Rethinking ME: a report by the All-Party Parliamentary Group on Myalgic Encephalomyelitis

APPG on ME Report: Rethinking ME

 

The All Party Parliamentary Group on ME launched their report ‘Rethinking ME’ on Wed 25 May 2022 with the support of Sajid David MP, the UK Parliament Secretary of State for Health and Social Care.

The findings of this report highlight 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.”

“People with ME require major cultural and policy change to take place within all professions associated with their care and support.”

The 20 recommendations in this report should be considered the starting position for Government policy. Summary of Recommendations:

Executive summary

  1. The UK and Devolved Governments must each conduct a comprehensive review of current ME service provision with a view to implementing the new NICE ME guideline recommendations in full and creating strategies to transform the approach towards ME in health, welfare, social care, research and education.

Biomedical research and research funding

2. Coordinated research strategies must be developed to encourage high quality ME research.

3. Government research bodies should ensure that there is a parity of biomedical funding between ME and other serious long-term conditions.

4. Centres of ME research excellence should be established to drive forward the development of effective treatments.

Diagnosis, symptom management and services

5. Health professionals should follow the new NICE guideline for ME and ensure that ME patients do not undergo any form of GET.

6. Updated ME medical training should be provided by the Royal Colleges and medical schools to relevant health professionals and students.

7. Health service commissioners should review the adequacy of current ME services and take steps to ensure that service provision is carefully planned, resourced, and implemented.

8. People with severe and very severe ME should be provided with a care package based on the basic care principles detailed in the new NICE guideline.

Children and young people with ME

9. Health commissioners should ensure that all children and adolescents with ME have access to correctly trained hospital paediatricians and long-term community services.

10. The Royal College of Paediatrics and Child Health (RCPCH) should ensure that all paediatricians receive specialised training on recognising, diagnosing and managing ME in children and adolescents.

11. An independent second medical opinion obtained by a parent or guardian of a child with suspected or confirmed ME should be fairly considered in any decisions regarding diagnosis, treatment or welfare.

12. The Chief Social Worker (or equivalent in the devolved nations) should ensure that the guide for social workers working with children and young people with ME or suspected ME (developed by social workers in partnership with Action for M.E.) is shared with all social care departments.

13. Children and young people with ME should have a care plan, in accordance with national guidelines and/or statutory requirements, combining education and health.

14. Schools, colleges and higher education institutions should make learning and assessment modifications for students with ME.

Welfare and health insurance-based benefits

15. The Department for Work and Pensions (DWP) should ensure that people with ME have equitable access to welfare benefits by taking steps to (1) account for the impact of ME on the ability to engage with the application process and (2) minimise potential negative health effects associated with medical assessments.

16. Health insurers should not require people with ME to undertake GET, CBT or health assessments that require levels of activity which could produce adverse health effects.

COVID-19 and the ME community

17. Long-term health planning should consider the high number of individuals experiencing long COVID following a COVID-19 infection.

18. Health service commissioners should ensure that there is cooperation between ME and long COVID clinics to maximise patient benefit.

19. Long COVID research projects should include ME patients as a comparative group.

20. Further publicly funded biomedical and clinical research should be commissioned to investigate and compare a range of post-viral conditions, including ME

Read the full report – 37 pages

WAMES is grateful to all involved in preparing the report and all current members of the APPG, and especially those from Wales:

Members:

Carol Monaghan MP, Scottish National Party, Chair

Baroness Scott of Needham Market, Liberal Democrats, Co-chair

Baroness Finlay of Llandaff, Crossbench, Co-chair

Stephen Metcalfe MP, Conservative, Co-chair

Sharon Hodgson MP, Labour, Co-chair

Jason McCartney MP, Conservative, Officer

James Davies MP, Conservative, Officer

Debbie Abrahams MP, Labour, Officer

Ben Lake MP, Plaid Cymru, Officer

Hywel Williams MP, Plaid Cymru, Officer

Fleur Anderson MP, Labour, Officer

 

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BCUHB plan to improve ME/CFS services in north Wales

Plans to improve North Wales services for ME/CFS

WAMES has been asking Health Boards in Wales what plans they have to implement NICE guidelines, whether they intend to consult with patients and how they think their long COVID service might benefit people with ME.

Claire Jones, the Betsi Cadwaladr Health Board’s Long COVID Service lead tells WAMES how they are planning to extend the Long COVID service to provide improved care for ME in north Wales:

“I can confirm that we are currently in discussions both within BCUHB and with partners and leaders from across NHS Wales as a whole. These discussions are looking to develop a service model which will enable BCUHB to increase the capacity and range of support available to people with ME/CFS whilst also preserving the critically important elements of the existing service such as specialist assessment, diagnosis and individually tailored support.

