The ME Association (MEA) give explanations for everyone, including people on various benefits.
 
Following the Chancellor’s Energy Payments announcement last month -
New energy payments announced by Chancellor
May 26, 2022
The Chancellor has just announced an extensive package to assist households struggling with the cost-of-living crisis.
 
This package will affect all households to some extent, dependent on circumstances, and some may be eligible for multiple payments.
The controversial £200 energy loan that was to be applied to all household electric bills in the autumn has been cancelled and replaced with a £400 non-repayable grant.
The Household Support Fund has also been increased to £500 million for anyone struggling to apply to their local councils for assistance.

• Low Income Payment: Benefit claimants will receive a £650 payment, made by the DWP direct to their bank accounts in 2 lump sum payments in July and later in the Autumn.
• Pensioner Payment: Pensioners who receive the Winter Fuel Payment are eligible for a £300 payment.
• Disability Payment: Disabled people who receive non-means-tested benefits such as DLA, PIP or Attendance Allowance will receive a £150 one off payment.

 
What does this mean for me?
Help with cost of living will apply to the whole of the UK. The maximum payment that you could receive if on means-tested benefits and PIP/DLA/Attendance Allowance (non-means tested) would be: 

• £400 (discount on all domestic energy bills (paid in October): The Energy Bills Support Scheme),
• + £650 (means-tested benefits (Universal Credit, Tax Credits, Pension Credit and means-tested legacy benefits such as Income Related ESA) with a first payment in July, the second in the Autumn), 
• + £150 (non-means tested disability benefits (PIP/DLA paid by September), 
• = £1200 
• + £300 if you are a pensioner (paid as part of Winter Fuel Allowance in November/December).
• And, you should have received - or will soon - a £150 rebate in Council Tax as part of the help being provided to cope with cost of living increases.
• Please read the Government's press release below to learn more. Payments will be made automatically to your bank account. 
• Housing Benefit does not qualify you for additional payments beyond the £400 discount that all households will receive. If you only receive Housing Benefit with no additional means-tested benefit then consider applying for the Household Support Fund which is administered by your local council.

 
BBC News -
Every household to get energy bill discounts of £400 this autumn
 
Government Press Release -
Millions of most vulnerable households will receive £1,200 of help with cost of living
 
-   Ella Smith,  MEA Welfare Benefits Adviser.
 
 
During June, Ella Smith, the MEA’s Welfare Benefits Adviser, gave us two ‘Cost of Living Payment’ explanatory announcements.
 
First Instalment of the £650 payment for qualifying low income households.
Cost of living payment 
June 15, 2022
 
The first instalment of the £650 payment for qualifying low income households in England, Wales, Scotland and Northern Ireland will be paid into bank accounts from 14 July 2022. This instalment will be an automated payment of £326 and the second payment later in the autumn will be £324. The government states that the payments are deliberately unequal due to the time periods used to decide who is eligible, in order to minimise fraud risks.
 
Anyone with an existing claim of the following benefits by 25th May 2022 will receive a payment: Universal Credit, Income-based Jobseekers Allowance, Income-related Employment and Support Allowance, Income Support, Working Tax Credit, Child Tax Credit and Pension Credit. Tax credits claimants will receive their payment slightly later than other DWP benefit claimants to avoid duplicate payments to the same household.
 
This payment will be tax-free, will not count towards the benefit cap, and will not have any impact on existing benefit awards.
Qualifying households do not need to do anything to apply for this payment; it will be made automatically into the bank account they usually receive their qualifying benefit in.
The payment dates for the other cost of living assistance payments to pensioners and to those on qualifying disability benefits will be announced shortly.
 
Government Information -
Cost of Living Payment
 
-   Ella Smith, MEA Welfare Benefits Adviser 
 
 
Cost of Living Payment: Who is eligible for the £650?
June 22, 2022
 
Phoebe, one of the MEA champion bloggers discusses the Cost of Living Payment in a recent blog and highlights that not everyone seems to understand who is eligible to receive the payment and those who will not receive it.
“The £650 for people on benefits does not include disabled people who are on Contribution Based Employment and Support Allowance (CB ESA). This however isn’t being made immediately clear, and I have spent a large portion of today trying to stop the spread of misinformation on Twitter, with many people confidently stating that everyone on Employment and Support Allowance (ESA) will be eligible for the £650, which is not the case. Only those on Income Related Employment and Support Allowance (IR ESA) will receive the £650.
It would be a mistake to assume that the government will help the most vulnerable first, despite them saying that they will help the most vulnerable first, but I can understand why it’s nice to think so.  With this new information, you might be hoping that once people realise that people on Contribution Based Employment and Support Allowance (CB ESA) are being excluded, they’ll make a fuss and it will be corrected?  Again, I can understand why it’s nice to think that will be the case. Disabled people on ESA have been here before.”
 
