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.

• ME Association Guidance. 
This week the ME Association (MEA) launched a new leaflet, plus an update to add to the range that the MEA have been publishing since the very beginning of the coronavirus pandemic and national lockdown.  The MEA’s recent Covid-19 leaflets and letters are all available to download at the beginning of their latest update,

1. 12 page Covid-19 and ME/CFS Weekly Update - Coronavirus (COVID-19/Cv19) and ME/CFS leaflet
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 detailed leaflet - Your Benefits during the Coronavirus Crisis. 

 
Further details of ME Association Guidance (1 to 5) below:

1. MEA leaflet - Coronavirus (COVID-19/Cv19) and ME/CFS
This week’s update, explains the Easing of Lockdown.
The various items of relaxation announced by the Prime Minister mean that changes in relation to exercise, education and employment are moving faster in England than elsewhere in the UK.
But none of these changes are going to have any significant affect on most people with ME/CFS - unless someone is planning to return to work or school.
As far as education in England is concerned, the key point here in relation to ME/CFS is that any return to school is not compulsory - the government has simply issued guidance on returning to school for certain groups of children.
My understanding is that nobody is going to be in trouble, or even fined, if they choose to continue to keep their children at home.
For people with ME/CFS who may now be asked to return to work, or choose to return to work, this has to be on the basis of people being able to travel to work safely. And all aspects of the workplace must be safe in relation to hygiene and social distancing measures.
Employers have a clear duty under Health and Safety legislation to provide a safe working environment.
The Health and Safety Executive has opened a hotline for people to call if they are not happy about what an employer is proposing or doing: 0300 790 6787, Monday to Friday 8.30am to 10.00pm.
If you have concerns about working arrangements you should discuss them with your trade union or professional body representative…
 
2. MEA leaflet - Reducing the risk of catching Coronavirus if you have ME/CFS by Dr Charles Shepherd 
The basis for this guidance -. People who are infected pass on the virus in tiny droplets that are spread from the mouth during coughing, spluttering and even breathing.
Viral droplets can also be passed on by people who are displaying no obvious symptoms. So, a friend, or neighbour, or caller at the door, who looks and feels well could still be infected and spreading the infection.
These virus laden particles then land on surfaces where they remain (for up to 72 hours on some hard surfaces) and can be picked up if someone touches the infected surface. An infected hand or finger then touches the eyes, mouth or nose and the virus enters the body.
 
This leaflet contains a10-point guide to the most important measures that will help to prevent you catching this infection.
1. Stay at Home
2. Social Distancing
3. Don’t touch surfaces outside the house
4. Don’t touch your face
5. Wash your hands regularly with soap and water
6. Post, parcels and shopping
7. Stay safe away from home
8. Take a vitamin D supplement
9. Face masks
10. Meeting a friend or relative
 
3. MEA leaflet - Post-viral fatigue (PVF) and Post-viral fatigue syndrome (PVFS) following Coronavirus Infection.  
Our group’s recent blog Coronavirus (Covid-19): Post Covid-19 Rehabilitation  tells you about this MEA 8 page leaflet, and also gives information on a Daily Telegraph article, and Physios for ME.
 
4. MEA Letter: Asserting your vulnerable status
Go to our group’s update blog of 20 April for further information.    This update followed the Government announcement on 16 April -
".. .. the government has determined that current measures must remain in place for at least the next 3 weeks".
 
5. MEA leaflet - Your Benefits during the Coronavirus Crisis. 
The MEA Benefits leaflet has two sections - the first covering benefits for people tested positive for Covid-19 or have the symptoms or for those who share a household with someone in this situation;  followed by a section for people on Universal Credit or ESA who have been treated as having limited capability for work but not limited capability for work-related activity (ie “work preparation group” or “limited capability for work” respectively).
The information provided in this leaflet was correct at the time of writing - April 15 - but please be aware that the regulations and guidance are changing daily.
 
• 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 explain that it remains essential that people with M.E. follow existing advice about social distancing “to reduce social interaction between people in order to reduce the transmission of Coronavirus.” 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. If you live in a residential care setting, other guidance is available. AfME advise - those who are at increased risk of severe illness from Coronavirus to be particularly stringent in following social distancing measures, pointing out that this means those who are: aged 70 or older, regardless of medical conditions, and those who are aged under 70 with a listed underlying health condition [...including] chronic neurological conditions, such as Parkinson’s disease, motor neurone disease, multiple sclerosis (MS), a learning disability or cerebral palsy diabetes.
Given that M.E. is listed as a neurological condition by NHS England, SNOMED (the system used by GPs in England for electronic health records) and the World Health Organisation, we include people with M.E. in this category of increased risk of severe illness from Coronavirus.
 
• ME Research UK are asking you to Chop for M.E. and raise funds for research.
With the UK government encouraging those who cannot work from home and whose workplace has appropriate measures in place to counter the COVID-19 threat to return to their workplaces, a novel issue has arisen - the urgent need for a haircut.
Likewise, for those of us at home - time may seem to have stood still but follicularly-speaking - it has not. It may be that a trim or even something more drastic is needed.
ME Research UK issues a challenge - Chop for ME - to raise funds for our charity. We hope that it can be shared widely and we hope that photos posted with #ChopforME will inspire others.  Get a home haircut, donate £10 by mobile phone, and challenge a friend.  Please remember to observe all social distancing and health guidelines pertaining to your location.

