Explanations from M.E. Charities, plus recent news articles.

M.E. Association: article - Update: Post-Covid Fatigue, Post/Long-Covid Syndromes, and ME/CFS.
On 27 July Dr Charles Shepherd explained why the MEA has been devoting so much time and effort to covering issues relating to Post-COVID Syndromes.  The MEA article explained the particular reasons -

• the possibility that people with post-COVID fatigue and post/long-COVID syndromes are going to receive preferential treatment from the NHS for very similar health problems that occur in people with ME/CFS.
• people with post-COVID fatigue and post/long-COVID syndromes are being cautioned against the use of graded exercise treatment (GET) whereas NICE has refused to remove this treatment option from the current clinical guideline for ME/CFS.
• the considerable amount of research and research funding that is being directed at post-COVID fatigue and post/long-COVID syndromes compared to what has happened to government-funded research into ME/CFS.

There is a lot of overlap between post/long-COVID symptoms and the sort of Post-Viral Fatigue Syndrome (PVFS) that often precede a diagnosis of ME/CFS.  A number of post/long-COVID people are now developing post-COVID ME/CFS.   The MEA article gives MEA explanations on the ‘Key Principles of Management’, and ‘Post/Long Covid Groups’ - Post-COVID intensive care/hospital care syndrome;  Post/Long-COVID Self-Managed Syndrome;  plus Post/Long-COVID Fatigue Syndrome & Post-COVID ME/CFS.
 
Action for M.E. (AfME) CEO Sonya Chowdhury on the potential rise of M.E./CFS.
On 2nd July, AfME CEO Sonya Chowdhury spoke on BBC Points West about the potential rise in M.E./CFS following Coronavirus, and the number of people who are experiencing problematic or delayed recovery from COVID-19. She says:
"The ongoing exhaustion, and inability to return to previous activity, is something that has shocked many, including those who may have been asymptomatic or had relatively mild COVID, as they are now experiencing difficult and challenging symptoms."
We’ve seen a 30% increase in enquiries for information and often urgent support relating to the pandemic, from people with M.E. unable to access services and essential supplies. We have now begun formally recording numbers of those seeking support with post-Coronavirus symptoms that have not gone away.
 
MEAction give full details on Post-COVID-19 illness 
There have been some reports of long term illness in survivors of COVID-19; it is unclear how many people are affected at this stage.[1]  [2]  [3]
One small study from Wuhan, China, found that survivors of COVID-19 who tested negative twice before discharge from hospital still had some abnormalities in metabolism and liver function markers when discharged.[4]
Postviral fatigue syndrome and ME/CFS:
Myalgic encephalomyelitis, better known as ME, is a neurological disease that commonly begins after a virus, although other possible triggers include bacterial infections, injuries, surgery and other events.[15]  [14]  [25]
Some researchers and some patients use the term chronic fatigue syndrome (CFS), or ME/CFS to refer to ME, although CFS has different diagnostic criteria.[16]  [15]  [14] The older term Postviral fatigue syndrome (PVFS) is rarely used, although the World Health Organization recognize PVFS, ME, and CFS using the same diagnostic code. Some countries including the United States, deviate from this.[25]  [26]
 
BBC Spotlight: Covid-19 and Post-Viral Fatigue Syndrome with Dr Charles Shepherd.
BBC Spotlight (South-West) featured a report about people who had contracted Covid-19, survived the infection but had failed to fully recover their previous level of health.  Jenny Walrond, BBC Health and Science Correspondent, speaks with one woman whose functional improvement hasn’t materialised and says that thousands have joined social media sites to report a similar failure to recover.  The article gives a link to the two minute broadcast - "BBC Spotlight Report on the Long-Term Effects of Covid-19 Infection" (25 June 2020)
 
ITV News: "What is Long Covid?" - ITV News Interview featuring Dr Sarah Jarvis and Gez Medinger"
Six minute interview broadcast live on ITV at 1.40pm on 21st July.  News anchor Nina Hossain introduces the Long Covid SOS film  (https://www.youtube.com/watch?v=eYfDON0XsA8&feature=youtu.be), and speaks to Dr Sarah Jarvis and long hauler Gez Medinger about the condition.  Response from Dr Charles Shepherd amongst the comments.
 
M.E. Association: Coronavirus warning as victims staying sick for MONTHS with 'post-Covid syndrome'  On 7 July, The MEA’s article includes quotes from The Express article CORONAVIRUS sufferers may be experiencing a “post-COVID syndrome” according to expert Dr Charles Shepherd who warned that even “fit young adults” were being subjected to debilitating fatigue for months.  Thousands of Britons have reported a failure to recover from coronavirus infections despite surviving the virus.
The article included a link to a BBC Radio 5 Live discussion, when Dr Charles Shepherd was present, in which callers who revealed they had been ill for up to four months.
 
