Take part in this final stage of research to develop an assessment of ME/CFS symptoms.
 
The ME Association (MEA) announce
Research: The Index of ME Symptoms (TIMES) for ME/CFS
September 13, 2024
The ME Association is funding a study led by Prof Sarah Tyson (who also has ME) from the University of Manchester (as pictured), to develop a clinical assessment toolkit in collaboration with people with ME and clinicians in NHS ME/CFS specialist services. 
“Many thanks to the thousands of you who have supported the clinical assessment toolkit project. We are now entering the final stages of the data collection, which is a busy time!
Professor Sarah Tyson” 
 
The final stage of the research is to develop an assessment of ME/CFS symptoms, called The Index of ME Symptoms (TIMES) by working with people with ME/CFS and clinicians in specialist services.   We have completed the initial analysis for the TIMES, which assesses symptomology and we have made quite extensive revision in the light of that analysis and your feedback.  It is now much shorter and simpler with just one question per symptom, although there are still quite a lot of symptoms, as we need to be comprehensive. Therefore, we would now like to double-check that the revised version provides the robust data that we expect it to. 
N.B. We only need a smaller number of participants (250) for this analysis, so we will close the survey once we have reached this number, which will probably be in a couple of weeks. Please be aware that there will be a couple more surveys coming in the next few weeks.  If you have any questions or comments, please contact Prof Sarah Tyson, the Chief Investigator at [email protected]
 
Please could you help by completing the following survey.
Developing a clinical assessment toolkit for people with ME/CFS and clinical services.  We are asking adults in the UK who have been diagnosed with myalgic encephalomyelitis (ME), which is also known as chronic fatigue syndrome (CFS) to complete this online questionnaire.  People whose ME/CFS was triggered by a covid infection (i.e. long covid) are also invited to take part.  N.B. We only need a smaller number of participants (250) for this analysis, so we will close the survey once we have reached this number, which will probably be in a couple of weeks. Please be aware that there will be a couple more surveys coming in the next few weeks.
If you have any questions or comments, please contact Prof Sarah Tyson, the Chief Investigator at [email protected]
 
 
Our blog’s previous request from Prof Sarah Tyson, earlier this year
ME/CFS Research:  request from organisers for participants
11/4/2024.  Below is an Invitation to participate in the development of a Clinical Assessment Toolkit for people with ME/CFS, and the Clinical Services.
 
 
The Worcestershire M.E. Social Group’s "Symptoms of M.E./CFS” Information Sheet" was updated in May 2024.  It 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).

•  Action for ME  •  M.E. Association  •  MERUK  •  Research  •  Worcestershire M.E. Social Group

Recent News from ME Research UK, Action for ME and the ME Association.
Former Worcestershire MP’s involvement
 
ME Research UK (MERUK) give ME/CFS Delivery Plan detailed announcement.

Winter 2024/2025 Publication announced for ME/CFS Delivery Plan
13 August 2024
Baroness Scott of Needham Market tabled 3 linked questions on 29 July 2024 asking the Dept of Health and Social Care to provide - an update on publication of the cross-Government ME/CFS Delivery Plan (UIN HL452), whether the Delivery Plan will include provision for hospital treatment and full consideration of how to safely prevent malnutrition in very severe ME (UIN HL453), and querying what assessment the government has made of the percentage of the research budget allocated for ME/CFS and Long Covid, and whether they plan to increase this amount (UIN HL454).
 
Answering on behalf of the government in a combined response, Baroness Merton (Parliamentary Under-Secretary at the Department of Health and Social Care) revealed that -
 
A consultation was run in 2023 on the interim delivery plan for myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS).  In the World ME Day Westminster Hall debate in May 2024, the current Parliamentary Under-Secretary of State for Public Health and Prevention pushed for the publication of a response to the consultation.  It is now a priority for the Department, and it is our intention to publish a response in the coming months.  The consultation responses, along with continued close engagement with stakeholders, will inform the development of the Final Delivery Plan, which we aim to publish in the winter of 2024/25.
 
No specific assessment has been made of the proportion of the research budget allocated for ME/CFS or long COVID.  Over the last five years, the Department, through the National Institute for Health and Care Research (NIHR), has allocated £6.64 million of funding to support 10 research projects, including the £3.2 million DecodeME study, co-funded with the Medical Research Council.  Over the same period, the NIHR and UK Research and Innovation have awarded over £50 million for long COVID research.  The NIHR remains committed to funding high-quality research to better understand the causes and health impacts of ME/CFS and long COVID, and to identify and evaluate new treatments and interventions.
 
It is not usual practice for the NIHR to ring-fence funds for particular topics or conditions.  The NIHR welcomes funding applications for research into any aspect of human health, including ME/CFS and long COVID.  These applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality.
 
What does this tell us?

• publication of the Delivery Plan - a process announced in May 2022 - is a ‘priority’.
• the government’s response to the consultation phase of the draft Delivery Plan will be forthcoming ‘in the coming months’.
• the full Delivery Plan will be published in the Winter but no firm date given despite the fact that publication has slid back and was initially due by the end of 2022, …. then as soon as possible in 2023 ….. and now slated for end of 2024 …. or beginning of 2025.
• NIHR continues with its sleight of hand by referencing only past 5 years of funding with its support of deCodeME whilst ignoring decades of underinvestment in biomedical research into ME/CFS and MRC’s funding of biopsychosocial research.
• Egregious underfunding of ME/CFS research when compared to long COVID.
• No comment on whether ME/CFS research funding will be increased.
• Despite decade’s long call for ring-fenced ME/CFS research funding, (cf. CMO Working Group and Gibson Report) it is confirmed that “not usual practice for the NIHR to ring-fence funds” for particular illnesses.  It appears the government is oblivious to fact that both Germany and The Netherlands (28.5 million euros 10-year programme) have strategic ME/CFS research collaboratives precisely because of ring-fenced funding.
• UIN HL453 went unanswered.

 
Plus ça change
This group believes that the MRC should be more open-minded in their evaluation of proposals for biomedical research into CFS/ME and that, in order to overcome the perception of bias in their decisions, they should assign at least an equivalent amount of funding (£11 million) to biomedical research as they have done to psychosocial research.  It can no longer be left in a state of flux and these patients or potential patients should expect a resolution of the problems with only an intense research programme can help resolve.  It is an illness whose time has certainly come.
 
Group on Scientific Research into ME Report (Gibson Report) Nov 2006
 
 
Worcestershire ME Social Group’s blog, and 'About ME' information.
The late Dr Richard Taylor, MP for Wyre Forest, (from 2001 to 2010), was Vice chairman of this all-party Group for Scientific Research into ME (GRSME).
 
 
Worcestershire ME Social Group’s blog,
World ME Day Sunday 12 May and ME/CFS Awareness Week 6 - 12 May
7/5/2024
World ME Day Debate lead by Sir Sajid Javid, MP for Bromsgrove (2010 - 2024), was held on the first day of ME/CFS Awareness Month in Westminster Hall, Houses of Parliament.  “Introducing the topic, the former Secretary of State for Health and Social Care and impetus behind the Delivery Plan process,”
 
 
News from Action for ME (AfME).
Labour commits to publish full Delivery Plan on ME/CFS
August 08, 2024
Statement by Andrew Gwynne MP, Parliamentary Under-Secretary of State for Public Health and Prevention.
 
In response to concerns from the ME community relating to the publication of the full Delivery Plan on ME/CFS, following the Government's response to a question by Baroness Scott of Needham Market on 29 July, Andrew Gwynne MP has confirmed Labour's commitment to publishing the full Delivery Plan on ME/CFS:
 
"It isn’t being delayed again… I’ve asked my officials to publish the plan, which they will now do. The last government sadly stalled the process. Officials are now putting everything together and I should have something to see very soon pending publication."
 
In response to Andrew Gwynne MP's statement, Action for M.E. CEO, Sonya Chowdhury, said:
"We are delighted to hear the Labour Government's commitment to publishing the full Delivery Plan on ME/CFS and know this announcement will be met with a level of relief from the ME community. It is now essential that, once published, the commitments made to people affected by ME within the Plan are implemented as a priority, including urgent action to address the lack of research funding into the condition, and we look forward to working with the Labour Government to ensure this happens."
 
