• 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.

• Worcestershire Awareness Week meeting cancelled due to Coronavirus (Covid-19). 
Our Group Lunches and Afternoon Café Meetings are being cancelled for the time being, due to Coronavirus (covid-19). 
This means that unfortunately our Awareness Week Afternoon Café Meeting planned for Thursday 14 May will not be happening.  Also, cancelled is our Group Lunch the following week on Tuesday 19th. 
 
Please watch our meetings page for confirmation when the lunches and afternoon café meetings will resume.
 
• Virtual #MillionsMissing on Tuesday, 12 May
Become involved - Check the #MillionsMissing website, facebook and twitter  for full information.
Join #MillionsMissing for a full day of programming beginning in the UK!  This event will stream on Facebook Live.  Check the schedule for the virtual calls, performances, and activities you can participate in.
 
On the first day of Awareness Month, the ME Association (MEA) gave us
 
• 'ME Awareness: What you need to know about M.E.' 
This article by Dr Charles Shepherd, Hon Medical Adviser of the MEA, included a 4 page leaflet -M.E. Factsheet available to download.  The leaflet provides information to help in the understanding of M.E, its symptoms, treatments and the current research situation.
 
Plus also, the MEA Press Release - Brits with devastating illness speak out about years lost in lockdown.
HUNDREDS of thousands of disabled Brits are no strangers to the isolation being forced on the population by coronavirus - and this month they are sharing their stories of years lost behind closed curtains.
Sufferers of the cruel, unrelenting disease M.E. are bravely speaking out as society also learns what it can feel like to be excluded.
Some 265,000 people in the UK have (myalgic encephalomyelitis - also sometimes called chronic fatigue syndrome), including children and teenagers.
 
More people share their experiences.  See the MEA website for more stories each day during Awareness Month - For ME Awareness Month in May, campaigning charity The ME Association is sharing the stories of real people whose lives have been effectively quarantined.
 
• Action for ME are asking for your stories
M.E. Awareness Month is almost upon us, with M.E. Awareness Day on Tuesday 12 May - and it's going to be an M.E. Awareness Month quite unlike any other.  While the world has changed in countless ways, daily life for many people with M.E. remains the same, being reluctant experts in self-isolation.   Whatever your experience, your story matters - and we want to help you bring it to the wider world this M.E. Awareness Month.
 
During ME Awareness Week, ME Research UK (MERUK)  normally encourages supporters to hold a fundraising and awareness raising Tea for ME event. Due shielding and social distancing requirement this will not be possible in May 2020.
Instead, (MERUK) wish to encourage supporters to have a ‘Tea with me’. It is not a fundraiser, merely an encouragement on 12th May (International ME Awareness Day) to reach out to those whom we know are affected by ME, their family and their carers and to have a virtual cuppa together - a brew for ME rather than turning blue for ME .
 
ME advocate and parliamentary champion, the Countess of Mar, retires from The House of Lords
 
Also, near the beginning of Awareness Month, the ME Association (MEA), Action for ME (AfME), ME Research UK (MERUK), announced that the Countess of Mar, retired from the House of Lords on 1st May.  The MEA, AfME and MERUK articles all give references to an article in the Telegraph.
 
• MERUK  - From 1st May 2020, when the Countess of Mar retires officially from the House of Lords after almost 45 years’ service, the ME community will be losing a champion of the first rank and a redoubtable campaigner for acceptance of the illness, for research and for the proper treatment from government and the NHS of those affected by ME.
MEA - The Countess of Mar has taken on many roles in both a personal and parliamentary capacity to help people with M.E.
Her chairmanship of the Forward-ME Group, her constant willingness to be involved with promoting biomedical research, improving medical education, asking parliamentary questions and securing the PACE trial debate, and helping with difficult individual cases.  Above all just being there to give sage advice when needed.  As Margaret said in her letter, she is still going to continue to be involved with the Forward ME Group.  So, we are not losing her completely and she will also continue as a Patron of the ME Association.
AfME  - Margaret, the 31st Countess of Mar, joined the House of Lords in 1975. She has been a staunch advocate for people with M.E., raising awareness and highlighting the lack of funding for biomedical research. In Parliamentary debates and through the use of written questions, Lady Mar has worked ceaselessly to push M.E. up the agenda, highlighting injustices faced by those living with the condition. She has undertaken much of this through her founding and chairing Forward-ME, the collaborative of UK charities and voluntary organisations of which Action for M.E. is a committed and active member.
 