Phoebe's blog ('Puffins and Penguins') is entitled: Rishi Sunak’s Cost of Living Crisis Measures - Disabled People on ESA Are Losing Out, Again 
 
MEA Comments -
Ella Smith, Welfare Benefits Adviser provides the following information in relation to Phoebe's blog:

• People on Contribution Based Employment and Support Allowance will not be transferred to UC, only those on Income Related Employment and Support Allowance will be put on the new system. This is exactly because Universal Credit is a means-tested benefit that replaces the old, means-tested legacy benefits like Income Related Employment and Support Allowance. As Contribution Based Employment and Support Allowance is contributions-based and not means-tested, it sits outside the Universal Credit scope.
•  This is important when it comes to the cost-of-living payments because someone could be living in a household with a very high income or a lot of capital and still be able to receive Contribution Based Employment and Support Allowance (CB ESA). This is not the case with means-tested benefits because the household circumstances are considered. 
• If someone on Contribution Based Employment and Support Allowance (CB ESA) has no other income or capital coming into the household, it is very likely that they can also claim a means-tested benefit alongside their Contribution Based Employment and Support Allowance.
• Claiming a means-tested benefit is the only way to qualify for the £650 cost-of-living payment because this payment is targeted at LOW INCOME households. As discussed, someone on Contribution Based Employment and Support Allowance (CB ESA) may not be living in a low-income household but everyone on means-tested benefits will be.
• Regarding the information discussed about the Warm Home Discount, this has only been reported in the Mirror newspaper as a potential change. No legislation or further details have been announced as yet by the government. The likelihood of this happening in the current climate is still uncertain but people who claim means-tested benefits in addition to disability payments such as Personal Independence Payment (PIP) still seem highly likely to be able to receive the Warm Home Discount.  The Mirror article is here, with no real details being given. 

 
 
The Worcestershire M.E. Social Group’s website gives links to Social Media sites which maybe helpful to many people to discuss situations, or just to look and read other people’s postings.

•  B.B.C.  •  Benefits  •  Government U.K. 
•  M.E. Association  •  Worcestershire M.E. Social Group

 NICE ME/CFS: Diagnosis and Management.
NICE releases details of ME/CFS roundtable meeting on 18 October.
NICE guideline on the Diagnosis and Management of Myalgic Encephalomyelitis (or Encephalopathy)/Chronic Fatigue Syndrome (ME/CFS) was paused on 18 August.
 
Ahead of the roundtable meeting on 18 October, NICE has today (12 October 2021) released details of the agenda and how the meeting will be run.
 
12 October 2021
Publication of the NICE guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) was paused after several professional organisations contacted NICE to say they had serious concerns about some aspects of the guideline.
NICE has invited representatives from a range of patient and professional organisations to discuss the concerns that were raised.
The discussion will be chaired by Dame Carol Black, who is independent from NICE and from the guideline development process. She will chair the discussion only and no decisions will be made at the meeting.
 
Following the meeting, minutes will be available and NICE aims to reach a swift decision on the future publication of the guideline.
Professor Gillian Leng, NICE chief executive, said:  “We understand that patient groups are anxious to see the guideline published as soon as possible.  We are holding this roundtable to explain how the guideline was developed and the rationale behind the recommendations made and to hear and understand the concerns that have been raised.  We hope there will be an open and honest discussion about these concerns to ensure that the final guideline will be effectively implemented across the system.”
The agenda for the meeting is as follows:

1. Introduction and rules of the meeting – Dame Carol Black
2. Guideline production at NICE - Dr Paul Chrisp, director of the Centre for Guidelines at NICE
3. Aim of the Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management guideline - Dr Peter Barry, chair of the ME/CFS guideline committee
4. Discussion of issues raised: diagnosis, graded exercise therapy, children and young people, and cognitive behaviour therapy.
5. Summary - Dame Carol Black.

 
In the House of Lords, on Tuesday 12 October 2021
The forthcoming NICE Guideline was discussed during a short "Health: Chronic Fatigue Syndrome" debate.
“To ask Her Majesty’s Government, further to the decision to delay the planned new guidelines on the Diagnosis and Management of ME/CFS, what assessment they have made of the ability of the National Institute for Health and Care Excellence to carry out its functions; and when they expect such guidance to be published.”
 
