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
Carers Week 2023 campaign: Cross-Government action to identify and support carers
New Carers Week research reveals 19 million people in the UK have provided unpaid care, but haven’t identified as a carer.
Without proper identification, carers miss out on vital support – impacting both their finances and their health. The research shows that providing unpaid care has had a negative impact on the health and wellbeing of 8 million people in the UK.
The government needs to act now to protect carers’ wellbeing and prevent them from being pushed into poverty. Cross-government action is needed to identify and support carers.
Carers Wales says: “This Carers Week, we want communities across the UK to come together to recognise the huge contribution unpaid carers make to society.”
Getting it Right: Addressing myths about the 2021 NICE guideline for ME/CFS
Brian Hughes is an academic psychologist and university professor in Galway, Ireland with a blog called the Science bit. On World ME Day 2023 he spoke to the Hope 4 ME & Fibro NI conference in Belfast.
He outlined eight pieces of misinformation regarding the new guideline (and about ME/CFS more generally) that are currently being pushed from certain quarters.
These myths included:
“CBT and GET are ‘evidence-based’ treatments for ME/CFS!”
“Evidence cannot just ‘change’!”
“The NICE review was driven by patient advocacy!”
“The defenders of the old guideline are simply standing up for science!”
“You cannot evaluate ME/CFS outcomes using objective measures!”
Australian researchers found 101 key studies in ME/CFS that varied in efficacy, quality, and potential to be developed into a diagnostic biomarker. Most were blood-based and measured a range of dysfunction.
“Many of these biomarkers were studied in isolation but may be part of a complex multidisciplinary process as displayed by some of the overlap between observations made and extensive crosstalk between each system. There is evidence of widespread genetic, immune, neurological, mitochondrial and endocrine differences in ME/CFS compared with healthy controls.”
Immune dysfunction appeared to be key and the use of lymphocytes a potential model, which are a type of white blood cell in the immune system and include natural killer cells, T cells, and B cells. To aid future biomarker research the researchers concluded there is a need for multidisciplinary research and uniform protocols.
Background
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a multifaceted condition that affects most body systems. There is currently no known diagnostic biomarker; instead, diagnosis is dependent on application of symptom-based case criteria following exclusion of any other potential medical conditions. While there are some studies that report potential biomarkers for ME/CFS, their efficacy has not been validated.
The aim of this systematic review is to collate and appraise literature pertaining to a potential biomarker(s) which may effectively differentiate ME/CFS patients from healthy controls.
Methods
This systematic review was conducted according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses and Cochrane review guidelines. PubMed, Embase and Scopus were systematically searched for articles containing “biomarker” and “ME/CFS” keywords in the abstract or title and if they included the following criteria:
(1) were observational studies published between December 1994 and April 2022;
(2) involved adult human participants;
(3) full text is available in English
(4) original research;
(5) diagnosis of ME/CFS patients made according to the Fukuda criteria (1994), Canadian Consensus Criteria (2003), International Consensus Criteria (2011) or Institute of Medicine Criteria (2015);
(6) study investigated potential biomarkers of ME/CFS compared to healthy controls. Quality and Bias were assessed using the Joanna Briggs Institute Critical Appraisal Checklist for Case Control Studies.
Results
A total of 101 publications were included in this systematic review. Potential biomarkers ranged from:
genetic/epigenetic (19.8%)
immunological (29.7%)
metabolomics/mitochondrial/microbiome (14.85%)
endovascular/circulatory (17.82%)
neurological (7.92%)
ion channel (8.91%) and
physical dysfunction biomarkers (8.91%).
Most of the potential biomarkers reported were blood-based (79.2%).
Use of lymphocytes as a model to investigate ME/CFS pathology was prominent among immune-based biomarkers. Most biomarkers had secondary (43.56%) or tertiary (54.47%) selectivity, which is the ability for the biomarker to identify a disease-causing agent, and a moderate (59.40%) to complex (39.60%) ease-of-detection, including the requirement of specialised equipment.
Conclusions
All potential ME/CFS biomarkers differed in efficiency, quality, and translatability as a diagnostic marker. Reproducibility of findings between the included publications were limited, however, several studies validated the involvement of immune dysfunction in the pathology of ME/CFS and the use of lymphocytes as a model to investigate the pathomechanism of illness.
The heterogeneity shown across many of the included studies highlights the need for multidisciplinary research and uniform protocols in ME/CFS biomarker research.
This review aims to illustrate exercise pathophysiologic commonalities between PASC and ME/CFS that will help guide future diagnostics and treatment.
Research abstract:
Topic importance:
Post-Acute Sequelae of SARS-CoV-2 (PASC) is a long-term consequence of acute infection from coronavirus disease 2019 (COVID-19). Clinical overlap between PASC and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has been observed, with shared symptoms including intractable fatigue, post-exertional malaise, and orthostatic intolerance. The mechanistic underpinnings of such symptoms are poorly understood.
Review findings:
Early studies suggest deconditioning as the primary explanation for exertional intolerance in PASC. Cardiopulmonary exercise testing (CPET) reveals perturbations related to systemic blood flow and ventilatory control associated with acute exercise intolerance in PASC, which are not typical of simple detraining.
Hemodynamic and gas exchange derangements in PASC have substantial overlap with those observed with ME/CFS, suggestive of shared mechanisms.
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!
