Give donations ‘In lieu of gifts’ – to aid our #newWAMESwebsite Fundraising Challenge
Why not celebrate your next special occasion by asking your friends and family to lend support to people with ME/CFS?
By asking your friends and family to donate to us instead of giving gifts at a birthday, Christmas, anniversary or wedding, you can enjoy your special day knowing you are making a real difference to the lives of people with ME/CFS.
When adding the suggestion to your gift ‘wish list’ remind the donor to tell the treasurer which occasion they wish to celebrate when they send cheques or transfer money.
Account name: Welsh Association of ME & CFS
Account Number: 76392081
Sort Code: 09-01-55
Treasurer: Cornerstones, Clinton Road Lane, Penarth, Vale of Glamorgan CF64 3JD
OR set up a fundraising page on a fundraising platform to allow people to donate by debit or credit card.
Decode ME – the world’s largest DNA study of ME/CFS
Led by Dr Chris Ponting the study aims to uncover whether the disease is partly genetic and, if so, help pinpoint what causes it.
They need tens of thousands of people to take part from home by taking the questionnaire and providing a saliva sample to study their DNA. You can do both from home.
They need 25,000 DNA samples and even more people to take the questionnaire.
They are also looking for 5,000 DNA samples from people who developed ME/CFS after a Covid-19 infection.
Developing curative therapies for Post-COVID and ME/CFS
Prof Carmen Scheibenbogen and German colleagues believe there is a need to explore treatments for ME/CFS and long COVID even though research hasn’t yet uncovered the full cause/s of the conditions and reliable diagnostic tests.
They have produced a list of drugs they believe are worth evaluating but only on strict subgroups of patients, defined by the WHO for PCS and the Canadian criteria for ME/CFS, using a consistent process.
“Our concept of a multipronged clinical trial platform approach addresses the complexity and heterogeneity of PCS and ME/CFS, enabling to test numerous drugs in clinical trials in a harmonized manner accompanied by comprehensive mechanistic studies. Such an approach will pave the way for more rapid development of drugs for PCS and ME/CFS to find therapeutic solutions for specific subgroups and finally all patients.
Further, it will allow the development and identification of precise diagnostic, prognostic and companion biomarkers ultimately leading to targeted and individualized therapies combatting the different disease mechanisms. Finally, the identification of biomarkers predicting response to treatment provides strong evidence for causative pathomechanisms.”
Fighting Post-COVID and ME/CFS – development of curative therapies, by Carmen Scheibenbogen, Judith T Bellmann-Strobl, Cornelia Heindrich, Kirsten Wittke, Elisa Stein, Christiana Franke, Harald Prüss, Hannah Preßler, Marie-Luise Machule, Heinrich Audebert, Carsten Finke5, Hanna G Zimmerman, Birgit Sawitzki, Christian Meisel, Markus Tölle, Anne Krüger, Anna C Aschenbrenner, Joachim L Schultz, Marc D. Beyer, Markus Ralser, Michael Mülleder, Leif E Sander, Frank Konietschke, Friedemann Paul, Silvia Stojanov, Lisa Bruckert, Dennis M Hedderich, Franziska Knolle, Gabriela Riemekasten, Maria J Vehreschild, Oliver A Cornely, Uta Behrends and Susen Burock, inFrontiers in Medicine, Sec. Infectious Diseases: Pathogenesis and Therapy: Vol 10, 15 Jun 2023 [doi.org/10.3389/fmed.2023.1194754]
Research abstract:
The sequela of COVID-19 include a broad spectrum of symptoms that fall under the umbrella term post-COVID-19 condition or syndrome (PCS). Immune dysregulation, autoimmunity, endothelial dysfunction, viral persistence, and viral reactivation have been identified as potential mechanisms. However, there is heterogeneity in expression of biomarkers, and it is unknown yet whether these distinguish different clinical subgroups of PCS.
There is an overlap of symptoms and pathomechanisms of PCS with postinfectious myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
No curative therapies are available for neither ME/CFS nor PCS. The mechanisms identified so far provide targets for therapeutic interventions. To accelerate the development of therapies, we propose evaluating drugs targeting different mechanisms in clinical trial networks using harmonized diagnostic and outcome criteria and subgrouping patients based on a thorough clinical profiling including a comprehensive diagnostic and biomarker phenotyping.
Since the new NICE guideline for the diagnosis and management of ME/CFS was published in October 2021 WAMES has been asking the 7 Health Boards in Wales if they plan to implement the guideline and how they plan to improve care.