Also, this week, Action for ME gave Forward-ME’s update: Forward ME: upcoming NICE Round Table.
October 11, 2021
Update from Forward-ME on the upcoming round table event, hosted by the National Institute for Health and Care Excellence (NICE) next Monday (18 October), to "discuss key issues raised prior to publication" of its paused guideline for M.E.
Forward-ME and our members want to thank the many people with M.E., doctors and researchers who have contacted us to share concerns and frustrations around the delays to publication of the new NICE guideline for M.E.
Forward-ME has been invited to the round table and our following member organisations will also attend individually:

• Action for M.E.
• ME Research UK
• ME Association
• Science for ME
• The 25% ME Group
• The ME Trust
• Tymes Trust
• #MEAction.

Preparations for the round table mirror the issues raised by the M.E. community across social media. The charities are grateful for all the feedback we have received. The round table is an opportunity to ensure the rigorous work of the NICE guideline committee is understood by all care providers.
We are not attending to discuss changes. All Forward-ME members recognise the significance of the recommendations in the new guideline, which has been produced and approved in accordance with NICE’s rigorous procedures, and should be published. We share the frustrations over the delay, and are working to achieve urgent publication.
We look forward to updating the M.E. community in the days following the round table, and we hope this is accompanied by swift publication.
 
The NICE Guideline ME/CFS: Personal Observations 
by Dr Charles Shepherd, the MEA Hon Medical Adviser.
August 18, 2021
We should have been welcoming the arrival of a completely new NICE guideline on ME/CFS today. A guideline that acknowledged ME/CFS as a serious and complex medical condition. In fact, we had sent an embargoed press release and statement from Forward-ME to all the news-media in anticipation of its publication.
It was a guideline that contained sensible advice on activity, energy, and symptom management - along with a revised timeline and advice for early and accurate diagnosis, and it placed special emphasis on the care and management of children and young people and those who have severe or very severe ME/CFS.
Instead, we are discussing the huge disappointment felt by the patient community to yesterday's announcement from NICE to cancel publication today and to pause proceedings while discussions take place around objections to the new recommendations regarding CBT and GET - objections that were discussed and resolved as part of the long review process.
On a personal basis, having spent a considerable amount of my time over the last four years working with colleagues on the preparation of this new guideline, I feel frustrated and angry. The action of a small number of people who have persuaded the leadership at the Royal College of Physicians, the Royal College of Paediatrics and Child Health, and possibly other Royal Colleges, to put pressure on NICE to reconsider what had already been agreed by the guideline committee, is reprehensible.
Dr Shepherd also explained that “the delay is unprecedented”, and described “What’s Next?”
 
The MEA’s FREE MEA NICE Guideline Leaflet provides essential extracts from the DRAFT GUIDELINE that will help you to understand the help and support that should be available from your local health and social care services.
 
 
Amongst the many articles on the MEA website, following the pause of the NICE Guideline.
 
Trial By Error:
An Updated Letter to the NICE Chief Executive About the Unpublished ME/CFS Guideline
September 16, 2021
 
Letter to NICE from UK charities and support organisations
September 6, 2021

A Letter Urging NICE to Publish ME/CFS Guideline Without Delay
September 1, 2021

•  25% M.E. Group  •  Action for ME  •  Forward ME  •  Government U.K.  •  #MEAction  •  M.E. Association  •  MERUK  •  N.I.C.E.
 •  Parliament U.K.  •  The ME Trust  •  Tymes Trust

The Worcestershire County Council Covid-19 website reassuring announcement following news of an increase of cases in Redditch.
 
Coronavirus cases in Worcestershire - 25 August 2020
We have seen an increase in cases in Redditch but these are not linked to a workplace or community venue. We are confident that most cases are linked to a single event in a private household and the risk to the wider community is low.
Those who have tested positive are following our advice and self isolating. Others who attended the event have also gone into isolation. We are continuing to trace any additional contacts but the risk to the wider community is low.  
 
This is a reminder to all of us that Covid-19 has not gone away, and it is important that we all continue to wash our hands regularly, wear face coverings where necessary, and keep our distance. If you have symptoms of COVID-19, you must arrange a test.  Read the latest statement from Dr Kathryn Cobain, Director of Public Health for Worcestershire
 
Statement on COVID-19 in Redditch
Following an increase in the number of confirmed COVID-19 cases in Redditch, Rachel Maclean MP issued a statement.
 
