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

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

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

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

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

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

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

 
Take care, and stay safe everyone.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Countess of Mar, Chair of Forward-ME

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

Sonya Chowdhury, Chief Executive Action for M.E.

Nigel Riley, Chair, ME Association

Sue Waddle, Vice Chair, ME Research UK

Esperanza Moreno, #MEAction UK

Helen Winning, Chief Executive, The ME Trust

Simon Lawrence, Chair, The 25% ME Group

Jane Colby, Executive Director, Tymes Trust

Janice Kent, Director, reMEmber

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

Dr William Weir

Dr Nigel Speight
 

International M.E./CFS & FMS Awareness Day. 
In a recent letter, Robin Walker Worcester MP, tells us -
“I welcome ME Awareness Week, and I hope it helps more people understand this condition, which can be so frustrating and distressing for many.”

May 12 - #MillionsMissing Global Virtual Meetup
#MillionsMissing is a global campaign for ME health equality.  No matter where in the world you are, throughout the day on May 12th, you will be able to call into a "virtual room" where you can connect with other activists.

Events in Worcestershire and nearby during May:
• Wednesday 8 May,
ME/CFS NHS Service M.E. Awareness Week Drop-In
anytime between 1.00 and 3.00 pm,  at the Lyppard Hub (Ankerage Green, Worcester, WR4 0DZ)
• Thursday 9 May,
Worcestershire M.E. Social Group Afternoon Café Meeting -
from 2.30 pm to 4.00 pm, at the Olive Grove Café, David's Garden Centre by Cherry Lane, Ash Lane, Worcester, WR3 8TB
All people with M.E., CFS, FMS, and their carers, friends and relatives, are welcome.  Join us for a bite to eat, or just a cuppa and chat.
• Friday 10 May  
from 12 noon - 3pm, at St Philip's Cathedral Square, Birmingham, B3 2QB
People from Worcestershire are welcome at the Solihull & South Birmingham ME Support Group’s third #MILLIONS MISSING BIRMINGHAM.  Full information from Solihull & South Birmingham ME Support Group and MEACTION.
• Tuesday 14 May
Walsall Fibro & M.E. Link Awareness Evening.  From 7.00 - 9.00 pm.
• Tuesday 21 May
Worcestershire M.E. Social Group Lunch
from 12.30 pm to 2.00 pm, at The Mayfly Restaurant, Cob House Fisheries, Worcester Road, Wichenford, Worcester, WR6 6YE
All people with M.E., CFS, FMS, and their carers, friends and relatives, are welcome.  Join us for a bite to eat, or just a cuppa and chat. 
• Wednesday 29 May
Worcestershire NHS Chronic Fatigue Syndrome/M.E. Service Recovery And Management (RAM) Group.

The ME Association ask -  How will you Go Blue 4 M.E.?, and, explain  ME is REAL! Why ME Awareness Week matters more than ever…

M.E. Research UK tell us about ‘Walk for ME 2019’
The aim of Walk for ME is to get as many people as possible, especially the family and friends of those affected by ME, to do a sponsored walk, run, swim or ride of whatever length they feel comfortable with.  There is no minimum distance, no targets and, although it runs principally through ME Awareness Week (6th to 12th May 2019), no set dates. 

This year, 2019, marks the 27th anniversary of International May 12th Awareness Day.  The International Awareness Day for the spectrum of illnesses called Chronic Immunological and Neurological Diseases (CIND).

ME Awareness Day - The Birthday of Florence Nightingale
M.E. Awareness Week was established by patient advocates and is focused on May 12th, the birthday of Florence Nightingale, who was believed to have suffered with M.E.

You can read the Appropriate ME Treatment Debate transcription in Hansard, watch the full debate on YouTube, and see reports information below.

The #MEAction Network detailed report -
‘Historic Parliamentary Debate Shaped by People with ME’ highlighted that Stephen Pound MP made an especially rousing contribution to the proceedings, declaring that:
“This House recognises the reality of your condition. This House will not sit idly by while you suffer. This House will not ignore you. This House will devote its intelligence and its resources to research, ultimately to resolve and to cure, this terrible condition (…). ME sufferers the world over must know that this House and this nation is finally speaking for you.”