Our intention is to ensure that going forward people with ME across North Wales will be able to access the full range of support/intervention identified in the new NICE guidance such as domiciliary visits, services with close links into social care support, Occupational therapy support; all of which are currently unavailable in the existing BCUHB ME/CFS service.

As you quite rightly say there is significant overlap between ME/CFS and Long COVID and we echo your sentiment that there is a real opportunity here to develop services and expand this model to others who have similar symptoms/conditions.

We are passionate about co-design and co-evaluation of services. We work closely with our Long COVID Lived Experience Group who supported the co-design of the Long COVID Pathway here in BCUHB and who continue to provide valuable feedback and perspective to us as clinicians.  We think it is important and would be very helpful to bring in ME/CFS lived experience representation as we progress our service model.  [We will] contact you again to discuss this further as the plans for this model move forwards.

For context, it might be helpful to first provide a little bit of background to what BCUHB is currently offering for Long COVID – our multidisciplinary team provides full biopsychosocial assessment, referral to appropriate diagnostics and secondary care services as indicated and an individualised plan for management of symptoms and support for adapting to life with a long term condition. The support for symptom management which we provide uses the energy envelope approach and tools such as activity diaries. We provide in-depth support for the use of these tools. PEM/PESE is very common among people with Long COVID so this is an issue which we spend a lot of time supporting people to develop their understanding of and finding ways to work with.

The Long COVID service is delivered across the whole of North Wales in community venues with the aim of providing support as close to home as possible.  The service to date has received positive feedback particularly in relation to patients telling us they feel supported, listened to and their symptoms are validated.

We recognise that while Long COVID is seen as a ‘new’ condition in that it has come about as a result of COVID-19, post viral illnesses in the wider context are not new.  All patients, regardless of diagnosis/cause of symptoms should be managed on an individual basis, taking into account what matters most to the individual and tailoring support and interventions appropriately.  Like you, we see Long COVID as an opportunity to highlight the requirement for services to support post-viral illness in a wider context.”

More about BCUHB’s Long COVID service

WAMES has been emphasising the need for all staff to be aware of the revised NICE guideline for ME/CFS and we will continue to encourage all Health Boards to #ImplementNICEmecfs 

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Aneurin Bevan Health Board plans ME/CFS pathway

ABUHB plans to implement ME/CFS NICE guideline

 

WAMES has been asking Health Boards in Wales what plans they have to implement NICE guidelines, whether they intend to consult with patients and how they think their long COVID service might benefit people with ME.  ABUHB’s Interim Chief Executive Glyn Jones shares their plans for improved care for ME with WAMES:

“Thank you for your email and questions about our plans for pathways for people with ME/CFS, particularly in light of the NICE Guidance and learning from Long Covid. I would like to assure you that I understand and share your hope that these lead to service improvements for people with ME/CFS.

We are planning a process of engagement across the Health Board,  reviewing our existing services and conducting a gap analysis. We will establish a NICE implementation group to develop a shared pathway which will report to our Clinical Standards and Effectiveness Group. The proposed timescale is to begin dissemination of the NICE Guidance in July 2022 with the Implementation Group meeting in the autumn.

I would like to reassure you that our specialist staff take the issue of energy management and symptom exacerbation very seriously. A common difficulty is people pushing themselves too hard, trying to force their recovery and causing increased fatigue and setbacks. Our Post COVID Recovery Team for example, is careful to offer individualised interventions with a bespoke plan for each patient to help them to live as well as possible within the very real limits caused by their condition. Part of our larger project will be sharing best evidence based practice in chronic fatigue across the Health Board.

We have ambitious aims to improve pathways from accurate diagnosis, through to rehabilitation and access to in and out of work benefits.

I trust this information is of assistance.  Kind regards

Glyn Jones, Prif Weithredwr Dros Dro/ Interim Chief Executive

Bwrdd Iechyd Aneurin Bevan Pencadlys/ Aneurin Bevan University Health Board

ABUHB operates across  Blaenau Gwent, Caerphilly, Newport, Torfaen, and Monmouthshire.

ABUHB says:

“The Health Board places a strong commitment on listening to and acting on the views of citizens in Gwent…. Find out more from our Engagement Team                  Tel: 01633 431890  Email: engagement.abb@wales.nhs.uk”

Post-COVID recovery information on ABUHB’s website

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NICE outlines steps needed to put ME/CFS guideline into practice

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 practice.

