APPG Report: Inform your MP about the key issues relating to ME/CFS!.
The ME Association (MEA).  This is the official report from the All Party Parliamentary Group (APPG) on ME that contains key recommendations aimed at increasing research investment and discovery, improving health and social care, and enhancing the lives of people with ME/CFS. It was launched at an official reception with the Rt. Hon. Sajid Javid in May 2022.
 
Last year, the All-Party Parliamentary Group (APPG) on Myalgic Encephalomyelitis (ME) launched an important report - Rethinking ME- and this highlighted vital recommendations to help people with ME receive good quality health and social care. These included the implementation of the 2021 NICE Clinical Guideline on ME/CFS and creating strategies to transform the approach towards ME in health, welfare, social care, research, and education. 
 
Members of the APPG on ME, the former Health Secretary Sajid Javid, and Nicki Strong (Trustee) of the ME Association attended the report’s launch at the Houses of Parliament in May.  The ME Association understands the importance of this report and we believe it will help to shape the future for people with ME and their families.  
 
The Rethinking ME 37 page report is available to download from the MEA’s website.  Plus also available is a template letter to help you write to your local MP .
 
 
Previous ‘Rethinking ME’ Information
 
Sajid Javid ‘Rethinking ME’ after young relative’s battles
1/6/2022
The Times:  Sajid Javid ‘Rethinking ME’ after young relative’s battles. 
A report by the All-Party Parliamentary Group on Myalgic Encephalomyelitis.
 
"Rethinking ME" at APPG on ME meeting, Wednesday 25 May
19/5/2022
Remind your MP to attend the launch of "Rethinking ME" with Sajid Javid, MP for Bromsgrove, and Health and Social Care Secretary.
 
 
 The new Myalgic encephalomyelitis (or encephalopathy)/ chronic fatigue syndrome: diagnosis and management. NICE guideline [NG206] was published in October 2021.  See from our website -
 
NICE ME/CFS: new Guideline (New downloadable Publications).
19/1/2022
 
NICE ME/CFS: new Guideline (Reactions).
25/11/2021
 
NICE ME/CFS: new Guideline now Published
29/10/2021


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Remind your MP to attend the launch of "Rethinking ME" with Sajid Javid, MP for Bromsgrove, and Health and Social Care Secretary.
 
Action for ME (AfME) announced -
APPG on M.E. to launch new report, Rethinking M.E.
May 13, 2022
The All-Party Parliamentary Group (APPG) on M.E. have announced a meeting on Wednesday 25 May to launch their first report, Rethinking M.E.  Carol Monaghan MP, Chair of the APPG, says: 
"At this event, we will reflect on the progress being made to improve recognition and understanding of M.E. amongst the medical profession and other relevant professions. We will also hear directly from people M.E. on their desire for better care and support."
All Westminster MPs (and some members of the House of Lords) have been invited by Carol Monaghan MP to come to this meeting, and people with M.E. are welcome to encourage their MP to attend.
 
 
At the end of April our Worcestershire Social Group Blog announced - Decommissioned - ME/CFS Service at Worcestershire Acute Hospital .  If this has affected you, or you have any other concerns, this is your opportunity to let your MP know?
 
 
Announcements from the MEA (ME Association) -
 
All-Party Parliamentary Group on ME to launch report: 'Rethinking ME'
May 13, 2022
 
ME Awareness Day Early Day Motion from Carol Monaghan, MP
May 13, 2022
 
Remind your MP to attend the launch of "Rethinking ME"
May 17, 2022
The APPG Report “Rethinking ME” will be launched at an auspicious event at the House of Commons on May 25th. It will cover key issues of concern - research, management, NHS services, benefits, children, severe ME/CFS etc. - and will make a number of recommendations concerning action that needs to be taken to improve the lives of people with this condition.
 “At this reception, we will reflect on the progress being made to improve recognition and understanding of ME amongst the medical profession and other relevant professions. We will hear directly from people ME on their desire for better care and support, and the Secretary of State for Health and Social Care, the Rt Hon Sajid Javid MP, will deliver keynote remarks.”
Carol Monaghan, MP, Chair of the APPG on ME.
 
