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

National Institute for Health and Care Excellence announcement last November.  
Myalgic Encephalomyelitis (or Encephalopathy)/Chronic Fatigue Syndrome: Diagnosis and Management. 

NICE pauses publication of updated guideline on diagnosis and management of ME/CFS.
NICE has today (17 August 2021) taken the decision to pause publication of its updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS).

The guideline recognises that ME/CFS is a complex, multi-system, chronic medical condition where there is no ‘one size fits all’ approach to managing symptoms. The causes of ME/CFS are still poorly understood and because of this there are strong views around the management of this debilitating condition.
Because of issues raised during the pre-publication period with the final guideline, we need to take time to consider next steps. We will hold conversations with professional and patient stakeholder groups to do this. We need to do this so that the guideline is supported.

NICE has used its usual rigorous methodology and process in developing this guideline but despite the best efforts of the committee, that followed these to the letter to bring together the available evidence and the real, lived experience and testimony of people with ME/CFS, we have not been able to produce a guideline that is supported by all.
We want to thank everyone who has contributed to this guideline and particularly the committee and the patient groups who have worked so diligently. However, unless the recommendations in the guideline are supported and implemented by professionals and the NHS, people with ME/CFS may not get the care and help they need.
In order to have the desired impact, the recommendations must be supported by those who will implement them and NICE will now explore if this support can be achieved

M.E. charities ‘baffled by last-minute delay’ to NICE Guideline – Forward-ME announcement.

August 17, 2021
Statement on the delay to publication of the NICE Guidelines on diagnosis and management of ME - On Behalf of: Forward ME, Action for ME, ME Association, Doctors for ME, ME Research UK.
We are shocked and hugely disappointed to hear that the long-awaited NICE guidelines have been unexpectedly delayed at the last minute.
The new NICE guidelines bring clinical practice up to date with current scientific knowledge regarding ME**. Delays will hold-off still further the desperately needed improvements to patient care.
Many medical professionals, researchers and patient representatives have spent 3 years diligently reviewing and assessing the evidence.
The document has been approved by the committee and should be published.
The document removes support for therapies driven by outdated views regarding treatment for ME which are no longer supported by the science.  We understand these new guidelines may take time to become accepted by elements of the medical community, but they should not be delayed.
No minority party should be able to undermine the careful scientific consensus established by the NICE committee and the rigorous work that has been undertaken in good faith.
We urge NICE to publish this important work without delay, so doctors can get on and support patients with this often devastating disease.

Ms Nina Muirhead, head of medical education, Doctors for ME said:
“Doctors are in desperate need of improved support in how to care for patients, delaying that prolongs unscientific approaches which have no place in our medical community”.
Sonya Chowdhury of Action for ME said:
“We are in the dark about this. The NICE committee has worked hard to produce balanced guidelines which reflect science and best medical practise. Nobody should be able to undermine that.”

**also known as Chronic fatigue syndrome

The above statement relates to this announcement from NICE this afternoon (17 August).
The new NICE guideline on ME/CFS was due to be published tomorrow (18th August 2021)
‘Expert reaction' issued by the Science Media Centre UK this evening:
The Royal College of Paediatrics and Child Health (RCPCH) said:
“We are very pleased that this process has been paused and we look forward to working with NICE to ensure that future guidance is of benefit to children, young people and those who manage their care.”

Also -
"M.E. Charities baffled by delay to NICE Guideline" on Action for ME’s website.

"NICE Guideline - 11th hour delay" on ME Research UK’s website

"Fury as NICE cancels publication of finalised ME/CFS Guideline" on MEAction website.


• Action for ME  • Forward ME  • #MEAction  
• M.E. Association  • N.I.C.E.

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. 

 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  •  Post COVID Syndrome (Long COVID) 

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.

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

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

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

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

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

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

 
Take care, and stay safe everyone.

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

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

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

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

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

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

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

 
Take care, and stay safe everyone.

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

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

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

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

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

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

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

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

• Coronavirus and Fatigue

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 
Take care, and stay safe everyone.