Parliamentary Question: Baroness Scott of Needham Market, 29 July 2024
“To ask His Majesty's Government what assessment they have made of the percentage of the research budget allocated for myalgic encephalomyelitis and Long Covid, and whether they plan to increase this amount.”
Answer: Baroness Merron, 06 August 2024
“A consultation was run in 2023 on the interim delivery plan for myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS). In the World ME Day Westminster Hall debate in May 2024, the current Parliamentary Under-Secretary of State for Public Health and Prevention pushed for the publication of a response to the consultation. It is now a priority for the Department, and it is our intention to publish a response in the coming months. The consultation responses, along with continued close engagement with stakeholders, will inform the development of the Final Delivery Plan, which we aim to publish in the winter of 2024/25.
 
“No specific assessment has been made of the proportion of the research budget allocated for ME/CFS or long COVID. Over the last five years, the Department, through the National Institute for Health and Care Research (NIHR), has allocated £6.64 million of funding to support 10 research projects, including the £3.2 million DecodeME study, co-funded with the Medical Research Council. Over the same period, the NIHR and UK Research and Innovation have awarded over £50 million for long COVID research. The NIHR remains committed to funding high-quality research to better understand the causes and health impacts of ME/CFS and long COVID, and to identify and evaluate new treatments and interventions.
“It is not usual practice for the NIHR to ring-fence funds for particular topics or conditions. The NIHR welcomes funding applications for research into any aspect of human health, including ME/CFS and long COVID. These applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality.”
 
 
Plus. Information from the ME Association(MEA)
Labour government commits to publishing the final delivery plan on ME/CFS
August 7, 2024
Parliamentary Question: Baroness Scott of Needham Market, Liberal Democrat, 29 July 2024
“To ask His Majesty's Government what assessment they have made of the percentage of the research budget allocated for myalgic encephalomyelitis and Long Covid, and whether they plan to increase this amount.”
 
Answer: Baroness Merron, Labour, 06 August 2024:
“A consultation was run in 2023 on the interim delivery plan for myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS). In the World ME Day Westminster Hall debate in May 2024, the current Parliamentary Under-Secretary of State for Public Health and Prevention pushed for the publication of a response to the consultation. It is now a priority for the Department, and it is our intention to publish a response in the coming months. The consultation responses, along with continued close engagement with stakeholders, will inform the development of the Final Delivery Plan, which we aim to publish in the winter of 2024/25.
“No specific assessment has been made of the proportion of the research budget allocated for ME/CFS or long COVID. Over the last five years, the Department, through the National Institute for Health and Care Research (NIHR), has allocated £6.64 million of funding to support 10 research projects, including the £3.2 million DecodeME study, co-funded with the Medical Research Council. Over the same period, the NIHR and UK Research and Innovation have awarded over £50 million for long COVID research. The NIHR remains committed to funding high-quality research to better understand the causes and health impacts of ME/CFS and long COVID, and to identify and evaluate new treatments and interventions.
“It is not usual practice for the NIHR to ring-fence funds for particular topics or conditions. The NIHR welcomes funding applications for research into any aspect of human health, including ME/CFS and long COVID. These applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality.”
 
 
Previously, last month, the ME Association (MEA) stated a Parliamentary Question
July 26, 2024:
What steps does the Government plan to take to improve support for people with ME 
 
QUESTION: Dr Rupa Huq, Labour, Eailing Central and Acton: To ask the Secretary of State for Health and Social Care, what steps he plans to take to improve support for people with myalgic encephalomyelitis.
ANSWER: Andrew Gwynne, Labour, Gorton and Denton –  Parliamentary Under-Secretary of State at the Department of Health and Social Care:
 
“Integrated care boards (ICBs) are responsible for commissioning specialist myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), services that meet the needs of their population, subject to local prioritisation and funding. The process of commissioning services should take into account best practice guidance, such as the National Institute for Health and Care Excellence’s (NICE) guidance on ME/CFS diagnosis and management, published in October 2021.
The Department funds research into ME/CFS through the National Institute for Health and Care Research (NIHR). The NIHR, together with the Medical Research Council, is funding the world’s largest genome-wide association study of ME/CFS. This £3.2 million study, termed DecodeME, will analyse samples from 25,000 people with ME/CFS to search for genetic differences that may indicate underlying causes or an increased risk of developing the condition. A decision on the next steps for ME/CFS at the national level will be taken in the coming weeks.”
 
MEA Comment
We have a new Labour Government and this is a recurring parliamentary question on ME/CFS with the same ministerial answer.
As per the APPG on ME announcement, we understand the need to ensure that ME is kept firmly on the agenda of the new Government and that the All-Party Parliamentary Group (APPG) on ME will play an important part in this.
The ME Association will continue to campaign for people with ME/CFS and we would urge the new Labour Government to do its very best to ensure there are no further delays in publishing the Delivery Plan on ME/CFS.
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association.
Member of the 2018-2021 NICE Guideline Committee.
Member of the 2002 Independent Working Group on ME/CFS.
 
A reminder -
The Worcestershire M.E. Social Group’s "Symptoms of M.E./CFS” Information Sheet" was updated in May 2024.  It 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).
 
Contact your local MP.  Ensure your local MP is aware of the situation.
 
•  Action for ME  •  Government U.K.  •  M.E. Association  •  MERUK 
•  MP  •  N.H.S.  

Kidderminster Shuttle: Dr Richard Taylor: Former Wyre Forest MP dies aged 89.
 
The Gibson Inquiry (2006)
The Gibson Inquiry - Dr Richard Taylor, MP for Wyre Forest, (from 2001 to 2010), was Vice chairman of this all-party Group for Scientific Research into ME (GRSME). 
Our group were invited to the Oral Hearing on 18 April, 2006. Our presentation document is on the GSRME website.  The Report was published in November 2006.

Dr Taylor is on page 11 of the Spring 2007 ME Research UK magazine - 'Breakthrough'. 
“In September 2006, Simon Winnall and Ian Winstanley embarked on a great expedition to North-East Tanzania to climb Mount Kilimanjaro, the highest peak in Africa at 5,895 m.  Simon and Ian funded the trip themselves, so all the money raised went towards our ME research programme..
Simon and Ian presented the cheque to Dr Richard Taylor, MP for Wyre Forest and Vice Chair of the Parliamentary Inquiry on Scientific Research into ME, who accepted it on our behalf at the Worcestershire ME Support Group.” 

•  A.P.P.G  •  Local News  •  MERUK  •  MP  •  Worcestershire  •  Worcestershire M.E. Support Group 

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 Worcestershire M.E. Social Group’s "Symptoms of M.E./CFS" Information Sheet has been updated, with the "Symptoms for Suspecting ME/CFS" Section of Myalgic Encephalomyelitis (or encephalopathy) / chronic fatigue syndrome: diagnosis and management: NICE guideline [NG206], published on 29 October 2021, now included on the reverse.  The updated “Symptoms of M.E./CFS” Information Sheet contains the original first page (with the header and footers updated), plus an extract from the 2021 ME/CFS NICE Guideline overleaf.

The Worcestershire M.E. Support Group produced a ‘Symptoms of M.E./CFS’ information sheet well over twenty years ago, and it continues to be available on our Group’s website in the About M.E. section.  Many people have found this information sheet useful when describing how they feel, and explaining their situations to doctors. 
 
 
The ME Association’s (MEA) website contains symptoms information from the NICE Guideline, including -
 
ME/CFS Symptoms and diagnosis

• ME/CFS and Long Covid Overview
  
• ME/CFS Symptoms & Diagnosis
  
• ME/CFS Further Information
  
• NICE Guideline ME/CFS
  

 
Also the MEA have given Key symptoms with explanations that should all be present for a diagnosis of ME/CFS including -  Debilitating fatigue;  Post-exertional malaise;  Unrefreshing or disturbed sleep;  and Cognitive difficulties.  The MEA website also contains sections on:  Other common symptoms;  Referral to ME/CFS Specialist;  and Severity of ME/CFS.
 