Worcestershire health chief reassures public after coronavirus cases rise
The Worcester News article explained that the director of public health for Worcestershire has said the number of positive coronavirus cases in Worcestershire “remains low” despite an increase in cases in a county town.   Dr Kathryn Cobain reassured residents after a sharp rise in cases in Redditch, where 25 new Coronavirus were reported last week, giving the town a higher coronavirus rate per 100,000 people than in Birmingham.
 
Public Health Worcestershire has issued advice for car sharing - this was publicised by Worcestershire County Council on 20 August 2020 
It is advised that you only car share with people in your household, if you must share with someone from outside your household, the advice is as follows:

• share with just one other person from outside your household
• wear face coverings for the duration of the journey
• maximise the distance between driver and passengers (with the passenger sitting in the back on the opposite side from the driver)
• keep windows down when travelling
• clean the car between journeys, particularly wiping down all contact points that people may have touched

 
 
Information specifically for people affected by ME/CFS
 
The MEA Association’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

 
Take care, and stay safe everyone.

•  25% M.E. Group •  Action for ME •  #MEAction •  M.E. Association
•  Coronavirus (COVID 19) 
•  Local News •  Worcestershire County Council •  MP •  N.H.S. 

Latest Free Leaflet Update: Covid-19 and ME/CFS by Dr Charles Shepherd. 
This week, the ME Association (MEA) issued an update to their general leaflet on Covid-19 and ME/CFS.  This 12 page leaflet is part of a range of leaflets the MEA have made freely available during this unprecedented crisis. The MEA hope they will continue to provide help and reassurance and will keep updating them as necessary.
The detailed leaflet covers -
Controlling the spread of the virus;  Hand and Respiratory Hygiene;  Vaccine Development;  Testing for the virus;  What to do if you have symptoms suggestive of coronavirus infection;  Shopping - Food and Medicines;  Employment Government Guidance: The vulnerable and extremely vulnerable;  ME/CFS Research Progress on the new NICE clinical guideline on ME/CFS ;  Can pets transmit the infection?;  Possible forms of treatment;  What should people with ME/CFS do if they catch Cv19?;  Face Masks;  What should previously healthy people do if they experience symptoms suggestive of post infectious fatigue and/or ME/CFS?;  Hospital based referral services for ME/CFS
 
The MEA’s recent Covid-19 leaflets and letters are all available to download,

1. 12 page Covid-19 and ME/CFS Weekly Update -
2. 4 page MEA information on Reducing the risk of infection -  Reducing the risk of catching Coronavirus if you have ME/CFS leaflet by Dr Charles Shepherd.
3. 8 page MEA information on PVF / PVFS / ME / CFS following Covid-19 Infection - Post-viral fatigue (PVF) and Post-viral fatigue syndrome (PVFS) following Coronavirus Infection.  
4. MEA statement, signed by Dr Charles Shepherd, in Letter: Asserting your vulnerable status.
5. 4 page MEA detailed leaflet on Benefits - Your Benefits during the Coronavirus Crisis. 
6. MEA Employment Guidance: Key points on Employment, ME/CFS and the Coronavirus.  

Action for ME (AfME) have a 'Coronavirus and M.E./CFS' page - which has been set up to keep track of up-to-date advice regarding Coronavirus, and support available from Action for M.E.  AfME are monitoring this page, and it gives the time when it was last updated.
 
#MEAction continue to add information to their Covid-19 Resources page, giving information about the coronavirus outbreak and its effect on people with ME. It includes links to useful governmental sites regarding the outbreak as well as resources and articles particularly developed for people with ME. 
 
The 25% M.E. Group has leaflets available to download for people with severe M.E. on its website.

• Message from Dr Willy Weir and Dr Nigel Speight, Medical Advisor to the 25% ME Group - Coronavirus Update 7 March
• Message from Dr Nigel Speight, Medical Advisor to the 25% ME Group
  Coronavirus and members of the 25% ME Group

 
Local Information
 
Worcestershire Health & Care NHS Trust. 
COVID19 (coronavirus) - Information if attending an appointment
From Monday, 15th June 2020 if you are coming to any of our hospitals, inpatient wards or clinics it is important that you wear a face covering at all times.  The website gives full information.
 
Healthwatch Worcestershire’s Covid-19 Survey
Healthwatch Worcestershire is asking local residents to share their views during the Coronavirus Covid-19 outbreak. They have launched a survey to gather feedback about information available in relation to Covid-19 and experiences of accessing local health and social care services at this time.
The survey can be completed online via Healthwatch Worcestershire’s website - www.healthwatchworcestershire.co.uk/covid-19-survey/. You can also contact them directly for further information, paper copies of the survey, or to share any experience of local health and social care services -info@healthwatchworcestershire.co.uk or 01386 550264.
 