Invitations have already been sent to all MPs and members of the House of Lords, but you can also remind your MP about the importance of this event, by sending an email using the template below (which can be suitably amended or added to if you wish to do so).
You may want to add a short note relating to a personal, local, or national issue of concern. This might include a diagnostic delay, a DWP benefits problem, issues faced by children, or by people severely or very severely affected, lack of a local ME/CFS specialist service, or the need for biomedical research - all of which are covered in the APPG Report.
 
 
All-Party Parliamentary Group on ME launch official website
May 18, 2022
The All-Party Parliamentary Group (APPG) on Myalgic Encephalomyelitis (ME) has today launched its official website.  The APPG is a cross-party voice in Westminster building change for people with ME with Carol Monaghan MP serving as Chair.
Secretariat - The secretariat for the APPG on ME is jointly undertaken by Action for M.E. and The ME Association
 
 
The Worcestershire M.E. Social Group’s website gives links to Social Media sites which maybe helpful to many people to discuss situations, or just to look and read other people’s postings.

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Please encourage your local MP to join the next APPG (All Party Parliamentary Group) on ME (Myalgic Encephalomyelitis) meeting.
 
The ME Association announced -
Invite your MP to the Next Meeting of The APPG on M.E.
March 16, 2022
 
The next meeting of the All-Party Parliamentary Group (APPG) on M.E. will be the Annual General Meeting on Tuesday 29 March 10:00 - 10:30.  We'd be really grateful if you could invite your MP to attend.  It will be a Zoom meeting and your MP can get further information by emailing Carol Monaghan, MP (Chair of the APPG on M.E.).
In addition to reconstituting the APPG, the AGM will include a discussion on our work plan for the next year in relation to the APPG purpose: to seek to improve health, social care, education, and employment opportunities for M.E. sufferers and encourage biomedical research into the cause and treatment of M.E. 
Action for M.E. and The ME Association have agreed to take on the secretariat responsibility for the APPG and will be working to ensure future minutes and announcements are published promptly.
 
See the ME Association, and Action for ME for suggestions how to approach your local MP.
 
 
A reminder -
NICE ME/CFS Guideline Online Talk - 24 March, 2.00 pm
23/2/2022
ONLINE TALK with Dr Charles Shepherd: Making the new NICE guideline work for people with ME.


•  Action for ME  •  A.P.P.G  •  M.E. Association 
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lease encourage your local MP to join the next APPG (All Party Parliamentary Group) on ME (Myalgic Encephalomyelitis) meeting.
 
The ME Association announced -
Next meeting of the All Party Parliamentary Group on ME - the new NICE guideline.
November 11, 2021
 
The next meeting of the All-Party Parliamentary Group on Myalgic Encephalomyelitis (APPG on ME) will take place from 2 - 3 pm on 24 November 2021.  This meeting will focus on the new National Institute for Health and Care Excellence (NICE) guideline on ME and the future of ME medical care. 
Three expert guest speakers will address the APPG and answer questions:
Dr Paul Chrisp, Director of the NICE Centre for Guidelines
Dr Peter Barry, Chair of the NICE ME/CFS Guideline Committee
Sonya Chowdhury, Chief Executive of Action for ME
 
This meeting will be an excellent opportunity for MPs and Peers to discuss the new NICE guideline which is expected to be transformational for ME patients across the UK due to the removal of support for damaging treatments such as graded exercise therapy (GET).
Discussion points for the meeting will include the guideline review process, the delay to the release of the guideline, the recommendations of the new guideline, and next steps for guideline implementation.
The overall aim of the meeting will be to raise awareness amongst MPs and Peers of the issues facing people with ME in the UK, in line with the APPG purpose which is to seek to improve health, social care, education and employment opportunities for ME sufferers and encourage biomedical research into the cause and treatment of ME.
If an MP or peer wishes to attend, they can contact Carol Monaghan MP, Chair of the APPG on ME, by email at carol.monaghan.mp@parliament.uk.
Carol Monaghan will be able to provide further information on the meeting and zoom details.
 
Dr Charles Shepherd, Hon Medical Adviser MEA, states -
This APPG meeting provides an excellent opportunity for people to contact their Westminster MP about any issue relating to the new NICE guideline that they would like to see their MP raise.
In particular, you may wish your MP to raise the local situation regarding implementation of the new guideline recommendations at your local hospital or community based referral service/clinic - if there is one.
 