• ME Awareness Day - The Birthday of Florence Nightingale
M.E. Awareness Week was established by patient advocates and is focused on May 12th, the birthday of Florence Nightingale, who was believed to have suffered with M.E.
 
Take care, and stay safe everyone.

• Covid-19 and Post-Viral Fatigue Syndrome.
ME Association article, and 8-page leaflet on Post-Viral Fatigue (PVF) and Post-Viral Fatigue Syndrome (PVFS ) following Coronavirus Covid-19.

The MEA are starting to receive reports about previously healthy people who have had (or probably had) coronavirus infection and have not been able to return to their normal level of health and energy levels in the weeks following the onset of symptoms.
These reports are largely from people who have managed at home and not had a more serious infection that required hospital admission.
Some reports are from health professionals. It seems likely that some of them are experiencing what is called post viral fatigue (PVF), or a post viral fatigue syndrome (PVFS).

The MEA are also receiving reports from people with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) who have had this infection and now have a significant exacerbation of their ME/CFS symptoms - especially a further reduction in energy levels. 

The article, and leaflet, explain that some degree of post-viral fatigue (PVF) or debility is a fairly common occurrence after any type of viral infection.  Fortunately, in most cases, this is short lived and there is a steady return to normal health over a period of a few weeks.  However, in some cases, a full return to normal health takes months rather than weeks.

MEA website article included -
Physios 4 ME.   You might also be interested in reading the latest statement from a group of physiotherapists who are working to make others in their profession more aware of the challenges faced by people with M.E.  This statement appeared on their website yesterday and the content was produced in association with The ME Association.
Extract:  - ”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)…”
Please visit the Physios 4 ME website for more information.

• The Telegraph explain how - Coronavirus could cause secondary illnesses including chronic fatigue syndrome

The article tells us that experts warn - New medical papers suggest the contagion can get deep into our vascular system and even our brains.   - Covid-19 may trigger post-viral fatigue syndrome in some patients, experts have warned, amid growing evidence that an infection could have significant long term health repercussions. 

• Physios for ME Post Covid-19 Rehabilitation
The following was included in the Worcestershire ME Social Group’s Coronavirus (Covid-19): Guidance for people affected with ME/CFS - UPDATE (28 April).

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.

The Physios for ME website also gives Key Management Techniques for patients with PVFS, and states -
This management advice has been prepared in conjunction with medical experts at the ME Association and the exercise physiologists at the Workwell Foundation.

As Covid-19 is a new virus, more may well be learned about the recovery process and secondary complications, and we will endeavour to update this information as and when appropriate.

For further information concerning ME/CFS and Covid-19, see the Worcestershire ME Social Group’s Covid-19 blogs -

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.

• NICE (National Institute of Clinical Excellence) publishes first rapid COVID-19 Guidelines.  

NICE announce - These guidelines have been developed to maximise patient safety whilst making the best use of NHS resources and protecting staff from infection. The guideline has been developed using the interim process and methods for developing rapid guidelines on COVID-19 and recommendations are based on evidence and expert opinion.   Because we are using a different approach in order to develop these guidelines quickly to support frontline NHS staff, we will be reviewing them each week as new evidence, policy and practice emerges.

The first NICE rapid guidelines were published on 20th March, with further guidelines published since then. 

The new NICE clinical guideline on ME/CFS ME/CFS: diagnosis and management - NICE Guidance in Development. 

The ME Association’s Covid-19 key information and guidance of 30 March, included a NICE Guidance announcement by Dr Charles Shepherd, Hon. Medical Adviser, of the ME Association.
In my capacity as a member of the committee that is preparing the new NICE clinical guideline on ME/CFS I took part in two days of video conferencing meetings on 17 and 18 March. 
However, NICE has decided to halt all further work on this guideline due to many of the clinical staff on the committee (myself included) being heavily involved with our duties in relation to coronavirus.
My personal view is that it now seems very unlikely that we will be able to meet the current target of publishing the new NICE guideline in December 2020.
NICE has also been contacted about guidance on how people with serious pre-existing health problems should be managed if they must be admitted to hospital with coronavirus infection.