Healthwatch Worcestershire was established as the independent consumer champion - giving the public, patients and users of health and social care services in Worcestershire a voice. 
 

The Worcestershire County Council: Covid-19 Information. 

Coronavirus (COVID-19) Outbreak Control Plan (First issued on 30 June. available on their main Covid-19 page)
As part of the next phase of the national response to the COVID-19 pandemic, Worcestershire County Council is required to produce and deliver a Local Outbreak Control Plan. The plan details how Worcestershire County Council and its partners will prevent and respond to any outbreaks and incidents of COVID-19 in Worcestershire.
To minimize local outbreaks, we need everyone to play their part. By continuing to follow the social distancing guidance, practicing good hand hygiene and testing and isolating when necessary, we can all keep ourselves and everyone safe.
(This section amended on 1 July 2020)

Dr Kathryn Cobain, Director of Public Health in Worcestershire, explains how the R rates are calculated nationally and regionally, and that data is drawn from many official sources and the process is complex and robust.  Here in Worcestershire, we fall under the Midlands region for this data, and this includes a very large area, across the East and West Midlands. It is not possible to calculate a meaningful R rate at a very local level, for example in cities such as Worcester. An R rate even at County level would not be a reliable and robust interpretation of the data.
This is because the data gathered is at such low numbers that even a minor change can create a disproportionate difference. Locally we review a multitude of early warning indicators, and look for signs of change. We continue to monitor the situation closely to ensure the safety of our residents.
 
Take care, and stay safe everyone.

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

1. 12 page Covid-19 and ME/CFS Weekly Update - Coronavirus (COVID-19/Cv19) and ME/CFS leaflet
2. 4 page MEA information on reducing the risk of infection -  Reducing the risk of catching Coronavirus if you have ME/CFS leaflet by Dr Charles Shepherd.
3. 8 page MEA information on PVF / PVFS / ME / CFS following Covid-19 Infection - Post-viral fatigue (PVF) and Post-viral fatigue syndrome (PVFS) following Coronavirus Infection.  
4. MEA statement, signed by Dr Charles Shepherd, in Letter: Asserting your vulnerable status.
5. 4 page detailed leaflet - Your Benefits during the Coronavirus Crisis. 

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

1. MEA leaflet - Coronavirus (COVID-19/Cv19) and ME/CFS
This week’s update, explains the Easing of Lockdown.
The various items of relaxation announced by the Prime Minister mean that changes in relation to exercise, education and employment are moving faster in England than elsewhere in the UK.
But none of these changes are going to have any significant affect on most people with ME/CFS - unless someone is planning to return to work or school.
As far as education in England is concerned, the key point here in relation to ME/CFS is that any return to school is not compulsory - the government has simply issued guidance on returning to school for certain groups of children.
My understanding is that nobody is going to be in trouble, or even fined, if they choose to continue to keep their children at home.
For people with ME/CFS who may now be asked to return to work, or choose to return to work, this has to be on the basis of people being able to travel to work safely. And all aspects of the workplace must be safe in relation to hygiene and social distancing measures.
Employers have a clear duty under Health and Safety legislation to provide a safe working environment.
The Health and Safety Executive has opened a hotline for people to call if they are not happy about what an employer is proposing or doing: 0300 790 6787, Monday to Friday 8.30am to 10.00pm.
If you have concerns about working arrangements you should discuss them with your trade union or professional body representative…
 
2. MEA leaflet - Reducing the risk of catching Coronavirus if you have ME/CFS by Dr Charles Shepherd 
The basis for this guidance -. People who are infected pass on the virus in tiny droplets that are spread from the mouth during coughing, spluttering and even breathing.
Viral droplets can also be passed on by people who are displaying no obvious symptoms. So, a friend, or neighbour, or caller at the door, who looks and feels well could still be infected and spreading the infection.
These virus laden particles then land on surfaces where they remain (for up to 72 hours on some hard surfaces) and can be picked up if someone touches the infected surface. An infected hand or finger then touches the eyes, mouth or nose and the virus enters the body.
 