The Worcestershire ME Social Group website contains NHS ME/CFS Specialist Services (Worcestershire) information.
 
See our Worcestershire blogs for NICE Guideline, and previous APPG on ME news.
 
Take care, and stay safe everyone.

•  Action for ME  •  A.P.P.G  •  M.E. Association  •  MP  •  N.I.C.E.  
•  Parliament U.K.  •  Worcestershire M.E. Social Group

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

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

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

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

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

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

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Early Day Motion on the Retirement of Countess of Mar as Chair of Forward-ME.  Please support our Worcestershire Countess, by encouraging your MP to sign the EDM. 
 
The ME Association (MEA) announced -
Carol Monaghan MP (Chair of the All-Party Parliamentary Group on ME and Deputy Chair of Forward-ME) has tabled an early day motion to mark the retirement of the Countess of Mar from her role as founding Chair of Forward ME.  Lady Mar will continue in her role as patron of the ME Association.

• EDM 90 Notice and Text
• MEA statement about the Countesses retirement from Forward-ME
• Forward-ME Website

 
EDM (Early Day Motion) 90:  Retirement of the Countess of Mar as Chair of Forward-ME.
Motion Text: That this House:

• Marks the retirement of the Countess of Mar as the Founding Chair of Forward-ME,
• Congratulates her on the success of Forward-ME which was established in 2008 to promote effective joint working between charities and organisations in order to maximise impact on behalf of people with Myalgic Encephalomyelitis (ME),
• Acknowledges the far-reaching impact she has had in supporting, representing, and championing people with ME,
• Recognises her work improving medical education and promoting biomedical research,
• Notes her parliamentary advocacy which included leading a landmark House of Lords’ debate on the PACE trial,
• Commends the part she played in securing improvements to the National Institute for Health and Care draft revised guidance on ME,
• Sincerely thanks her for her years of dedicated service to the ME patient community; and wishes the Countess of Mar the very best in her retirement.

 
In April the MEA announced  -
Margaret Mar Retires as Chair of Forward-ME -
Forward-ME is undergoing a reorganisation and considering how it would best serve the patient community in the future. After many years of dedicated service, the Countess of Mar is stepping down and will be replaced by Andrew Morris as Chair.
 
The Forward-ME website contains a personal letter from Margaret Mar, which includes an introduction to Andrew Morris, the new Forward-ME Chair.
Stepping Aside.
It is nearly 13 years since Forward-ME was founded with a core group of nine ME charities and support groups.  We now have more than 17 charities and associate members.  The whole scenario has changed considerably since those early days.  Despair has gradually turned to hope.  There is more public understanding of ME and, with a few notable exceptions, the professions are exhibiting more appreciation of the complexities of the disease.  The rewriting of the NICE Guideline for ME/CFS is eagerly anticipated despite the repeated deferrals of the publication date.  Thanks to the work of the UK CFS/ME Research Collaborative, the grant of more than £3 million for a large genomic study of people with ME is under way. 
From a personal point of view, I have been rewarded by the determination of all Forward-ME members to set aside their differences and to work together to achieve the objectives we agreed upon at our first meeting.  We still have some way to go, but the foundations have been laid for our continued cooperation.  I realise that what is needed for our future is a different approach to our relationships with people outside our small community.  Instead of the ad hoc basis I have worked under, an efficient system of management would significantly enhance our impact.  Good fortune has sent us just the right person in Andrew Morris who has all the skills and experience we need.  Additionally, he has a daughter with ME and the determination to improve the world for people with ME.  As you will see from the minutes of our meeting on 16 March 2021, he has given the matter much thought and has now said that he is willing to take over from me as Chairman.  I will still be around for a while, as it is intended that the changeover should be smooth and it may take a while for Andrew to find his way around.  We will work in tandem until I am no longer needed. He is at the front!
It only remains for me to thank everyone with whom I have been involved over 25 years of working with people with ME, particularly members of Forward-ME, for inspiring me, to wish you well and to remind you all that Unity is Strength!
Margaret Mar
8 April 2021
 
