Final Delivery Plan on ME/CFS published by Dept of Health & Social Care (DHSC) on 22 July 2025.
Sir Sajid Javid (MP for Bromsgrove from 2010 to 2024), as Secretary of State for Health and Social Care, announced the development of the National Delivery Plan on ME/CFS  for England when he lead a Westminster Hall debate in the Houses of Parliament on Wednesday 1 May 2024.
 
Channel 4 News’ report  ME Delivery Plan: will it make a difference?,
 
After years in the making and numerous delays, the government has finally set out a plan in England to help people with ME, a neurological disease with various debilitating symptoms, which affects over 400,000 people in the UK.
Many patients feel like they’ve been ignored, dismissed and stigmatised for too long and that this plan might finally be a formal recognition of this. But with little funding allocated, does the plan go far enough?
 
This report included a comment from Sir Sajid Javid:
The Delivery Plan was first commissioned back in 2022 by the Health Secretary at the time, Sajid Javid, who had a mixed reaction to today’s announcement:
“It’s certainly raising awareness but there’s no dedicated ring-fenced funding,” he told Channel 4 News.
 
The government told us that although no additional funding is explicitly attached to the delivery plan, that doesn’t mean funding won’t be secured in future spending reviews or that those with ME won’t benefit from investment in other health and care initiatives.
So little in the way of funding, but something in the way of recognition.
 
Reaction
The reaction to the plan so far from advocacy groups has ranged from disappointed, to woefully inadequate.  And for a group of people that have felt unheard for so long, warm words of recognition may feel like scant comfort.
The Minister for Public Health and Prevention, Ashley Dalton, said:
“Today’s plan will help tackle the stigma and lack of awareness of this condition through improved training for NHS staff. We will ensure patients suffering from the effects of ME/CFS can access quality care, closer to home, as pledged in our 10 Year Health Plan.”
 
 
ME Research UK’s announcement following the Delivery Plan publication
Delivery Plan for ME/CFS Published 
22 July 2025
UK government on 22nd July 2025, a few days before parliament rises for the summer recess has published its Delivery Plan for ME/CFS. The 3 plus year process covering research, living with ME/CFS and attitudes and education.
 
In the Press Release unfortunately entitled ‘Boost in support for patients with chronic fatigue syndrome or ME’ the government lays out its views and actions as it aims to ‘Better care for patients living with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome, with plans to invest in research and offer closer to home.’
 
As the Release states (edited) -
The government has committed to changing attitudes and transforming care for patients with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/ CFS).
The condition affects approximately 390,000 people in the UK, causing debilitating fatigue, sleep problems and difficulties with thinking, concentration and memory. The impact of this condition varies between cases, but severe ME/CFS, which is thought to affect a quarter of those diagnosed, leave patients housebound or unable to work.
The plan published today provides the foundations for significant improvements in all key areas that affect people living with ME/CFS in England, many of whom currently struggle to access appropriate care tailored to their complex condition.
 
As a priority, the plan will introduce new training for NHS healthcare professionals, featuring up-to-date learning resources to increase understand and ensure signs aren’t missed. This will help combat the stigma faced by people living with ME/CFS, which stems from a lack of awareness about the condition.
The rollout of neighbourhood health services as set out in the government’s 10 Year Health Plan will also see ME/CFS patients able to access care closer to home, with specially-trained staff able to support those with complex needs.
 
Minister for Public Health and Prevention, Ashley Dalton, said:  
ME/CFS is a debilitating illness that can severely limit patients’ ability to participate in everyday activities, maintain employment, or enjoy family and social life.  
Today’s plan will help tackle the stigma and lack of awareness of this condition through improved training for NHS staff.
And through our neighbourhood health services, we will ensure patients suffering from the effects of ME/CFS can access quality care, closer to home, as pledged in our 10 Year Health Plan.
Our Plan for Change is transforming how patients experience care and this plan represents a comprehensive approach to addressing the long-standing gaps in care and support for people with these conditions, with patient access to appropriate care at its heart.
 
The plan includes increased funding for research, awarded through the National Institute for Health and Care Research, into how existing medicines can be used to for ME/CFS. This initiative aims to give patients access to a wider range of potential treatments.
It will also address the specific needs of children and young people, ensuring they receive appropriate and timely support in education settings.  
Recognising that ME/CFS affects people’s ability to work, the plan includes wider government initiatives to address issues with benefit assessment processes and provide support to help patients with long-term conditions and disabilities find and maintain meaningful employment where possible.  
Offering care closer to home forms part of the government’s 10 Year Health Plan to rebuild the NHS, putting patients’ needs first and delivering effective, accessible treatment. 
The government will continue to work with stakeholders and build on the foundations of actions in the Final Delivery Plan well beyond its publication, reaffirming our commitment to ongoing development and improvement. This all forms part of the government’s Plan for Change to build an NHS fit for the future and one which offers the highest-quality, personalised care.
 
