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.

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


•  A.P.P.G   •  Government U.K.  •  M.E. Association  •  MP 
•  National Newspapers  •  N.I.C.E.
•  Parliament U.K.  •  Research 

Action for ME (AfME) and the ME Association (MEA) give their immediate reactions. 
 
AfME reaction includes thoughts trom Sonya Chowdhury, AfME Chief Executive -
 
The resignation of Sajid Javid as Secretary of State -
July 06, 2022
Last night news broke that the Secretary of State for Health and Social Care Sajid Javid had resigned from his role. This has left people with M.E. feeling concerned because Mr Javid had initiated the development of a much-needed delivery plan for M.E.
 
Our Chief Executive Sonya Chowdhury who is working collaboratively with the Government shared her thoughts:  “I'm pleased to continue working with such a dedicated & personally committed team of civil servants across the Department of Health and Social Care and other organisations to drive work forward with the M.E. delivery plan and continue to make a real difference for all our community.”
 
Since the release of the written ministerial statement in May meetings have been held covering patient experience, education, training and research into cause and treatment of M.E./CFS including a roundtable that Sonya attended at the end of June.
We would like to welcome the new Secretary of State for Health and Social Care Steve Barclay and look forward to continuing this vital work alongside him at the other members of the Department.
 
 
MEA reaction includes thoughts trom Dr Charles Shepherd, Hon. MEA Medical Adviser
Sajid Javid, Secretary of State for Health and Social Care, resigns and is replaced by Stephen Barclay
July 6, 2022
 
The resignation of Sajid Javid, Secretary of State for Health and Social Security, is clearly bad news given his genuine concern and commitment to improve the care of people with ME/CFS and research into the cause and treatment of ME/CFS
 
Fortunately, the three ministerial groups covering patient experience, education and training, and research into cause and treatment of ME/CFS have all been set up and had their first meetings.  I attended the first meeting of the research group last week.
So I assume that these initiatives will all continue as planned under the new Secretary of State - the Rt Hon Stephen Barclay MP.
Dr Charles Shepherd, Hon. Medical Adviser ME Association
 
 
For further information, see our recent blog - Sajid Javid ‘Rethinking ME’ after young relative’s battles  including -  Rethinking ME – report launch
 
At the end of April our Worcestershire Social Group Blog announced - Decommissioned - ME/CFS Service at Worcestershire Acute Hospital .  If this has affected you, or you have any other concerns, inform your MP of your situation.
 
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.  •  Local News 
•  M.E. Association  •  MP  •  N.H.S.  •  Worcester City Council 
•  Worcestershire  •  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

The Times:  Sajid Javid ‘Rethinking ME’ after young relative’s battles. 
A report by the All-Party Parliamentary Group on Myalgic Encephalomyelitis.
Rethinking ME - APPG on ME Report Launch.
The findings of this report highlights that there has been a long-term disconnect between the treatment deserved by people with ME and what they experience in reality.
“We view these recommendations as a starting point on which to build creative strategies across the governments of the UK, service providers and research institutions for the transformation of our society’s approach to ME. Furthermore, we wish to see the UK take a pioneering stance towards ME research and a compassionate attitude towards people with ME at a time when we are seeing an increasing trend in the development of ME-like symptoms as a result of COVID-19.”
The APPG on ME spent over a year taking evidence from patients, healthcare professionals and charities to produce this report. The 20 recommendations in this report should be considered the starting position for Government policy.
 
Rethinking ME – report launch
The All-Party Parliamentary Group (APPG) on ME met at 3pm on Wednesday 25 May to launch their first report, Rethinking ME. MPs from across the party political divide attended, as well as people with ME, charity representatives and others.
“At this event, we will reflect on the progress being made to improve recognition and understanding of ME amongst the medical profession and other relevant professions. We will hear directly from people with ME on their desire for better care and discuss the steps needed to positively transform the way people with ME are treated in the UK.”  Carol Monaghan MP, Chair of the APPG on ME.
All Westminster MPs (and some members of the House of Lords) were invited by Carol Monaghan MP to come to this meeting, and people with ME were asked to encourage their MP to attend.
 
