Are you good with figures?

WAMES is looking for a Treasurer

The Treasurer’s role is critical to the work of WAMES and will be a key member of the Finance & Fundraising Team.

It is an exciting time for the ME community in Wales as health services are being developed throughout the country, new awareness opportunities are appearing as face-to-face meetings are starting up again, and a new website is planned. WAMES is VERY busy!

The role of the treasurer is to:

• ensure that proper financial records and procedures are maintained so we know how much money we have received and how much we are spending
• give the management committee an understanding of WAMES’ financial affairs and advise on budgets, funding needs etc.

The management committee shares the responsibility for keeping WAMES solvent (and we are insured!) but we need one (or two) people to keep the accounts and records accurate and the charity legal.

Our AGM is planned for March 2024 and this would be a good time to meat the Team. No knowledge of ME is necessary so please ask friends, families and colleagues if they would like to join a friendly Team working hard to support and advocate for a growing number of ill and disabled Welsh residents.

Arrange an informal chat with our Volunteering Support Officer: sharon@wames.org.uk                          Download details

Please note:

• Training can be arranged & expenses will be paid
• Most tasks can be carried out from home
• Team meetings are virtual so internet access must be possible
• ‘Role share’ is possible
• You don’t have to be knowledgeable about ME
• The posts will give useful experience to add to your CV

#newWAMESwebsite – we have the money!

Almost a year after launching our fundraising challenge for a new website we have reached our goal!

Many people have helped along the way to reach a total of £650 and Rob’s #500MilesforME walking challenge fundraising has brought us over the finishing line. Thsnks to all who supported him in his mammoth effort.

Find out why we set a fundraising goal of £1,500:

#newWAMESwebsite fundraising challenge!

We can now finalise our plans for the new website, but it is not too late to let us know what YOU would like to see on the site.

What features would make the site easier to navigate for YOU?

Contact jan@wames.org.uk or use the website contact form.

Exploring the neurocognitive consequences of PEM in ME

Canadian researcher Dr Alain Moreau talks about his team’s research funded by OMF, into Post Exertional Malaise in ME/CFS:

“Our team developed a standardized test lasting 90 minutes to induce PEM in ME/CFS patients using a mechanical arm stimulation with an inflatable cuff. We included both people with ME/CFS and sedentary healthy individuals in our study. Both groups had blood drawn and underwent cognitive testing before and after the PEM test.

Inflatable arm cuff – Developed by researchers at UdeM and the CHU Sainte-Justine, the innovation allows testing of patients who cannot participate in clinical studies due to the severity of their condition. [UDEM Nouvelles 2020]

Our initial findings indicate that ME/CFS participants experienced cognitive impairment after the PEM test, although a significant variation in individual responses was observed. This prompted us to divide the participants into three subgroups based on their cognitive responses.

This stratification allowed us to notice how some cognitive domains seem more affected depending on the cluster, namely memory and attention…

These subgroups align with specific microRNAs (miRNAs), which are small molecules that regulate genes. Interestingly, these same miRNAs are linked to other neurological disorders, suggesting their potential role in cognitive function.

Our future research will involve looking for more miRNAs and other molecules related to various aspects of cognition (like attention, memory, and executive function) in the context of ME/CFS. These results will contribute to a better understanding of the disease, particularly its impact on brain fog and other types of cognitive impairment.”

Exploring the neurocognitive consequences of post-exertional malaise in myalgic encephalomyelitis, by Corinne Leveau, Iurie Caraus, Anita Franco, Alain Moreau in Journal of the Neurological Sciences Volume 455, Supplement, December 2023, 122590

Changes to physiological pathways similar in ME/CFS and Long COVID

A small study in New Zealand of the immune cell proteome in Long COVID, ME/CFS and healthy people uncovered “overlapping protein clusters and enriched molecular pathways particularly in immune functions”.

Senior researcher Prof Warren Tate says:

“It highlights within our community there are significant numbers of people debilitated now with disrupted immune systems, dysfunctional energy production, and disturbed brain regulation of their overall physiology that severely disrupts their family lives, ability to work and participate in their communities long-term, and that these people need support from all levels of society.

Therapeutic targeting of the immune response/inflammatory pathways could be effective.

This also means that the conditions can benefit from a coordinated treatment strategy, said the researchers.

“Immunotherapy for treating specific features of a disturbed immune system for many diseases is in a revolutionary phase of development and should have potential for application to ME/CFS and Long Covid patients now the specific changes in their dysfunctional immune systems are being carefully documented,”

A pilot study on the immune cell proteome of long COVID patients shows changes to physiological pathways similar to those in myalgic encephalomyelitis/chronic fatigue syndrome, by Katie Peppercorn,
Christina D Edgar, Torsten Kleffmann & Warren P Tate in Scientific Reports volume 13, no: 22068 (2023)

Research abstract

Of those infected with severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), ~ 10% develop the chronic post-viral debilitating condition, long COVID (LC).

