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.

Letters from Worcester MP and NHS H&W.  Plus, NHS H&W Advert.
 The Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Herefordshire & Worcestershire Health and Care NHS Trust Service.  This is a specialist part-time service that now delivers support and treatment to people with ME/CFS within community settings across Herefordshire and Worcestershire. 
 
Letters from Worcester MP and NHS H&W
At the end of June we received a letter from Robin Walker MP for Worcester, who had been in touch with NHS Herefordshire & Worcestershire (NHS H&W) on our Group’s behalf, regarding concerns about the decommissioning of the local ME/CFS diagnosis service.  The response from Simon Trickett, Chief Executive of NHS Herefordshire and Worcestershire ICB, explained the current situation with the diagnostic pathway for patients with suspected ME/CFS.

Simon Trickett advised that the service has not been decommissioned by NHS Herefordshire and Worcester, but the CFS service is under considerable pressure due to recruitment difficulties.  He pointed out that this is having a significant impact on Herefordshire and Worcestershire Health and Care Trust’s (HWHCT) ability to safely deliver the service to its patients, and unfortunately the service can only accept patients who have been officially diagnosed with ME/CFS at present.
 
The letters from Robin Walker MP, and Simon Trickett, both refer to a suggested alternative pathway for people who are experiencing ME/CFS pain - the Specialist Pain Management Programme.
 
 
Plus, NHS H&W Advert. (from MEA website)
The ME Association (MEA), raised concerns,
Herefordshire and Worcestershire ME/CFS Service - Feedback Required.
July 10, 2023
Concerns are, not surprisingly, being raised with us about a job advert for this service and some of the information on the cause of ME/CFS on the website for this service:
More information on the Herefordshire and Worcestershire ME/CFS Service
BMJ job advert


ME Association Comment
Dr Charles Shepherd , Trustee and Hon. Medical Adviser
Concerns include:
In particular, is the use of the term ‘incremental pacing' - as this is not a term that is used in the new NICE Guideline on ME/CFS.
The new NICE Guideline makes it clear that incremental increased in activity, along with graded exercise therapy, are no longer recommended (in section 1.11.14 – Box 4).
The development of ‘psycho-educational interventions' for both patients and carers is also concerning as it is not clear what this means.
Service website
It is very disappointing to find in the various information leaflets that some of the main (but unproven) causes of ME/CFS are listed as:
Personality
Childhood trauma
Beliefs and attitudes
Excessive rest
Mood disorders
However, there is no mention of any biomedical abnormalities involving the brain, muscle, endocrine and immune systems.
Again, this information is not consistent with current thinking on the cause of ME/CFS, or the new NICE guideline on ME/CFS.
 
Feedback required
Before taking this any further with the NHS Trust it would be very helpful to have feedback from anyone who is using/has used this NHS referral service. Please email: feedback@meassociation.org.uk
 
Update 10.07.23
The Herefordshire and Worcestershire ME/CFS Service responded:

Dr Charles Shepherd has sent the following email:
 
Dear Herefordshire and Worcestershire NHS Trust
Thank you for withdrawing this job advert so quickly and agreeing to review the content of your website information on the causes and management of ME/CFS - hopefully bringing this into line with all the information and recommendations in the new NICE guideline on ME/CFS.
As you will have noted from our social media announcement I was intending to contact you once we had received some feedback from our members on your ME/CFS referral service.
Whilst there has been some positive comments on our Facebook page coverage there are several issues of concern that need to be addressed.
 
In particular:

1. Some GPs do not appear to know that this referral service even exists.  This has resulted in some people with ME/CFS being referred to Bath, Bristol or Birmingham for secondary care. And some have not been able to obtain a referral for expert help with either diagnosis or management.
2. The use of various Work Sheets - we know from previous discussion with our members that most people with ME/CFS find these are time-consuming to complete and are not particularly helpful in their management.  This is a view that I would share.

 
The ME Association produces a wide range of information on all aspects of ME/CFS for both patients and doctors.
The following (free to download) publications may be of interest and we would be happy to supply paper copies if required:

• Summary of Key Points from the NICE Guideline
• Diagnosing ME/CFS – The Importance of an Early & Accurate Diagnosis
• Long Covid and ME/CFS – Are they the same condition?
• Activity and Energy Management and Pacing

Our new booklet on pain management will be available shortly.
Kind regards, Dr Charles Shepherd,  Hon Medical Adviser
Member of the NICE guideline committee on ME/CFS
 
 
Worcestershire ME Support Group
(Our Group’s Website Blogs & Information): 2023.01.07 - 2023.04.15

Our Group’s blogs of 15 April, 9 March, and 7 January give information received from Marina Townend, Specialist Occupational Therapist/ Team Lead, of the Worcestershire & Herefordshire ME/ Chronic Fatigue Syndrome and Post-Covid Syndrome services.  Marina has been updating us on the situation at the Herefordshire and Worcestershire NHS ME/CFS Local Services, and responding to our queries.  Marina’s updates have included “Changes to the Worcestershire NHS Service, following the revised NICE (The National Institute for Health and Care Excellence) Guidelines, published in October 2021”.
 