Some Health Boards have responded more positively than others, though all claimed to be encouraging staff to use the new NICE guideline. The focus on COVID and lack of funding were often cited as reasons for lack of action in developing management services.
WAMES also approached the Welsh Government asking them to play a part in encouraging service development, and finally in March 2023 the Health Minister, Eluned Morgan, announced some funding to extend long COVID services to ‘people with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS), fibromyalgia and other post-viral associated conditions’.
The money is welcome, though many would say ‘too little too late’! WAMES has been following what Health Boards are planning to do with that money.
Aneurin Bevan UHB
ABUHB have not announced any plans to develop services and have not responded to WAMES’ enquiries.
Betsi Cadwaladr UHB
BCUHB began talks with WAMES about developing services for ME/CFS long before money became available. Those plans are now being incorporated into plans for a chronic conditions service. There is still an interest amongst some staff members in meeting the needs of people with ME/CFS in line with NICE, including the new lead of the CFS/ME service in Llanfairfechan, and WAMES will continue to engage with the service commissioners to ensure ME/CFS doesn’t get overlooked again.
Cardiff and Vale UHB
Plans are well underway to develop a Long Term Conditions service in the Cardiff and Vale area. A Co-production group of people interested in many long term conditions has been working on self-management tools such as the development of the Keeping me well website. This is a work in progress and its advice for people with ME/CFS still needs to be improved!
WAMES has been contributing information for the service design process, and planners have been investigating other ME/CFS services for insights and exploring the possibility of medical input to this rehabilitation service.
A soft launch is expected in 2023. As they aim to cater for many conditions with a limited budget and staff, we may find that it will take time to roll out all aspects of an ME friendly service. Hopefully the invitation to WAMES and people with ME to offer constructive criticism will continue.
Cwm Taf Morgannwg UHB
WAMES has met with service designers to explain the needs of people with ME/CFS and promote the NICE guideline. Plans for the Long Term Conditions service are underway and will aim to include services for ME/CFS in line with NICE, although it is uncertain whether medical professionals will be involved. [A GP’s involvement has now been confirmed 14/6/23]
Hywel Dda UHB
Plans to extend the Long COVID service to other conditions are in the early stages but 2 staff members are actively investigating the best way to integrate ME/CFS services into that. They are also talking with WAMES and taking into account the results of engagement with patients in 2014-8.
Powys THB
WAMES has received no information about any plans for an ME-friendly service in Powys and has received no request to engage with patients and carers.
Swansea Bay UHB
SBUB had offered some support previously to some people with ME/CFS through their Rheumatology Occupational Therapy service. They have not revealed any plans to develop further services and have so far not responded to WAMES’ enquiries about it.
You can help!
WAMES will continue to engage with the Health Boards as much as we can. The more information we have about the way the NHS is treating people with ME, the better we can advocate for you.
Tell us about your recent NHS experiences
Ask your GP what is recorded about you in your NHS record. Particularly how your illness is coded (Read, SNOMED etc.)
Ask for a confirmation of an ME/CFS diagnosis if you do not have one. Are they familiar with the NICE guideline?
Alcohol intolerance and myalgic encephalomyelitis/chronic fatigue syndrome
Using questionnaires and statistical analysis Jason & Machiuch found that people with ME/CFS are more likely to experience alcohol intolerance. Those with alcohol intolerance had more symptoms, including orthostatic intolerance.
The literature is mixed about the occurrence of alcohol intolerance among patients with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS). Surveys that asked respondents with ME/CFS whether they experienced alcohol intolerance within a recent time frame might produce inaccurate results because respondents may indicate that the symptom was not present if they avoid alcohol due to alcohol intolerance.
AIM
To overcome this methodologic problem, participants in the current study were asked whether they have avoided alcohol in the past 6 mo, and if they had, how severe their alcohol intolerance would be if they were to drink alcohol.
METHODS
The instrument used was a validated scale called the DePaul symptom questionnaire. Independent t-tests were performed among the alcohol intolerant or not alcohol intolerant group. The alcohol intolerant group had 208 participants, and the not alcohol intolerant group had 96 participants.
RESULTS
Using specially designed questions to properly identify those with alcohol intolerance, those who experienced alcohol intolerance vs those who did not experience alcohol intolerance experienced more frequent/severe symptoms and domains.
In addition, using a multiple regression analysis, the orthostatic intolerance symptom domain was related to alcohol intolerance.