This leaflet contains a10-point guide to the most important measures that will help to prevent you catching this infection.
1. Stay at Home
2. Social Distancing
3. Don’t touch surfaces outside the house
4. Don’t touch your face
5. Wash your hands regularly with soap and water
6. Post, parcels and shopping
7. Stay safe away from home
8. Take a vitamin D supplement
9. Face masks
10. Meeting a friend or relative
 
3. MEA leaflet - Post-viral fatigue (PVF) and Post-viral fatigue syndrome (PVFS) following Coronavirus Infection.  
Our group’s recent blog Coronavirus (Covid-19): Post Covid-19 Rehabilitation  tells you about this MEA 8 page leaflet, and also gives information on a Daily Telegraph article, and Physios for ME.
 
4. MEA Letter: Asserting your vulnerable status
Go to our group’s update blog of 20 April for further information.    This update followed the Government announcement on 16 April -
".. .. the government has determined that current measures must remain in place for at least the next 3 weeks".
 
5. MEA leaflet - Your Benefits during the Coronavirus Crisis. 
The MEA Benefits leaflet has two sections - the first covering benefits for people tested positive for Covid-19 or have the symptoms or for those who share a household with someone in this situation;  followed by a section for people on Universal Credit or ESA who have been treated as having limited capability for work but not limited capability for work-related activity (ie “work preparation group” or “limited capability for work” respectively).
The information provided in this leaflet was correct at the time of writing - April 15 - but please be aware that the regulations and guidance are changing daily.
 
• Action for ME (AfME) have a 'Coronavirus and M.E./CFS' page - which has been set up to keep track of up-to-date advice regarding Coronavirus, and support available from Action for M.E.  AfME are monitoring this page, and it gives the time when it was last updated.
 
AfME explain that it remains essential that people with M.E. follow existing advice about social distancing “to reduce social interaction between people in order to reduce the transmission of Coronavirus.” It is intended for use in situations where people are living in their own homes, with or without additional support from friends, family and carers. If you live in a residential care setting, other guidance is available. AfME advise - those who are at increased risk of severe illness from Coronavirus to be particularly stringent in following social distancing measures, pointing out that this means those who are: aged 70 or older, regardless of medical conditions, and those who are aged under 70 with a listed underlying health condition [...including] chronic neurological conditions, such as Parkinson’s disease, motor neurone disease, multiple sclerosis (MS), a learning disability or cerebral palsy diabetes.
Given that M.E. is listed as a neurological condition by NHS England, SNOMED (the system used by GPs in England for electronic health records) and the World Health Organisation, we include people with M.E. in this category of increased risk of severe illness from Coronavirus.
 
• ME Research UK are asking you to Chop for M.E. and raise funds for research.
With the UK government encouraging those who cannot work from home and whose workplace has appropriate measures in place to counter the COVID-19 threat to return to their workplaces, a novel issue has arisen - the urgent need for a haircut.
Likewise, for those of us at home - time may seem to have stood still but follicularly-speaking - it has not. It may be that a trim or even something more drastic is needed.
ME Research UK issues a challenge - Chop for ME - to raise funds for our charity. We hope that it can be shared widely and we hope that photos posted with #ChopforME will inspire others.  Get a home haircut, donate £10 by mobile phone, and challenge a friend.  Please remember to observe all social distancing and health guidelines pertaining to your location.

Become involved in Chop for M.E. 
Just Chop your Hair, and donate £10 to ME Research UK.  Text CHOPME to 70085 to donate £10;  Texts cost £10 plus one standard rate message;  Post a photo using the hashtag #ChopforME; and challenge your friends.
(This section amended on 27 May 2020)
 
• #MEAction continue to add information to their Covid-19 Resources page, giving information about the coronavirus outbreak and its effect on people with ME. It includes links to useful governmental sites regarding the outbreak as well as resources and articles particularly developed for people with ME. 
 
• The 25% M.E. Group has leaflets available to download for people with severe M.E. on its website.

• Message from Dr Willy Weir and Dr Nigel Speight, Medical Advisor to the 25% ME Group - Coronavirus Update 7 March
• Message from Dr Nigel Speight, Medical Advisor to the 25% ME Group
  Coronavirus and members of the 25% ME Group

 
Take care, and stay safe everyone.

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

• Controlling the spread of Covid-19
• Hand and Respiratory Hygiene
• Vaccine Development
• Testing for the virus
• What to do if you have symptoms suggestive of coronavirus infection
• Shopping - Food and Medicines
• Employment
• Government Guidance: The vulnerable and extremely vulnerable
• ME/CFS Research
• Progress on the new NICE clinical guideline on ME/CFS
• Can pets transmit the infection?
• Possible forms of treatment for the virus
• What should people with ME/CFS do if they catch Covid-19?
• The Face Mask debate
• Vitamin D Deficiency
• What should previously healthy people do if they experience symptoms suggestive of post-infectious fatigue and/or ME/CFS?
• Hospital based referral services for ME/CFS
• ME Association working arrangements

 
• Action for ME (AfME) have a 'Coronavirus and M.E./CFS' page - which has been set up to keep track of up-to-date advice regarding Coronavirus, and support available from Action for M.E.  AfME are monitoring this page, and it gives the time when it was last updated.
 