Last year: ME Research UK (MERUK) -
The Countess of Mar - an Appreciation.
The MERUK Appreciation includes -
From 1st May 2020, when the Countess of Mar retires officially from the House of Lords after almost 45 years’ service, the ME community will be losing a champion of the first rank and a redoubtable campaigner for acceptance of the illness, for research and for the proper treatment from government and the NHS of those affected by ME.
Her zeal for a revolution in the perception and treatment of ME/CFS stemmed from her own experience of organophosphate poisoning which led to autonomic dysfunction. Concern turned to action and she was a member of several European Community Select Committees – on the environment, agriculture and consumer protection, and secretary of the All-Party Parliamentary Group on Pesticides and Organophosphates and a leading light and vice-chair of the All-Party Parliamentary Group on ME.
In the House, Hansard records 36 instances of the Countess speaking to the Chamber specifically about ME/CFS (since such records were indexed from 2006). This does not include contributions to debates regarding neurological conditions or concerning those affected my long-term chronic illnesses in general.  The contributions run the full gamut of issues which affect the ME community -  social security, personal independence payments, work capability assessments, children and young persons, as well research. Her comments on the PACE trial (6 February 2013), CBT (18 March 2013), and neurological conditions (11 October 2010) are especially noteworthy and informed, and reward a re-visit.
 
 
Take care, and stay safe everyone.


•  A.P.P.G  •  Forward ME  •  M.E. Association  •  MERUK 
•  MP   •  Parliament U.K. 

Please encourage your local MP to join the next APPG (All Party Parliamentary Group) on ME meeting.
 
The ME Association announced -
APPG on ME: Annual General Meeting and the impact of COVID-19 on people with ME/CFS. 
The Annual General Meeting of the All-Party Parliamentary Group on Myalgic Encephalomyelitis (ME) will take place on Monday 19 April between 11:00 - 12:00. 
Your MP should RSVP to carol.monaghan.mp@parliament.uk if they are hoping to attend this meeting so they can obtain the zoom link.
 
From the MEA article -
In addition to AGM business, this meeting will focus on the impact of the COVID-19 pandemic on the ME community. 
Points of discussion will include the clinical and pathological overlaps between ME and Long Covid, the COVID-19 vaccination programme and JCVI guidance for ME patient prioritisation, and the general challenges facing the ME community at this difficult time.  
At this stage two guest speakers are confirmed who will share their expertise through short presentations and a Q&A discussion: 

1. Dr David Strain, a Senior Clinical Lecturer at the University of Exeter Medical School and Honorary Consultant in medicine for the older adult who is heavily involved in the British Medical Association COVID response team.
2. Dr Nina Muirhead, a Buckinghamshire Healthcare NHS Trust Dermatologist who is actively working to deliver better education for healthcare professionals on the topic of ME.

Background Information relating to the overlap between Long Covid and ME/CFS:
The overlap between ME/CFS and Long covid from a British Medical Association publication, including contributions from Dr David Strain, Dr Nina Muirhead, Dr Charles Shepherd and Dr Amy Small can be read here.

• Article in Pharma Technology Focus
• Dr David Strain talking on the BBC Horizon programme on Long Covid.

 
For local Covid-19 advice and guidance, see the Worcestershire County Council news items, and for Covid-19 information specifically for people affected by ME/CFS see further posts on the blog.

Take care, and stay safe everyone.

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The ME Association (MEA) reported -
Parliamentary debate on Long-Covid:  What should be learned from ME/CFS?
The MEA’s announcement details the contribution from Carol Monaghan, MP - who chairs the All-Party Parliamentary Group (APPG) on M.E. - to the debate on Long Covid that was made in the House of Commons.  Hansard Transcript: Long Covid Volume 687: debated on Thursday 14 January 2021
The MEA has a full range of free leaflets relating to Covid-19, Long-Covid and ME/CFS. We have recently included a new leaflet about the Covid vaccine and ME/CFS. Leaflets can be downloaded from the website shop.
 