 
Following the APPG on ME meeting on 25 May -
 
Articles from the ME Association -
 
The Times: Sajid Javid ‘Rethinking ME’ after young relative’s battles
By Sean O'Neill
May 26, 2022
The health secretary has spoken of a young relative’s battle with myalgic encephalomyelitis (ME) as he promised a new approach to the debilitating illness
Sajid Javid said that the health service had failed in its attitude towards treatment of the illness but pledged to lead a cross-government initiative on ME. This would involve healthcare, education and the benefits system, while placing a new emphasis on research into the poorly understood condition. He will convene a panel next month with researchers from around the world in an effort to encourage new treatments.
For further information, see the MEA article, and the full article in The Times.
 
Rethinking ME: ‘These recommendations are considered the starting position for Government policy’ Carol Monaghan, MP
May 26, 2022
‘Rethinking ME' is an important report from The All-Party Parliamentary Group (APPG) on ME and was launched at a reception at the House of Commons yesterday afternoon
In attendance were MPs and Members of the House of Lords, representatives from The Department of Health and Social Care (DHSC), The Department of Work and Pensions (DWP), The National Institute for Health and Care Excellence (NICE), and other Government departments, charity representatives and health journalists. Carol Monaghan spoke about the report and there was a speech from the Sajid Javid – The Secretary of State for Health and Social Care. We will have more from the launch event with the full speeches later today.
 
“Some clinicians try their best but I don’t think the system as a whole realises how serious this issue is and how it has been neglected for far too long”.  Sajid Javid, Secretary of State, Department of Health and Social Care
 
See the MEA full article to find out ‘What does the report contain and recommend’, plus ‘who has received the report’.
 
The BMJ: Health secretary pledges more ME/CFS research as he reveals that relative has condition
May 30, 2022
The BMJ have published an article about the recent All Party Parliamentary Group and the statement made by the Health Secretary Sajid Javid. The article is behind a paywall and some extracts are shown below.
 
Extracts
Patients with myalgic encephalomyelitis (ME) can expect to see more research and support for the condition, which “has been neglected for far too long,” England’s health and social care secretary has said.
Speaking at the launch of a report by the All Party Parliamentary Group on Myalgic Encephalomyelitis on 25 May,1 Sajid Javid revealed that one of his own relatives had had her life severely affected by ME, and he pledged to tackle the lack of research on the condition. He will co-chair a round table of international experts next month to help set this research strategy.
Although he told patients attending the launch that he could not “promise miracles” in finding a treatment, he pledged a new cross-government approach to supporting people with ME, which would encompass not only healthcare provision but also education, work and pensions, and local government. 
 
The i: ‘Doctors need to start believing us’: This is what ME patients say Sajid Javid needs to change
May 30, 2022
The i covers the stories of 3 people with severe ME/CFS and the struggles they have faced which has not been helped by poor treatment from the medical profession.  Yet they are hopeful that the recent statement from Sajid Javid, the All-Party Parliamentary Group on ME Report, and the 2021 NICE Guideline will bring much needed improvements for anyone affected by the condition.
 
The MEA Association article gives extracts from the i report, plus also comments from Tony Britton, PR Manager of the MEA, and Dr Charles Shepherd, Hon. Medical Adviser of the MEA.
 
 
At the end of April our Worcestershire Social Group Blog announced - Decommissioned - ME/CFS Service at Worcestershire Acute Hospital .  If this has affected you, or you have any other concerns, inform your MP of your situation.
 
 
The APPG on ME official website.
The All-Party Parliamentary Group (APPG) on Myalgic Encephalomyelitis (ME).  The APPG is a cross-party voice in Westminster building change for people with ME with Carol Monaghan MP serving as Chair. 
Secretariat - The secretariat for the APPG on ME is jointly undertaken by Action for M.E. and The ME Association
 
 
The Worcestershire M.E. Social Group’s website gives links to Social Media sites which maybe helpful to many people to discuss situations, or just to look and read other people’s postings.
 
•  A.P.P.G  •  Government U.K.  •  M.E. Association 
•  MP  •  National Newspapers  •  N.H.S. •  Worcestershire M.E. Social Group 

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

•  Action for ME  •  A.P.P.G  •  Government U.K.   •  M.E. Association 
•  MP  •  N.H.S.  •  Parliament U.K.  •  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

Flu, Pneumonia & Covid-19 Booster - National and Local Vaccination Information.
 