Ministerial letter
To coincide with the press release, Ashley Dalton MP, Parliamentary Under-Secretary of State for Public Health and Prevention, issued a letter which acknowledged that “People living with ME/CFS often face stigma and misunderstanding, stemming from a lack of awareness and education about the condition. This lack of awareness and understanding can significantly impact the quality and availability of services and support for those affected.”
 
Press Coverage

• itv x – Government pledges to ‘transform care’ for people with ME
• The Independent – Woman’s death exposes need for ME care reforms
• The Independent – ME care reforms promised after woman’s tragic death
• BBC Breakfast – iplayer (1.13.20 to 1.26.11)
• The Times (paywall) – Doctors to be trained on ME in NHS plan to transform care
• The Times (paywall) – My daughter died from ME. This new plan fails her and others like her
• Pulse – GPs to support delivery of ME/CFS care under new NHS plan
• Channel 4 – ME Delivery Plan: will it make a difference?
• Healthcare Management – NHS professionals to be trained on ME and chronic fatigue syndrome
• The Star – What is ME and the symptoms of chronic fatigue syndrome as government announces new NHS care plan for patients
• Medscape UK – After a Long Delay, ME/CFS Strategy Finally Arrives
• BBC Radio Scotland – iplayer (1.38.32 to 1.53.00)
• 5 Live Breakfast
• Times Radio – interview with Sean O’Neill
• BBC World at One

 
 
 
Department of Health and Social Care Policy Paper
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS):
the final delivery plan
Published 22 July 2025
 
Ministerial foreword
 
I am delighted to publish this final cross-government delivery plan on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which while led by the Department of Health and Social Care (DHSC), has been developed in close partnership with the Department for Education (DfE), the Department for Work and Pensions (DWP) and NHS England, as well as, crucially, people with ME/CFS, carers, health and care professionals, researchers and research funders, charities and patient groups, and other interested organisations and individuals. 
I would like to thank everyone involved to date for their time and commitment to this vitally important work. I would particularly like to thank the members of the cross-sector Task and Finish Group that met 4 times between January and April 2025. As with any government plan or strategy, we have not been able to include every ask of that group in the final delivery plan, which must of course reflect what is practically feasible and financially viable and affordable, especially within the challenging current fiscal climate. However, the views of Task and Finish Group members have been very much considered alongside those received in response to the earlier consultation on the interim delivery plan. 
 
I recognise that care for people with ME/CFS has varied widely and, in the worst cases, has left some people feeling that their illness is not recognised by the health and care system. I know that those with severe or very severe ME/CFS, and their families and carers, have often felt particularly let down by those systems and I am painfully aware of patient safety concerns, and even tragically avoidable deaths of people with ME/CFS, in England. These must become never events. There are also inequalities in service provision that need to be addressed. We know that more research, better services and a better understanding of the condition all have the potential to make a huge difference to the quality of life of people with ME/CFS, whether that be those with symptoms on the milder end of the spectrum or those with very severe ME/CFS, and everyone in between. This final delivery plan marks an important milestone on the continuing journey to achieving those 3 high-level ambitions.
 
I know that the condition continues to blight the lives of so many children and adults across the country. In fact, the latest research findings recently concluded that the prevalence of people with ME/CFS in the UK may be as high as around 390,000[footnote 1] (or 0.6% of the population). The actions set out in this final delivery plan are intended not only to support the government’s health mission but also our growth mission, and these figures make a stark case for change on both fronts.
The interim delivery plan set out the problems to be addressed and draft actions to drive an expansion of research, better education of professionals, improvements in attitudes towards the condition and improvements to service provision. I was pleased to see that the public consultation on that interim plan attracted over 3,000 responses, which have helped us to firm up and expand on the number and/or ambition of the proposed actions I expect the final delivery plan to deliver in the months and years ahead. In some areas, significant progress has already been possible between publication of the interim and final delivery plans. For example, e-learning modules on ME/CFS for healthcare providers and the general public have been developed, and the DecodeME study providing a genetic resource to better understand ME/CFS and stimulate future research has had its funding extended to enable the research aims to be completed, and I thank those involved.
I know that people with ME/CFS, their families and carers have waited a long time for a new national delivery plan - some would say too long - and I was very keen that we published it now, on the back of the recently published 10 Year Health Plan, which sets out our vision for the NHS of the future, so that we and partners can start to turn much needed actions into practice. I acknowledge that some of the actions we set out in this final delivery plan will require further exploration, scoping and discussion post-publication, but I and the department, as well as other parts of government and the NHS, are happy to be held to account by the ME/CFS community, including those with lived experience, to ensure that we make progress against every action. Publication of this plan in no way marks the end of our journey. In fact, my view is that the real work, which we look forward to doing collaboratively with stakeholders, starts post-publication.
 
This final delivery plan covers the population of England. However, I know that the Scottish Government, the Welsh Government and the Northern Ireland Executive have all carefully considered the consultation responses on the interim delivery plan from their residents and what they have heard at the Task and Finish Group meetings, and the implications for local policy in the devolved nations.
 
