ME/CFS Delivery plan for Wales proposal

WAMES welcomed the DHSC’s Interim delivery plan on ME/CFS for England when it was published in September. We were also pleased that the Welsh Government is

‘keen to review the views of their residents on the interim delivery plan
so that they can consider the implications for local policy’

WAMES has therefore drawn together some thoughts on the themes and actions in the plan which we believe Wales should also be considering, as new ME/CFS services are being planned.

Our proposals for a Welsh Delivery Plan have been sent to the Welsh Government leads for ME/CFS and Health Board leads, among others.

Our proposed key actions for Wales:

• Wales-wide commitment to co-production
• encourage biomedical research
• develop a pro-active strategy to educate train and raise awareness amongst professionals
• raise awareness of how people with ME/CFS and unpaid carers can access relevant support
• avoid the ‘red flags’ of unhelpful language

The thing that impressed WAMES most about the draft English delivery plan was that it was produced through co-production.

The Co-production network for Wales‘ slogan is:

All in this together

People with ME/CFS have endured decades of conflicting theories about our condition and treatment approaches, and disinterest or hostility from the healthcare profession.

In such a climate, even the most well-meaning professionals would find it difficult to develop effective strategies and pathways without the input of people living with, and caring for those with the illness.

As well as a commitment to co-production across Wales, WAMES are also asking for consistent and thorough implementation of the NICE guidelines and awareness raising of the condition with all healthcare, social care and education professionals. The aim is:

‘to improve experiences and outcomes’ for all affected by ME/CFS

Download the ME/CFS Delivery Plan for Wales proposal

Read the ME/CFS Delivery Plan for Wales proposal

#ImplemementNICEmecfs

Long COVID & ME/CFS have similarly impaired vascular function

Researchers from Scotland found similar problems with the lining of the blood vessels (endothelium) in both people with long COVID and ME/CFS, in spite of people with ME/CFS being ill for much longer.

This suggests an increased cardiovascular risk, leading to heart attacks and strokes and “highlights the need for individuals with post-viral illnesses to be carefully monitored for cardiovascular risk and potentially prescribed treatments to lower risk.”

People with Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) exhibit similarly impaired vascular function, by Marie Mclaughlin, Nilihan E M Sanal-Hayes, Lawrence D Hayes, Ethan C Berry, Nicholas F Sculthorpe in Am J Med. 2023 Oct 11 [doi: 10.1016/j.amjmed.2023.09.013]

Research abstract

Background:
This study aimed to compare flow-mediated dilation values between individuals with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and healthy age-matched controls to assess the potential implications for clinical management and long-term health outcomes.

Methods:
A case-case-control approach was employed, and flow-mediated dilation measurements were obtained from 51 participants (17 Long COVID patients, 17 ME/CFS patients, and 17 healthy age-matched controls). Flow-mediated dilation values were analysed using one-way ANOVA for between-group comparisons.

Results:
Results revealed significantly impaired endothelial function in both Long COVID and ME/CFS groups compared to healthy age-matched controls as determined by maximum % brachial artery diameter post-occlusion compared to pre-occlusion resting diameter (6.99 ± 4.33% and 6.60 ± 3.48% vs. 11.30 ± 4.44%, respectively, both p < 0.05). Notably, there was no difference in flow-mediated dilation between Long COVID and ME/CFS groups (p = 0.949), despite significantly longer illness duration in the ME/CFS group (ME/CFS: 16 ± 11.15 years vs. Long COVID: 1.36 ± 0.51 years, p < 0.0001).

Conclusion:
The study demonstrates that both Long COVID and ME/CFS patients exhibit similarly impaired endothelial function, indicating potential vascular involvement in the pathogenesis of these post-viral illnesses. The significant reduction in flow-mediated dilation values suggests an increased cardiovascular risk in these populations, warranting careful monitoring and the development of targeted interventions to improve endothelial function and mitigate long-term health implications.

32 organisations call for future pandemic preparedness to address infection-associated chronic conditions 

The World ME Alliance says future pandemic preparedness will fail millions without explicit recognition of and research into infection associate chronic conditions.