Action for M.E. publicised the debate -
M.E. referenced in House of Commons Long Covid debate.
A Long Covid debate was held yesterday in the House of Commons during which MPs highlighted M.E. and called for lessons to be learned from the illness when treating Long Covid patients.
We’ve summarised some key points from the debate below:

• Layla Moran MP highlighted that there are an estimated 300,000 people in the UK experiencing Long-Covid. She called for better reporting, more funding for research and recognition by employers and the welfare system.
• Carol Monaghan MP, Chair of the APPG for M.E./CFS, spoke about the similarities Long Covid has with M.E./CFS. She welcomed the caution against graded exercise therapy but noted issues with the National Institute for Health and Care Excellence (NICE) Guideline for Long Covid.
• Andrew Gwynne MP shared his experience of Long Covid and the exhaustion, dizziness and brain fog he experienced. He stated that he had to pace himself with over exertion making his symptoms worse.
• Debbie Abrahams MP said that she was hopeful that we would learn from the mistake made in how we provide care and treat people with M.E./CFS.
• Other MPs highlighted research that suggests 21% of those who get Covid will develop Long Covid. Attention was also given to children developing Long Covid and they called for greater information given to schools.
• Jo Gideon MP explained that the symptom brain fog causes a lack of clarity, inability to focus and poor concentration levels. She stated that some people find getting fresh air and going for walks help to relieve this. Action for M.E. will be writing to Ms Gideon to highlight the dangers of overexertion and that people suffering a post-viral illness must not push himself or herself to do more than they are able.
• Dr Rosena Allin-Khan MP, Shadow Health Minister, paid tribute to online support groups who are campaigning to raise awareness of Long-Covid. She said the symptoms could be severe and debilitating with many unable to return to work. Long-Covid patients are being denied referral and she called on the Government to ensure people do not miss out on the care and support they need.

In responding to the debate, the Health Minister Nadine Dorries MP, said that the Government has a five-point plan to deal with Long Covid. The NICE Guideline, which was published in December, describe common symptoms and the support they should receive. You can read about Action for M.E.’s response to this guideline on our Long Covid page. The Minister also referred to the research undertaken into the condition.
Many people with M.E./CFS will feel a sense of familiarity when reading this summary. They have experienced the injustice and neglect referenced throughout the debate without the recognition or attention that Long Covid is getting. We are pleased that some MPs reflected on the similarities with M.E./CFS and that M.E./CFS is being mentioned in the House of Commons. Nevertheless, without greater care many of those experiencing Long Covid could become even more ill if lessons are not learned from M.E./CFS.
 
Action for M.E. highlights the
NICE rapid response guideline on Long Covid. 
NICE has published its COVID-19 rapid guideline: managing the long-term effects of COVID-19.
Developed jointly by NICE, the Scottish Intercollegiate Guidelines Network and the Royal College of General Practitioners, it “makes recommendations about care in all healthcare settings for adults, children and young people who have new or ongoing symptoms 4 weeks or more after the start of acute COVID-19. It also includes advice on organising services for long COVID.”  Along with other stakeholders, Action for M.E. submitted a written response to the consultation on this guideline, which ran from Friday 23 to Tuesday 27 October. You can read more on our Long Covid page.
We are concerned to see no mention of the likelihood of developing M.E./CFS following Long Covid, despite the fact that there is clear evidence that many people with M.E./CFS developed it following viral infection.  Those who experience M.E./CFS symptoms need specific care and management, such as pacing. If those experiencing post-exertional malaise, a hallmark symptom of M.E./CFS, are treated following this guideline, they may experience a worsening of symptoms.  As this guideline claims to be a living document, we would expect there to be a further consultation and review in due course. Action for M.E. is working with another organisation to ensure patient voices are heard, and will share more about our work on this in the New Year.
 
ME Association slams lack of recognition for ME/CFS in new guideline on Long Covid. MEA stakeholder response to the NICE guideline on the management of Long COVID, which is published today.
It is surprising and disappointing to find that the draft guideline: 
(1) Has no recognition that some of the common underlying clusters of symptoms being reported in people with Long/Post COVID are exactly the same as those found in people with a post viral fatigue syndrome (PVFS) or ME/CFS. 
The key overlapping symptoms include:  activity-induced fatigue;  myalgia;  cognitive dysfunction/’brain fog’;  dysautonomia – involving orthostatic intolerance,  postural orthostatic tachycardia, postural hypotension;  headache;  problems with thermoregulation unrefreshing sleep patterns and post exertional malaise/symptom exacerbation.  
It would be very surprising if this was not the case given the fact that any type of viral infection can trigger a post viral fatigue syndrome and research carried out following previous coronavirus infections has reported that 10% or more of those infected go on to develop a PVFS or an ME/CFS like illness.
(2) Contains almost no information on the pragmatic management of the symptoms that are being commonly reported - activity and energy management in particular.  This is also very surprising when a new draft guidance from NICE on the management of ME/CFS has just been published for stakeholder consultation.  This guidance contains detailed recommendations on the sort of energy and activity management that is applicable to people with a post viral fatigue syndrome (regardless of triggering infection) and ME/CFS in both the pre diagnosis and post diagnosis stages.  
 