America’s top covid doctor turns ME/CFS into a subject for general discussion as the pandemic deepens
On 10 July, Tony Britton, Fundraising and PR Manager, of the MEA explain -
In a week in which we heard that cases of Covid-19 had doubled globally in the last six weeks to 12 million, President Trump’s top medical adviser on the coronavirus crisis has been showing a respect to ME/CFS that’s never been made so public before.
Dr Anthony Fauci, who has been striding the world pandemic stage usually in the shadow of the President, told a news conference organised by the International AIDS Society yesterday that the symptoms seen in long-haul Covid-19 recoverers resembled those seen in patients with M.E.
 
For some sufferers, Covid-19 doesn’t come with an end-by date – it just goes on and on   On 10 July, The MEA’s article includes quotes from The New Statesman article 
For #LongCovid sufferers - around 5 per cent of those who catch the disease - debilitating symptoms drag on interminably, with a quote from Dr Phil Whitaker’s - “Tantalisingly, what I hope will be an eventual research effort into #LongCovid patients may shed some light on other ill-understood conditions associated with a viral trigger, most notably chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).”
 
PhysiosforME: Covid-19: Post Viral Fatigue Syndrome and Myalgic Encephalomyelitis
This 30 minute YouTube recording from PhysiosforME gives an overview of Post Viral Fatigue Syndrome, its link to ME and management priorities.   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).  Further information on their website.

•  Action for ME •  B.B.C.
•  Coronavirus (COVID 19) •  #MEAction
•  M.E. Association •  National Newspapers

NICE Statement about graded exercise therapy in the context of COVID-19. 

NICE is aware of concerns about graded exercise therapy (GET) for people who are recovering from COVID-19. NICE’s guideline on ME/CFS (CG53) was published in 2007, many years before the current pandemic and it should not be assumed that the recommendations apply to people with fatigue following COVID19. The recommendations on graded exercise therapy in CG53 only apply to people with a diagnosis of ME/CFS as part of specialist care, and CG53 is clear that this should be part of an individualised, person-centred programme of care, with GET only recommended for people with mild to moderate symptoms.
As the guideline is currently being updated, it is possible that these recommendations may change. The evidence for and against graded exercise therapy is one of the important issues the guideline committee is considering. NICE plans to consult on the updated guidance in November 2020.
NHS England has recently published guidance on After-care needs of inpatients recovering from COVID-19 that includes advice on fatigue.
July 2020
 
The ME Association  gives the background to the NICE Statement in their article concerning the 'Clinician's Letter to NICE Results in Statement on Graded Exercise for Post-Covid-Syndrome'.
The MEA explained that the NICE statement was in response to a detailed letter to NICE that was prepared by Dr Charles Shepherd and Dr William Weir several weeks ago and which was signed by other members of the NICE ME/CFS clinical guideline committee.
The letter pointed out that recommendations in the current (2007) NICE guideline regarding the use of GET in ME/CFS could cause serious harm if applied to people who are failing to recover from COVID-19 and who are experiencing Post-Covid Syndrome and other complications.
The letter also pointed out that there is a need for guidance from NICE about the use of Pacing as a sensible and safe alternative to Graded Exercise Therapy in respect of Post-Covid Syndrome.
 
The MEA article  also tells us that knowledgeable physiotherapists and occupational therapists, and the MEA, have all produced helpful guidance in this regard, but the message about the dangers of Graded Exercise Therapy, and the increased need for individualised, patient-centred, care is not being taken up by official sources of information.
The article also gives Dr Shepherd’s detailed response to the NICE Statement, plus links to -

• The NICE Statement about GET and Covid-19

• ME Association Statement on GET and the current NICE guideline.
• MEA Leaflet on the management of Post Viral Fatigue Syndrome and Post-Covid Syndrome.

 
In June, the MEA announced The New NICE Clinical Guideline on ME/CFS to be Published in April 2021. 

Dr Charles Shepherd, Hon. Medical Adviser to the ME Association, and other M.E. experts, clinicians, and patient representatives, had continued to work on the new clinical guideline via remote meetings until NICE made the decision to suspend them as resources were directed towards the Covid-19 pandemic.
The meetings were recently reinstated and work now continues. Stakeholders can expect to receive the new draft guideline for comment and review from 10 November this year.
 