On 20th September 2023, the United Nations General Assembly adopted a Political Declaration on Pandemic Prevention, Preparedness and Response.

The commitments outlined in this declaration are vital for enhancing global readiness to tackle future pandemics effectively, yet they fail to address infection-associated chronic conditions.

Globally, more than 65 million people are now living with long COVID, of whom 50% meet the criteria for a diagnosis of ME/CFS and over 70% have developed dysautonomia. The need for recognition and expedited research to address these chronic illnesses is undeniable.

Facilitated by the World ME Alliance, 32 organizations, including WAMES, have joined in calling on His Excellency Mr Dennis Francis, President of the 78th UN General Assembly, to raise awareness of this critical issue within the UN and among member states, and meet with us to discuss working toward a healthier and more resilient world for all.

Extract from letter:

… historical records show that after previous pandemics and epidemics, from the Greek plague of 430 BC to the Spanish Flu of 1918 to the 2014 Ebola virus disease outbreak, there have been accounts of individuals who never fully recover, living with chronic illnesses that often mirror the symptoms of ME and dysautonomia. This pattern underscores the importance of recognizing infection-associated chronic illnesses as a recurring issue following pandemics, with long-lasting implications for affected individuals and society as a whole.

Therefore, we respectfully urge the United Nations and its member states to consider addressing this significant gap in pandemic preparedness and response. We call for future initiatives and strategies related to pandemic preparedness to explicitly include actions on the impact of infection-associated chronic illnesses, such as long COVID, ME, POTS and other forms of dysautonomia and more.

Vitally, these efforts should encompass research and recognition, with immediate recommendations to invest in research to understand the underlying mechanisms of these conditions, facilitate early diagnosis, and improve recognition, medical education and treatment.

We kindly request your support in raising awareness of this matter within the United Nations and among member states. We, the undersigned, are committed to providing aid and being a resource for the UN and member states in this endeavour. Together, we can work towards a more inclusive and responsive approach to pandemic preparedness that considers the long-term health and well-being of all individuals affected by infectious diseases.

32 organisations signed:

World ME Alliance – Global
Long Covid Alliance – Global
Dysautonomia International – Global
#MEAction – Global
12ME – Belgium
ACAF – Spain
Action for M.E. – UK
AMMES – The American ME and CFS Society
ANZMES – The Associated New Zealand Myalgic Encephalomyelitis Society
Associazione Italiana Long COVID – Italy
AQEM – Association québécoise de l’encéphalomyélite myalgique – Canada
CFS/ME Associazione Italiana – Italy
CFS/ME Organizzazione di Volontariato – Italy
European ME Coalition
Emerge Australia
Forward ME – UK
Hope 4 ME and Fibro Northern Ireland
Japan ME Association
ME CVS Nederland
ME Support (IOM) – Isle of Man
ME/CFS Israel
Millions Missing Belgique
Millions Missing Canada
Millions Missing France
Millions Missing Mexico
Mirame Arts – Germany
MYOS – Portugal
Neúnavní – Czechia
Plataforma Familiars FM-SFC-SQM Síndromes de Sensibilització Central – Spain
Solve M.E. – US
The ME CFS Foundation South Africa
WAMES – Welsh Association of ME & CFS Support

Read the complete article and letter

Download letter

Machine learning analysis of SF-36 Health questionnaire could be as diagnostic tool for ME/CFS

Spanish researchers looked for an alternative to using an expensive and invasive exercise test (CPET) as a diagnostic biomarker in patients with ME/CFS. They found that using Machine Learning to analyse the answers to the Short Form-36 (SF-36) questionnaire could predict oxygen consumption and reveal sub-types.

Unsupervised cluster analysis reveals distinct subtypes of ME/CFS patients based on peak oxygen consumption and SF-36 scores, by Marcos Lacasa, Patricia Launois, Ferran Prados, José Alegre, Jordi Casas-Roma in Clinical Therapeutics Oct 4, 2023 [doi.org/10.1016/j.clinthera.2023.09.007]

HIGHLIGHTS

• ME/CFS is a disabling chronic disease with a lack of diagnostic tests.
• Oxygen consumption is a possible biomarker of CFS.
• O2 consumption allows classifying patients status according to the Weber’s classification.
• A worse Weber’s classification infers a worse outcome on the SF-36 questionnaire.
• Unsupervised machine learning is a powerful tool for analyzing data.