The #MEAction Network told us “Over 40 MPs from across the political divide sat in the House of Commons to debate a motion on myalgic encephalomyelitis (ME), with 27 making impassioned contributions on behalf of their constituents.” and gave us links to all MPs who spoke.

The ME Association’s (MEA) press release highlighted - ‘Parliamentary Debate: Kids being taken into care by medics who refuse to believe ME is real’. 
The MEA press release states - ‘MP Carol Monaghan, who brought today’s motion, led calls for more funding for research and better medical training to help support patients.’  MP Carol Monaghan said - “Leading up to this debate, I have been asked repeatedly what I hope to achieve. Ultimately what I want, and what the ME community wants, is better treatment and care for those with ME.” 
The MEA report includes ‘Comment on the Debate’ by Dr Charles Shepherd, Hon. Medical Adviser, M.E. Association; plus a list of MPs who were present.  Also it draws attention to child protection proceedings, suspension of controversial therapies, improving medical education, and research funding.

Action for ME (AfME) pointed out that they will be working with Forward ME to share the results of its survey for NICE on CBT and GET with MPs, once the report has been published. 

Please share your experiences.  See our blog earlier this month - NICE CBT and GET Patient Survey - Please complete by 31 January. 

ME Research UK (MERUK) gave a summary and commentary on ‘Commons Debate 24 January 2019’.  The MERUK report explained that “regrettably, pressure of time meant that MPs were asked to limit their speeches progressively from 4 to 3 and then to 2 minutes apiece and so much useful comment was probably left unsaid and the opportunity to make specific points lost. Nevertheless, 27 backbench MPs had the opportunity to contribute to this important debate.”

Prior to the debate, MERUK gave a ‘Background to House of Commons Debate’ article, explaining the research situation.  

Have you received or been offered Cognitive Behavioural Therapy (CBT) and/or Graded Exercise Therapy (GET) in the UK since 2007?

The Forward ME group of charities has launched a survey, having been asked by the National Institute of Health and Care Excellence (NICE) to gather evidence and experiences.

ME Research UK (MERUK) CEO, Simon Phillips, welcomed the launch of the survey, adding:
As one of the funders of the CBT and GET Patient Survey and as an active member of the Forward-ME Group, ME Research UK encourages all those who have undertaken or were offered CBT or GET in the UK since 2007 to take this opportunity to contribute before the end of January 2019. This will allow Forward-ME to submit the results to NICE for them to use as part of their review of the current Guideline. We will await the results of Oxford Brookes University’s analysis of the results with keen interest.

The ME Association (MEA) explain the deadline:
The deadline for completing the questionnaire is the 31st January 2019, to meet the very narrow time frame set out by NICE. 
Unfortunately, this also means that Forward ME do not have the time or capacity to send out/accept paper copies. We will make it very clear to NICE when we submit the report that those unable to complete the survey online, including many severely affected people, have not been able to take part.
The survey is however designed to allow a carer, parent or another person to fill it in on behalf of someone else if they are unable to do this themselves.

Join in discussions on social media groups.

Information from the Worcestershire NHS CFS/ME Local Multi-Disciplinary Team (LMDT): Nice guidelines (2007) suggest that the most effective treatments are Cognitive Behavioural Therapy (CBT) to help improve the way you feel about the condition, and Graded Exercise Therapy (GET) to gradually build up exercise tolerance and improve fatigue levels. The principles of these therapies underpin the treatment provided by the Worcestershire CFS/ME Service.

Please sign and forward petition:  “Stop harming ME/CFS patients - take CBT/GET out of NICE guidelines NOW”. 
Expected Publication date by NICE: 14 October 2020.
NICE has promised to review its current guidelines on ME/CFS, which is not scheduled to be completed until October 2020.  Meanwhile it has left the current guidelines in place, despite the recommendations for treatments that are known to be harmful.  

ME/CFS NICE Guideline updates from ME Association (MEA), Action for ME (AfME), Forward ME, and ME Research UK (MERUK).

MEA:  NICE ME/CFS Guideline Review: Publication of revised Scope, comments, and committee appointments | 16 October 2018.

AfME:  NICE publishes final scope for M.E./CFS guideline.
October 16, 2018.  The National Institute for Health and Care Excellence (NICE) has published its final scope for its updated guideline on M.E./CFS, along with consultation comments and committee appointments.