The recent Letter to Stakeholders was given on the MEA website -
Dear Stakeholder, 
As you will be aware, because of the need to prioritise work on COVID-19 guidance and to avoid drawing frontline staff away from their clinical work, NICE cancelled all guideline committee meetings. This included meetings for the ME/CFS guideline.
We have now rescheduled the remaining committee meetings for this guideline and agreed a revised timeline. This means that the consultation on the draft guideline will now start on 10 November, and the guideline will now publish on 21 April 2021.
Katie Stafford, Senior Guideline Coordinator, 24 June 2020
 
For further background information, see our previous  NICE Guidelines: Coronavirus Covid-19, and ME/CFS  blog dated 26 April.

Become Involved, Including a Free Webinair Q&A on Monday 6 July. 
DecodeME has secured funding for a very large study to analyse DNA from the saliva of people with ME/CFS to see whether the disease is partly genetic and if so, help pinpoint what causes it.
On Monday 6 July at 4pm the DecodeME Management Team is hosting a free webinar Q&A, open to all.  The study should help us understand the disease and ultimately find treatments.  DecodeME is the ME/CFS Biomedical Partnership, a collaboration between researchers and people with ME/CFS, carers and the public.
Join DecodeME to help create the world’s biggest study of the causes of ME/CFS.  To find out more about the study you can read the latest updates, FAQs and explanation of the science.
 
Action for ME (AfME) -
DecodeME gets £3.2 funding for ME/CFS DNA study.
Patients, scientists and advocates are celebrating £3.2m funding for DecodeME, the largest ever ME/CFS DNA study, announced today.
As part of the ME/CFS Biomedical Partnership, Action for M.E. is thrilled that, thanks to funding awarded jointly by the Medical Research Council and National Institute for Health Research, work can begin on DecodeME, a ME/CFS DNA study that hopes to reveal the tiny differences in a person’s DNA that may affect their risk of developing ME/CFS, and the underlying causes of the condition.  DecodeME will look at samples from 20,000 people with ME/CFS, in the hope that the knowledge discovered will aid development of diagnostic tests and targeted treatments.
 
The Medical Research Council -
The largest genetic study into Myalgic Encephalomyelitis in the UK, led by a partnership of patients and scientists, is launched.
A new study has been funded to analyse samples from 20,000 people with myalgic encephalomyelitis (ME), also diagnosed as chronic fatigue syndrome (CFS, or ME/CFS), to search for genetic differences that may indicate underlying causes or increase the risk of developing the condition.  The study, ‘DecodeME’, is jointly funded by the MRC and National Institute for Health Research (NIHR) with £3.2 million (£1.8 million MRC, £1.4 million NIHR) and hopes to aid development of diagnostic tests and targeted treatments.
 
National Institute for Health Research -
Largest genetic study into myalgic encephalomyelitis is launched.
A new study has been funded to analyse samples from 20,000 people with myalgic encephalomyelitis (ME) to search for genetic differences that may indicate underlying causes or increase the risk of developing the condition.  The study, jointly funded by the National Institute for Health Research and the Medical Research Council with £3.2m (£1.4m NIHR, 1.8m MRC), hopes to aid development of diagnostic tests and targeted treatments.
 
ME Association (MEA) -
Free Leaflet: DecodeME – The Largest Ever Genetics Study! 
Patients, Scientists, and Advocates Celebrate £3.2m Funding for DecodeME, the Largest Ever Genetics Study!
This is a free 2-page leaflet about an exciting new study that we hope will be shared with anyone who has ME/CFS and might be interested in taking part.  Please register your interest now by visiting the DecodeME website. The study will begin in September with recruitment from March 2021.  Full details about the study’s launch, with comment from all involved, are available in the press release from 23rd June 2020.  Please note: Members of the ME Association will receive this free leaflet with the July issue of ME
 
Further AfME article -
"We can make DecodeME a success by working together." 
 
Further MEA articles -
MRC: Largest Genetic Study into ME is Launched! 
The DecodeME Genetics Study: Letters to The Times.
Patients, Scientists, and Advocates Celebrate £3.2m Funding for DecodeME, the Largest Ever ME/CFS DNA study!  Includes, UK Announcements

• The Medical Research Council: The largest genetic study into myalgic encephalomyelitis in the UK, led by a partnership of patients and scientists, is launched
• The Times: Chronic fatigue syndrome: Search for genetic clues by Sean O’Neil
• The Times: Chronic fatigue syndrome: ‘It felt like I’d been in a car crash’ – Case Studies by Sean O’Neil
• The Times: Chronic fatigue syndrome: Debilitating condition that leaves opinion divided by Tom Whipple
• The Guardian: UK to launch world’s largest genetic study into chronic fatigue syndrome by Haroon Siddique

Further information -
From the Independent   - Chronic fatigue syndrome sufferers hope for breakthrough as they fight for recognition.  DecodeME, the world’s biggest genetic research project into CFS, will examine the DNA of 20,000 people frustrated by misunderstandings of their condition.
 