There have been many Long Covid media articles, including recently -
 
On 21 January, the Guardian publicised -
We're about to see a wave of long Covid. When will ministers take it seriously?
The NHS must learn from its mistakes with other post-viral conditions such as ME/CFS – more research is vital.
Long Covid is shorthand for a range of conditions. Some scientists divide them into three broad categories, others into four. Of these, one seems to ring a bell. It’s a cluster of symptoms that bear a strong similarity to myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS). This is a devastating condition that affects roughly a quarter of a million people in the UK, and is often caused, like long Covid, by viral infection.
Among the common symptoms of ME/CFS are extreme fatigue that is not relieved by rest, and “post-exertional malaise”: even mild physical or mental effort can make patients extremely unwell. Many sufferers are confined to their home or even their bed, with their working life, social life and family life truncated. There is, so far, no diagnostic test and no cure. A study published in the journal Plos One found that, of the 20 conditions it assessed, including lung cancer, stroke, MS and schizophrenia, patients with ME/CFS reported the lowest health-related quality of life.

On 15 January, the Sun reported -
Our kids were left unable to eat or walk by Long Covid and treatment was ‘torture’- but docs don’t know how to help
Doctor's plea for compassion
Paediatrician Dr Nigel Speight is an expert in child Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS).  He sees parallels between Long Covid and ME/CFS -  also a post-viral condition which is possibly triggered by the body’s immune response.
Dr Speight said: “For many years, children and adults with ME have been subjected to disbelief by the medical profession.  The same thing might be beginning to happen with Long Covid children.
“The medical profession would be sensible to accept Long Covid as a post-viral, ME-like illness, and treat it open mindedly, believe in it, and be supportive.  Doctors don’t have too much to offer these children in terms of a cure, so the least they can do is support and protect them.”
 
 
For further Coronavirus (Covid-19) information specifically for people affected by ME/CFS see further posts on the blog.
 
Take care, and stay safe everyone.


•  Action for ME  •  Coronavirus (COVID 19)  •  M.E. Association 
•  MP  •  National Newspapers  •  N.I.C.E. •  Parliament U.K. 

On Tuesday of next week MPs will be discussing diagnosis and management and the new draft of the NICE Guideline on ME/CFS.

Encourage your MP to attend this virtual meeting on behalf of their constituents.
The meeting will take place via Zoom from 9.30 to 10.30 am on Tuesday 17 November.
The ME Association and Action for ME have articles giving full details
Please email your own MP and ask that they attend this important meeting.  Please ask your MP to contact the APPG on ME Chair, Carol Monaghan MP for details on how to join.  Contact details for all Worcestershire MPs. 
Information about previous APPG on ME meetings this year are available in our blogs.  

•  Action for ME  •  A.P.P.G  •  M.E. Association  •  MP  •  N.I.C.E. •  Parliament U.K. 

Warnings from Worcestershire MPs and Worcestershire’s Director for Public Health.

Followed by New National Restrictions from 5 November.
The Government website gives full information on the new national restrictions, including what they mean for working from home and business closures, why they are being introduced and the financial support available.  The new measures will apply nationally for four weeks up to Wednesday 2 December.  At the end of the period, we will look to return to a regional approach, based on the latest data.
 
‘UK lockdown update: Boris Johnson announces month-long lockdown for England. This evening, Saturday 31 October, the Worcester News put together a round-up of everything you need to know.
 