Updated information from the ME Association (MEA).
Free New Winter Vaccines Leaflet: Flu, Pneumonia, and Covid-19 Booster  
October 22, 2021
Dr Shepherd reviews the Winter 2021/22 Flu, Pneumonia, and Covid-19 booster vaccines in detail, and answers questions, such as if the Flu and Covid-19 booster are free for people with ME/CFS and the pros and cons of having them.
 
Winter vaccinations: Flu, Pneumonia, & Covid-19 Booster
Introduction  -  Dr Charles Shepherd, Hon. Medical Adviser, ME Association:
To link in with the launch of the NHS flu vaccination campaign this year I have updated our flu and pneumococcal vaccine leaflet. I have included some information about COVID-19 boosters as well.

• This new free leaflet can be download here or included with any purchases made via the website shop.

The key message from this year’s flu vaccine campaign is that having been isolating ourselves from respiratory infections for almost two years our natural immunity to flu viruses has decreased significantly. So, we are likely to see a large rise in the number of people catching flu this winter.
At the same time, flu viruses and COVID-19 virus are going to be circulating in combination – which makes the chances of serious illness far more likely, especially in the elderly and people with underlying health conditions.
COVID-19 is not going to go away in the foreseeable future and it looks as though high case numbers may well persist into early 2022 before hopefully starting to decline.
 
Questions answered in this leaflet include:

1. Are people with ME/CFS entitled to have a free NHS flu vaccine if they choose to do so?
2. Is it safe to have a flu vaccine and a COVID-19 booster vaccine together?
3. Will people with ME/CFS be automatically offered a COVID-19 booster jab?
4. Should I have a COVID-19 booster if I had a bad reaction to the first or second dose?
5. Can I get a COVID-19 booster at home if I cannot get to the surgery or vaccination hub?

 
Consequently, some experts are predicting that the number of deaths from flu this winter could even reach 60,000. So, the aim of this year’s campaign is to vaccinate around 40 million people. In addition to all the usual groups, anyone over the age of 50 can now have a free NHS flu jab and children up to the age of 16 will also be offered one.
All the key points relating to the 2021/2022 flu vaccine and eligibility criteria for the COVID-19 boosters are covered in the Questions and Answers section. More detailed information on flu vaccine, as well as the pneumococcal vaccine, can be found in the second part of this information leaflet.
 
Earlier this week, Covid Booster news from the Independent -
Covid-19: Jonathan Van-Tam defends speed of booster rollout but warns of potentially ‘problematic’ Christmas
November 3, 2021 9:43 am(Updated 2:45 pm)
England’s deputy chief medical officer, Professor Jonathan Van-Tam, has defended the Government’s Covid booster programme after i analysis found the scheme is running so late it may not be completed until February.
He said the booster scheme is picking up “considerable momentum” and suggested limited NHS capacity is preventing a more rapid roll-out of the third doses.
Professor Van-Tan continued to praise England’s roll-out of the scheme and noted the pace of vaccinations had increased in recent weeks.  “Yes of course everyone wants to go faster but we are picking up really quite considerable momentum and it’s really important when you get your call please come forward and get your booster.”
He said the Government will be making it easier for people to book their booster dose by giving patients a few weeks notice to book their slots, enabling them to get the third jab as soon as possible.
 
Covid Booster announcement from the BBC-
Covid: Booster jabs to open earlier for booking in England
6 November
People living in England will be able to book their coronavirus booster jabs a month in advance under government plans to speed up their rollout.
Currently, people cannot book their top-up vaccines until six months have elapsed since their second dose.  But from Monday, those aged 50 and over, plus those most at risk, will be able to book after five months.
It means they could receive their booster on the day they reach the six-month milestone.
NHS England is introducing the change to accelerate the rate of take-up of booster jabs, to help prolong protection against the virus.
 
Being able to book ahead will save receiving text invitations after the appointment time. 
This text was received during the evening of 20 October, and the appointment was anytime from 10.00 am to 3.00 pm on 20 October !! -

Flu Vaccination Information from Worcestershire County Council.
Where can you get the flu jab in Worcestershire?
Flu vaccination will be provided by your GP via flu clinics held in your practice or your local pharmacy.  Please download the list of pharmacies in Worcestershire who are providing flu vaccinations. 
 