I recognise that there are some overlaps - for example, in symptoms and/or interventions - between ME/CFS and some other long-term conditions like long COVID, postural orthostatic tachycardia syndrome (PoTS) and Ehlers-Danlos syndrome. It should be noted that, while we are very happy to explore overlaps and synergies with related conditions as the plan is implemented, we have maintained our commitment to focusing this plan only on ME/CFS.
I look forward to continued collaboration as we strive to bring about real and positive change for people with ME/CFS.
 
Ashley Dalton MP, Parliamentary Under-Secretary of State for Public Health and Prevention.
 
The following sections are detailed in the Policy Paper-
Summary;  Research summary;  Attitudes and education summary;  Living with ME/CFS summary;  After publication of the FDP;  Research;  Progress since publication of the IDP;  Exploring links with other post-acute infection condition;, Investment in research into ME/CFS and other post-acute infection condition;,  Encouraging further research into ME/CFS; Maximising value for ME/CFS research from research infrastructure;   Patient involvement ;  New investmen New funding opportunity:  evaluating medicines and other interventions for post-acute infection conditions, Monitoring progress and delivering impact,  Attitudes and education, Living with ME/CFS, Quality of life,  Support for children and young people with ME/CFS;  Provision of health services;  Provision of adult social care;  Provision of welfare support; Provision of employment support;  Agreed actions, Research;  Attitudes and education,  Living with ME/CFS,
 
Plus the Next steps,
The publication of this FDP marks an important milestone that provides the foundations for improvements in all important areas that affect people with ME/CFS. We will monitor the actions, and the DHSC secretariat will continue to engage with the Task and Finish Group in an appropriate form as required, to assess progress towards existing actions and to agree further actions where required. The Task and Finish Group includes representatives from ME/CFS charities, people with lived experience and those responsible for actions in the FDP, including government departments, arm’s-length bodies and professional organisations.
A new health services sub-group will be created to focus on improving care for those with ME/CFS. Appropriate and timely care for people with ME/CFS on all parts of the severity spectrum must improve. This FDP provides a framework for a sustainable approach which will ensure consistent and reliable care for all people with ME/CFS. We will continue to work with stakeholders across government, the NHS and beyond to progress the agreed actions set out in this plan with the aim of raising awareness and promoting understanding of ME/CFS across various sectors. We will also continue to actively engage with the All-Party Parliamentary Group on ME and collaborate with the 3 devolved UK nations, which participated in the development of this FDP.
 
 
Further announcements following publication of the Government’s Delivery Plan on ME/CFS
 
 
The ME Association’s statement on the Government’s Delivery Plan on ME/CFS
July 22, 2025
The Government’s delivery plan on ME/CFS is aiming to boost research, improve attitudes and education, and enhance the lives of people living with ME/CFS.
 
 
The 25% M.E. Group’s statement
Posted on July 22, 2025
On 22 July 2025, the UK Government released its Final Delivery Plan for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), marking a significant milestone in improving care, support, and research for the…
 
 
Action for ME (AfME) announces
DHSC publishes the Final Delivery Plan on ME/CFS
22 July 2025
The Department of Health & Social Care (DHSC) has published the Final Delivery Plan on ME/CFS.
The Plan’s release is an important step towards recognising the scale and seriousness of the condition and we welcome the Plan and the intent behind it.
Whilst there are elements of the Plan that will have a positive impact, it simply does not go far enough to ensure that its desired outcomes will be achieved. In particular, the Plan lacks a strategic approach to research investment, ambition, and accountability structures.
 
 
The British Association of Clinicians in ME/CFS (BACME) welcomes publication of the DHSC ME/CFS Delivery Plan on 22 July 2025. Provision of care closer to home, improving training for all health and social care staff, expanded NHS ME/CFS specialist services and funded opportunities for research into ME/CFS are much needed.
BACME shares the concerns of the charities working with people living with ME/CFS highlighting that this Delivery Plan does not go far enough. It does not offer sufficient urgency, funding or resources to realise the ambitions of clinicians and researchers working in this medical field.
 
The ME Association (MEA) publicises :
David Tuller interviews Dr Charles Shepherd about the new ME/CFS Delivery Plan
July 29, 2025
David Tuller, DrPh, has interviewed Dr Charles Shepherd, MEA Honorary Medical Advisor, about the recent publication of the new ME/CFS Delivery Plan.

•  25% M.E. Group  •  Action for ME 
•  B.B.C.  •  Government U.K. 
•  M.E. Association  •  MERUK 
•  MP  •  National Newspapers 
•  N.H.S.  •  Parliament U.K. 

World ME Alliance - World ME Day 2025.
ME Awareness Week 2025, 12 - 18 May.
12 May has been ME/CFS Day since 1992,.
 
ME Research UK (MERUK) announce US states to mark International ME Awareness Day
13 February 2025
Since 1992 12th May has been recognised as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) International Awareness Day.
On this important day, organisations and individuals recognise and support the millions of people world-wide who are affected by ME/CFS and other chronic immunological and neurologic diseases by raising public awareness.  In fact, 12th May is International Awareness Day for Chronic Immunological and Neurological Diseases (CIND). The CIND illnesses include Myalgic Encephalomyelitis (M.E.), Chronic Fatigue Syndrome (CFS), Fibromyalgia (FM), Gulf War Syndrome (GWS) and Multiple Chemical Sensitivity (MCS).
 