MEA:  Forward ME – Stakeholder deliberations over NICE Scope for ME/CFS | 22 October 2018.

AfME:  NICE guideline scope and committee: update & comment.
October 25, 2018.  
 
MERUK:  NICE ME/CFS Guideline Committee - ME Research UK’s Comment.
Posted on 29 Oct 2018.
ME Research UK joined other charities and those affected by ME/CFS in welcoming the long-awaited review of the NICE Guideline on ME/CFS.  Given the concerns expressed by many about the scope and content of the current Guideline, this review is vitally important and ME Research UK, as a stakeholder, has submitted its views to NICE during its consultation period.
We agree that it is important to listen and understand the views of a range of experts in order to ensure that the revised Guideline provides clarity for everyone who is affected by it - patients and clinicians - but the Guideline must be based on the best available research and the replacement Guideline written with objectivity.
ME Research UK wishes to express its disappointment with the current appointment of a comparatively small number of members of the ME/CFS Guideline Committee who have expertise on the biomedical basis of ME/CFS when compared to those whose background appears to favour the bio psychosocial model. Given the increasing evidence of a biomedical origin of the illness and the current uncertainty, for example, of the soundness of the PACE trial, this is to be regretted. 
We look forward to following the progress of the committee with interest and we hope that the views of those with biomedical expertise are heard and that the revised Guidelines will improve the situation for the many, many thousands of people affected by this illness.

ME Association Statement re: NICE ME/CFS Guideline Review and Committee Appointments | 09 November 2018. 
by Dr Charles Shepherd, Hon. Medical Adviser, ME Association.
The ME Association has always been very clear on the position we take on the current (2007) NICE clinical guideline.
We believe that many of the key recommendations are unfit for purpose - especially those regarding the use of CBT and GET for everyone with mild or moderate ME/CFS.
We have played a key role in persuading NICE that a new guideline is required. The new guideline must recognise that ME/CFS is a serious multisystem disease and not a psychological illness.

NICE news article - NICE announces next steps in updating its guideline on ME/CFS.

A workshop last month with stakeholders marked the formal start of NICE’s collaborative work to update its 2010 guideline on the diagnosis and management of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
 
NICE Guideline - ME/CFS : Diagnosis and Management
A New Guideline is in development, with expected publication date: 14 October 2020.  This Guideline will fully update (CG53)

 
Forward-ME members discussed the NICE Guideline when they met on 10 January, a week before the NICE Guideline Stakeholder Engagement workshop.   Forward-ME is a collaboration of ME/CFS charities - chaired by the Countess of Mar.

 
Reports following the workshop:

• Dr Charles Shepherd, the ME Association’s Medical Adviser summarised the key points;  and the MEA announced the NICE News item - 
• Sue Waddle, Vice Chair of ME Research UK (MERUK) attended the workshop and gave her comments in the MERUK NICE Guideline Report
• Action for M.E.’s report on their involvement at the NICE guideline meeting, and further report -

 
 
Information from the Worcestershire NHS CFS/ME Service website:
Worcestershire Health & Care NHS Trust Extract from ‘Family & Friends Area’ -
Treatments for CFS/ME
Nice guidelines (2007) suggest that the most effective treatments are Cognitive Behavioural Therapy (CBT) to help improve the way you feel about the condition, and Graded Exercise Therapy (GET) to gradually build up exercise tolerance and improve fatigue levels. The principles of these therapies underpin the treatment provided by the Worcestershire CFS/ME Service.

The National Institute for Health and Care Excellence (NICE) announced on 20th September 2017 that it is planning a full update of its guideline on the diagnosis and management of CFS/ME.

• ME Association: Breaking News: NICE decides to Fully Update its guideline on ME/CFS!
• Action for M.E.: NICE guidelines on CFS/M.E. to be reviewed
• ME Research UK: NICE CFS/ME guideline to be updated
  
• NICE announcement
  
• NICE Guideline: Clinical guideline [CG53]
  
• The Times: Mutiny by ME sufferers forces a climbdown on exercise treatment | 25 September 2017

1/2016
Walking & Co-ordination Problems are explained by ME Research UK (MERUK)
MERUK state “these aspects of everyday living are rarely discussed in the modern literature but may well have clinical or diagnostic value and should not be ignored by medicine today”.