AfME Essential advice section
The UK Government has issued guidance on protecting those are are defined, on medical grounds, as extremely vulnerable. This group does not include people with M.E. (unless they have additional conditions that are listed in this category).
The UK Government is asking people to register “if you have a medical condition that makes you extremely vulnerable to coronavirus. For example, you’ll be able to ask for help getting deliveries of essential supplies like food.” Please be aware that the criteria is very specific. Our understanding is that you are only eligible for this support if you received a letter from the NHS asking you to stay home for 12 weeks.
It remains essential that people with M.E. follow existing advice about social distancing “to reduce social interaction between people in order to reduce the transmission of Coronavirus.” It is intended for use in situations where people are living in their own homes, with or without additional support from friends, family and carers. If you live in a residential care setting, other guidance is available. They are advising those who are at increased risk of severe illness from Coronavirus to be particularly stringent in following social distancing measures. This means those who are:

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

Given that M.E. is listed as a neurological condition by NHS England, SNOMED (the system used by GPs in England for electronic health records) and the World Health Organisation, we include people with M.E. in this category of increased risk of severe illness from Coronavirus.
 
• Physios for ME Covid-19 statement. 
 
During this national crisis many physiotherapists have been redeployed to front-line services, but as time goes on our attention will shift to the rehabilitation of survivors.
COVID-19 is a new virus so rehabilitation can only be based on generalised experiences. Universal presentation after a period of critical illness includes significant muscle loss and impaired cognitive function, with the standard approach to addressing such deconditioning involving mobilisation and exercise. Once medically fit many patients will be discharged home as quickly as possible, with community teams picking up the remainder of the rehabilitation process.
It is vital for physiotherapists (and any other treating health professional) to understand a potential complication of a viral infection - Post Viral Fatigue Syndrome (PVFS).
 
Swift identification of PVFS is important because the management techniques differ to the typical reconditioning approach that a physiotherapist may adopt.  PVFS has strong links with development of ME, which is why we have taken particular interest in getting these messages out there to our colleagues.
Inappropriate management advice is already out there, and together with our allies we have already challenged one such publication. More about that, and why inappropriate management can be so detrimental, can be read here.
 
• #MEAction continue to add information to their Covid-19 Resources page, giving information about the coronavirus outbreak and its effect on people with ME. It includes links to useful governmental sites regarding the outbreak as well as resources and articles particularly developed for people with ME.  https://www.meaction.net/covid-19/
 
• The 25% M.E. Group has leaflets available to download for people with severe M.E. on its website.

• Message from Dr Willy Weir and Dr Nigel Speight, Medical Advisor to the 25% ME Group - Coronavirus Update 7 March
• Message from Dr Nigel Speight, Medical Advisor to the 25% ME Group
  Coronavirus and members of the 25% ME Group

 
Take care, and stay safe everyone.

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

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

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

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

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

• #MEAction continue to add information to their Covid-19 Resources page, giving information about the coronavirus outbreak and its effect on people with ME. It includes links to useful governmental sites regarding the outbreak as well as resources and articles particularly developed for people with ME.

• Action for ME (AfME) have a 'Coronavirus and M.E./CFS' page - which has been set up to keep track of up-to-date advice regarding Coronavirus, and support available from Action for M.E.  AfME are monitoring this page, and it gives the time when it was last updated.  AfME are also regularly updating their services, support and useful contacts page with resources that may be helpful.

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

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

• The 25% M.E. Group has leaflets available to download for people with severe M.E. on its website.

• Message from Dr Willy Weir and Dr Nigel Speight, Medical Advisor to the 25% ME Group - Coronavirus Update 7 March
• Message from Dr Nigel Speight, Medical Advisor to the 25% ME Group
  Coronavirus and members of the 25% ME Group

 
Take care, and stay safe everyone.

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

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

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

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

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

For those who really can’t afford the £20 a year to borrow up to 10 audiobooks a week, they’re offering completely free membership instead.  And, unlike some state benefits, there’s no means test – just a requirement from you to pop a note into their honesty box which says you can’t afford the fee.
 
• The 25% M.E. Group has leaflets available to download for people with severe M.E. on its website.

