (COVID-19) blog gives guidance for people affected with ME/CFS.  It will be updated shortly with the latest situation, giving information from the M.E. national charities.

Dr Charles Shepherd, Hon. Medical Adviser, ME Association, provides updated information about the virus and how you can help prevent infection.  The ME Association issued information and guidance about the coronavirus in early February.  To take into account the changing situation in the UK, this is now being updated and issued on a weekly basis.

Dr Charles Shepherd, gives detailed Coronavirus - Covid-19 information, covering:  ‘Symptoms’, ‘Who is most at risk?’, ‘Prevention of spread - Respiratory and hand hygiene’, ‘Social mobility and Foreign Travel’.

The MEA explain that this information is intended to be used as general guidance on coronavirus infection in relation to ME/CFS.  If you require individual guidance or advice please consult your GP, who can take this information into consideration.
ME Association Guidance: Coronavirus (covid-19) Update | 09 March 2020.
 
The 25% M.E. Group has leaflets available to download for people with severe M.E. on its website.

• Coronavirus Update 7 March
• Coronavirus and members of the 25% ME Group

Action for ME give explanations, and points out that with "the post-viral risk associated with any virus, and the rapid spread of Coronavirus (COVID-19), it is likely that we will see an increase in the number of people being diagnosed with M.E. in the longer term."  "and underlines the serious and urgent need to accelerate research that helps us understand the causes of M.E. and/or CFS."
Action for M.E. Update on Coronavirus and M.E. March 04, 2020.

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.

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.

Worcestershire Health & Care NHS Trust would like to hear your opinions and feelings to help develop their future local Neurology Rehabilitation Care Services.

How to get involved - the NHS Trust are holding events in Worcester and Bromsgrove, where you can hear what they do now, and give your views on how things could be improved.
Events:

• 26 February 2020, 2.00 to 4.00 pm, St Peter’s Baptist Church, Eden Close, Worcester, WR5 3TZ
• 5 March 2020, 2.00 to 4.00 pm, BHI Parkside, Stourbridge Road, Bromsgrove, B61 0AZ

For more information or to reserve your place - email b.banner@nhs.net or call 01905 681495

The Worcestershire Health & Care NHS Trust want local people who have experience of neurological conditions to help them develop a better, more equitable service for future patients and families/carers.
Share this information, and help publicise the Neurology Rehabilitation Care Services future development with their poster (see below).

A very large genetic study into ME/CFS.
The ME/CFS Biomedical Partnership are asking for help.  Sign up on the website, to indicate if you want to hear about the study, and whether you want to take part.  The FAQs page answers many questions, under several topics - Science/Research; Recruitment/Taking Part; Funding; The Partnership; and Public & Patient Involvement.
ME/CFS Biomedical Partnership: Genetics and Biomarkers is a partnership of researchers, people with ME/CFS, carers and the public.

Early in 2020, the partnership will make a grant application to the Medical Research Council and the National Institute for Health Research for a very large genetic study into ME/CFS known as a genome-wide association study.
The project will be led by Prof Chris Ponting at the University of Edinburgh in partnership with the UK ME/CFS Biobank at the London School of Hygiene & Tropical Medicine.

The study will analyse DNA from the saliva of 20,000 ME/CFS patients to see whether ME/CFS is partly genetic and if so, what causes it. The study should help us understand the disease and find treatments.

The ME/CFS Biomedical Partnership Patient and Public Involvement (PPI) Steering Group is made up of people representing groups or networks from the ME/CFS community, including Sonya Chowdhury of Action for ME (AfME), Dr Charles Shepherd of the ME Association (MEA), and the Countess of Mar of Forward-ME.

Find out more -
AfME and the MEA both recently gave further explanations, and the MEA January monthly survey asks -  would you be willing to take part in research that will investigate the genetics of M.E.?

Two recent useful explanatory blogs, both with comments and responses -
• Trial By Error: The UK’s Proposed Genetics Study, By David Tuller, DrPH.
• Sign up! Your support could help win funding for a game-changing ME/CFS study, By Simon McGrath.

Further background information can be found from the AfME article “ME/CFS Biomedical Partnership”, plus the Forward-ME six page leaflet “The ME/CFS Biomedical Partnership: Genetics and Biomarkers Genome-wide association study: Questions & Answers”, and the MEA article “ME/CFS Biomedical Partnership PPI Steering Group Update”.