Two US states have legislated this year to mark the date.  The New York State Senate has passed a resolution marking “the 33rd Anniversary of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Day in the State of New York”.  In addition, the State of Alaska has passed “An Act establishing May 12 as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Day of Recognition” and that 12th May may be observed by suitable observances and exercises by civic groups and the public.
 
 
World ME Alliance
Country-by-Country Highlights for World ME Day 2025.
Post author:World ME Alliance
Post published:8 May 2025
Around the world, individuals, organisations and communities are coming together in to mark World ME Day 2025.  Below is a breakdown of national events and campaigns happening by country, highlighting the wide range of efforts to raise awareness, push for better care, and demand action for people living with Myalgic Encephalomyelitis (ME).  From media takeovers to political action, here are just some of the national activities taking place in 2025.  Article includes information from - France, Belgium, New Zealand, Portugal, United Kingdom, Scotland, Northern Ireland, Germany, Australia, United States, Mexico, Brazil, Czechia.
 
 
World ME Alliance explain Six Myths World ME Day 2025: Six Myths and Facts Everyone Should Know About Myalgic Encephalomyelitis (ME)  and Facts Everyone Should Know About Myalgic Encephalomyelitis (ME).  Myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), is a debilitating illness that affects millions of people worldwide. However, persistent myths and misunderstandings hinder its recognition and treatment.  This year we are calling on you to help debunk six of the most common myths about ME and share the medical facts everyone should know.
 
1. Myth: ME is a mental health condition.
     Fact: ME is a biological illness that disrupts the metabolism and impairs the brain, immune system and autonomic nervous system.
It often starts after an infection, common flu or COVID. Millions of people worldwide have ME, with about 75% of them being women. Many struggle with daily activities, up to 75% cannot work or attend school, and at least 25% of patients are so severely affected that they are housebound or bedridden.
 
2.  Myth: ME is just about feeling tired
     Fact: The defining symptom of ME is Post-Exertional Malaise (PEM) - an extreme worsening of symptoms after even minor physical or mental exertion.
This can trigger a “crash” lasting for days or longer, making even basic activities difficult or impossible. Attempting to push through can significantly worsen symptoms and may lead to long-term deterioration.  For those with severe ME, even minimal exertion -such as sitting up, light conversation, or sensory stimuli like sound and light - can be intolerable, leaving them extremely disabled and dependent on full-time care.
 
3.  Myth: You can exercise your way to recovery from ME.
     Fact:  Exercise can be dangerous for people with ME.
Unlike other chronic conditions where exercise can help, structured exercise programs often make ME symptoms worse as patients end up pushing themselves too far.
In the past, graded exercise therapy (GET) was recommended, but after reviewing the evidence, health organisations like NICE in the UK and the CDC in the US have warned against it. Instead, people with ME are encouraged to pace themselves—balancing activity and rest—to avoid deterioration.
 
4.  Myth: Only certain groups of people can develop ME. 
     Fact: ME affects people of all races, genders, ages, and socioeconomic backgrounds. 
The misconception that ME primarily affects certain groups stems from disparities in diagnosis and healthcare access. While about 75% of those affected are women, ME can affect anyone, regardless of age, gender, race or income. In addition, marginalized communities face more challenges getting diagnosed and treated due to bias in the medical system and lack of awareness. 
 
5. Myth: Long COVID is entirely different from ME.
     Fact: Many Long COVID patients have symptoms that match ME.
Since the COVID-19 pandemic, researchers have found that a large number of people with persistent Long COVID meet the diagnostic criteria for ME. Many experience PEM, the core symptom of ME. Studies highlight the biological similarities between the two diseases, reinforcing the need for integrated research and clinical approaches for these two conditions as well as other post-infectious syndromes.
 
6. Myth: Doctors cannot help people with ME.
     Fact:  Doctors can help people manage ME symptoms.
While there is no cure for ME, there are compassionate ways to help patients manage their symptoms, in addition to pacing to prevent PEM. Treating co-existing conditions and providing medications to address sleep disturbances, pain, and cardiac and neurological issues can offer significant relief. Offering at-home visits, online consultations and palliative care can make a big difference to someone suffering from Severe ME.
 