 
Action for M.E. (AfME) explain -
Range of symptoms
Everyone who experiences M.E. has a different pattern of illness, and symptoms and severity can fluctuate and change over time.  M.E. is not "feeling tired."
The 2021 NICE guideline for M.E. for health professionals in England and Wales instead talks about "debilitating fatigue that is worsened by activity, is not caused by excessive cognitive, physical, emotional or social exertion, and is not significantly relieved by rest."
While it’s important to find out more about the range of symptoms experienced by different people with M.E. - it is also important to know that people with M.E. may only experience a few of them and at varying levels of severity.  Always get new symptoms checked by your doctor, as they may be unrelated to M.E. Women often find that symptoms worsen at different times in their menstrual cycle.
 
AfME give detailed explanations on -  Feeling generally unwell;  Sleep disturbance;  Pain - (If pain, especially muscle pain, is more of a problem than fatigue, fibromyalgia may be an issue);  Cognitive difficulties, sometimes collectively called "brain fog";  Problems with the nervous system;  Digestive problems;  Intolerance and increased sensitivity:
 
 
ME Research UK (MERUK) also has a useful section on ‘What is ME?', and explain that ME/CFS is an illness affecting many different parts of the body, which can last for a long time in some people.
 
MERUK give detailed information on -  The main symptoms;  What is the cause?;  Living with ME/CFS;  How is ME/CFS diagnosed?;  What treatments are available?;  The role of ME Research UK;  More information about ME/CFS. 
 
MERUK state - For a more detailed explanation of ME/CFS, its symptoms and treatment, we recommend the website of the US Centers for Disease Control and Prevention.
 
 
BACME (British Association of Clinicians in ME/CFS)
In BACME’s response (pdf) to the 2021 NICE Guidance on ME/CFS, Bacme, stated that the NICE guideline provides information regarding diagnosis including the importance of recognising the key symptom of Post-Exertional Malaise.
 
This response also states that “The symptoms of ME/CFS are not caused by deconditioning. This guideline marks the move away from using GET programmes for treating ME/CFS.  This is a move the majority of BACME members working in NHS specialist services have already made.

•  Action for ME  •  M.E. Association  •  MERUK  •  N.I.C.E.

epartment of Health Publish Interim ME/CFS Delivery Plan for Public Consultation 
ME Association (MEA)
August 10, 2023
“This interim plan sets out the current problems to be addressed and agreed actions to drive an expansion of research, better education of professionals, improvements in attitudes towards the condition and improvements to service provision. With the right advice, care and adaptations provided by the NHS, social care, education, the welfare system and employers, I am confident that people with ME/CFS can be supported to manage their symptoms as effectively as possible, contribute more to our society and maximise their quality of life. The interim plan is a significant step forward in delivering that vision.”
DHSC Interim Delivery Plan on ME/CFS: Helen Whately, Minister of State for Social Care.
 
“We know more needs to be done to understand this debilitating illness and to make sure those affected feel heard and understood by the health service and society more widely. To help us ensure this plan is as thorough and considerate of personal experience as possible in its delivery, it’s important that those living the condition, their families, carers and professionals share their views.“
Will Quince, Minister of State for Health.
 
ME Association Comment
The ME Association welcomes publication of the DHSC Interim Delivery Plan with its emphasis on:
stimulating biomedical research, 
including education on ME/CFS for all health profesionals, and 
making improvements to the care and management of adults, children and young people with ME/CFS that are based on recommendations in the 2021 NICE Guideline.
We would like to thank everyone who has been involved in producing this interim plan and Sajid Javid MP for initiating it.
 
The 8-week consultation process acknowledges that there is still work to be done and this should include:
recognising how the symptom and pathological overlaps with Long Covid can be used in research to the benefit of both groups of people.
strengthening the section on severe and very severe ME.
shortening the timeframe for completion for some of the key actions.
We look forward to shortly having a document that will help to improve the lives of everyone with ME/CFS – wherever they live in the UK.
We will produce a more detailed response during the period of consultation.
 
More information:
DHSC: Improving the experiences of people with ME/CFS: interim delivery plan | 09 August 2023
The Times: NHS told to stop blaming ME patients for being ill and improve care | 09 August 2023
Gov.UK: Government announces new plan to help those impacted by ME/CFS | 10 August 2023
Times Educational Supplement Magazine: New guidance on supporting pupils with ME and CFS | 10 August 2023
PULSE: GPs to be given training on ME/CFS to counter ‘dismissive attitudes’ | 10 August 2023
Podcast: The Week Unwrapped (16:40): #340 A new human, ME and date stacking | 11 August 2023
The Times: Sajid Javid promises radical action for patients debilitated by ME | 13 May 2022
Dr Charles Shepherd,  Trustee and Hon. Medical Adviser
 
Ministerial foreword from Helen Whately, Minister of State for Social Care, available from the MEA.
 
Plus link to -the Government's Open consultation
My full reality: the interim delivery plan on ME/CFS
Published 9 August 2023
 
 
Further information from the MEA -
 
DHSC Interim Delivery Plan on ME/CFS: Public Consultation Information
August 10, 2023
OPEN CONSULTATION
Improving the experiences of people with ME/CFS: interim delivery plan
 
The Department of Health and Social Care
“The government is committed to supporting all people living with ME/CFS. On 12 May 2022, the government announced an intention to develop an ME/CFS Delivery Plan to improve the experiences and outcomes for people with the condition.
“We are now launching a focused consultation to gather a range of views from the ME/CFS community on the proposed actions in the Interim Delivery Plan to build a picture of how far it addresses the issues most important to them and help us to identify where we need to go further.
“As the consultation survey is specifically targeting those with experience of living or working with ME/CFS, we are hoping to distribute the survey via relevant organisations and networks to reach the most appropriate audience.
“The survey will be available online at the following link and will run for a period of 8 weeks from 9 August 2023 to 4 October 2023:
 
See this MEA article for - -Frequently Asked Questions
 
 
Action for ME (AfME) Announce
 
Release of pre-consultation Delivery Plan on ME/CFS
August 09, 2023
 
Today, we welcome the release of the much-anticipated cross-Government interim delivery plan on ME/CFS which is now open for its consultation phase. The Department of Health and Social Care has launched an 8-week consultation to gather a range of views from the ME/CFS community on the proposed actions in the Interim Delivery Plan to build a picture of how far it addresses the issues most important to them and help us to identify where further action may be needed.
The release of the interim plan indicates a clear commitment to take ME/CFS more seriously and ensure lasting change for people with ME/CFS, many of whom have experienced decades of significant difficulties in accessing the support and care needed. We know it doesn’t go far enough to redress all of these issues, but it is a start, and we hope that the short-term actions identified in the Plan lead to commensurate funding for ME/CFS research with other disease areas as well as improved support.
Recent research indicates that at least 40 - 50% of people with long COVID experience similar symptoms to those with ME/CFS and we, including other charities, are seeing the demand for services and support increase significantly as a result.
 
Welcoming the publication, our CEO, Sonya Chowdhury said:
“I am delighted to see the publication of the Government’s ME/CFS Interim Delivery Plan, which outline further details on action that the Government will seek to secure change in the support and care of children and adults with ME/CFS and accelerate research. Now that the consultation phase has begun, we call on all within the M.E. community to have their voice heard and provide feedback to further strengthen the Plan.
I fully understand the complexities involved in policy development and implementation. However, we hope that the Government will expedite the implementation of the ME/CFS delivery plan post-consultation and prioritise the health and well-being of people with ME/CFS.
This is a positive step forward for people living with ME/CFS but it is only a start; much more is needed. The focus must now shift to delivery and outcomes. I look forward to continuing to work with the DHSC and other departments on the Government’s commitment to better supporting our community by delivering tangible change to ME/CFS policy across the country.”
 
We encourage you to make sure your voice is heard by completing the short survey by 4 October 2023.
 
Audio Recordings available from AfME
 
The DHSC has taken steps to ensure the accessibility of the interim ME/CFS delivery plan by producing audio recordings for each chapter. These recordings can be found on our Action for M.E. SoundCloud.
 
 
Further Information from AfME
 
Interim ME/CFS Delivery Plan: resources to help you respond
August 11, 2023
Following the launch of the much-anticipated cross-Government interim delivery plan on ME/CFS earlier this week, the Department of Health and Social Care (DHSC) have been in touch to tell us about the resources they are working on to help you share your view. We are sharing this information below, and will update it as further resources are added.
 