Research abstract

Purpose
Myalgic encephalomyelitis, commonly referred to as chronic fatigue syndrome (ME/CFS), is a severe, disabling chronic disease and an objective assessment of prognosis is crucial to evaluate the efficacy of future drugs. Attempts are ongoing to find a biomarker to objectively assess the health status of (ME/CFS), patients.

This study therefore aims to demonstrate that oxygen consumption is a biomarker of ME/CFS provides a method to classify patients diagnosed with ME/CFS based on their responses to the Short Form-36 (SF-36) questionnaire, which can predict oxygen consumption using cardiopulmonary exercise testing (CPET).

Methods
Two datasets were used in the study. The first contained SF-36 responses from 2,347 validated records of ME/CFS diagnosed participants, and an unsupervised machine learning model was developed to cluster the data. The second dataset was used as a validation set and included the cardiopulmonary exercise test (CPET) results of 239 participants diagnosed with ME/CFS. Participants from this dataset were grouped by peak oxygen consumption according to Weber’s classification.

he SF-36 questionnaire was correctly completed by only 92 patients, who were clustered using the machine learning model. Two categorical variables were then entered into a contingency table: the cluster with values {0,1} and Weber classification {A, B, C, D} were assigned. Finally, the Chi-square test of independence was used to assess the statistical significance of the relationship between the two parameters.

Findings
The results indicate that the Weber classification is directly linked to the score on the SF-36 questionnaire. Furthermore, the 36-response matrix in the machine learning model was shown to give more reliable results than the subscale matrix (p − value < 0.05) for classifying patients with ME/CFS.

Implications
Low oxygen consumption on CPET can be considered a biomarker in patients with ME/CFS. Our analysis showed a close relationship between the cluster based on their SF-36 questionnaire score and the Weber classification, which was based on peak oxygen consumption during CPET. The dataset for the training model comprised raw responses from the SF-36 questionnaire, which is proven to better preserve the original information, thus improving the quality of the model.

ME/CFS and pregnancy: a systematic review

When reviewing studies of pregnancy in women living with ME/CFS, researchers from Newcastle University found the impact of pregnancy on ME/CFS severity varied within and between the small number of relevant studies.

The importance of both individualised care, and of healthcare professionals learning about ME/CFS in relation to family planning and pregnancy was however highlighted.

There are currently no evidence-based guidelines for management of ME/CFS and pregnancy. People with ME/CFS, their partners and healthcare professionals are unable to make informed, evidence-based decisions around family planning, pregnancy, labour and birth.

“More research is urgently needed, considering all aspects of pregnancy and ME/CFS for patients and healthcare professionals. In particular, research should explore what would constitute high-quality care for those with ME/CFS relating to pregnancy and family planning.”

Better quality research is also needed, with larger sample sizes, healthy control groups, clearly defined research questions and a standard diagnostic criteria for ME/CFS.

Identifying, synthesising and appraising existing evidence relating to myalgic encephalomyelitis/chronic fatigue syndrome and pregnancy: a mixed-methods systematic review, by Emma Slack, Katrina Anne Pears, Judith Rankin, Julia L Newton, Mark Pearce in BMJ Open Volume 13, Issue 10, 2023

Primary fatigue service, Cwm Taf MUHB

Cwm Taf Morgannwg University Health Board (CTMUHB) is the first health board in Wales to launch a service for post viral illness, which includes both ME/CFS and Long COVID. Who is the service for?

Anyone who lives in Bridgend, Merthyr Tydfil or Rhondda Cynon Taf with a diagnosis of ME/CFS or Long COVID can be referred to the Primary Fatigue Service (PFS).  You are advised to speak to your GP if you suspect you might have either of those conditions and they will do some investigations and blood tests to reach a diagnosis. They and other health professionals (consultant, nurse practitioner, occupational therapist, physiotherapist etc) can also refer you. Unfortunately you cannot refer yourself.

What will the service offer? 

