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.

• 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.

The next Worcestershire NHS CFS/ME Service Recovery and Management group, on Wednesday 25 March, is being led by Sarah Sherwood, who will be talking about pain management. Sarah is an experienced Psychologist with the Pain Management team in Worcester.

The Recovery and Management group is run on a bimonthly basis, and is open to anybody who has previously received treatment from the NHS CFS/ME Service and has now been discharged.  It aims to provide people further support without having to be re-referred to the CFS/ME Service.

All sessions are run by staff members of the NHS CFS/ME Service and are held on the last Wednesday of every other month at Ability House, St John's Campus, Henwick Grove, Worcester, WR2 6AJ.
 
The Group’s 2020 Timetable -
 
March 25th 2020 - Pain management (Sarah Sherwood)
May 27th 2020 - Nutrition (Pam Clarke)
July 29th 2020 - Pilates (Sue Bratton)
September 23rd 2020 - The Alexander Technique (Rachel Kevern and Lesley)
November 25th 2020 - ‘Bring and share’ crafts and Christmas social

Please check the NHS CS/ME Service website for further information, and call the service to confirm your attendance beforehand.

The ME Association’s (MEA) article about their new leaflet summarises all the key clinical, research and political evidence supporting a neurological classification for myalgic encephalopathy/encephalomyelitis (M.E.).

A very useful leaflet, at the time when the Worcestershire Health & Care NHS Trust are requesting your opinions and feelings to help develop their future local Neurology Rehabilitation Care Services.

The MEA article includes two free factsheets - an overview of M.E., and a summary of the key research evidence of all the abnormalities found in M.E.
The MEA explain that Neurological disorders are diseases of the nervous system, which include structural, biochemical or electrical abnormalities in the brain, spinal cord or peripheral nerves that can result in a range of symptoms.

In this leaflet, Dr Charles Shepherd summarises all the key clinical, research and political evidence that supports the World Health Organisation’s classification and UK Government’s recognition of ME/CFS as a neurological disease.

The leaflet has been produced to support anyone who needs help understanding or conveying the neurological basis for the illness. It was fully revised and expanded in January 2020.

Worcestershire Health & Care NHS Trust would like to hear your opinions and feelings to help develop their future local Neurology Rehabilitation Care Services.

How to get involved - the NHS Trust are holding events in Worcester and Bromsgrove, where you can hear what they do now, and give your views on how things could be improved.
Events:

• 26 February 2020, 2.00 to 4.00 pm, St Peter’s Baptist Church, Eden Close, Worcester, WR5 3TZ
• 5 March 2020, 2.00 to 4.00 pm, BHI Parkside, Stourbridge Road, Bromsgrove, B61 0AZ

For more information or to reserve your place - email b.banner@nhs.net or call 01905 681495

The Worcestershire Health & Care NHS Trust want local people who have experience of neurological conditions to help them develop a better, more equitable service for future patients and families/carers.
Share this information, and help publicise the Neurology Rehabilitation Care Services future development with their poster (see below).

Dr Mirella Ling, Specialist in Infectious Diseases Worcestershire Acute Hospital NHS Trust, is the Lead Clinician of the Worcestershire Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) Local Multi-Disciplinary Team (Local Multi-Disciplinary Team).  Dr Mirella Ling and Dr Mark Roberts, Specialists in Infectious Diseases Worcestershire Acute Hospital NHS Trust, hold CFS/ME Clinics at Kidderminster Hospital for a new diagnosis, or when further support is required - plus an Infectious Diseases Registrar occasionally takes the clinic.

The CFS/ME Service’s website has changed.
The updated links to the Worcestershire CFS/ME Local Multi-Disciplinary Team (LMDT) page on the Worcestershire Health & Care NHS Trust website are on our ‘About ME Worcestershire’ page.

The LMDT information, includes the referral protocol giving details of symptomology and tests that should be done prior to patients being seen by the Consultants.

The 'Following discharge' link gives dates and topics for the Recovery And Management group forthcoming meetings, held on a bimonthly basis.

Warwick Davis, former Support Group Vice-Chair, who now organises the Worcestershire M.E. Social Group’s Lunches throughout the County, has been spreading the word. 