Information on - Completing the survey  - Plus, alternative Versions.
 
 
The ME Research UK (MERUK) Announced
 
Delivery Plan Published - Consultation Opens
10 August 2023
 
ME Research UK welcomes the release by the UK Department of Health and Social Care (DHSC) of ‘My full reality: the interim delivery plan on ME/CFS‘.
This document has the potential to deliver concrete benefits to the lives of those affected by ME. In the foreword to the plan, the Minister writes:
 
This interim plan sets out the current problems to be addressed and agreed actions to drive an expansion of research, better education of professionals, improvements in attitudes towards the condition and improvements to service provision. With the right advice, care and adaptations provided by the NHS, social care, education, the welfare system and employers, I am confident that people with ME/CFS can be supported to manage their symptoms as effectively as possible, contribute more to our society and maximise their quality of life. The interim plan is a significant step forward in delivering that vision.
 
Unlike previous initiatives (such as the Report to the Chief Medical Officer in 2002 or the Gibson Report in 2007), the interim Delivery Plan has the distinct advantage of its remit spanning numerous government departments including the Department of Works and Pension; the DHSC; and, crucially, central funders of research – the NIHR and MRC – whose constructive involvement will be needed if aspiration is transformed to reality. In addition, the involvement, especially in the research process, of patients as co-chairs of committees has added greatly to deliberations and brough fresh perspectives and impetus.
 
ME Research UK wishes to thank all those who have contributed to the process thus far, especially the patient community, as the demand upon their time and energy has been great as the scope of the endeavour became apparent. It ought also be remembered that it was made clear that practical support such as secretarial services by the NIHR, MRC and DHSC would be limited in the extreme.
Focus now turns to public consultation and ME Research UK urges all interested parties – especially people with ME, their carers and researchers – to join ME Research UK in submitting their responses to the consultation which closes on 4 October 2023. This is an opportunity to comment, suggest and press for improvements in what is a long document.
The DHSC state that they “will use the information submitted through responses to the survey to develop the Final ME/CFS Delivery Plan for England, which we aim to publish before the end of the year”.
MERUK includes - We have summarised some of the research aspects of the interim delivery plan here
 
 
Further Information from MERUK
 
Research aspects of the DHSC interim delivery plan on ME/CFS
10 August 2023
On Wednesday 9 August 2023, the UK Department of Health and Social Care (DHSC) released ‘My Full Reality – the interim delivery plan on ME/CFS‘.
 
In the words of the foreword, the Interim Delivery Plan “sets out the current problems to be addressed and agreed actions to drive an expansion of research, better education of professionals, improvements in attitudes towards the condition and improvements to service provision”.
 
We have summarised some of the key aspects with regard to research that were included in the plan.  The document starts by setting out four ‘problem statements’:

1. There is low capacity and capability among the research community to respond to research needs in this area.
2. Historically, there has been low awareness of the need and scope for research into ME/CFS across the health and care research landscape.
3. There has been a relatively low amount of biomedical research funded on ME/CFS, compared with disease burden.
4. There remains a lack of trust between different stakeholders, including a perception of bias, expressed by patient and carer groups, about prioritisation and the peer-review process when applied to ME/CFS research.

 
The UK Clinical Research Collaboration (UKCRC) has established a two year Research Working Group into ME/CFS, bringing together the major stakeholders influencing clinical research in the UK. The Working Group has committed to six ‘rapid actions’ which will “provide the foundation of evidence generation and insight into the medium and long-term actions”. Subgroups have been set up to work towards these actions.

1. The DHSC will hold workshops with funders, academics, and people with ME/CFS on how to develop research questions to respond to the Priority Setting Partnership (PSP) Top Ten Plus priorities and initiate new clinical studies.
2. The DHSC will work with research funders to commission a landscaping review of national and international work underway in ME/CFS, map PSP research priorities against these and establish evidence gaps.
3. The Medical Research Council (MRC) and the National Institute for Health and Care Research will raise awareness of research funding opportunities for researchers and highlight the PSP Top Ten Plus ME/CFS research priorities publicly and with decision making bodies.
4. A charity and patient group collaboration will support funders to raise awareness of mechanisms for effective patient and public involvement and engagement (PPIE) in research, ensuring diversity across protected characteristics, geographical areas and severity and duration of disease.
5. The DHSC will support the Research Working group to develop case studies of research which show good practice, including effective PPIE.
6. The DHSC will support the Research Working group to engage with the initiatives to educate clinicians/ practitioners about ME/CFS.

 
The ultimate aims of the interim plan with regard to research are summed up in the following statement:
We will know that the interim plan has delivered the necessary changes when there is greater awareness of the need and scope for research among the research community, so that the research and evidence needs for ME/CFS are recognised and addressed. This will mean that researchers from a wide range of relevant specialisms and disciplines are producing high-quality research, commensurate with disease burden, co-produced with people with personal experience. Research into ME/CFS is exploring diversity and inclusivity in the population, including protected characteristics, disease severity and duration. We will also have a sustainable pipeline of research, the findings of which feed into policy and practice for ME/CFS.
The DHSC is now seeking views on this interim delivery plan, and encourages people to submit their responses by 4 October 2023. This is an opportunity to comment, suggest and press for improvements, as ME Research UK will be doing.
 

To view Comments/Discussions
Science for ME
 
Discussions on "UK: UK Government ME/CFS Delivery Plan (includes Attitudes and Education Working Group and Living with ME Working Group)" are available.


Further information -
 
World M.E. Day Statements
18/5/2022
 (Including - Health and Social Care Secretary, and MP for Bromsgrove, Sajid Javid.)
 
Sajid Javid ‘Rethinking ME’ after young relative’s battles
1/6/2022
The Times

•  Action for ME  •  Government U.K. 
•  M.E. Association  •  MERUK 
•  MP  •  National Newspapers  •  N.H.S.

World ME Day  - The disease where pushing harder can make you sicker.
On May 12th each year, World ME Alliance focuses on learning about, raising awareness of, and campaigning around Myalgic Encephalomyeltitis.
 
World ME Alliance - (We are a unique alliance of ME organisations from around the world.  Our membership is made up of senior leads/representatives from national ME organisations, working together to achieve change for people with ME at a national and international level.) 
For 2023 World ME Alliance are focusing on the key aspect of ME that everyone should know about: that pushing harder can make you sicker.  The technical term for this is post-exertional malaise (PEM).
Post-exertional malaise (PEM) is something that everyone with ME experiences. 
It is a worsening of symptoms after physical, mental, or emotional exertion that would not have caused a problem before the illness and is the hallmark symptom of ME. For some patients, sensory overload (light and sound) can induce PEM. PEM intensifies the severity of symptoms and may last days, weeks, or permanently.  The symptoms typically begin to worsen 12 to 48 hours after the activity or exposure.
 
The World ME Alliance website gives news from around the world, and suggestions as to how you can be involved.
 
 
ME Research UK publicise - Walk for ME 2023 - 
 
The aim of Walk for ME is to get as many people as possible - especially the family and friends of those affected by ME -  to do a sponsored walk, run, swim or ride of whatever length they feel comfortable with.
There is no minimum distance, no targets, and, although it runs principally through ME Awareness Week (2nd week in May), no set dates. You choose when you wish to walk, the distance, the location and the charity to support.  No matter what you do step-by-step, you will be supporting a great cause and also raising awareness with every stride.
 
It is hoped that as many friends and loved ones as possible will do a sponsored walk or other sponsored event during ME Awareness Week, although you can also do a walk, run, swim or ride at any other time if you prefer.
“The whole idea is that the friend or family member is doing something that their loved one would love to be able to do but can’t.“
Further information on the Walk for ME Just Giving page.
 
 
#MillionsMissing 2023! Announce -
#MillionsMissing 2023 will be held on May 12, 2023, at the Washington Monument in Washington, DC.  The event will feature an art installation and a press conference. 
#MEAction will host #MillionsMissing 2023 in partnership with Body Politic to demand bold, urgent governmental action for the millions of people living with myalgic encephalomyelitis (ME), Long COVID, and other infection-associated complex chronic diseases.
The pandemic showed the public what people with ME already knew: that the government, our healthcare systems, and society at large have systematically deprioritized people with infection-associated chronic illnesses.
The #MillionsMissing 2023 website explains how you can see the press conference, and become involved.
 