12 May 2022

The NICE guideline on ME/CFS was published in October 2021 and covers every aspect of the condition in children, young people and adults from its identification and assessment before and after diagnosis to its management, monitoring and review. It also highlights what support should be offered to people with suspected or diagnosed ME/CFS and their families and carers, and what information, education and support should be available for health and social care professionals.

Many of the recommendations in the guideline represent a change to current practice and will, due to the nature of those changes, take the NHS, education, social care and integrated care systems some time to implement. The NICE implementation statement highlights the areas that will have the most need to be considered by local commissioners and providers to comply with the recommendations in the guideline. These include:

  • Commissioners should ensure the availability of experts in secondary care to provide guidance to primary care
  • Providers and other organisations should update their training for health and social care staff (including those in training) to ensure that up-to-date recommendations and safeguarding implications are disseminated across the health and social care system.
  • Commissioners and providers should ensure that provision for increased access to early paediatric review for further assessment and investigation for ME/CFS is available where need is identified.
  • Commissioners and providers should be aware that investment will be needed to increase the number of specialist clinics and specialists with expertise to formally diagnose ME/CFS and develop a care and support plan where need is identified.
  • Commissioners should review funding and capacity in primary care, ME/CFS specialist clinics and paediatric clinics to enable the recommended appointments where need is identified.

Paul Chrisp, director of the Centre for Guidelines at NICE, said:

“Our guideline on ME/CFS provides clear support for people living with ME/CFS, their families and carers, and for clinicians. It uses the best available evidence as well as the lived experience of people with ME/CFS to address and resolve the continuing debate about the best approach to treating people living with this debilitating condition.

“With no nationally commissioned service for ME/CFS in either primary or secondary care, it will be for local systems to determine how to structure their services to achieve the aims of the guideline. Today’s implementation statement will build upon the widespread support from system partners and the ME/CFS community for the guideline and enable them to work together to make sure its important recommendations are implemented.”

Read the NICE implementation statement for ME/CFS here

Ingrid Torjesen in The BMJ says the NICE implementation statement is ‘unprecedented’.

“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.”

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Share #LearnFromME quotes on #WorldMEday 2022

WAMES and the ME Alliance to invite the world to #LearnFromME on World ME Day 12 May 2022

Share these images in our gallery to join the Action or find more and make your own

 

Gallery:

#LearnFromME quotes on #WorldMEday 2022

 

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World ME Day: Pembrokeshire campaigners call for better funding

World ME Day – Sharon speaks to Becky Hotchin at the Western Telegraph

 

The first ever World ME Day takes place today, Thursday, May 12 and campaigners are calling for the illness to have equal footing with Long Covid in terms of funding, research and recognition.

Pembrokeshire-based Sharon Williams contracted glandular fever at the age of 17, while studying for A Levels and representing Wales at gymnastics. She is now volunteer coordinator for The Welsh Association of ME and CFS Support (WAMES).

Sharon was ill with ME, a post viral, physical and neurological illness, for 20 years but managed to continue to study and then work part time and eventually improved enough to be able to run a successful foreign language school.

After a severe relapse in 2012, her symptoms lessened for a few years but she believes that they have partly worsened since having her Covid jabs.

“Living with a chronic physical illness day in day out for decades is hard, especially knowing that there is no treatment or cure,” said Sharon.

“But suffering with an invisible illness and having people doubt its validity is even harder. ME affects people not only physically with a wide range of unpleasant symptoms, but also emotionally, financially and socially.”

WAMES is proud to be a partner in the World ME Day initiative. It has been campaigning for decades for safe, empathetic and equitable healthcare and says there is a real opportunity now for NHS Wales to end the ‘health and social care crisis’ for the estimated 13,500 people with ME and CFS in Wales.

“For decades people with ME have been unheard, but long Covid has helped to put a spotlight on post-viral illness,” said a WAMES spokesperson.

“There is a woeful lack of investment in ME research across the globe. It is only through research that we can find treatments and one day a cure for ME and related illnesses like long Covid.”

Sharon added: “These are interesting times for the ME community. It is beyond frustrating that those with long Covid are (quite rightly) being believed when they present with post viral fatigue when those with ME have been disbelieved by many for decades, though both are post viral illnesses.

“Doctors who dismissed ME are now realising that post viral illness is in fact very real. There is now government funding into services and research for Long Covid but where is the funding into services and research for ME?

“We have been campaigning and waiting for this for decades. However, I also feel hopeful that because of long Covid, finally ME may be taken seriously.