From Australia’s Mirage News  - DecodeME, largest ever DNA study into myalgic encephalomyelitis, awarded £3.2m funding. Despite its high cost to patients, the economy, the NHS and society, very little is known about the causes of ME, also diagnosed as chronic fatigue syndrome (CFS, or ME/CFS), including how to treat it effectively.
 
From Health Rising,  - DecodeME – U.K. Funds Largest ME/CFS Study Ever In Attempt to Get at Genetic Roots of the Illness.  Cort Johnson points out  - “Simon McGrath, in his blog “UK spends £3 million on the world’s biggest ME/CFS study“, pointed out that of the two funders of the study, the Medical Research Council (MRC) has only funded a few fairly small biomedical studies in ME/CFS before, and the National Institute of Health Research has never funded any.”
 
For further background, see our January blog -  Biomedical Genetics Research: The ME/CFS Biomedical Partnership.

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.

Coronavirus (Covid-19): Guidance for people affected with ME/CFS - UPDATE (9 June).  
 
New ME Association Guidance: Key points on Employment, ME/CFS and the Coronavirus.  
 
Extracts from the MEA’s new six page downloadable leaflet written by Dr Charles Shepherd.
At present we don’t know whether people with ME/CFS are more likely to catch coronavirus or to develop serious respiratory complications if they do.  What we do know is that they are at increased risk of an exacerbation of ME/CFS symptoms, or a relapse of their ME/CFS, if they catch a serious viral infection like the coronavirus.  People with ME/CFS should therefore be considered ‘vulnerable’ whose health is likely to be exacerbated by Covid-19 infection and they should be stringently practising the social distancing measures outlined by the Government.
 
ME/CFS is not one of the conditions that is listed in the new ‘extremely vulnerable’ category that covers people who are likely to develop very serious respiratory complications if they catch the covid-19 infection  -  But if you have ME/CFS and other conditions as well - which include cancer, organ transplantation, immune deficiency diseases and the use of immunosuppressive drugs such as oral steroids - then you need to continue to self-isolate for 12 weeks and clearly cannot physically go to work.
 
Key Points on Employment, ME/CFS and the Coronavirus covered in the leaflet
Statutory Sick Pay (SSP)
Furloughed Workers
If you are Self-Employed
Employers must ensure the workplace is safe
Returning to Work Risk Assessments
Individual risk factors
Risk factors at work
Reducing the risk at work
 
All of the MEA’s Covid-19 leaflets and letters are available to download from our 21 May update.
 
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 Lockdown and social distancing
From Monday 1 June, lockdown is easing for people in England. You can spend time outdoors, including private gardens and other outdoor spaces, in groups of up to six people from different households, following social distancing guidelines. Those considered at increased risk of severe illness from Coronavirus (including those with underlying conditions, such as M.E. - see "Essential advice" above) continue to be advised to "stay at home as much as possible and, if you do go out, take particular care to minimise contact with others outside your household." See section 9. Clinically vulnerable people of the guidance for Staying alert and safe (social distancing).
 
AfME’s Essential Advice
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.
 
#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.

10.00 am, Tuesday 16 June - All-Party Parliamentary Group (APPG) on ME Meeting.
 
The ME Association (MEA) announce that the APPG on ME will be Focusing on Young People when they meet virtually next week. 
 
This meeting will cover issues relating to children and adolescents with ME/CFS - including diagnosis, medical management, education, inappropriate social services interventions.  There will be three presentations from:

• Dr Nigel Speight - Consultant Paediatrician and Medical Adviser to The ME Association and TYMES Trust

• Tony Crouch - Paediatric social worker and social work adviser to TYMES Trust, 25% ME Group, Hope 4 ME and Fibro NI. 

• A parent of a child with ME

The presentations will be followed by discussion and questions from MPs.
 
Please email your own MP and ask that they attend this important meeting.  Please ask your MP to contact the APPG on ME Chair, Carol Monaghan MP for details on how to join. Contact details for all Worcestershire MPs. 
 
All-Party Parliamentary Group on Myalgic Encephalomyelitis (ME)
Purpose - To seek to improve health, social care, education and employment opportunities for ME sufferers and encourage biomedical research into the cause and treatment of ME.
 
Background:

• 2019 Parliamentary briefing paper on key issues facing people with ME.
• Commons M.E. Debate, 24 January. Transcripts, YouTube and Reports.

• 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.