Assessment – To begin with you will talk to a therapist to assess how your symptoms affect you, what you already do to manage them and what you would like to be able to do with your life. You will hopefully agree a plan of action. This could take up to an hour by phone, in a clinic, or if necessary, at home. The session will be tailored to the individual.

‘Treatments’ – you might be offered one to one sessions with either a physiotherapist or occupational therapist. A GP and psychologist are also available to advise if necessary. The length of the sessions will be tailored to your needs, up to 60 mins, and could be via the phone, in a clinic or in the home.

The approach will vary depending on the person, but it will often include support to deal with PEM such as how to find a baseline and get out of a boom/bust cycle, to pace and balance the energy envelope, to plan and prioritise.

Camau management programme – this series of sessions will take place in community venues in Bridgend, Pontypridd and Merthyr, and also online. They will introduce tools to help you manage your condition and include topics such as sleep, nutrition and finding some pleasure and quality of life. The aim is to help you gain the skills and knowledge to self-manage and live well with your condition.

Starting date?

The Service was launched on Monday 1 October 2023. GPs began to refer patients before that date so there could quickly be a waiting list!

WAMES have shared the needs, wishes and experiences of people with ME/CFS with the Service Team, but have not been consulted on the nature of the sessions they will offer. The organisers however are keen to get feedback on their service and the website. They emphasis that it is ‘a work in progress’.

We would be interested to hear the experiences of anyone who uses the Service. We will pass all comments, positive and negative, to the Service anonymously, unless specifically asked not to. In this way we can still influence how the service progresses and ensure that it meets the needs of people with ME/ CFS.  Contact jan@wames.org.uk

Find out more: Primary Fatigue Service / Gwasanaeth Blinder Sylfaenol

Language can hurt

 

“The way language is used can frustrate or upset people who have ME/CFS.”

This is one of the discoveries made by the Working Group who have developed the draft English ME/CFS Delivery Plan:

My full reality: the interim delivery plan on ME/CFS

“This insight comes from personal experience, gathered by people with personal experience who have participated in the development process for the delivery plan on ME/CFS. The evidence has not been validated by the government but represents a flavour of what we have heard through our meetings and workshops.”

They give examples of how life with ME/CFS is often misunderstood and can lead to hurtful comments:

Chronic Fatigue Syndrome as an alternative description of ME/CFS

“I’d love it if I could stay in bed all day“

“You’re just lazy”         “Yeah, I’m very tired too“

Normal experience of illness is that people recover

“My mum’s friend had that and she recovered“

“You should aim for full recovery“

“We can get you back to normal with some time and effort“

The misconception that ME/CFS is a mental health condition, ‘all in the mind’ or that you can get better or overcome symptoms by the way you think

“Maybe you should ask your doctor to put up your dose of antidepressants“

“If you thought differently, you would get better“

“It helps to have a positive attitude“

The fact that there is no medical test to prove that someone has ME/CFS

“good news – the tests say there is nothing wrong with you“

“you are lying“

“maybe you are depressed about something“

‘Post-exertional malaise’ or PEM is a technical term which most people will not have heard of

“You did nothing yesterday, why are you still in bed?“

Symptoms of ME/CFS cannot be seen

“You look normal”       “You just don’t want to work“

“You don’t need the wheelchair because I saw you walk last week“

“No, you can’t have a home visit“

People with mild or moderate ME/CFS can manage their energy to do something out of their ordinary routine, as long as they rest before and afterwards as necessary

“How can you go for lunch with someone, but you can’t go to work for 8 hours?“

“The tests are only available in the mornings“

“We need you to commit to attending weekly“

Read the full report: Language use in relation to ME/CFS – a personal perspective

500 miles for ME – Rob raises £1,00 for WAMES

Rob began his challenge in June –  to walk 500 miles for ME over the course of 100 days, to greet the sunrise at Paxton’s Tower, near Carmarthen.

He is now three quarters of the way along. He has faced a wide range of weather, and a knee injury, and been joined by friends and family.

He “feels lucky to be doing something people with ME can’t” as so many are in the “slow lane”, [though Ffion in her poem reminds us that some of us are not even in the slow lane but “on the hard shoulder!”]

