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

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

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

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

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

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

 
Take care, and stay safe everyone.

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

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

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

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

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

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

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

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

• Coronavirus and Fatigue

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 
Take care, and stay safe everyone.

• The Chronic Illness Inclusion Project (CIIP) Survey.
CIPP - Bridging the chronic illness community and the disability rights movement.  Do you have energy limiting chronic illness (ELCI)?  Are you dealing with health condition(s) that cause symptoms such as physical fatigue, mental fatigue and pain, which significantly restrict your day-to-day activities?

Dr Anna Ruddock, Advisor to the CIIP, says
"We are conducting this survey as part of the Chronic Illness Inclusion Project (CIIP). The CIIP works to build a collective voice for people with chronic illness so that we are better accounted for and included in society. The aim of this survey is to gather evidence for an inquiry by the UK Parliament’s Women and Equalities Committee into the unequal impact of Coronavirus (Covid-19) on people with protected characteristics. The Committee will use this evidence to provide recommendations to the UK government. We want to ensure that the impact of Coronavirus on people with chronic illnesses is taken into account during this process.

It should take no longer than 15 minutes to complete the survey. You can save your answers when you need to rest and return to the survey later. By completing the survey you are contributing to the effort to make the response to Coronavirus more equitable – thank you."

• Chronic Illness during the Coronavirus Covic-19 Pandemic.
This video is popular with people affected by ME.   The comedian, Miranda Hart, says - "If you are bored enough have a listen! I had a few things to share".  The part about chronic illness is mainly from around 10:40 onwards.  ME is specifically mentioned.

Another 'Chamble’ from Miranda Hart - again includes awareness on chronic illness. During this video, Miranda Hart reads, and discusses "Life in Lockdown: What Matters When All Is Lost" written by Naomi Whittingham.  Well worth watching - starts after about 14 minutes.  Naomi is the late Betty Hughes' granddaughter

• Short video to raise awareness of severe ME
In 2015, the late Betty Hughes' grandson Tom Whittingham, created a very moving ME Awareness YouTube video explaining how things are for his sister Naomi who has severe ME, and their whole family.
(From 2015 News)

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

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

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

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

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

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

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

 
Take care, and stay safe everyone.