Covid Autumn Booster Vaccine 2023; & Flu Vaccine Information (2023-24).
See the Full Articles and Medical Disclaimers from the MEA and Dr Charles Shepherd.
 
The ME Association: Covid Autumn Booster Vaccine Information (2023)
September 6, 2023
 
Even though Covid-19 hasn't gone away, many people have been slowly returning to normal or near normal life.  At the moment the level of infection remains fairly low.  However, there are signs that we could be heading for another more significant wave of infection over the coming months.  There are also new variants of the virus appearing that are causing concern.
 
The MEA article includes information on the following topics.
Vaccine eligibility - ( the DHSC list of people who are automatically eligible):.
ME/CFS eligibility -  (This includes - “We have produced a Template letter that you can use when speaking with a GP if you aren’t called for a Booster vaccine automatically and decide to try and get one”).
Should I have a Covid Booster?
Feedback
 
Plus, message from Dr Charles Shepherd, Trustee and Hon. Medical Adviser, The ME Association -
On a personal basis I have had 4 Covid vaccinations without any problems. I had the Pfizer Autumn Booster last year which was followed by a fairly severe adverse reaction - a red swollen leg that was probably the result of a vasculitis.
“Having had 4 vaccinations without any problem I am probably going to go ahead and have an autumn booster but not with the Pfizer vaccine.  However, other Trustees and staff members with ME/CFS have had different experiences with the Covid vaccines and Boosters and may not make the same decision as me.
“It became quickly apparent from the large number of reported experiences that we received last year, and which we continue to receive, that people’s reactions or non-reactions are very mixed, and that no clear determination or recommendation can be made in regard to ME/CFS. Therefore, it is very much a personal decision.”
Dr Charles Shepherd.
 
 
The ME Association: Flu Vaccination Information (2023-24)
September 6, 2023
 
Each year, seasonal Flu affects hundreds of thousands of people across the globe. In most cases the virus causes mild illness that doesn’t require medical attention or hospitalisation. For certain people in high-risk groups, however, catching the Flu can lead to life-threatening complications.
 
The MEA article includes information on the following topics.

• Introduction.
• Catching the Flu.
• Protecting against the Flu.
  
• Cautionary Notes.
• Who can have the Free NHS Flu vaccine?
• Can I have the Free NHS Flu vaccine if I have ME/CFS?  (this includes  - “we have produced a Template letter that you can use when speaking with a GP if you have ME/CFS and decide to try and get a Free Flu vaccine on the NHS”).

• Possible vaccine side-effects.
• When to get the Flu vaccine.
• Where to get the Flu vaccine.
  
• Can I have the Free NHS Flu vaccine and Autumn Covid Booster together?
• Pneumonia and Shingles vaccinations.
• Feedback.
  

•  Coronavirus (COVID 19)  •  M.E. Association  •  N.H.S.

Join the world's largest study of ME/CFS.
DecodeME - We aim to find genetic causes of why people become ill with myalgic encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS) with our ground-breaking research. Take part from your home.

August 2023 Newsletter update from the DecodeME Study
 
As we approach one year since DecodeME’s full launch, we’d like to update you on how things have been going.

• Firstly, we can confirm that over 23,000 people have signed up and completed their questionnaire, over 19,000 of whom have also been invited to provide a DNA sample. This is great news, thank you to everyone who has participated!

 

• However, we are still only 75% of the way to reaching our goal, so we still need more participants! Please continue to help us spread the word to people with ME/CFS about the opportunity to take part in the world’s largest ME/CFS research study! You can find resources to help you do this on our Ways to Share page.

 

• We recently became able to invite more participants to donate their DNA to the study, you can read more about this change in our blog post: Inviting More Participants to Donate DNA.

 

• Initial findings from the DecodeME Questionnaire Data Published. Having analysed the questionnaire data from the first 17,000 participants, our findings, have been published by NIHR Open Research. You can read the summary of the findings on our blog.

 

• DecodeME’s Investigator Professor Chris Ponting recently spoke about the study and the importance of ME/CFS research in Thomas McCann’s documentary ‘Living With ME’. You can watch the full documentary on YouTube. (Trigger warning: the full documentary contains conversations on suicide).

 
If you haven’t yet signed up as a participant in the DecodeME study, but would like to do so, please visit www.decodeme.org.uk/portal.

Thank you for supporting the study, we couldn’t do this without you!
Warmest wishes,
The DecodeME Team
DecodeME Partnership
42 Temple Street, Keynsham, BS31 1EH,
www.decodeme.org.uk

DecodeME explains how to sign up and take part in this research, plus how you can sign up for future newsletters via their website.
Together we can decode ME/CFS.  Scientists and people with ME/CFS, carers and charities have come together to create DecodeME.  It’s a huge genetic study that aims to uncover causes of ME/CFS, pointing the way towards effective treatments.
 
For more information on the study and taking part, view the DecodeME Study Documents, and sign up for their newsletter updates.

 
Also, see DecodeME recent news from Action for ME and the ME Association.
 
Action for ME (AfME)
DecodeME: Initial Questionnaire Findings Published
August 24, 2023
Today, the initial findings from the DecodeME questionnaire data collected from the first 17K participants have been published on NIHR Open Research. You can find a summary blog of the article on the DecodeME website here.
 