 
ME Research UK announce -
Scottish Parliament Motion to mark International ME Awareness Day
23 April 2025
That the Parliament marks International ME Awareness Day 2025 on 12 May and commends ME Research UK on the occasion of 25 years since its foundation; notes that the charity is dedicated to commissioning and funding biomedical research into the causes, consequences and treatment of myalgic encephalomyelitis/chronic fatigue syndrome (ME/ CFS); believes that the disease, which affects at least 20,000 people in Scotland, is often misunderstood, mis-diagnosed and under-diagnosed, and is grievously under-researched; understands that the Perth-based charity has invested over £4.5 million in research with 68 research projects globally, four PhD-level projects and a Fellowship; further understands that, in terms of projects, the Perth-based charity is the largest funder of ME/ CFS outwith North America, that it presently funds projects in Australia, France, Germany, the Netherlands, Sweden, USA and the UK, and is funded entirely by individual donations, and extends its thanks for the work of ME Research UK in informing, influencing and investing in ME research globally.
Liz Smith, Mid Scotland and Fife, Date lodged: Tuesday, 22 April 2025; 
Motion reference: S6M-17226
 
To raise awareness of ME among politicians at Holyrood ahead of International ME Awareness Day, Liz Smith MSP (who represents ME Research UK’s Perth base as regional list MSP for Mid Scotland and Fife), has lodged a Motion at the Scottish Parliament. The Motion also marks ME Research UK’s 25th anniversary by highlighting our work in the past quarter century.
Most Motions submitted by MSPs raise awareness of an issue or recognise a group, business or individual with other non-Cabinet MSPs able to endorse to show their agreement and support and although of no legislative effect the Motion remains on Parliament’s website. Of the 129 MSPs only 104 are able to support such Motions.
 
 
ME Association (MEA) announce -
ME Awareness Week 2025, 12th - 18th May
ME Awareness Week is observed every year in May surrounding International ME/CFS Awareness Day (also known as World ME Day) on 12th May.   This year, we are focusing on information surrounding the symptom management of ME/CFS. Please keep any eye out on social media for our posts!
 
Awareness helps in several ways: it educates the public and healthcare providers, reducing stigma and promoting early diagnosis; it drives funding for research into causes and treatments, as there’s currently no cure; and it fosters empathy and support for those living with ME, who often feel isolated due to the condition’s impact on their daily lives. By shining a light on ME, we can improve quality of life for millions and push for better medical and social resources.
 
 
The 25% ME Group share
M.E awareness 2025
Awareness helps in several ways: it educates the public and healthcare providers, reducing stigma and promoting early diagnosis; it drives funding for research into causes and treatments, as there’s currently no cure; and it fosters empathy and support for those living with ME, who often feel isolated due to the condition’s impact on their daily lives.  By shining a light on ME, we can improve quality of life for millions and push for better medical and social resources.
 
Raising awareness for Myalgic Encephalomyelitis (ME), also called Chronic Fatigue Syndrome (CFS), is vital because it’s a misunderstood and often invisible illness.  ME is a severe, chronic condition that impacts multiple body systems, leading to extreme fatigue, pain, brain fog, and post-exertional malaise - where even small activities worsen symptoms.
 
 
Action for ME give details of the Joint APPG meeting.
Joint ME and Long Covid APPG meeting agenda - May 2025
24 April 2025
The first joint meeting between the APPG on ME and the APPG on Long Covid is taking place on Wednesday 14 May, from 5pm - 7pm.
 
Ensure you MP is aware of this important joint meeting during ME Awareness Week.
Link for further details at.

•  25% M.E. Group  •  Action for ME  •  A.P.P.G   •  M.E. Association  •  MERUK  •  MP   •  Parliament U.K. 

Local, National and International News:  just click on the links for further information.
 
World ME Day Debate lead by Sir Sajid Javid, MP for Bromsgrove, was held on the first day of ME/CFS Awareness Month in Westminster Hall, Houses of Parliament.
 
ME Research UK (MERUK) gave their report, with explanations, in particular Houses of Parliament procedures.. 
 
Westminster Hall debates are held not in the chamber of the House of Commons but elsewhere in the Palace of Westminster and provide the opportunity to debate any issue, ranging from major constitutional questions to areas of particular interest to MPs and their constituents, outside the Parliamentary calendar set by the Government. There is no division to vote on the matter, there is no tabling of amendments and the motion is not binding on the government. Westminster Hall debates do allow MPs to raise issues, receive answers from the relevant government department, and can be key to facilitating good political discourse in Parliament as well as gauging likely supporters and areas of common concern.
 
It is within this context that Sir Sajid Javid secured a debate on 1st May on the topic “That this House has considered World ME Day.” It was a forum for MPs to bring to the meeting the experiences of their constituents and to press for progress. Ten spoke in the hour long debate with a response being forthcoming from The Minister for Health and Secondary Care (Andrew Stephenson)
Introducing the topic, the former Secretary of State for Health and Social Care and impetus behind the Delivery Plan process, reminded MPs that he had a personal connection to the disease as his cousin, “Until the age of 13 … was a happy, healthy teenager. She was academically gifted and a talented netball player. Seven years later, today, her life has completely changed.” Sir Sajid continued
Overall, the debate narrated little new but did confirm that publication of a finalised Delivery Plan is not going to happen soon. The full debate is available to watch on parliamentlive.tv from 16.30.
 