Warwick tells us -
“For a number of years I have been very fortunate to have had a one to one with a Third year student doctor.  My surgery is a teaching facility for the QE University Hospital, Birmingham, and one of the students was allocated to me for a case study - a long term illness, in this case ME.  My experience has cost me 30 years of my life.

This year things changed a little for I spoke to the group as whole for an hour.  Feed-back has once again been positive and they continued the discussion with the Doctor from the practice, who had sat in on the talk.  One student is now continuing with my case.

I would like to thank the ME Association for providing me with handouts for distribution to the students and the Doctor.”

Has your doctor received a copy of the MEA (ME Association) Purple Book "ME Association Clinical and Research Guide?" See also our previous "Understanding Myalgic Encephalomyelitis (ME)" blog, dated 6 November.

Four recent publications -
 "Supporting you and your patients with ME/CFS" - Forward-ME's Briefing for GPs.
"A Community … and ME" - Invest in ME Research’s new 42 page booklet.
"Worcestershire GPs’ CFS/ME referral protocol" - highlighted on our blog, in April this year.
"ME Association Clinical and Research Guide" - The Purple Book, 2019 edition.

The following gives more information about these publications  -

• Help your GP understand M.E. -
"Supporting you and your patients with ME/CFS" - Forward-ME's Briefing for GPs.
Copies of the 4 page Forward-ME Briefing "Supporting you and your patients with ME/CFS" were distributed at the Royal College of GPs Conference in Liverpool last month.  During the conference, Action for ME and the ME Association advised GPs on how they can best help people with M.E./CFS.

• Help everyone understand M.E.-
"A Community … and ME" - Invest in ME's 42 page booklet. 
In order to raise awareness of how ME affects a community, Invest in ME Research looks at some figures in society and views their perception of the disease and the problems they are confronted with.   The new downloadable booklet, available to share.

• Help your Worcestershire GP understand M.E.. -
"Worcestershire GPs’ CFS/ME referral protocol" - highlighted on the Worcestershire ME Social Group’s blog in April this year.  Also highlighted on the Group’s handout.

• Help your healthcare professional understand M.E. -
"ME Association Clinical and Research Guide".  Free copies of The Purple Book - 2019 edition are available for health professionals.  The MEA again offer free copies of the 214 page print version to GPs, NHS consultants and other healthcare professionals in the UK.   Highlighted on the Group’s handout.

• Help your Parliamentary Candidates understand M.E. -
If you see your local candidates or their representatives, tell them about this blog, the Worcestershire ME Social Group’s website, and our social gatherings.  Worcestershire MPs' contact information will be updated on the Social Group’s website after the General Election.

New free MEA leaflet - giving full explanations. 
The new MEA (ME Association) leaflet is available to download and read online or print at home.  It can also be ordered from the MEA website shop or as a hard copy from the MEA head office: 01280 818964 between 9.30am and 3.00pm, Monday-Friday.

“Having a chronic neurological disease is one of the recommended criteria for NHS flu vaccination, and the classification of ME/CFS in WHO ICD10 as a neurological disease is fully recognised by the Department of Health.  So The ME Association believes that people with ME/CFS should therefore qualify for a free NHS flu jab if they decide to have one.”

The MEA website article gives us information on the 2019-2020 flu vaccine and the full leaflet weighs up the pros and cons of flu vaccination for people with ME/CFS.  It explains the science behind flu viruses and flu vaccines, and contains updated information about the strains of flu that the latest vaccination is seeking to protect people against.  Also, the leaflet gives key points in favour of having this protection, and key points where caution is required when considering flu vaccine.

We meet socially in many locations throughout the county.
All people with M.E., CFS, FMS, and their carers, friends and relatives, are welcome at all Worcestershire M.E. Social Group gatherings - please join us at whichever suits you.  Join us for a bite to eat, or just a cuppa and chat.
Our 2019 Handout gives all dates and venues for this year .

The current ME Association (MEA) Monthly Survey asks - “To what extent has loneliness and social isolation become a consequence of having ME?”  Scroll down on the MEA home page to take part.

The ME Association and Action for ME discuss loneliness during Loneliness Awareness Week.

• Loneliness, ME and the benefit of local support groups by Bill Clayton | 21 June 2019.
• How can I get connected this Loneliness Awareness Week? June 20, 2019.

 
The NHS give Loneliness and Isolation advice, both locally and nationally.

• Worcestershire Health and Care NHS Trust.
• NHS England.