• Message from Dr Willy Weir and Dr Nigel Speight, Medical Advisor to the 25% ME Group - Coronavirus Update 7 March
• Message from Dr Nigel Speight, Medical Advisor to the 25% ME Group
  Coronavirus and members of the 25% ME Group

 
Take care, and stay safe everyone.

ME Charities and APPG on ME write to Supermarkets & UK Government.

ME Research UK - letter explaining how things are for people with ME/CFS.

Letter sent to major supermarket chains and UK Government from UK ME charities and the All Party Parliamentary Group on ME
Posted on 27 Mar 2020

We are writing on behalf of the adults, children and young people we support who have Myalgic Encephalomyelitis (M.E.) (also known as Chronic Fatigue Syndrome, or CFS), asking for your help.

The Government has identified that people with chronic neurological conditions, including M.E./CFS, are at increased risk of severe illness from Coronavirus.

More than one in four people with M.E./CFS are so severely affected that they are unable to leave their homes independently, and even those with the milder form of this non-visible illness struggle to access services and support.

Many of those we support have relied on the excellent home delivery service you offer for years, to get food and essential supplies. But over the past few weeks the increased demand has meant they are unable to compete with healthy people who are able to spend longer online, searching for slots and sourcing deliveries.

We are also hearing from those who are able to visit stores who have tried to use the dedicated shopping times for those at risk – but who have been challenged because the debilitating pain, fatigue and cognitive difficulties that come with this non-visible condition cannot be seen.

We are now seeing a huge increase in the number of calls to our already busy helplines, with many telling us they do not have any food in the house.
While those who are house/bed-bound are not necessarily included in the Government’s official category of “vulnerable,” this does not give the full picture.

This group of increasingly desperate people are unable to visit a store and many have no friends or family to support them. They need urgent help now – please will you:

• include those house/bed-bound by M.E./CFS in your priority access group for your online service?
• allow those with M.E./CFS, who are able to leave the house, access to priority shopping times in store?

We would be happy to provide our members with a resource they can download that shows they have a chronic neurological condition and are eligible to use this service.

Our teams are happy to help answer any questions or provide more information.

Carol Monaghan MP, Chair, APPG for M.E.

The Countess of Mar, Chair of Forward-ME

Ben Lake MP; Jim Shannon MP ; Mark Tami MP Dr James Davies MP; Edward Davey MP: Alex Sobel MP; Dame Diana Johnson MP.

Sonya Chowdhury, Chief Executive Action for M.E.

Nigel Riley, Chair, ME Association

Sue Waddle, Vice Chair, ME Research UK

Esperanza Moreno, #MEAction UK

Helen Winning, Chief Executive, The ME Trust

Simon Lawrence, Chair, The 25% ME Group

Jane Colby, Executive Director, Tymes Trust

Janice Kent, Director, reMEmber

Dr Nina Muirhead, Chair, Medical Education Group UK CFS/ME Research Collaborative

Dr William Weir

Dr Nigel Speight
 

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

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

Further comprehensive information is available from the MEA Guidance published the previous day -  'ME Association Guidance: Coronavirus and ME/CFS by Dr Charles Shepherd' on 16 March.
 
The MEA explained, that with the UK government now moving on from attempted containment of the virus to delaying the spread, we have also reached a new stage when it comes to how people with ME/CFS should be reducing the chances of catching this infection.
The MEA said the key preventative measures remain exactly the same:
– avoiding infections on surfaces by keeping them clean, wherever possible,
– thoroughly washing hands and wrists after touching surfaces away from home,
– not touching your face,
– keeping well away from anyone who has any signs of an infection,
– keeping a safe distance from everyone else – even people you know!   
 
• #MEAction now have a COVID-19 RESOURCES page, giving information about the coronavirus outbreak and its effect on people with ME. It includes links to useful governmental sites regarding the outbreak as well as resources and articles particularly developed for people with ME.
 
• Action for ME (AfME) now have  a 'Coronavirus and M.E./CFS' page - which has been set up to keep track of up-to-date advice regarding Coronavirus, and support available from Action for M.E.  AfME are monitoring this page, and it gives the time when it was last updated.
 
• The 25% M.E. Group has leaflets available to download for people with severe M.E. on its website.

• Message from Dr Willy Weir and Dr Nigel Speight, Medical Advisor to the 25% ME Group - Coronavirus Update 7 March
• Message from Dr Nigel Speight, Medical Advisor to the 25% ME Group
  Coronavirus and members of the 25% ME Group

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

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

(post updated on 21 March)