CONCLUSION
The findings from the current study indicated that those with ME/CFS are more likely to experience alcohol intolerance. In addition, those with this symptom have more overall symptoms than those without alcohol intolerance.
A former engineer, Harry Leeming has worked at multiple early-stage start-ups in Silicon Valley as well as in Formula 1.
Harry founded the company Visible, an activity tracking platform for Long COVID and ME/CFS, as a result of his own health condition, and aims to use the platform to help increase our understanding of complex chronic illness.
In this edition of Sunday Conversations with MassME, Harry gave a brief overview of the application, with descriptions of the team, their HRV-centered philosophy, and their plans for the rollout of their own wearable device specifically for pacing and symptom tracking.
He then took questions from the Zoom audience about the timeline of future releases and features, cost and geographic availability of the premium service, the potential for use in research, various user interface ideas and suggestions, and much more.
ME/CFS and Long COVID share similar symptoms and biological abnormalities
“In this review, we first compare the symptoms of ME/CFS and Long COVID, noting the considerable similarities and the few differences. We then compare in extensive detail the underlying pathophysiology of these two conditions, focusing on abnormalities of the central and autonomic nervous system, lungs, heart, vasculature, immune system, gut microbiome, energy metabolism and redox balance.”
Some patients remain unwell for months after “recovering” from acute COVID-19. They develop persistent fatigue, cognitive problems, headaches, disrupted sleep, myalgias and arthralgias, post-exertional malaise, orthostatic intolerance and other symptoms that greatly interfere with their ability to function and that can leave some people housebound and disabled.
The illness (Long COVID) is similar to myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) as well as to persisting illnesses that can follow a wide variety of other infectious agents and following major traumatic injury. Together, these illnesses are projected to cost the U.S. trillions of dollars.
In this review, we first compare the symptoms of ME/CFS and Long COVID, noting the considerable similarities and the few differences. We then compare in extensive detail the underlying pathophysiology of these two conditions, focusing on abnormalities of the central and autonomic nervous system, lungs, heart, vasculature, immune system, gut microbiome, energy metabolism and redox balance. This comparison highlights how strong the evidence is for each abnormality, in each illness, and helps to set priorities for future investigation.
The review provides a current road map to the extensive literature on the underlying biology of both illnesses.
Conclusion
We urge that investigators studying the underlying biology of Long COVID take note of the robust findings in ME/CFS that have not yet been investigated in Long COVID: given the many similarities in the underlying biology of the two illnesses, it is likely that pursuing such abnormalities in Long COVID will prove instructive.
Research into the pathophysiology of these responses has the potential to lead to new strategies for reducing the morbidity of ME/CFS and Long COVID, and of similar illnesses that can follow a variety of infections and non-infectious traumatic injury.
Understand, Diagnose, Treat – International ME/CFS Conference 2023
Leading international ME/CFS experts exchanged their views on the current state of research at the conference held at the Charité Fatigue Center, Berlin on 11-12 May 2023.
Here are links to summaries, reports and videos of many of the presentations, which include:
Autoimmunity to the Autonomic Nervous System: The Mechanism to Many Common Clinical Conditions (Keynote)
Yehuda Shoenfeld, Tel Aviv University, Israel
ME/CFS as Part of the PCS Spectrum
Carmen Scheibenbogen, Charité Fatigue Center, Berlin, Germany
Diagnosing ME/CFS – State of the Art
Uta Behrends, University Clinic/MRI TU Munich, Germany
Autonomic Dysfunction in ME/CFS
Pawel Zalewski, Nicolaus Copernicus University, Torún, Poland
Breathing and Muscular Dysfunction in ME/CFS
Max Liebl, Charité University Medicine, Berlin, Germany
Brain Fog and Neurocognitive Assessment in ME/CFS
Carsten Finke, Charité University Medicine, Berlin, Germany
Sleep Disturbance in ME/CFS
Christian Veauthier, Charité University Medicine, Berlin, Germany
Hypermobility in ME/CFS
Peter C. Rowe, Johns Hopkins University School of Medicine, USA
Poster Presentation: blood cell deformability cytometry
Martin Kräter, Max Planck Institute, Erlangen, Germany
Poster Presentation: COVID-19 – the ultimate nfkB rush and the crucial importance of nicotinic acetylcholine receptors
Marco Leitzke, Helios Clinic, Leisnig, Germany