 
Action for M.E. (AfME) announce -
Blue Sunday;  The Tea Party for M.E.; 14th May 2023.
 
Champion fundraiser Anna Redshaw’s Blue Sunday Tea Party is celebrating its 10th anniversary in 2023 and has so far raised over £70,000 for M.E. charities across the world. Join Anna and Action for M.E. this May to raise vital funds for people living with M.E., whilst enjoying tea, cake and community.
Anna has been running the Blue Sunday Tea Party for M.E. since 2013, as a way to fundraise but also to break the isolation so often experienced by people with M.E. You can read more about how the Blue Sunday Tea Party started on Anna’s blog.
Full information on How To Take Part available from AfME 
 
 
The ME Association (MEA) announcement -
ME Awareness Week - pleasant surprises from the Gloucestershire Friendship Group -
 
If paradise could be twice as nice, you’ll never find a better bunch than the Gloucestershire ME/CFS Friendship Group. They’ll be holding their annual ME Awareness Week bash on Saturday, 13th May and this year they’ve got a couple of surprises up their sleeves.
That afternoon, members will be out in force in Quedgeley Community Centre, near Gloucester, for a natter, a cuppa, a slice or two of some good home-bakes and a raffle stocked with over 20 prizes. The event will be held between 1.30 and 3.30pm.
 
 
Watch out for further announcements during week, plus a reminder -
Please join us during M.E. Awareness Week, when we look forward to greeting Marina Townend, Specialist Occupational Therapist/Team Lead, of the Worcestershire & Herefordshire ME/Chronic Fatigue Syndrome and Post-Covid Syndrome Services.
 
Our Afternoon Café Meeting will be held on Wednesday, 10 May, from 2.00 - 3.30 pm, in the Next Café, above the Next store at the Elgar Retail Park, Blackpole, Worcester, WR3 8HP.  Join us in the Next Café, above the Next store at the Elgar Retail Park, Blackpole, Worcester, WR3 8HP (There is a lift and escalator in the store, plus plenty of parking, including blue badge spaces near the main entrance.)  
 
All people with M.E., CFS, FMS, and their carers, friends and relatives, are welcome at all Worcestershire M.E. Social Group gatherings - please join us whenever it suits you.
Our recent Worcester Afternoon Café Meetings blog, gives future dates, and further information.
 
Marina Townend, recently updated us on the situation at the Herefordshire and Worcestershire NHS ME/CFS Local Services.  This is given in our recent Worcestershire NHS ME/CFS Local Services News blogs in April and March .
 
 
BACME (The British Association of Clinicians in ME/CFS) which is a multidisciplinary organisation for UK professionals who are involved in the delivery of clinically effective services for patients with ME/CFS, also explains -
Herefordshire and Worcestershire ME/CFS Service
The service supports people with a confirmed diagnosis of ME/CFS, age 18 and over, who have a GP based in Herefordshire or Worcestershire.  It offers therapeutic intervention by Occupational Therapists and Psychologists on a 1:1 and group basis, much of which is provided virtually (video or telephone call), although clinic appointments are available if preferred.  We can also undertake home visits if clinically indicated.


•  Action for ME  •  Hereford  •  Local News 
•  #MEAction  •  M.E. Association  •  Meetings 
•  MERUK  •  N.H.S.  •  Post COVID Syndrome (Long COVID)  
•  Worcestershire •  Worcestershire M.E. Social Group

(Including - Health and Social Care Secretary, and MP for Bromsgrove, Sajid Javid.)
 
NICE (National Institute for Health and Care Excellence)
NICE outlines steps needed to put ME/CFS guideline into practice
NICE has today, International ME Awareness Day (Thursday, 12 May 2022) published its implementation statement which sets out the practical steps needed to put its recent guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) into …..
 
The British Medical Journal response to the NICE announcement
NICE sets out steps NHS must take to implement ME/CFS guidelines
The National Institute for Health and Care Excellence has issued an unprecedented implementation statement1 setting out the practical steps needed for its updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) to be implemented by the NHS. 
Such statements are only issued when a guideline is expected to have a “substantial” impact on NHS resources, and this is thought to be the first. It outlines the additional infrastructure and training that will be needed in both secondary and primary care to ensure that the updated ME/CFS guideline, published in October 2021, can be implemented.  The statement is necessary because the 2021 guideline completely reversed the original 2007 guideline recommendations that people with mild or moderate ME/CFS be treated with cognitive behavioural therapy (CBT) and graded exercise therapy (GET). Instead, the 2021 guideline says …
 
 
On M.E. Awareness Day, 12 May, Action for ME (AfME) announced:.
Transforming lives on World M.E. Day
May 12, 2022
Action for M.E. welcomes the Department of Health and Social Care’s pioneering statement on Myalgic Encephalomyelitis (M.E.) on the first ever World M.E. Day.
 
Ministers set out plans for a new cross-Government delivery plan on M.E. for England, aligning with other devolved nations of the UK. The statement, which was made to Parliament today by Health Minister Lord Kamall, is the first time that Government has made an explicit and dedicated statement on M.E.   It’s been backed by a pledge by Health Secretary Sajid Javid to “drive forward progress” and “improve experiences and outcomes for sufferers”.
 
The Government’s statement to parliament also welcomes the launch of the M.E./CFS Priority Setting Partnership (PSP) report Prioritise ME, which sets out the top ten M.E. research priorities identified entirely by people with M.E., carers and healthcare professionals. This initiative, led by Action for M.E. and facilitated by the James Lind Alliance completed a participatory process to identify the Top 10+ M.E./CFS research priorities to change the M.E./CFS research landscape in the UK and beyond.
Questions that Action for M.E. want addressed include whether there is a genetic element to the M.E., if a single test could be developed and whether existing drugs could be used to treat the condition.  The list of priority research areas, as well as downloadable and audio versions of the project report can be found at on the PSP website.
 
Health and Social Care Secretary Sajid Javid said:
“The UK is a world leader in research and Action for M.E.’s priorities lay out clear next steps in learning more about Myalgic Encephalomyelitis (M.E.). M.E. can be an incredibly disabling condition and not enough is known about it – we must drive forward progress in this area to ensure those living with the condition can be better treated and supported. I am committed to improving the lives of people affected - later this year we will develop a delivery plan to understand how we can improve experiences and outcomes for sufferers.”
 
Welcoming the Department of Health and Social Care’s statement and launching the ten priorities, Sonya Chowdhury, Chief Executive of Action for M.E. said:
“For too long people with M.E. have struggled to get their condition diagnosed, understood and acknowledged. On the the first World M.E. Day, it is fantastic to see that this devastating and disability condition is being explicitly acknowledged by Government as priority. This announcement complements the work undertaken through our Priority Setting Partnership, where people of all ages with M.E. have identified their Top 10 list of priorities that would have most impact on their lives to shape future research.  The report has been a powerful opportunity for the voices and lived experiences of children and adults with M.E. to be heard, and empower them to set the priorities for M.E. research themselves, and we look forward to working with Government on their action plan. Through greater partnership working we hope to able to better understand this debilitating disease, with the aim of finding effective treatments and ultimately a cure.”
 
 
Announcements from the ME Research UK (MERUK)
 
UK Parliament and ME/CFS 13 May 2022
Yesterday’s (12 May 2022) highly welcome statement from the Rt Hon Sajid Javid, Secretary of State for Health and Social Care in which he acknowledged
Firstly, that we do not know enough about ME/CFS, which must change if we are to improve experiences and outcomes. Secondly, we must trust and listen to those with lived experience of ME/CFS.
is not the only parliamentary initiative on ME/CFS at Westminster. On 11th May, MP Carol Monaghan tabled an Early Day Motion for ME Awareness Week
 
Perth turns blue for International ME Awareness Day 2022 13 May 2022
Thanks to Perth and Kinross Council, various landmarks in Perth turned blue for International ME Awareness Day or purple to mark Fibromyalgia Awareness Day on 12th May 2022.
 