Today’s announcement, followed three Worcester News articles yesterday.  On 30 October, the same day that the Worcester News published a warning from Bromsgrove and Redditch MPs  , and a plea from the Worcestershire’s Public Health director the Worcester News also announced that a second national lockdown is being considered for England next week.
 
Boris Johnson 'considering' second national lockdown for England next week.
The Worcester News article states that Prime Minister Boris Johnson is reportedly set to place England under stringent national lockdown restrictions next week.  The article gives detailed explanations on new data published on Friday.
 
Keep it local, limit your contacts and help keep Worcestershire at tier one.
Worcestershire County Council gives the plea from Dr. Kathryn Cobain, Director for Public Health in Worcestershire - “ Worcestershire does not want to face tougher restrictions. You can help prevent that, by staying local and really reducing who you mix with.  Cut down the number of contacts you have with people, keep your distance from others and remember to wash your hands and wear face coverings.  If you reduce where you go, consider who you are travelling with, who you mix with, stick to the rule of 6 and follow these rules, we will see the spread of Covid-19 reducing.  If we lower the numbers of cases, we reduce the risk of us being put into tier two measures.  Further restrictions will impact our lives, our businesses and our economy, if we want to stay at tier one, then we have to stick to the rules now more than ever. “
Also from the Worcestershire County Council -
Website: Prime Minister announces new local COVID Alert Levels 12 October 2020 (opens in a new window).
 
The Worcester News’ warning from Bromsgrove and Redditch MPs - Worcestershire MPs Sajid Javid and Rachel Maclean warn of tougher Covid restrictions.
Two county MPs have warned their constituents they could face tougher coronavirus restrictions if infection rates continue to rise.  Bromsgrove MP Sajid Javid and Redditch MP Rachel Maclean both warned residents a move to tier two restrictions may become inevitable unless action is taken.
Mr Javid tweeted: “The high COVID-19 infection rate in the Bromsgrove district means that further restrictions may be introduced.  “No one wants to see that happen. Let’s work together to keep this virus under control. Please remember to wash your hands, wear a face covering and make space.”
Mrs Maclean echoed Mr Javid, tweeting her own response, which said: “Sajid Javid is right and the same applies to Redditch.  “If the infection rate continues to rise here, then discussions over Tier 2 restrictions will become inevitable. Let’s avoid this situation by continuing to follow the rules to get that infection rate down.”
The warnings come amid fast-increasing coronavirus infection rates across Worcestershire.  Every part of the county has seen its infection rate rise this week with Bromsgrove remaining the highest.  We have previously reported how rising infection rates across Worcestershire could see the county moved into tier two "high".  In this tier, you must not meet socially with friends and family indoors in any setting unless you live with them or have formed a support bubble with them. This includes private homes, and any other indoor venues such as pubs and restaurants.
The next tier up, "very high" sees the same restriction on indoor meetings, but with a ban on mixing in most outdoor settings.  Shops, schools and workplaces will remain open even in this case.
 
Worried public health boss pleads with Worcester to follow Covid rules as infection rate surges.
The Worcester News give the plea from Worcestershire’s Public Health director Dr. Kathryn Cobain.
Concerned health bosses have asked the city to follow social distancing guidelines to stop a worrying rise in the infection rate.   Worcestershire’s Public Health director Dr. Kathryn Cobain said she was “really concerned” by the rising infection rate in Worcester as it was clear people were not socially distancing.  Latest figures show the infection rate in Worcester has risen by nearly 70 per cent in the last week and is now at 154 per 100,000 people.
“I am really concerned to see the rising infection rate in Worcester,” said Dr Cobain. “This is a clear indication that people are not social distancing and following the rules which can help prevent the virus spreading.  I am appealing to everyone in the city, it is in your hands to help us stop the virus spreading. The figures show that the virus is spreading rapidly. Everyone needs to think about how you are going about your daily lives; washing your hands regularly, and wearing face coverings where it is compulsory to do so and keeping at a social distance.
“The virus only moves around because we mix and socialise. This is how it spreads. It is really imperative that we break the chains of transmission, and continue to follow the guidance.
“You can reduce your own risk to the virus and protect those you love, by following the rules and keeping Covid-19 under control.”  Dr Cobain said a high number of cases were being transmitted within households and following the rules, such as the Rule of Six, would prevent many new cases.
Councillor Marc Bayliss, leader of Worcester City Council, said: “None of us want to see Worcester move to Tier Two.  “It will mean we all have to see less of our friends and family, and it would have an impact on our local businesses and economy.   “Please play your part in keeping us in Tier One by following the rules in every aspect of your daily lives - wash your hands regularly, wear a mask whenever it’s required and keep your distance.  “Together, we can reduce the spread of the virus.”