Poster Presentation: Developing a blood cell-based diagnostic test for ME/CFS, using peripheral blood mononuclear cells
Karl J. Morten, University of Oxford, UK
Poster Presentation: Changes of the gut microbiome in CFS Patients in response to whole-body Cryotherapy
Hanna Tabisz, Nicolaus Copernicus University Toruń, Poland
Poster Presentation: Skeletal muscle abnormalities contribute to post-exertional malaise in Long COVID
Rob Wust, Vrije Universiteit Amsterdam, The Netherlands
Poster presentation: Effects of serum factors in patents with ME/CFS after COVID-19 on endothelial cell function in vitro
Kanchan Dulal, Charité University Medicine, Berlin, Germany
Poster Presentation: Symptom persistence and biomarkers in post-COVID-19/chronic fatigue syndrome
Franziska Legler, Charité University Medicine, Berlin, Germany
Assessing Endothelial Dysfunction
Francisco Westermeier, FH Joanneum University of Applied Sciences, Graz, Austria
Optical Coherence Tomography Angiography and Cell Deformability in ME/CFS
Bettina Hohberger, University of Erlangen, Germany
Novel Biomarkers of Endothelial Dysfunction and Angiogenesis Alterations in PCS and ME/CFS
Martina Seifert, Charité University Medicine, Berlin, Germany
Understanding Post-Exertional Malaise (PEM)
Christian Puta, University of Jena, Germany
Insights from ME/CFS May Help Unravel the Pathogenesis of PCS
Anthony L. Komaroff, Harvard Medical School, USA
Predictors of ME/CFS following EBV and implications for PCS
Leonard A. Jason, DePaul University, Chicago, USA
Immune Signature of ME/CFS
Anna Aschenbrenner, DZNE, Bonn, Germany
EBV Mimicry in ME/CFS
Nuno Sepúlveda, Warsaw University of Technology, Poland
Mitochondrial Dysfunction and Herpesviruses in ME/CFS
Bhupesh Prusty, University of Würzburg, Germany
Treating ME/CFS – State of the Art
Luis Nacul, London School of Hygiene & Tropical Medicine & University of British Columbia, UK
“As an association of physicians and scientists who deal with fatigue, we have made it our mission to provide patients and doctors with assistance in diagnostics and therapy. We offer training events for physicians and provide information material for physicians and patients.
In an interdisciplinary network, we try to investigate the causes of fatigue, develop diagnostic markers and conduct therapy studies.”
On 8th June I will begin my challenge – to walk, 500 miles for ME over the course of 100 days to greet the sunrise at Paxton’s Tower, near Carmarthen.
Each walk will entail a 5 mile round trip and a 650ft elevation and so, over the course of 100 days I will have covered 500 miles and climbed the equivalent of twice the height of Mount Everest!
Three members of my family have been diagnosed with ME including my youngest son, who is currently bedbound, and for whom my wife and I are full time carers. I will be rising at 3.45am, which will allow me to walk before resuming my caring responsibilities.
Over the course of my challenge, I hope to speak to a variety of people, from researchers, to carers, to charities – raising awareness and educating about this debilitating disease that has for too long been neglected, resulting in #millionsmissing from their own lives.
I’m attempting to raise funds for 3 charities who are fighting hard for ME sufferers and their carers:
Please follow this link for more information about my challenge and to donate if you can – any amount would be so appreciated. https://www.500milesfor.me/
I will share regular updates of my walks with you on Facebook
By asking your friends and family to donate to us instead of giving gifts at a birthday, Christmas, anniversary or wedding, you can enjoy your special day knowing you are making a real difference to the lives of people with ME/CFS.
They need tens of thousands of people to take part 
They have produced a list of drugs they believe are worth evaluating but only on strict subgroups of patients, defined by the WHO for PCS and the Canadian criteria for ME/CFS, using a consistent process.
Since the new NICE guideline for the diagnosis and management of ME/CFS was published in October 2021 WAMES has been asking the 7 Health Boards in Wales if they plan to implement the guideline and how they plan to improve care.
Plans are well underway to develop a Long Term Conditions service in the Cardiff and Vale area. A Co-production group of people interested in many long term conditions has been working on self-management tools such as the development of the 
Plans to extend the Long COVID service to other conditions are in the early stages but 2 staff members are actively investigating the best way to integrate ME/CFS services into that. They are also talking with WAMES and taking into account the results of engagement with patients in 2014-8.
Each walk will entail a 5 mile round trip and a 650ft elevation and so, over the course of 100 days I will have covered 500 miles and climbed the equivalent of twice the height of Mount Everest!
