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MEpedia – revamped and expanded

MEpedia – a vital resource for researchers, clinicians and people living with ME/CFS


Do you want to know something about the history, science and medicine of ME, CFS and related diseases?

MEpedia is the place to go! It is a Wikipedia-style encyclopedia written by many different volunteer contributors.

Launched by Jen Brea of MEAction on December 6, 2015, it has now been updated and expanded so that it is more up to date, efficient and accesible.

MEpedia is an important source of information on ME/CFS, and in order to provide researchers, clinicians, and people with infection-associated chronic illnesses with up-to-date resources, they are also expanding the Long COVID content.

Also available – learning the basics guides:

  • Primer for doctors and researchers
  • Primer for family, friends and care providers
  • Primer for journalists
  • Primer for patients
  • Primer for the public
  • Patients in hospitals
  • Best practices for hospitals
  • Guide for patients having surgery

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#newWAMESwebsite fundraising – nearly there!

More donations – nearer to our target!


A big thank you to the donors from the Carmarthenshire ME support group, and all those who contributed through PayPal and Easy Fundraising to give us another £200 towards purchasing a new WAMES website. We now have reached £650 of our £1500 goal.


Rob’s 500 miles for ME fundraising challenge has also raised money for WAMES, which we will receive in 2024. That means we can not only press on with the development our new website in the new Year, but also expand our awareness raising work. His site is still accepting donations online during 2023.

Donating through PayPal while you shop is an easy way to give but you can also raise money for WAMES at NO cost to you through EasyFundraising.

Find out more about our #newWAMESwebsite plans

Donate with PayPal & eBAY

Shop and fundraise through EasyFundraising

Give donations ‘in lieu of gifts’

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Research review: Viral infection as cause of ME/CFS

Viral infections found in people with ME/CFS


Korean researchers searched the medical literature to find which viruses were associated with ME/CFS.

Borna disease virus (BDV), a viral disease of warm-blooded animals, notably horses and sheep, had the strongest links. Other viruses with links were: human herpes virus (HHV)-7, parvovirus B19 enterovirus and coxsackie B virus.

Evaluation of viral infection as an etiology of ME/CFS: a systematic review and meta-analysis by Jae-Hyun Hwang, Jin-Seok Lee, Hyeon-Muk Oh, Eun-Jung Lee, Eun-Jin Lim, Chang-Gue Son in J Transl Med. 2023 Oct 28;21(1):763 [DOI: 10.1186/s12967-023-04635-0]

Review abstract


Myalgic encephalitis/chronic fatigue syndrome (ME/CFS) is a long-term disabling illness without a medically explained cause.

Recently during COVID-19 pandemic, many studies have confirmed the symptoms similar to ME/CFS in the recovered individuals. To investigate the virus-related etiopathogenesis of ME/CFS, we conducted a systematic assessment of viral infection frequency in ME/CFS patients.


We conducted a comprehensive search of PubMed and the Cochrane Library from their inception through December 31, 2022, using selection criteria of viral infection prevalence in ME/CFS patients and controls. Subsequently, we performed a meta-analysis to assess the extent of viral infections’ contribution to ME/CFS by comparing the odds ratio between ME/CFS patients and controls (healthy and/or diseased).


Finally, 64 studies met our eligibility criteria regarding 18 species of viruses, including a total of 4971 ME/CFS patients and 9221 control subjects. The participants included healthy subjects and individuals with one of 10 diseases, such as multiple sclerosis or fibromyalgia.

Two DNA viruses (human herpes virus (HHV)-7 and parvovirus B19, including their co-infection) and 3 RNA viruses (borna disease virus (BDV), enterovirus and coxsackie B virus) showed odds ratios greater than 2.0 compared with healthy and/or diseased subjects. Specifically, BDV exceeded the cutoff with an odds ratio of ≥ 3.47 (indicating a “moderate association” by Cohen’s d test) compared to both healthy and diseased controls.


This study comprehensively evaluated the risk of viral infections associated with ME/CFS, and identified BDV. These results provide valuable reference data for future studies investigating the role of viruses in the causation of ME/CFS.


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ME/CFS Delivery Plan for Wales – WAMES’ proposal

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


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Research: Increased risk of heart attacks & strokes for people with long COVID & ME/CFS

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

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.

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 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).

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.

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WMEA calls on UN to address post-viral illnesses in future pandemic planning

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


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Research: Diagnosing ME/CFS by analysing questionnaires with Machine Learning

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 []


  • 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

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).

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.

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.

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.

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Research: ME/CFS & pregnancy

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

Research abstract:


To identify, synthesise and appraise evidence relating to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and pregnancy.


Mixed-methods systematic review, using convergent segregated design.

Data sources

MEDLINE, EMBASE, Scopus, PsycINFO, CINAHL, MedRxiv, PROSPERO and grey literature sources through 6 August 2023.

Eligibility criteria

We included original research studies, expert opinion and grey literature reporting on ME/CFS and pregnancy/post partum (up to 2 years), risk of pregnancy outcomes with ME/CFS or experiences during pregnancy for mother, partner or health and social care professionals following ME/CFS during pregnancy, all where the evidence was relevant to a confirmed ME/CFS diagnosis prior to pregnancy.

Data extraction and synthesis

Three independent reviewers completed all screening, data extraction and quality assessment. Risk of bias was assessed using the mixed-methods appraisal tool V.2018. Qualitative and quantitative literature was analysed separately using thematic and descriptive syntheses. Findings were integrated through configuration.


Searches identified 3675 articles, 16 met the inclusion criteria: 4 quantitative (1 grey), 11 qualitative (9 grey) and 1 grey mixed-methods study. Of the four quantitative studies that reported on ME/CFS severity during pregnancy:

  • two suggested pregnancy negatively impacted on ME/CFS
  • one found most women had no change in ME/CFS symptoms and
  • one found ME/CFS improved;

this difference in symptom severity across studies was supported by the qualitative evidence.

The qualitative literature also highlighted the importance of individualised care throughout pregnancy and birth, and the need for additional support during family planning, pregnancy and with childcare.

Only one quantitative study reported on pregnancy outcomes, finding decreased vaginal births and higher rates of spontaneous abortions and developmental and learning delays associated with pregnancies in those with ME/CFS.


Current evidence on ME/CFS in pregnancy is limited and findings inconclusive. More high-quality research is urgently needed to support the development of evidence-based guidelines on ME/CFS and pregnancy.


  • Thorough and systematic search for both peer-reviewed and grey literature relating to myalgic encephalomyelitis/ chronic fatigue syndrome and pregnancy that was not limited by date of publication.
  • Inclusion of both qualitative and quantitative evidence from both peer-reviewed and grey literature sources allowed us to explore different aspects of a complex research question.
  • Limited evidence was available, particularly peer-reviewed literature, which restricted the conclusions we were able to make in this study.
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New NHS ME/CFS & Long COVID service in Cwm Taf Morgannwg UHB

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

Find out more: Primary Fatigue Service / Gwasanaeth Blinder Sylfaenol

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ME/CFS Delivery plan: Unhelpful language

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

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