 
New MEA Booklet:
Pain Management in ME/CFS by Dr Charles Shepherd 
July 14, 2023
 
Dr Charles Shepherd, Hon. Medical Adviser to the ME Association, has written a new booklet on Pain Management in ME/CFS. It can be purchased for £1 from the website shop along with a full range of literature covering other important topics including more detailed information on prescription drugs for pain relief that Dr Shepherd also refers to in this new booklet.
 
Introduction
Although a small but significant minority of people with ME/CFS experience little or no pain during the course of their illness, the majority - probably around 75% - do. When pain occurs, it can do so in several different forms and with varying degrees of severity.
Knowing what causes pain in any condition can obviously be very helpful in the way it is managed. However, in the case of ME/CFS, no significant research has been carried out into the cause. We therefore know very little about why some people with ME/CFS suffer severe and persistent pain and others have low levels of pain or no pain at all.
 
When it comes to pain management, the best we can do right now is to work on the basis that there may be faults in the way in which messages about pain from various parts of the body -  muscle, joints, abdomen, etc - are transmitted up the spinal cord to centres in the brain that control how we respond to pain.
Equally, it’s also possible that the way in which these pain control centres in the brain dampen down pain is also at fault. And this is why, in addition to conventional pain-relieving drugs, doctors sometimes prescribe drugs that normally have other uses but affect chemical transmitter systems in the brain.
Despite pain being such an important part of ME/CFS, this is one symptom that tends to receive very little attention in medical descriptions of the illness.  Consequently, pain is a key symptom that is often not managed very well by health professionals.
 
This MEA article on their website, explains “What sort of pain occurs in ME/CFS?”, plus the “Topics covered in this booklet”
 
 
The new Myalgic encephalomyelitis (or encephalopathy)/ chronic fatigue syndrome: diagnosis and management. NICE guideline [NG206] was published in October 2021.
 
See also 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

•  Hereford  •  Local News 
•  M.E. Association  •  MP 
•  N.H.S.  •  N.I.C.E. 
•  Worcestershire 
•  Worcestershire M.E. Social Group

Invite your MP to join the next meeting of the All Party Parliamentary Group on ME.  Explain your experiences to your MP, especially since the new NICE guideline was published in October 2021.
 
The meeting previously planned to be held in March, was postponed. 
 
The ME Association (MEA) now state  -
The next meeting of the All-Party Parliamentary Group (APPG) on M.E. will be the Annual General Meeting on Wednesday 10 May 2023 at 2pm.  In addition to reconstituting the APPG, the AGM will include:

• a one year-on review of the implementation of the new NICE guideline including a presentation from Action for M.E. on the results from a Freedom of Information request regarding the implementation of the revised NICE Guideline responded to by 106 ICB’s and NHS Trusts.
• a discussion of support for those with severe ME
• consideration of our workplan for the coming year.
• Minutes of the AGM will be shared in accordance with APPG rules.

 
We'd be really grateful if you could invite your MP to attend.  Your MP can get further information by emailing Carol Monaghan, MP (Chair of the APPG on M.E.).
Action for M.E. and The ME Association jointly share the secretariat responsibility for the APPG. 
 
A template letter for your use, is also available on the MEA website.
 
 
At the end of April 2022 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?
 
 
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

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

Invite your MP to join the next meeting of the All Party Parliamentary Group on ME.  Explain your experiences to your MP, especially since the new NICE guideline was published in October 2021.
 
The ME Association (MEA) give details -
Invite your MP to join the next meeting of the All-Party Parliamentary on M.E
March 8, 2023
The next meeting of the All-Party Parliamentary Group (APPG) on M.E. will be the Annual General Meeting on Tuesday 21 March 2023 from 3:30pm-4:30pm. In addition to reconstituting the APPG, the AGM will include:

• a one year-on review of the implementation of the new NICE guideline including a presentation from Action for M.E. on the results from a Freedom of Information request regarding the implementation of the revised NICE Guideline responded to by 106 ICB’s and NHS Trusts.
• a discussion of support for those with severe ME
• consideration of our workplan for the coming year.
• Minutes of the AGM will be shared in accordance with APPG rules.

 
We'd be really grateful if you could invite your MP to attend.  Your MP can get further information by emailing Carol Monaghan, MP (Chair of the APPG on M.E.). 
Action for M.E. and The ME Association jointly share the secretariat responsibility for the APPG. 
 
Template email included by the MEA., for your use.
 
 
At the end of April 2022 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?
 
Plus recent local news:
Worcestershire NHS ME/CFS Local Services News
 
The Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) Herefordshire & Worcestershire Health and Care NHS Trust webpage was updated in January, with information included on our ME/CFS Local Services webpage update blog.
 
Plus, we’ve received further information from Marina Townend, Specialist Occupational Therapist/ Team Lead, of the Worcestershire & Herefordshire ME/ Chronic Fatigue Syndrome and Post-Covid Syndrome services, updating us on the situation at the Worcestershire NHS ME/CFS Local Services, and responding to our queries.
 
 
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


•  Action for ME •  A.P.P.G •  Hereford •  Local News 
•  M.E. Association •  MP •  N.H.S. •  N.I.C.E. 
•  Parliament U.K. •  Worcestershire

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 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

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


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