Become involved in Chop for M.E. 
Just Chop your Hair, and donate £10 to ME Research UK.  Text CHOPME to 70085 to donate £10;  Texts cost £10 plus one standard rate message;  Post a photo using the hashtag #ChopforME; and challenge your friends.
(This section amended on 27 May 2020)
 
• #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

 
Take care, and stay safe everyone.

• An extract from Dr Charles Shepherd’s advice, taken from the ME Association (MEA) leaflet dated 23 April. 
 
“… … for people with ME/CFS, social distancing and isolation is going to have to remain for many months to come - until a vaccine is developed (probable), a successful antiviral treatment has been found (possible) or what is called herd immunity has occurred (i.e. a large number of people are now immune to the infection) and the virus can no longer spread effectively.”
 
Dr Charles Shepherd, Medical Advisor to the MEA gives updates which are now available as downloadable free leaflets.  The latest update includes information on -

• Controlling the spread of Covid-19
• 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 for the virus
• What should people with ME/CFS do if they catch Covid-19?
• The Face Mask debate
• Vitamin D Deficiency
• 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
• ME Association working arrangements

 
• 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 Essential advice section
The UK Government has issued guidance on protecting those are are defined, on medical grounds, as extremely vulnerable. This group does not include people with M.E. (unless they have additional conditions that are listed in this category).
The UK Government is asking people to register “if you have a medical condition that makes you extremely vulnerable to coronavirus. For example, you’ll be able to ask for help getting deliveries of essential supplies like food.” Please be aware that the criteria is very specific. Our understanding is that you are only eligible for this support if you received a letter from the NHS asking you to stay home for 12 weeks.
It remains essential that people with M.E. follow existing advice about social distancing “to reduce social interaction between people in order to reduce the transmission of Coronavirus.” 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. If you live in a residential care setting, other guidance is available. They are advising those who are at increased risk of severe illness from Coronavirus to be particularly stringent in following social distancing measures. This means those who are:

• aged 70 or older, regardless of medical conditions
• aged under 70 with a listed underlying health condition [...including] chronic neurological conditions, such as Parkinson’s disease, motor neurone disease, multiple sclerosis (MS), a learning disability or cerebral palsy diabetes.

Given that M.E. is listed as a neurological condition by NHS England, SNOMED (the system used by GPs in England for electronic health records) and the World Health Organisation, we include people with M.E. in this category of increased risk of severe illness from Coronavirus.
 
• Physios for ME Covid-19 statement. 
 
During this national crisis many physiotherapists have been redeployed to front-line services, but as time goes on our attention will shift to the rehabilitation of survivors.
COVID-19 is a new virus so rehabilitation can only be based on generalised experiences. Universal presentation after a period of critical illness includes significant muscle loss and impaired cognitive function, with the standard approach to addressing such deconditioning involving mobilisation and exercise. Once medically fit many patients will be discharged home as quickly as possible, with community teams picking up the remainder of the rehabilitation process.
It is vital for physiotherapists (and any other treating health professional) to understand a potential complication of a viral infection - Post Viral Fatigue Syndrome (PVFS).
 
Swift identification of PVFS is important because the management techniques differ to the typical reconditioning approach that a physiotherapist may adopt.  PVFS has strong links with development of ME, which is why we have taken particular interest in getting these messages out there to our colleagues.
Inappropriate management advice is already out there, and together with our allies we have already challenged one such publication. More about that, and why inappropriate management can be so detrimental, can be read here.
 
• #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.  https://www.meaction.net/covid-19/
 
• 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.

This update follows the Government announcement on 16 April -
".. .. the government has determined that current measures must remain in place for at least the next 3 weeks".

• ME Association Weekly Update: Coronavirus and ME/CFS - New Leaflet and Letter
This latest MEA update by Dr Charles Shepherd, Hon. Medical Adviser, of the MEA, includes a ME Association 10 page leaflet, and letter, both available for you to download. 

This detailed article contains all the key information and guidance that has emerged since the last full MEA website summary on Covid-19 that was published on Tuesday 31st March. 

The MEA explain:  We have made this update (and all future updates) into a downloadable free leaflet. It can be found in the website shop along with a ‘to whom it may concern’ letter which might be helpful when arguing your case for additional support and help as a vulnerable person.  We will also be adding another free leaflet about changes to benefits as soon as possible.  Download the latest coronavirus and ME/CFS update as a leaflet

The MEA continue:  Judging from feedback to the MEA Facebook page, action is still needed to deal with employers who are not taking measures that help to ensure employees are not working closer than six feet (two metres) apart and are receiving appropriate protective equipment.  If you are having problems persuading a medical professional, employer, or supermarket that ME/CFS is a vulnerable illness and deserving of additional consideration you can make use of the new ‘to whom it may concern letter’ on vulnerability.  Download the new letter to help make your case for vulnerability

• #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 are also regularly updating their services, support and useful contacts page with resources that may be helpful.

AfME also draw our attention to scams:  Please be aware that scams are among the most prevalent types of crime in the UK, and Coronavirus is creating a perfect environment for fraudsters to thrive. Which? has published a useful article to help you spot scams. Please stay informed and keep yourself safe.

AfME also point out the UK Government’s introduction of three new measures to reduce day-to-day contact between people, and reduce the spread of the infection.  This is available on the Government’s "Guidance Staying at home and away from others (social distancing)" - updated 29 March 2020.

• 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 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)

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.