 
The ME Association ask -
Westminster Hall Debate: When will the Final Delivery Plan on ME/CFS be published?
May 2, 2024
Sir Sajid Javid hosted a Westminster Hall debate on ME/CFS yesterday. It was called to officially recognise World ME Day on 12 May, but the initial focus from Sir Javid was to raise concerns about when the Delivery Plan on ME/CFS would be published by the Department of Health and Social Care and when we might expext NICE Guideline recommendations to be implemented across the NHS and social care services…
 
 
World ME Alliance  -
Become a #GlobalVoiceForME on May 12th
This year marks the 55th anniversary since the World Health Organization (WHO) officially acknowledged ME, highlighting the urgency of addressing this global health crisis. 
 
In recent times, the landscape of ME has evolved with COVID-19 triggering a surge in the numbers of individuals affected by ME.  Today, we estimate that more than 55 million individuals worldwide are living with the debilitating effects of this condition. Amidst these escalating numbers, member organisations of the World ME Alliance are actively joining forces, amplifying their support for initiatives that seek to address the multifaceted impact of ME on individuals and communities alike.
With your support, we will be a #GlobalVoiceForME.
 
 
ME Research UK (MERUK) reported on the recognition of ME in New York.
Recognition of International ME Awareness Day 2024
5 May 2024
The first International ME Awareness Day was marked in 1992 and, since then, International ME Awareness Day has become the focal point for many awareness raising, lobbying, and other M.E. initiatives globally.
The latest moves to mark 12th May have come from state legislatures in the US – California and New York. In particular, New York State whose Senate passed Bill J01564 and narrated
 
WHEREAS, It is the custom of this Legislative Body to recognize official days that are set aside to increase awareness of serious illnesses that affect the lives of citizens of New York State; and
WHEREAS, Attendant to such concern, and in full accord with its long-standing traditions, this Legislative Body is justly proud to commemorate the 32nd Anniversary of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Day in the State of New York; and
WHEREAS, International Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Awareness Day is observed every year on May 12th to support and recognize people with this disease and other chronic immunological and neurological diseases by raising awareness and providing useful information; and
WHEREAS, On May 12, 2024, people from across the world are encouraged to wear blue to raise awareness and show support for people with ME/CFS, their families and caregivers, and researchers who study this disease; …..
WHEREAS, ME/CFS is a tragic, disabling disease which destroys the lives of many patients and imposes a severe toll on their families, friends, and caretakers; and
WHEREAS, It is imperative that there be greater awareness of this serious health condition, and more must be done to increase awareness and funding at the local, State and National levels; now, therefore, be it
RESOLVED, That this Legislative Body pause in its deliberations to commemorate the 32nd Anniversary of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Day in the State of New York.
 
And, this was followed by Senate Resolution 1565 which further resolved to ”to memorialize Governor Kathy Hochul to proclaim May 2024, as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Month in the State of New York, in conjunction with the observance of International Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Day”.
 
 
Action for ME (AfME) announce -
World ME Day 2024 | Join our call-to-action
May 03, 2024
This World ME Day, we are supporting the World ME Alliance in becoming a #GlobalVoiceForME.
 
ME is a global health crisis and we must therefore collaborate across the world to combat it. In showing a united stance against ME, sharing research findings, and building much-needed awareness of the condition in every nation, we can create positive change for people affected by ME now, and in the future.
 
In addition to contacting the UK’s WHO National Counterpart, calling on them to become a #GlobalVoiceForME, we want to ensure that momentum gained from the recent Westminster Hall debate is not lost.
We’re calling the Government to fulfil its moral duty to people with ME through committing to funding more, high-quality research into the condition and releasing the full publication of the cross-Government Delivery Plan as a matter of urgency.
 
 
The 25% M.E. Group
ME Awareness 2024 Campaign
ME/CFS and Anaesthesia Factsheet and Podcast
This detailed new information booklet, from the Royal College of Anaesthetists, is a must for anybody with ME who anticipates they may have to have surgery. To make it ME friendly it is downloadable. Please see the 25% ME Group ME Awareness 2024 webpage at https://25megroup.org/me-awareness-2024/.

This excellent resource has been created because people with ME had been approaching the Royal College of Anaesthetists about the lack of information around ME and anaesthesia. (25% ME Group and the ME association had also been contacted by members asking for information about anaesthesia.) Based on these requests from patients, a focus group of people with lived experience of ME and having an anaesthetic was set up by the Royal College of Anaesthetists and the ME Association to gather patients’ experiences. The focus group was led by Dr Anton Krige, a consultant in Intensive Care and anaesthesia. All severities of ME, including very severe ME, were represented at the focus group and were able to input into this resource.
 
 
The Worcestershire M.E. Social Group’s "Symptoms of M.E./CFS” Information Sheet" has been updated.  The May 2024 issue is available on our website in the About M.E. section.  The recent group announcement includes Symptoms and Awareness news from Action for ME (AfME),, BACME (British Association of Clinicians in ME/CFS),  ME Research UK (MERUK); and the ME Association.(MEA).