• #MEAction announce - 'NICE Guidance Delayed Until Further Notice, due to Covid-19'
The National Institute of Health and Care Excellence (NICE) have suspended work on all guidelines currently in development due to the Covid-19 pandemic, including their update of the ME/CFS guideline, originally due to be published October 2020 and recently delayed by NICE to December 2020.
#MEAction’s report includes the full email from NICE, as received by all ME/CFS Guideline stakeholders.

Dear Stakeholder,
We wanted to update you on how NICE is working to support the NHS and wider health and care sector at this challenging time, and to provide more details on how the COVID-19 pandemic is affecting our normal ways of working.
During this period of emergency, NICE has adapted its priorities to support the NHS, local authorities and the wider health and social care sector to tackle COVID-19. We will only publish guidance that is therapeutically critical or focused on COVID-19-related issues.
The stakeholders and advisory committees involved in the development of our guidelines include a large number of frontline staff. We know that their priority in this crisis is caring for patients. We do not want to draw them away from this vital work.
For this reason, we have cancelled all guideline committee meetings and we will not be publishing any draft or final guidelines until further notice (except for COVID-19 rapid guidelines – see below).
At present we are not able to confirm the revised timelines for each guideline. We will be in touch to provide further information as soon as possible. For more information in the meantime, please visit our dedicated webpage.
COVID-19 rapid guidelines
We are working closely with NHS England and NHS Improvement to develop rapid guidelines on topics relevant to the management of COVID-19. These will be published weekly and will focus on a range of clinical settings.
In addition, we are producing rapid evidence reviews on medicines used to manage COVID-19 and its symptoms.
All of our COVID-19 guidelines and evidence reviews will be published on the NICE website. Enquiries about this work should be sent to nice@nice.org.uk
Kind regards, Katie Stafford, Senior Guideline Coordinator, Centre for Guidelines

#MEAction supports NICE’s aim to keep healthcare professionals on the frontline throughout this crisis and understand that professionals involved in guideline development are commonly also working in the NHS.  Also, they note that this will be a very challenging time for everyone across the UK and the world and a fully comprehensive stakeholder consultation on the guidelines (due to take place from 30th June) would be next to impossible.
#MEAction are still very concerned that the existing guidance remains in place, including the harmful recommendation of Graded Exercise Therapy (GET).

• Coronavirus and Fatigue

The ME Association tell us of a Letter of Concern initiated by Physios for ME, a group of physiotherapists with a special interest in the neurological disease, and signed by members of Forward ME. 

The MEA explained that the letter The letter from Forward ME and Physios for ME criticising the OHFT guidance., sent to the Oxford Psychosocial Group called for the withdrawal of an inaccurate and potentially harmful document about which they had received many complaints.   

As well as highlighting the issues with the leaflet, the letter sets out clear evidence for pacing, the symptom management people with M.E. tell us they find most helpful.

• Action for M.E. Chief Executive, Sonya Chowdhury, has signed an open letter calling for the withdrawal of an inaccurate and potentially harmful NHS Trust resource. 

Oxford Health NHS Foundation Trust has produced a leaflet, which says it is “one of a series about Coronavirus and mental health. The leaflets contain information about how the Coronavirus outbreak might affect your mental health, how to look after yourself, what to do if a problem persists, and where to find further information.”
However, we are extremely concerned that this leaflet:

• conflates post viral fatigue with M.E.
• purports to provide information for post-COVID-19 rehabilitation but is predominantly comprised of rehabilitation advice for M.E.
• provides is incorrect or misleading information, which is potentially detrimental to patients and may result in deterioration and exacerbation of disability, by recommending graded exercise.

• Action for M.E.’s 2019 Big Survey revealed that only one in ten people who did GET with an M.E./CFS Specialist said it helped them manage symptoms. Almost half said it had a worsening effect with others saying it had no different.
The letter has been drafted by Physios 4 ME, a group of physiotherapists with a special interest in M.E./CFS who have recently joined Forward-ME.  As well as highlighting the issues with this particular leaflet, the letter sets out clear evidence for pacing, the symptom management people with M.E. tell us they find most helpful.
We are also working with the other signatories to produce information which will be provided to the Foundation Trust to ensure they are aware of the latest evidence and patient feedback.

The Worcestershire Health & Care NHS Trust  were using this Oxford Psychosocial Group Coronavirus and Fatigue leaflet under the Mental Health Support topic on their website, but it has now been deleted from this location.

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.

• 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)

• 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)