• 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.

•  25% M.E. Group  •  Action for ME  •  Coronavirus (COVID 19)  •  M.E. Association  •  #MEAction  •  MERUK  •  Post COVID Syndrome (Long COVID)  

• 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.

•  Coronavirus (COVID 19)  •  M.E. Association  •  Post COVID Syndrome (Long COVID)