Further Coronavirus (Covid-19) information specifically for people affected by ME/CFS.
 
The ME Association’s (MEA) recent Covid-19 leaflets and letters are all available to download,

• 12 page Covid-19 and ME/CFS Weekly Update -
• 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.
• 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.
• MEA statement, signed by Dr Charles Shepherd, in Letter: Asserting your vulnerable status.
• 4 page MEA detailed leaflet on Benefits - Your Benefits during the Coronavirus Crisis. 
• MEA Employment Guidance: Key points on Employment, ME/CFS and the Coronavirus.  
• 24 page leaflet on Post Covid-19 Fatigue;  Post/Long Covid-19 Syndromes;  Post-Covid ME/CFS  The ME Association Guide to Post-Covid Fatigue Syndromes and Post-Covid ME/CFS.

A few of the many recent news articles concerning Long Covid-19 specifically for people affected by ME/CFS.
 
Scottish Government Issue Caution Notice for Graded Exercise Therapy in ME/CFS & Post/Long-Covid
The MEA announce that the Scottish Health Department has posted an interim statement advising caution over the suitability of Graded Exercise Therapy (GET) in treating ME/CFS and has reiterated the earlier statement from NICE cautioning against use of GET in Post/Long-Covid.
 
News & Comment: The Long-Covid Crisis and £10 million on NHS Specialist Clinics for Post-Covid Sufferers.
The MEA’s article following the Government announcement that NHS England was to invest £10million in a network of clinic across England to help support people who have been unable to recover from Covid-19 infection.
 
Long COVID: let patients help define long-lasting COVID symptoms.
The terminology for long-lasting COVID symptoms - and the definition of recovery- must incorporate patients’ perspectives.
The Nature article explains -  In deciding how to act on long COVID, researchers and policymakers must take heed of what happened in the case of myalgic encephalomyelitis, also called chronic fatigue syndrome (ME/CFS).. The condition shares some of the symptoms of long COVID, and people with ME/CFS struggled for many years to be recognized as having a serious and debilitating medical condition that needed specialized treatment and research.
 
Extract from: "The Long Hauler Tragedy: More Frightening than Halloween Nightmares" by Leonard Jason and Vernita Perkins.
"For the past 30 years, still another group has suffered from the trauma of an illness and then society’s reaction to their disability.  The illness is chronic fatigue syndrome.  These patients, who prefer the less-stigmatizing term myalgic encephalomyelitis, have a very similar predicament to many COVID long-haulers.  Because most primary care physicians are unable to detect any biological abnormalities, patients with myalgic encephalomyelitis are often considered to suffer
from depression, and health care workers often prescribe anti-depressants and a recommendation to work out a few times a week, in order to overcome their illness.  Such treatments are often effective when a person has a primary depressive symptom, but when a person with myalgic encephalomyelitis, who already suffers extreme fatigue and post-exertional malaise is encouraged to engage in formal exercise, a relapse is very likely.  With primary care professionals expecting a quick resolution of their illness, and many work associates and family members subscribing to this false rendition of their illness, it is not too surprising that almost all patients feel demoralized, not depressed."
 
Virginia Water Magazine: Why aren’t people getting better from Covid-19? With Dr Charles Shepherd.
Why aren’t people getting better from COVID-19?  The article explains that Dr Charles Shepherd Medical Adviser to the ME Association, discuss with the editor of the Virginia Water magazine.
 
Four young women talk to ‘Cosmopolitan’ about their Long Covid (and Dr Charles joins in).
The MEA cover this story from the Cosmopolitan.  Four young women talked to ‘Cosmopolitan’ this week about their battles with Long Covid - months after going down with what they thought was a mild form of the virus.
 
 
For further Coronavirus (Covid-19) information specifically for people affected by ME/CFS see further posts on the blog.
 
Take care, and stay safe everyone.