Although LC is a heterogeneous condition, about half of cases have typical post-viral fatigue with onset and symptoms that are very similar to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). A key question is whether these conditions are closely related.

ME/CFS is a post-stressor fatigue condition that arises from multiple triggers. To investigate the pathophysiology of LC, a pilot study of patients (n = 6) and healthy controls (n = 5) has used quantitative proteomics to discover changes in peripheral blood mononuclear cell (PBMC) proteins.

A principal component analysis separated all long COVID patients from healthy controls. Analysis of 3131 proteins identified 162 proteins differentially regulated, of which 37 were related to immune functions, and 21 to mitochondrial functions. Markov cluster analysis identified clusters involved in immune system processes, and two aspects of gene expression-spliceosome and transcription. These results were compared with an earlier dataset of 346 differentially regulated proteins in PBMC’s from ME/CFS patients (n = 9) analysed by the same methodology.

There were overlapping protein clusters and enriched molecular pathways particularly in immune functions, suggesting the two conditions have similar immune pathophysiology as a prominent feature, and mitochondrial functions involved in energy production were affected in both conditions.

In the media

Medical Life Sciences: Long COVID and ME/CFS patients could benefit from a coordinated treatment strategy

Newshub: Dunedin researchers reveal strong link between long COVID and chronic fatigue syndrome

NZ Herald: Long Covid, chronic fatigue links may help with remedies – researcher

University of Otago news: Strong links found between Long COVID and ME/CFS: Study

Medical express: Strong links found between long COVID and myalgic encephalomyelitis/chronic fatigue syndrome

Compelled loneliness and necessitated social isolation:

“It’s like being on the other side of a mirror, just looking in”

Natalie Wotherspoon interviewed 42 people with ME and found that loneliness can be an integral part of living with ME. She found 2 contriubutions to that:

• Necessitated social isolation concerns how ME symptoms can make social lives increasingly restricted.
• Compelled loneliness highlights how the combined experiences of both stigma and contested illness can lead to social withdrawal and rejection, which create a sense of loneliness.

The article argues that loneliness and social isolation can be conceptually distinct yet recursive and overlapping. With the worsening of ME, the participants experienced a cycle of loneliness, in which social isolation and loneliness reproduced each other.

Three key themes draw attention to how loneliness is affected by the situational aspects of living with a chronic and contested illness:

1. spatial and temporal restrictedness
2. communicative alienation and
3. discreditation.

The article highlights how health challenges can impact on loneliness and how the stigma of contested illness exacerbates loneliness, and… how it can be difficult to break a loneliness cycle when people have prolonged health challenges that can prevent them from acting upon loneliness.

CONCLUSION
This study contributes to understanding how loneliness and social isolation are experienced by people who have been diagnosed with ME, and potentially other contested conditions.

The stigmatisation of ME and loneliness can result in the needs of people with ME being overlooked and marginalised. Interventions that aim to support ME patients experiencing loneliness need to consider incorporating individual’s social needs and their health challenges.

Promoting meaningful and empathetic relationships should be prioritised over increasing social connections.

Read the article

MERUK: Loneliness and social isolation in ME/CFS

Although not discussed in detail in the research paper, ME Research UK notes that interventions which aim to reduce loneliness – not specific to those with ME/CFS – are often targeted at older adults, or involve an element of physical activity. While web- and phone-based interventions have been developed, and are in theory more accessible, these still require energy, and may lead to post-exertional malaise. In addition, the stigma and misunderstanding faced by those with ME/CFS may act as a barrier to participation in interventions that are not specific to the disease.

Knowing more about how the experiences of people with ME/CFS relate to loneliness may help researchers identify areas for intervention, which are both more accessible and place less responsibility on the person with the disease to make changes.

Christmas greetings from all at WAMES

WAMES is run by volunteers, many of whom have ME or care for us. We will be taking some time off over the festive period so we can start the new year refreshed (hopefully!).

WAMES helpline hours
helpline@wames.org.uk
0290 2051 5061
Closed: 23 December – 1 January
Reopen: 2nd January
Feel free to email queries and we will reply as soon as possible.

Alternative sources of help

The Samaritans can be contacted for emotional support 24 hours a day, 7 days a week.

English – 116 123 – free number (24 hours a day, 7 days a week)
Cymraeg – 0808 164 0123 – free number (7pm-11pm – check times on the website)

Meic Cymru – Children and young people up to age 25 can also contact Meic by phone, email, SMS text and instant messaging.

8am to midnight, 7 days a week
FREEPHONE: 0808 802 3456
SMS TEXT: 84001
IM/Webchat: www.meic.cymru.org

CALM – Campaign against living miserably – 365 days a year

Helpline 5am to midnight
Freephone: 0800585858
Webchat: www.thecalmzone.net/

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.

https://me-pedia.org/

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

https://me-pedia.org/

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.

#newWAMESwebsite

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’

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

Background:

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.

Methods:

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).

Results:

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.

Conclusion:

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.

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