ME/CFS Priority Setting Partnership 13 May 2022
The results of the ME/CFS Priority Setting Partnership were announced yesterday (12th May 2022, International ME Awareness Day) as the culmination of a process to “enable clinicians, patients and carers to work together to identify and prioritise evidence uncertainties in particular areas of health and care that could be answered by research”.
 
Facilitated by The James Lind Alliance, the JLA method is designed to change the way research funding is granted, and to “raise awareness of research questions which are of direct relevance and potential benefit to patients and the clinicians who treat them”.
These priorities came out of a process which gave a central voice to people with ME/CFS, and theirs are the voices that matter most. ME Research UK is encouraged that the outcome validates and strengthens our single-minded focus on funding relevant and rigorous biomedical research into the disease.
The results of the Priority Setting Partnership provide a useful backdrop as we continue our work and build on our unique position as a pre-eminent funder of ME/CFS research across the world.
 
Top 10 priorities
(We have added links to examples of research that ME Research UK has supported in these areas.)

1. What is the biological mechanism that causes post-exertional malaise (symptoms caused or made worse by physical, mental or emotional effort, which can be delayed) in people with ME/CFS? How is this best treated and managed?
2. Which existing drugs used to treat other conditions might be useful for treating ME/CFS, such as low dose naltrexone, or drugs used to treat Postural Orthostatic Tachycardia Syndrome (POTS)?
3. How can an accurate and reliable diagnostic test be developed for ME/CFS?
4. Is ME/CFS caused by a faulty immune system? Is ME/CFS an autoimmune condition?
5. Are there different types of ME/CFS linked to different causes and/or how severe it becomes? Do different types of ME/CFS need different treatments and/or have different chances of recovery?
6. Why do some people develop ME/CFS following an infection? Is there a link with long-COVID?
7. What causes the central and peripheral nervous systems (brain, spinal cord and nerves in the body) to malfunction in people with ME/CFS? Could this understanding lead to new treatments?
8. Is there a genetic link to ME/CFS? If yes, how does this affect the risk of ME/CFS in families? Could this lead to new treatments?
9. What causes ME/CFS to become severe?
10. How are mitochondria, responsible for the body’s energy production, affected in ME/CFS? Could this understanding lead to new treatments?

10+. Does poor delivery or use of oxygen within the body cause ME/CFS symptoms? If so, how is this best treated?
 
 
Many of the ME Association’s (MEA) announcements [see MEA website for full details]
 
Important Ministerial Statement on ME/CFS May 12, 2022
A statement has been made by Sajid Javid, the Secretary of State for Health and Social Care, which is copied here and can be read directly from the government site from the link below. [see MEA website].
 
NICE outlines steps needed to put ME/CFS guideline into practice
May 12, 2022
Implementation Statement from The National Institute for Health and Care Excellence
NICE has today, International ME Awareness Day (Thursday, 12 May 2022) published its implementation statement which sets out the practical steps needed to put its recent guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) into practice.
 
Priority Setting Partnership
PSP for ME: Top ME/CFS research priorities identified May 12, 2022
The Top 10+ priorities for research around ME / CFS have been identified.
These priorities have been determined as a result of rigorous work engaging with thousands of people living with myalgic encephalomyelitis, their families and carers, and health professionals working to support these people.
The report is supported by The Rt Hon, Sajid Javid, MP, Secretary of State for Health and Social Care who states:
“I welcome the publication of this Priority Setting Partnership which sets out the Top 10+ research priorities for ME/CFS. The Government recognises that myalgic encephalomyelitis (ME) is an under-researched area and pledges to support research funders and the academic community to respond to this independent report.”
The Rt Hon, Sajid Javid, MP, Secretary of State for Health and Social Care
 
 
The Times: Sajid Javid promises radical action for patients debilitated by ME
May 13, 2022
Sajid Javid has promised a radical new approach to the debilitating illness myalgic encephalomyelitis, making the government a world leader in tackling what he called “an incredibly disabling condition”.  The health secretary marked World ME Day yesterday by telling parliament he was “committed to better care and support for people living with ME and their families”.
Read the full article from The Times: Sajid Javid promises radical action for patients debilitated by ME | 13 May 2022
 
Times article: Relative’s suffering triggered Sajid Javid’s ME crusade
May 14, 2022
 
Times article: My daughter couldn’t be saved but there’s hope for other ME patients May 14, 2022
Tragic news from Sean O’Neill at The Times. The ME …
 
 
Science for ME included Sajid Javid’s statement, plus discussion
UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022
 
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.

•  Action for ME  •  •  Government U.K.  •  M.E. Association  •  MERUK  •  MP  •  National Newspapers  •  N.I.C.E. •  Research  •  Worcestershire M.E. Social Group

 See ME Awareness Week news items on M.E./Fibromyalgia Charities websites  - see 'M.E. /C.F.S. Organisations', and 'UK Research Organisations' websites links and become involved where you can.
 
International May 12th Awareness Day
This year, 2022, marks the 30th anniversary of International May 12th Awareness Day. The idea originated with Thomas Michael Hennessy, Jr., the founder of Repeal Existing Stereotypes about Chronic Immunological and Neurological Diseases (no longer active). Tom Hennessy was based in the USA but understood that it needed to be an international event; he designated the 12th of May 1992 as the International Awareness Day for the spectrum of illnesses he called Chronic Immunological and Neurological Diseases (CIND).
 
May 12 was chosen as it coincided with the birth date of Florence Nightingale, the celebrated English social reformer and statistician, and the founder of modern nursing. Nightingale became chronically ill in her mid-thirties after returning from the Crimean War; the M.E.-like illness often left her bedridden during the last 50 years of her life. You will find a more detailed account in A Short History of Myalgic Encephalomyelitis.

The ME Association ask you to -
Make a wish and join in ME Awareness Week 2022
May 8, 2022
ME Awareness Week starts tomorrow, Monday 9th May, and continues through to a fantastic finale on Sunday, 15th May. During the week, we will be asking you to make frequent use of the hashtag #JustOneWish.
It's the thirtieth anniversary of the event and – with Long Covid rampant round the world – the number of people being diagnosed with ME/CFS is growing exponentially day-by-day.
There are said to be 1.7m people in the UK alone who, months after being infected, still have symptoms of Long Covid - which in so many respects looks just like ME/CFS.
Please do something to help the ME Association meet the challenge of supporting these ever-growing numbers now and in the years ahead.
It's not too late to organise your own fundraiser to support us during ME Awareness Week. Download this little leaflet (pdf) which has lots of ideas for easy-to-arrange fundraising events.
 
Use the hashtag #JustOneWish whenever you can during the week.
The wish is what we have all been crying out for over the years - safe and effective treatments that make people with ME/CFS better.
With our links into the research community, the ME Association is well placed to generate funds that leverage new and promising biomedical research.
In the run-up to the week, we shall be highlighting lots of exciting fundraising going on all round the UK and putting up reminders about the big job of raising awareness of ME/CFS that still remains to be done.
This is your week. It's also the best time of the year to show that you are proud of your achievements and tell the world you're not yet prepared to be forgotten. Please make use of it.
Tony Britton, Fundraising and PR Manager
[email protected] Mob: 07946 760 811

Last week, Action for ME launched their new five-year strategy, Shaping our future together. -
Shaping our future together: our call for a national strategy for M.E.
May 05, 2022
As we approach the World ME Day on 12 May, we launch Action for M.E.’s new five-year strategy, Shaping our future together. We also have a simple-text version.  Developed in partnership with people with M.E. of all ages, carers and professionals, it sets out four ambitious outcomes which we believe will help us end the decades of ignorance, injustice and neglect faced by people with M.E.
 
Sonya Chowdhury, CEO, Action for M.E. says:
We are calling for a national strategy for M.E. led by the UK Government with a clear implementation plan and significant investment.  Action for M.E. alongside many from the M.E. community work hard behind the scenes to advocate for people with M.E. at all levels, and we hope that we will soon see a long overdue commitment to end the ignorance, injustice and neglect experienced by children and adults with M.E.  We will not stop until this happens.