“We must work together to help all those with post viral illnesses.”

For more information or to volunteer with WAMES, visit www.wames.org.uk, contact helpline@wames.org.uk, sharon@wames.org.uk or call the helpline on 029 2051 5061.

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World ME Day 2022 – Could 31,000 people in Wales have ME/CFS?

World ME Day – 12 May 2022 – a time to #LearnFromME and #ImplementNICEmecfs

 

Could 31,000 people in Wales have ME?

The chances are high that you know someone with a post-viral illness. Pre-pandemic an estimated 13,000 people in Wales had Myalgic Encephalomelitis (ME), making ME one of the largest neurological patient communities in the country. COVID-19 could increase that number to 31,000.

Most people with ME remember having a virus. Some were really ill and never fully recovered. Others recovered from the virus after a few weeks, only to collapse again later. Many cannot identify the virus they had, or, like some with COVID, hardly noticed a virus had infected them, but others were tested and given confirmation of a variety of infections e.g. Epstein Barr, Herpes, enteroviruses, Park virus B19 or the previous coronavirus, sars-cov-2.

COVID is also a trigger for ME/CFS. Researchers estimate that 25% of people who experienced ongoing symptoms following the previous COVID outbreak, SARS-CoV, met the criteria for ME.  46% with long COVID today could develop ME, say US researchers. 

According to figures gathered by the ONS:

88,760 people in Wales have long COVID
39,015 people have been ill for 1 year+
11,540 have been ill for 2 years+

If the predictions are correct, up to 18,000 people could have joined the ME community in Wales, bringing the patient population to an estimated 31,000 people.

WAMES has been campaigning for decades for safe, empathetic & equitable healthcare and with the new focus on post-viral illness there is a real opportunity now for NHS Wales to end the ‘health and social care crisis‘ for people with ME/CFS in Wales.

WAMES is therefore asking the NHS and health professionals in Wales not to delay any longer:

  • follow the science
  • listen to patients and carers
  • learn to diagnose ME/CFS: Debilitating fatigue + Post-exertional malaise + Sleep disturbance + Cognitive difficulties
  • begin the process of developing a safe, empathetic and equitable healthcare service for people with ME/CFS
  • no delay – begin to implement the 2021 NICE ME/CFS guideline today!

#ImplementNICEmecfs

What should health professionals #LearnFromME?

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Take Action! What should the world #LearnFromME?

Take Action for #WorldME day!

 

What should the world #LearnFromME?

WAMES is proudly supporting World ME Day on the 12th of May, only 1 week away. As part of this year’s theme, #LearnFromME, the World ME Alliance has released a series of actions to help you make an impact. We invite people in Wales to join us in taking part.

Are you going to take action and help the world #LearnFromME?

If so, how much time do you have?  60 seconds, 5 minutes or longer?

 60 seconds:

Action 1: Post to social media and use your networks to spread awareness.

Tweet       Post via Facebook      Share via LinkedIn

Action 2: Ask a healthcare professional to take 5 minutes to #LearnFromME. Do you know someone who works in healthcare? Send them a message today asking them to do their bit for World ME Day and read one of the recently produced guidelines. Ask them to visit www.worldmeday.org to find out more.

Action 3: Tag a politician in your social media post about World ME Day. It’s so important to reach those in power and ask them to #LearnFromME on May 12th.

Action 4: Donate to our work here WAMES and the the work of the Alliance here.

5 minutes

Action 1: Create your own custom poster! There are templates with easy instructions on how to add information to produce your own poster. Then just save your poster and share it to social media, with friends and family. Below are some that have been made already.

Create your poster

 

Action 2: We need to reach the people with power to make difference – that means healthcare professionals and politicians.

Use your custom poster to reach out to someone in power. Send it to a healthcare professional or politician and ask them to take action to #LearnFromME this World ME Day.

Longer:

Action 1: One way we can make a major impact is to tell our stories to a bigger audience. To do this, we need to get into the press. That could be a local newspaper, a university news site, online websites, a radio or tv program. It could have a huge readership or a small one, but it will still be worthwhile.

This action takes more energy and time, but could reach loads of people. Here is a guide to pitching your story to the press. Download and send your first pitch today.    Download the guide and tell your story

Action 2:

You could have a longer term impact by getting involved in an organisation near you. WAMES and all Welsh ME organisations are entirely volunteer run. Reach out to an organisation near you and offer to volunteer today.   Find an organisation to get involved in worldwide.

Actions for Healthcare Professionals

As a healthcare professional it is vital that you understand the principles of care for people with ME.