For Worcester City Residents
If you’re eligible for a free flu jab on the NHS, your GP practice will invite you to attend our pop-up vaccination centre at Worcester Racecourse.
Worcester City Primary Care Network (PCN)  -
Tried and tested flu protection from your local GP.  Get your free NHS flu jab at Worcester Racecourse this winter.
Worcester City PCN covers -
• Albany House Surgery; • Haresfield Surgery;  • Barbourne Health Centre; 
• Severn Valley Medical Practice - Henwick Halt Health Centre; 
• Elbury Moor Medical Centre;  • Severn Valley Medical Practice - Lyppard
• Grange Health Centre;  • Farrier House Surgery;  • Spring Gardens Group Practice;  • St Johns House Medical Centre;  • St Martin’s Gate Surgery; 
• Thorneloe Lodge Surgery
 
Current flu jab information from the Worcester City PCN website (6 November)
If you’ve been invited to get your flu jab at our centre, you do not need to book an appointment - simply walk in during our opening times.
Vaccination Centre Opening Hours
Our centre at Worcester Racecourse is currently open
from 9am-5pm (Lunch break from 12pm-12:30pm) Mon-Wed,
12pm-8pm (Lunch break from 4pm-4:30pm) Thurs, and
9am-5pm (Lunch break from 12pm-12:30pm) Friday.
Please check back here before your visit - as any changes to opening hours or planned closures will be posted below.
Scheduled Closures  -  Friday 12th November - Closed all day.

•  B.B.C.  •  Coronavirus (COVID 19)  •  Government U.K.  •  Local News   •  M.E. Association  •  N.H.S.  •  Worcester City Council 
•  Worcestershire  •  Worcestershire County Council

 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

Grab a Jab Vaccination Clinics during July in Bromsgrove, Malvern and Worcester.
The Worcestershire County Council’s recent Covid-19 announcement .-
Grab a jab clinics now open during July 2021
If you are 18 or over you can grab a Jab at the following sites this July.  No need to book, simply turn up to get your vaccination.
•    Artrix, Bromsgrove, B60 1GN: Monday to Saturday 8.00am to 7.30pm and Sunday 8.00am to 1.30pm. (AstraZeneca and Pfizer vaccinations available)
•    Three Counties Showground, Malvern, WR13 6NW: Monday to Friday 8.00am to 5.00pm or Saturday 8.00am to 1.30pm (AstraZeneca and Moderna vaccinations available)
•    St Peter’s Baptist Church, Worcester, WR5 3TZ: Monday to Saturday 8.00am to 7.00pm (AstraZeneca and Moderna vaccinations available)

The Bromsgrove Advertiser -
HEALTH Secretary and Bromsgrove MP Sajid Javid is self-isolating after testing positive for Covid-19.  In a statement posted on Twitter, Mr Javid said he was awaiting the result of a full PCR test and had only mild symptoms.
“This morning I tested positive for Covid. I’m waiting for my PCR result, but thankfully I have had my jabs and symptoms are mild,” he said.
“Please make sure you come forward for your vaccine if you haven’t already.”
The Health Secretary’s announcement comes as the Government prepares to go ahead with the final lifting of lockdown restrictions in England on Monday, despite the misgivings of some scientists.

Number of Worcestershire Covid Cases currently rising rapidly.
The Worcestershire County Council’s Worcestershire COVID-19 situation dashboard gives the 7 day rate per 100,000.  Information below shows changes during the last fortnight.

7 day rate per 100,000 given on the morning of 4 July
(see our previous blog)   
Bromsgrove 143
Malvern Hills 119
Redditch 79
Worcester 133
Wychavon 85
Wyre Forest 81

7 day rate per 100,000 given this morning 18 July
Bromsgrove 447
Malvern Hills 276
Redditch 300
Worcester 590
Wychavon 283
Wyre Forest 321

The Worcestershire County Council also announces -
National restrictions update - 12 July 2021
The Prime Minister has confirmed we will be moving to Step 4 of the roadmap to end COVID-19 restrictions in England.
The decision to open up has been made in a balanced and careful way, with the Prime Minister being clear that we will need to follow the new guidance to help keep ourselves and each other safe while we learn to live with the virus.
Legal restrictions will end on Monday 19 July 2021
More information on the announcement can be found on the Government website (opens in a new window).  As Step 3 restrictions will remain in place until 19 July, you should continue to follow the guidance on what you can and cannot do from GOV.UK (opens in a new window).

Please see the blog post of 4 July for more Covid-19 Guidance from Worcestershire County Council and ME Association.