Sunday 15 May
ME Research UK (MERUK) are publicising -
Blue Sunday- The Tea Party for M.E.
22 April 2022
Anna Redshaw’s ‘Blue Sunday’ Tea Party For M.E. in aid of various ME charities (including ME Research UK) will be held on Sunday 15th May 2022.
As Anna explains
On Sunday 15th May, people from all over the world will meet up online to chat and leave comments on each other’s posts. While doing so they’ll be enjoying tea and cake (or whatever their delicate digestive systems can manage) and donating what they can to M.E. charities and causes.
We are so often excluded from events because our symptoms can make it so difficult for us to leave the house, let alone spend an hour or two at an event. That’s why the Tea Party For M.E. has always had an online/virtual element running alongside any in-person tea parties.
 
The premise is simple.

• Wear something blue (pyjamas count!)
• Dig out your best cups and saucers
• Bake or buy your favourite cake
• Post a photo of you little tea party set-up to social media
• Invite your family and friends to enjoy tea and cake with you, in person or via video call
• Donate the price you’d pay in a café
• Connect with others online who are doing the same, by commenting on their photos and posts
• Feel a part of the in-person tea party as Anna uploads photos and videos from the event she host every ‘Blue Sunday’.

You can share your photos in the Blue Sunday 2022 Facebook Event or on Twitter and/or Instagram using the hashtags #TeaPartyForME2022 #BlueSunday2022
You can donate to ME Research UK directly via JustGiving.

Our local ME/CFS Service
Last month, we publicised the ME Association’s (MEA) request for news https://worcsmegroup.weebly.com/blog/me-awareness-week-2022-9-15-may about your local M/CFS Specialist Service and/or Long Covid Clinic.
Since then, we announced that the ME/CFS Service at Worcestershire Acute Hospital had been decommissioned.
 
How has this affected you?  Is there anything you would like to share, either on this website, or with the MEA?  Just get in touch 


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•  Post COVID Syndrome (Long COVID) Myalgic encephalomyelitis (or encephalopathy)/ chronic fatigue syndrome: diagnosis and management.
NICE guideline [NG206] Published: 29 October 2021.
 
This guideline covers Diagnosing and Managing Myalgic Encephalomyelitis (or Encephalopathy)/Chronic Fatigue Syndrome (ME/CFS) in children, young people and adults.  It aims to improve awareness and understanding about ME/CFS and when to suspect it, so that people are diagnosed earlier.  It includes recommendations on diagnosis, assessment and care planning, safeguarding, access to care and managing ME/CFS and its symptoms. 
These recommendations were developed based on evidence reviewed before the COVID-19 pandemic.  We have not reviewed evidence on the effects of COVID-19, so it should not be assumed that these recommendations apply to people diagnosed with post-COVID-19 syndrome.  NICE has produced a guideline on managing the long-term effects of COVID-19.
 
Recommendations.  This guideline includes recommendations on:

• suspecting ME/CFS and diagnosis
• information and support, including advice when ME/CFS is suspected
• assessment and care and support planning
• safeguarding
• access to care and support
• managing ME/CFS
• symptom management
• flare-ups and relapse
• care for people with severe or very severe ME/CFS

 
Also from the National Institute for Health and Care Excellence -
NICE ME/CFS guideline outlines steps for better diagnosis and management
NICE has today (29 October 2021) published its updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS).
28 October 2021
It is estimated that there are over 250,000 people in England and Wales with ME/CFS, with about 2.4 times as many women affected as men.
The guideline covers every aspect of ME/CFS in children, young people and adults from its identification and assessment before and after diagnosis to its management, monitoring and review.
NICE continued by giving statements from -
Paul Chrisp, director of the Centre for Guidelines at NICE, Peter Barry, Consultant Clinical Advisor for NICE and chair of the guideline committee, and Baroness Finlay, Consultant in Palliative Medicine, Clinical Lead for Palliative Care for Wales, Velindre NHS Trust, and vice-chair of the guideline committee.
 
The ME Association’s (MEA) announcement -
The new NICE guideline on ME/CFS is published!
October 29, 2021
NICE have now published the final version of the new guideline.
READ NICE GUIDELINE
Dr Charles Shepherd, who was a member of the committee that prepared the new guideline, comments:
People with ME have had to live with a NICE guideline for almost 15 years that was unfit for purpose - because it recommended treatments that were either ineffective or harmful.
After a very thorough review of all the evidence - from clinical trials, experts and patients - we now have a new guideline that has reversed these recommendations and should be widely welcomed by people with ME
In particular the new guideline…..

• Recognises that ME is serious and complex medical disease
• Emphasises the need for early and accurate diagnosis – preferably within 3 months of the onset of symptoms, which normally follow an acute viral infection, and where there are important overlaps with Long Covid.
• Provides sensible guidance on activity and energy management in order to avoid symptom exacerbation and no longer recommends GET.
• Recognises the special problems faced by children and those with severe ME.

The next challenge involves educating and training all health professionals on how to diagnose and manage ME and setting up a full network of hospital-based referral services where GPs can refer for further help.  We will be issuing more detailed reaction in due course
Charles Shepherd,  Hon Medical Adviser MEA
 
Action for ME’s (AfME) Announcement -
NICE publish guideline 
October 29, 2021
Action for M.E. is delighted, as are the other members of Forward-ME, to see the long-awaited guideline on diagnosing and treating M.E be published by NICE. The publication follows a roundtable meeting held last week where Action for M.E. and other members of Forward-ME discussed the key issues.
Doctors, and people with ME* welcome the new NICE guideline on ME/CFS, which brings major improvements to the diagnosis, management, and support for people with ME.
 
The new guideline sets out a significant change in approach:

• Recommending ‘Energy Management’ techniques to avoid ‘Post-Exertional Malaise’ and exacerbation of symptoms. This approach recommends people with ME plan their physical and cognitive activities to stay within their energy limits, incorporating rest where necessary. This is also known as ‘Pacing’.
• Maintains the use of Cognitive Behavioural Therapy (CBT) only to help people cope with the distress which can accompany a long-term condition, but recognises that CBT cannot cure ME.
• Child safeguarding is significantly improved. Some parents of children with ME have been subjected to inappropriate child protection orders, and threatened with the removal of their children, in the belief that the parents had caused a ‘fabricated or induced illness’.

The recommendations on ‘Energy Management’ will also help people with Long-Covid who experience Post-Exertional Malaise (PEM), many of whom have reported that ‘Graded Exercise Therapy’ worsened their condition, and their symptoms were dismissed as anxiety
This recommendation is a clear break from the past. Previously, people with ME were offered ‘Graded Exercise Therapy’ (GET), based on a hypothesis that they were deconditioned. NICE found the evidence for this to be poor quality, and many people with ME reported that GET caused serious harm.
The new guideline on ME/CFS was due to be published in August, but NICE ‘paused’ the release following intervention from some clinicians. After a round-table with representatives from the ‘Royal Colleges’ and ME charities, NICE is now confident that the guideline can be fully implemented.
“The new NICE guideline is welcomed because it acknowledges the truth of people’s experiences, and creates a foundation for hope that future children and adults with ME will not repeat the anguish of the past.” (Sonya Chowdhury, CEO, Action for ME)
“The Guideline should drive better acceptance of ME as serious medical condition and encourage doctors to personalise care based on individual needs. It is a real opportunity for doctors to transform the care patients receive.” (Dr David Strain, Medical Advisor: Action for ME)
We have compared the 2007 versus the 2021 to share the differences and key points of the new guideline. You can read this comparison here.
NOTES:

• ME/CFS, short for ‘Myalgic Encephalomyelitis’/ ‘Chronic Fatigue Syndrome’, is a chronic disease characterised by long-term, debilitating loss of energy, often accompanied by pain. The defining symptom of ME is ‘Post-Exertional Malaise’, the disproportionate worsening of symptoms after exertion that can last days, months or years.
• People with ME often experience other symptoms such as cognitive dysfunction (known as ‘brain fog’), heart rhythm disorders and neurological effects. People with severe ME can be bed-bound for years, with hyper-sensitivity to light and sound. Some require tube-feeding.
• There is currently no cure for ME, but effective management can reduce symptoms.
• ME charities avoid the phrase ‘Chronic Fatigue Syndrome’ because ‘fatigue’ under-represents the severity of the disease and ignores many of the symptoms.
• Forward-ME represents national ME charities, co-ordinating activity to support people with ME.