The ME Association (MEA)
Guardian: Women with ME tend to have more symptoms than men, study suggests
August 24, 2023
Please refer to Dr Shepherd's Q & A at the bottom of this blog about why more women than men develop ME/CFS
Study of chronic fatigue syndrome also finds women are more likely to develop worse symptoms over time
 
 
For further background information, including information from Action for ME, The Medical Research Council, the National Institute for Health Research, the ME Association, and press articles go to our group’s previous •  DecodeME  blogs  These include -
ME/CFS Biomedical Partnership - Genetics Research - DecodeME UPDATE (2 September); 
ME/CFS Biomedical Partnership - Genetics Research.;
Biomedical Genetics Research: The ME/CFS Biomedical Partnership.

•  Action for ME  •  DecodeME  •  M.E. Association

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.

Please see the update to the blog post- the ME Association #CountMEin Survey closes at 1pm on 31 July.

•  M.E. Association

The ME Association #CountMEin Survey for everyone who might have symptoms or a diagnosis of ME/CFS and/or Long Covid in the UK,,Channel Islands, and the Isle of Man,
 
‘Count ME In’ - M.E. charity calls for an end to NHS neglect!
The campaign will run during 2023 and the ME Association’s (MEA) will share the survey outcomes which will be produced in December.
 
The MEA Reminder -
 
Count Me In Campaign Survey
More than 6000 people with either symptoms or a diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome or Long Covid have already completed our Count Me In survey.
Help the ME Association create a true picture of life in the UK, so you can get the support you need.
Complete our survey and tell us how ME/CFS and Long Covid affects people like you.
 
 
For further information, see our previous blog.
ME Association #CountMEin survey & campaign

•  M.E. Association

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

BE COUNTED. BE HEARD. #CountMEin.  The ME Association #CountMEin Survey for everyone who might have symptoms or a diagnosis of ME/CFS and/or Long Covid in the UK,,Channel Islands, and the Isle of Man,
 
‘Count ME In’ - M.E. charity calls for an end to NHS neglect!
The campaign will run during 2023 and the ME Association’s (MEA) will share the survey outcomes which will be produced in December.
 
Extracts from the MEA’s announcement on May 22nd -
 
In a first-time test of public opinion, Britain’s oldest charity for people with the energy-sapping disease Myalgic Encephalomyelitis will today start asking hundreds of thousands of sufferers whether they’re satisfied with the support they’re getting from the National Health Service. 
Martine Ainsworth-Wells, campaigns director at the ME Association, said:
“We know the picture will be patchy - but we want to hear directly from people with the illness, or from those still without a diagnosis, how well or indeed how badly they think the NHS is performing.” 
Today (Monday, 22nd May), the Buckinghamshire-based charity launches a major survey to find the answers. The survey will be backed by a nationwide social media and digital advertising campaign scheduled to last several months. This attempt to reach huge numbers of patients, many of whom have given up on seeing their doctors because of breakdowns in the doctor-patient relationship, has never been tried before. 
 
COUNT ME IN. LET YOUR VOICE BE HEARD
We are asking people to complete a short survey about their health experiences and the support they have received from the NHS and social care services.
This anonymous survey will help us to:

1. Improve NHS and social care services
2. Raise much-needed awareness
3. Better understand how people's lives are affected
4. Help people find support, learn more about symptoms, obtain an accurate diagnosis and find specialists

 
The MEA’s Survey information -
We understand that you might not have the energy to complete the survey yourself, so please allow your carer, parent or guardian, family member, or friend, to complete it on your behalf.
Thank you for taking the time to complete the survey today for the ME Association.
It will take around 10 minutes, and if you aren't able to complete it all in one go, your progress will automatically save and you can return later for up to 3 days.
This survey is run by One Minute to Midnight, a market research agency, on behalf of the ME Association. All your answers will be treated in complete confidence in accordance with the Market Research Society Code of Conduct and GDPR. We will not be asking you for any personally identifiable information.
 
Completing this survey will enable the ME Association to:

1. Inform more people about ME/CFS and Long Covid, help them obtain an accurate
   diagnosis if needed, and find the right support to improve their life quality.
2. Produce an independent report that will raise awareness and help us improve the
   standard of healthcare by working with the NHS and social care services.

 
 
Further information on the MEA website on June 30, 2023
 
Take the Survey
#CountMEin is a major campaign whose purpose is to reach as many people as we can who think they might be affected by symptoms - or who have a diagnosis - of ME/CFS or Long Covid.  
 
Survey Purpose  

1. To reach as many people as we can in the UK, Channel Islands, and the Isle of Man, who might have symptoms or a diagnosis of ME/CFS and Long Covid.  

1. To gain insight into how these symptoms and diagnoses are affecting people’s lives and how effective the support from the NHS and social care services has been.  

Survey Outcomes  

1. We can help more people learn about and recognise ME/CFS and Long Covid, obtain an accurate diagnosis if they need one, and access the most suitable management advice to help improve life quality.  
   
2. A report will be produced based on the anonymous survey responses that will be used to:  
   

• support continuing efforts to influence others about how people are affected and their ability to access health and social care when needed.  
• help improve health and social care services, work with healthcare providers to effectively implement the NICE Clinical Guideline recommendations, and to recognise the importance of listening to patients and tailoring care accordingly. 

 
Further information on the MEA website. - https://meassociation.org.uk/
 
•  M.E. Association

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


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

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