We are grateful to people who have supported Rob and donated:

WAMES  £1,000

ME Research UK  £1,343

Invest in ME Research £1,230

And Rob’s fundraising challenge is not over yet! Donate here

He is also taking time to record interviews, “raising awareness and educating about this debilitating disease that has for too long been neglected, resulting in #millionsmissing from their own lives.” Herre is a clip from his interview with Jan Russell about the work of WAMES in Wales.

So far there have been 3 Discussions at Dawn with

• Jan Russell, chair of WAMES
• Dr Nina Muirhead    Doctors with ME
• Karen Leslie, from Physios for ME

Rob has taken on this challenge on top of caring for his youngest son, who is currently bedbound. Fortunately he has the support and technical expertise from other family members, to whom we can thank for his online presence:

500 miles for ME web page      Discussions at dawn

Facebook: 500miles4ME      Twitter/X: @500miles4ME 

MEA Count ME In survey of  health and social care for ME/CFS and Long COVID 

7,303 people in the UK completed the ME Association’s survey:

• 85% (6,208 people) had a diagnosis of ME/CFS
• 10% (730) had a diagnosis of Long Covid
• 5% (365 people) were undiagnosed but experienced the 4 core symptoms of ME/CFS

In general, experiences with the NHS were more likely to be rated poor than good and were worse for ME/CFS than Long Covid:

• Only 8% of those with ME/CFS rated the NHS as good or excellent, and with Long Covid it was 15%.
• Top barriers to good care were long waiting times, not being listened to or believed, and ineffective treatments.
• Every region in the UK scored badly. More than 50% of regions received a very poor or poor opinion. Wales, Northern Ireland, West Midlands, Southeast England, and Scotland received over 65%.
• There are many barriers to receiving a timely diagnosis – the main ones being that people were diagnosed with a different condition, not being referred to specialists by GPs, long waits for tests or referrals, and not being taken
  seriously.

In Wales

69% of survey participants said that the support they had received from the NHS for ME/CFS was poor or very poor.

Only 35% of Welsh participants found the specialist services for ME/CFS to be good or excellent [We don’t know what these ‘specialist services’ in Wales were!]

WAMES will be bringing these results to the attention of the Health Boards in Wales as they work to develop services for people with ME/CFS. Please let us know if you see any improvement in the service you get from GPs or other health and social care professionals. Contact jan@wames.org.uk or any member of the team.

#ImplementNICE mecfs

Read the full MEA survey results

Disbelief and Disregard in health and social care for people with Energy Limiting Conditions (ELC) Part 2

A research project into Energy Limiting Conditions (ELC) wanted to understand the problems people experience getting the support they need from health and social care services.

Part 2 of the research highlights the psychological harms experienced by the participants due to discrimination.

“disbelief made me feel worthless”: the impact of poor healthcare on mental health and wellbeing

Disbelief and Disregard Damages People’s Mental Health

Experiences of “medical gaslighting” left participants feeling traumatised, distressed, and depressed. Participants explained how being disbelieved when they sought medical help made them
question their “value”, core beliefs and self-knowledge.

Disbelief and Avoidance of Medical Care

Being disbelieved erodes the trust that patients have in healthcare professionals. Routine disbelief and disregard become routine experiences, they become reluctant to seek help and they begin to avoid medical encounters as much as possible, leading to worsening health.

Impact of Disbelief on Relationships with Friends and Family

In addition to the breakdown in relationships with healthcare professionals, participants also explained how the disbelief of healthcare professionals, amplified through the media, has a negative impact on relationships with friends and family.

Recommendations – A pathway to Equality:

• The medical profession must listen and believe
• Better patient pathways and quality of care are needed for people with ELC.
• Training of all health, social care, and welfare professionals must include information about energy limiting conditions.
• Institutional sexism in health, social care and welfare systems must be tackled along with racism, ageism, homophobia, ableism, transphobia, fatphobia etc.
• Simpler ways for people with ELC to access support in welfare, social care, employment and education are needed.
• People with ELC must be part of conversations about policy and practice that affects them, and equal partners in research on ELC.

Read more about the psychological harms

An introduction to ELCs & the Disbelief and Disregard project

Disbelief and disregard project website