•  25% M.E. Group  •  Action for ME  •  M.E. Association  •  MERUK  •  MP  •  Parliament U.K.  •  Worcestershire M.E. Social Group

The ME Association (MEA) give explanations for everyone, including people on various benefits.
 
Following the Chancellor’s Energy Payments announcement last month -
New energy payments announced by Chancellor
May 26, 2022
The Chancellor has just announced an extensive package to assist households struggling with the cost-of-living crisis.
 
This package will affect all households to some extent, dependent on circumstances, and some may be eligible for multiple payments.
The controversial £200 energy loan that was to be applied to all household electric bills in the autumn has been cancelled and replaced with a £400 non-repayable grant.
The Household Support Fund has also been increased to £500 million for anyone struggling to apply to their local councils for assistance.

• Low Income Payment: Benefit claimants will receive a £650 payment, made by the DWP direct to their bank accounts in 2 lump sum payments in July and later in the Autumn.
• Pensioner Payment: Pensioners who receive the Winter Fuel Payment are eligible for a £300 payment.
• Disability Payment: Disabled people who receive non-means-tested benefits such as DLA, PIP or Attendance Allowance will receive a £150 one off payment.

 
What does this mean for me?
Help with cost of living will apply to the whole of the UK. The maximum payment that you could receive if on means-tested benefits and PIP/DLA/Attendance Allowance (non-means tested) would be: 

• £400 (discount on all domestic energy bills (paid in October): The Energy Bills Support Scheme),
• + £650 (means-tested benefits (Universal Credit, Tax Credits, Pension Credit and means-tested legacy benefits such as Income Related ESA) with a first payment in July, the second in the Autumn), 
• + £150 (non-means tested disability benefits (PIP/DLA paid by September), 
• = £1200 
• + £300 if you are a pensioner (paid as part of Winter Fuel Allowance in November/December).
• And, you should have received - or will soon - a £150 rebate in Council Tax as part of the help being provided to cope with cost of living increases.
• Please read the Government's press release below to learn more. Payments will be made automatically to your bank account. 
• Housing Benefit does not qualify you for additional payments beyond the £400 discount that all households will receive. If you only receive Housing Benefit with no additional means-tested benefit then consider applying for the Household Support Fund which is administered by your local council.

 
BBC News -
Every household to get energy bill discounts of £400 this autumn
 
Government Press Release -
Millions of most vulnerable households will receive £1,200 of help with cost of living
 
-   Ella Smith,  MEA Welfare Benefits Adviser.
 
 
During June, Ella Smith, the MEA’s Welfare Benefits Adviser, gave us two ‘Cost of Living Payment’ explanatory announcements.
 
First Instalment of the £650 payment for qualifying low income households.
Cost of living payment 
June 15, 2022
 
The first instalment of the £650 payment for qualifying low income households in England, Wales, Scotland and Northern Ireland will be paid into bank accounts from 14 July 2022. This instalment will be an automated payment of £326 and the second payment later in the autumn will be £324. The government states that the payments are deliberately unequal due to the time periods used to decide who is eligible, in order to minimise fraud risks.
 
Anyone with an existing claim of the following benefits by 25th May 2022 will receive a payment: Universal Credit, Income-based Jobseekers Allowance, Income-related Employment and Support Allowance, Income Support, Working Tax Credit, Child Tax Credit and Pension Credit. Tax credits claimants will receive their payment slightly later than other DWP benefit claimants to avoid duplicate payments to the same household.
 
This payment will be tax-free, will not count towards the benefit cap, and will not have any impact on existing benefit awards.
Qualifying households do not need to do anything to apply for this payment; it will be made automatically into the bank account they usually receive their qualifying benefit in.
The payment dates for the other cost of living assistance payments to pensioners and to those on qualifying disability benefits will be announced shortly.
 
Government Information -
Cost of Living Payment
 
-   Ella Smith, MEA Welfare Benefits Adviser 
 
 
Cost of Living Payment: Who is eligible for the £650?
June 22, 2022
 
Phoebe, one of the MEA champion bloggers discusses the Cost of Living Payment in a recent blog and highlights that not everyone seems to understand who is eligible to receive the payment and those who will not receive it.
“The £650 for people on benefits does not include disabled people who are on Contribution Based Employment and Support Allowance (CB ESA). This however isn’t being made immediately clear, and I have spent a large portion of today trying to stop the spread of misinformation on Twitter, with many people confidently stating that everyone on Employment and Support Allowance (ESA) will be eligible for the £650, which is not the case. Only those on Income Related Employment and Support Allowance (IR ESA) will receive the £650.
It would be a mistake to assume that the government will help the most vulnerable first, despite them saying that they will help the most vulnerable first, but I can understand why it’s nice to think so.  With this new information, you might be hoping that once people realise that people on Contribution Based Employment and Support Allowance (CB ESA) are being excluded, they’ll make a fuss and it will be corrected?  Again, I can understand why it’s nice to think that will be the case. Disabled people on ESA have been here before.”
 