 
ME Research UK’s (MERUK) Announcement -
Our response to the updated NICE guideline 
29 October 2021

• Download the new guideline here
• Read NICE’s official press release here
• Read Forward-ME’s response here

 
Today’s publication by NICE of its updated ‘Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management’ clinical guideline marks a significant step in both the acceptance of ME as a physical illness and the recognition of appropriate treatment needs of those affected by the condition.
We broadly welcome this significant update and improvement to the previous 14-year-old document, but it marks only the beginning of the transformation needed for ME to be more fully understood and, ultimately, for a cure to be found.
 
NICE’s recommendations highlight the need for research into diagnostic criteria and tests, as well as health-outcome measures, but these will not be fulfilled without researchers, healthcare professionals and funders working together to understand the causes of the illness and the effects it has on bodily systems.
Research from numerous studies informed the changes to the guideline, but it is clear that further progress depends on increased research and the availability of funding to make this work a reality. This is where ME Research UK stands ready.
Having invested over £2 million in worldwide research to date, with 10 ongoing studies, 2 newly funded projects starting this month and PhD funding available, we have funded more high-quality biomedical research into ME than any other charitable body outside the USA.
To date, the research we have funded has centred around the autonomic nervous system, the immune system, the circulatory system, the brain, genetics and mitochondrial dysfunction – all vital areas of research about the causes of ME. However, these results need to be built upon by those currently working in ME and those in other fields so that more vital breakthroughs can be made.
 
BACME’s announcement -
The new NICE Guideline on ME/CFS was published on 29th October 2021
This is BACME's response to the publication:
BACME welcomes the new NICE Guidance on ME/CFS in the hope that this will support continued progress in improving the quality of life of all people who have the complex illness ME/CFS.  Clinicians working in NHS specialist ME/CFS services strive to provide high quality care and support to people with ME/CFS while recognising that there is still a long way to go with our understanding of the condition and we do not yet have a robust evidence base on which to guide treatments and therapy approaches.
 
The new NICE guideline provides information regarding diagnosis including the importance of recognising the key symptom of Post-Exertional Malaise.  The guideline has also clarified the use of the term Graded Exercise Therapy (GET) and,in a change from the previous guideline, it has now restricted use of the term GET todescribe therapy programmes based on treating deconditioning. The symptoms of ME/CFS are not caused by deconditioning.
This guideline marks the move away from using GET programmes for treating ME/CFS.
This is a move the majority of BACME members working in NHS specialist services have already made.  BACME welcomes the fact the new NICE guideline specifies that clinicians from all disciplines delivering care to people with ME/CFS should have specialist knowledge of the condition.
BACME continues to support research which aims to provide further understanding of the underlying pathological processes that generate the symptoms experienced by people with ME/CFS in the hope this will also lead to more refined therapeutic approaches.
BACME recognises the importance of providing confident support to people with ME/CFS now and would like to see increased investment in specialist service provision to ensure equitable access for all people with ME/CFS.
BACME will use the new NICE guideline as a foundation on which to build further clinical guidance on the delivery of care to people with ME/CFS and work to ensure that the patient story is heard and embedded in the future of ME/CFS care.
 
Forward-ME Announcement -
New NICE Guidelines on ME: Forward-ME Statement & Media Support
Oct 29th 2021
NICE Publishes new Guideline on ME/CFS*, driving major improvements in care
Press Statement from Forward-ME, embargoed until publication of NICE guidelines.
Doctors, and people with ME* welcome the new NICE guideline on ME/CFS, which brings major improvements to the diagnosis, management and support for people with ME.
 
The new guideline on ME/CFS sets out a significant change in approach:

• Recommending ‘Energy Management’ techniques to avoid ‘Post-Exertional Malaise’ and exacerbation of symptoms. This approach recommends people with ME plan their physical and cognitive activities to stay within their energy limits, incorporating rest where necessary. This is also known as ‘Pacing’.
• Maintains the use of Cognitive Behavioural Therapy (CBT) only to help people cope with the distress which can accompany a long term condition, but recognises that CBT cannot cure ME.
• Child safeguarding is significantly improved. Some parents of children with ME have been subjected to inappropriate child protection orders, and threatened with the removal of their children, in the belief that the parents had caused a ‘fabricated or induced illness’.

The recommendations on ‘Energy Management’ will also help people with LongCovid who experience Post-Exertional Malaise (PEM), many of whom have reported that ‘Graded Exercise Therapy’ worsened their condition, and their symptoms were dismissed as anxiety.
This recommendation is a clear break from the past. Previously, people with ME were offered ‘Graded Exercise Therapy’ (GET), based on a hypothesis that they were deconditioned. NICE found the evidence for this to be poor quality, and many people with ME reported that GET caused serious harm.
The new guideline on ME/CFS was due to be published in August, but NICE ‘paused’ the release following intervention from some clinicians. After a round-table with representatives from the ‘Royal Colleges’ and ME charities, NICE is now confident that the guideline can be fully implemented.
 
COMMENT:  “The new NICE guideline is welcomed because it acknowledges the truth of people’s experiences, and creates a foundation for hope that in the future, children and adults with ME will receive an improved standard of care and support.” (Sonya Chowdhury, CEO, Action for ME)
“We hope and believe the Guideline will provide much needed stimulus for substantial, publicly funded biomedical research into the causes, consequences and treatment of this disease.” (Jonathan Davies, ME Research UK)
“This is a very special day for people with ME – publication of a new evidence-based NICE guideline which confirms that this is a serious and very debilitating medical disease. I welcome the emphasis on early and accurate diagnosis and the need to provide early guidance on symptom management when people are not recovering from a viral infection and a diagnosis of ME is suspected.” (Dr Charles Shepherd, Medical Advisor, ME-Association)
“The Guideline should drive better acceptance of ME as serious medical condition and encourage doctors to personalise care based on individual needs. It is a real opportunity for doctors to transform the care patients receive.” (Dr David Strain, Medical Advisor: Action for ME)
*NOTES:

• ME/CFS, short for ‘Myalgic Encephalomyelitis’/ ‘Chronic Fatigue Syndrome’, is a chronic disease characterised by long-term, debilitating loss of energy, often accompanied by pain. The defining symptom of ME is ‘Post-Exertional Malaise’, the disproportionate worsening of symptoms after exertion that can last days, months or years.
• People with ME often experience other symptoms such as cognitive dysfunction (known as ‘brain fog’), heart rhythm disorders and neurological effects. People with severe ME can be bed-bound for years, with hyper-sensitivity to light and sound. Some require tube-feeding.
• There is currently no cure for ME, but effective management can reduce symptoms.
• ME charities avoid the phrase ‘Chronic Fatigue Syndrome’ because ‘fatigue’ under-represents the severity of the disease and ignores many of the symptoms.
• Forward-ME represents national ME charities, co-ordinating activity to support people with ME.

 
Two further MERUK articles today
 
Updated NICE guideline: recommendations for research 
29 October 2021 (ME Research UK)
While the updated NICE guideline on ME/CFS is focused on the diagnosis and management of the illness, it acknowledges that there is still much to learn about it, and therefore makes some useful recommendations for research.
 
Top 10 takeaways from the updated NICE guideline
29 October 2021 (ME Research UK)
Today’s publication of the updated NICE guideline on ME/CFS marks a significant step in the acceptance of ME as a physical illness and the recognition of appropriate treatments for people affected by the condition. There are marked changes from the previous version in how people are to be diagnosed and what treatments can be offered. Here are our top ten takeaways from the new guideline.
 
 
Today’s Press:
 
BBC News: Chronic fatigue guidelines scrap ME exercise therapy advice
 
The Guardian | ME / Chronic fatigue syndrome:  ME exercise therapy guidance scrapped by Health watchdog Nice
 
INEWS:  Chronic fatigue syndrome: controversial exercise therapy removed from new treatment guidelines
 
Daily Mail:  Doctors are told NOT to prescribe exercise to patients with ME  - even though critics say it's the only therapy known to help.


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