Two new guidelines have been published in the last year that completely redefine best practice. This World ME Day, we are asking you to take the time to read one of these guidelines.

ME/CFS: diagnosis and management – NICE

ME/CFS: Essentials of Diagnosis and Management – Mayo Clinic Proceedings

 

We are excited to be participating in all of these actions alongside other organisations and individuals from across the globe.

 

Find out more about what other organisations are doing around the world at worldmeday.org

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ME/CFS has significant impact on Quality of Life for people with ME/CFS & their families

Impact of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) on the quality of life of people with ME/CFS and their partners and family members: an online cross-sectional survey, by Jui Vyas, Nina Muirhead, Ravinder Singh, Rachel Ephgrave, Andrew Y Finlay in BMJ Open 2022;12:e058128. [doi: 10.1136/bmjopen-2021-058128]

 

Research abstract:

Objectives

The aim of this study was to assess the impact of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) on the quality of life (QoL) of people with ME/CFS and their relative or partner (family member).

Quality of life, the degree to which an individual is healthy, comfortable, and able to participate in or enjoy life events.        (Britannica)

Design

A patient-partner, multinational, subject-initiated, cross-sectional online survey.
Setting International survey using ME/CFS charities, support groups and social media.

Participants

Participants were self-selected with recruitment via social media. Inclusion criteria were aged 18 years or over and reported diagnosis of ME/CFS by health professional. 1418 people with ME/CFS and their 1418 family members from 30 countries participated in the survey.

Participants with ME/CFS had a mean age of 45.8 years (range 18–81) and were predominantly women (1214 (85.6%) of 1418). Family members had a mean age of 51.9 years (range 18–87) and were predominantly men (women: 504 (35.5%) of 1418). 991 (70%) family members were partners of the people with ME/CFS.

Interventions

EuroQoL-5 Dimension (EQ-5D-3L), completed by people with ME/CFS, and Family Reported Outcome Measure (FROM-16) questionnaire, completed by family members.

EuroQoL-5 measures 5 dimensions: mobility; self-care; usual activities; pain/ discomfort; anxiety/ depression

Results

The mean overall health status on a Visual Analogue Scale for people with ME/CFS was 33.8 (0=worst, 100=best).

A Visual Analogue Scale (VAS) is one of the pain rating scales… often used in epidemiologic and clinical research to measure the intensity or frequency of various symptoms.   (Physiopedia)

People with ME/CFS were most affected by ability to perform usual activities, pain, mobility, self-care and least impacted by anxiety.

For family members, the overall mean FROM-16 score was 17.9 (0=no impact, 32=worst impact), demonstrating a major impact on QoL.

Impact on QoL was significantly correlated between the person with ME/CFS and their family member (p<0.0001). Family members were most impacted emotionally by worry, frustration and sadness and personally by family activities, holidays, sex life and finances.

Conclusions

To the best of our knowledge, this is the largest study on the impact of the QoL of persons with ME/CFS and their family members. While open participation surveys are limited by selection bias, this research has revealed a significant worldwide burden of ME/CFS on the QoL of people with ME/CFS and their family members.

Unanswered questions and future research

Not all people with ME/CFS have a family member or partner to complete the FROM-16. Several individuals wrote to the research team explaining their isolation, difficulty maintaining family relationships and/or lack of empathy of family members. Further research is needed to understand the wider impact of ME/CFS on families and on individuals.

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Make a poster for World ME day!

World ME Day custom poster maker goes live – what will you create?

 

Can posters, articles, posts, tweets create change?

 

Yes, if they show how many people are impacted by ME, and what that means.

People with ME, their family, carers, friends and other supporters have so much knowledge about our neurological, post-viral disease.

As part of the World ME Alliance WAMES is inviting you to use our new custom poster maker ahead of World ME Day on the 12th of May.

Create your own poster alongside thousands of others this World ME Day

There are loads of templates for you to choose from:

  • use the standard ones,
  • choose to support a specific organisation with your poster,
  • or choose one in any language, including Welsh.

Any poster you create may also be exhibited on the World ME Day website.

It’s as simple as:

  • choosing your favourite template,
  • adding text or a photo (or both) and
  • clicking save!

Then share your poster to social media, and together we can use our experience to highlight an aspect of ME that should be well known.

The Alliance particularly wants to target healthcare professionals and politicians this year, so consider whether you can send your poster directly to someone in a position of power.

What can the world #LearnFromME from people in Wales?

How can we encourage NHS Wales to #ImplementNICEmecfs?

Get creative at www.worldmealliance.org/worldmeday/custom-poster

 

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