Phoebe's blog ('Puffins and Penguins') is entitled: Rishi Sunak’s Cost of Living Crisis Measures - Disabled People on ESA Are Losing Out, Again 
 
MEA Comments -
Ella Smith, Welfare Benefits Adviser provides the following information in relation to Phoebe's blog:

• People on Contribution Based Employment and Support Allowance will not be transferred to UC, only those on Income Related Employment and Support Allowance will be put on the new system. This is exactly because Universal Credit is a means-tested benefit that replaces the old, means-tested legacy benefits like Income Related Employment and Support Allowance. As Contribution Based Employment and Support Allowance is contributions-based and not means-tested, it sits outside the Universal Credit scope.
•  This is important when it comes to the cost-of-living payments because someone could be living in a household with a very high income or a lot of capital and still be able to receive Contribution Based Employment and Support Allowance (CB ESA). This is not the case with means-tested benefits because the household circumstances are considered. 
• If someone on Contribution Based Employment and Support Allowance (CB ESA) has no other income or capital coming into the household, it is very likely that they can also claim a means-tested benefit alongside their Contribution Based Employment and Support Allowance.
• Claiming a means-tested benefit is the only way to qualify for the £650 cost-of-living payment because this payment is targeted at LOW INCOME households. As discussed, someone on Contribution Based Employment and Support Allowance (CB ESA) may not be living in a low-income household but everyone on means-tested benefits will be.
• Regarding the information discussed about the Warm Home Discount, this has only been reported in the Mirror newspaper as a potential change. No legislation or further details have been announced as yet by the government. The likelihood of this happening in the current climate is still uncertain but people who claim means-tested benefits in addition to disability payments such as Personal Independence Payment (PIP) still seem highly likely to be able to receive the Warm Home Discount.  The Mirror article is here, with no real details being given. 

 
 
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.

•  B.B.C.  •  Benefits  •  Government U.K. 
•  M.E. Association  •  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

•  25% M.E. Group  •  Action for ME  •  Forward ME  •  Government U.K.  •  #MEAction  •  M.E. Association  •  MERUK  •  N.I.C.E.
 •  Parliament U.K.  •  The ME Trust  •  Tymes Trust

The Worcestershire County Council Covid-19 website reassuring announcement following news of an increase of cases in Redditch.
 
Coronavirus cases in Worcestershire - 25 August 2020
We have seen an increase in cases in Redditch but these are not linked to a workplace or community venue. We are confident that most cases are linked to a single event in a private household and the risk to the wider community is low.
Those who have tested positive are following our advice and self isolating. Others who attended the event have also gone into isolation. We are continuing to trace any additional contacts but the risk to the wider community is low.  
 
This is a reminder to all of us that Covid-19 has not gone away, and it is important that we all continue to wash our hands regularly, wear face coverings where necessary, and keep our distance. If you have symptoms of COVID-19, you must arrange a test.  Read the latest statement from Dr Kathryn Cobain, Director of Public Health for Worcestershire
 
Statement on COVID-19 in Redditch
Following an increase in the number of confirmed COVID-19 cases in Redditch, Rachel Maclean MP issued a statement.
 
Worcestershire health chief reassures public after coronavirus cases rise
The Worcester News article explained that the director of public health for Worcestershire has said the number of positive coronavirus cases in Worcestershire “remains low” despite an increase in cases in a county town.   Dr Kathryn Cobain reassured residents after a sharp rise in cases in Redditch, where 25 new Coronavirus were reported last week, giving the town a higher coronavirus rate per 100,000 people than in Birmingham.
 
Public Health Worcestershire has issued advice for car sharing - this was publicised by Worcestershire County Council on 20 August 2020 
It is advised that you only car share with people in your household, if you must share with someone from outside your household, the advice is as follows:

• share with just one other person from outside your household
• wear face coverings for the duration of the journey
• maximise the distance between driver and passengers (with the passenger sitting in the back on the opposite side from the driver)
• keep windows down when travelling
• clean the car between journeys, particularly wiping down all contact points that people may have touched

 
 
Information specifically for people affected by ME/CFS
 
The MEA Association’s recent Covid-19 leaflets and letters are all available to download,

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

 
Action for ME (AfME) have a 'Coronavirus and M.E./CFS' page - which has been set up to keep track of up-to-date advice regarding Coronavirus, and support available from Action for M.E.  AfME are monitoring this page, and it gives the time when it was last updated.
 
#MEAction continue to add information to their Covid-19 Resources page, giving information about the coronavirus outbreak and its effect on people with ME. It includes links to useful governmental sites regarding the outbreak as well as resources and articles particularly developed for people with ME. 
 
The 25% M.E. Group has leaflets available to download for people with severe M.E. on its website.

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

 
Take care, and stay safe everyone.

•  25% M.E. Group •  Action for ME •  #MEAction •  M.E. Association
•  Coronavirus (COVID 19) 
•  Local News •  Worcestershire County Council •  MP •  N.H.S. 

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 [email protected] 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.

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

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

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

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

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

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

 
Take care, and stay safe everyone.

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

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

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

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

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

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

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

 
Take care, and stay safe everyone.

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.