The 3rd Virtual Scientific Conference for the International Association for Chronic Fatigue Syndrome/ Myalgia Encephalomyelitis was held on the 27th-30th July 2022. The conference promoted unpublished data and included both clinicians and biomedical researchers.
This year the conference committee utilised the virtual platform “Gather”, which allowed more interaction between attendees and for researchers to engage with one another, allowing questions to be asked. Essentially this gave the appearance of an online virtual reality conference (see image), from entering the conference room in the virtual setup, the talks were then hosted through zoom.
The talks were grouped into different sections, including: immunology, metabolism, infectious diseases, treatment as well as several sessions on Covid.
A few of the talks this year, were familiar to us from our weekly research roundup, so we have not covered them in this conference report. These were:
- Pre-Illness metabolomics data among college students following mononucleosis and ME/CFS reveals differences in multiple metabolites and metabolic pathways by Leonard A. Jason, DePaul University, USA.
- How to ensure the voice of the severely affected ME/CFS patient is heard in research by Helen Baxter, 25% ME Group, United Kingdom.
- Oxaloacetate improves physical and mental fatigue in ME/CFS and long-COVID by David Kaufman, Centre for Complex Diseases, USA. (Dr Charles Shephard has also provided a comment on this talk, available here.)
Several of the talks have also been documented by Miriam E Tucker from Medscape News and are also available to read on our website, these are:
- Treatments Explored to Ease Post-Viral Symptoms of ME/CFS and Long Covid- available here
- Increasing Data Link ME/CFS, Long COVID, and Dysautonomia- available here
- ME/CFS and Long COVID “Frighteningly Similar, if Not Identical”- available here
- Clinicians Can Help People With Severe ME/CFS, Even Unseen- available here
Due to the format of the conference and the focus on unpublished data, no direct recordings or pictures are available freely as this may jeopardise publication. The full conference programme can be found on the IACFS/ME website here, where recorded presentations may be purchased. Other summaries produced by attendees of the IACFS/ME may also be read on the IASCFS/ME website.
Audio commentary by Dr Katrina Pears
7. BREATHE: A mixed-methods evaluation of a virtual self-management program for people living with long COVID
Rosie Twomey, PhD
University of Calgary, Canada
Dr Rosie Twomey’s work on the BREATHE programme was co-created with Jessica DeMars, who is a respiratory physio.
The BREATHE programme which is the focus of this talk is a self-management programme for Long Covid, which uses:
Breathing,
Rest/recover,
Education,
Activity management,
Thinking/cognition,
Healthy Voice Strategies and
Eating and nutrition.
The fundamental basis of the programme was informed by previous work by the group which analysed Long Covid symptoms as well as qualitative analysis (which includes quotes from patients) (Twoney et al., 2022; Wruz et al., 2022). The work uses the working case definition for Long Covid by WHO.
This programme has a huge focus on pacing, cognitive function and PEM as seen in ME/CFS, however, the programme does not treat Long Covid as the same thing but uses the same founding basis for management, aka best recommendations from other illnesses. The development of the programme started in 2021, and was run three times during which time it was modified and informed through patient preferences and priorities to what it is today.
The BREATHE self-management programme is an online course, which is 8 weeks long with two sessions a week, which last around an hour, with space for questions and socialising after. In conducting this course online, it allows all to attend whether bed-bound or not as well as any missed sessions can then be supplied as recordings or as paper copies. The programme focuses on both learning and support (including peer-support), as well as recognising the isolation that can come with Long Covid.
The programme includes a range of topics, for example: pacing fundamentals and heart rate monitoring, breathing and movement, mental health, nutrition and eating well and sleep (as the acronym for the programme suggests).
In accessing the outcomes and feasibility of the BREATHE programme, both qualitative and quantitative data was evaluated to look at its safety and acceptability. This included looking at the acceptability of the programme by participants but also their fatigue levels in the moment; the burden of fatigue was found to be acceptable (no ongoing increase in fatigue following participation). They found that there was no adverse effect from undertaking the programme with excellent attendance of all participants. This study was also registered as a clinical trial, where 27 participants were enrolled.
In participating in the BREATHE programme, patients reported an improvement in symptoms, amount of daily activities and their emotions as well as a reduction in fatigue. The programme was shown to improve illness trajectory and reduce social isolation, however, it does not lead to full recovery. A future study is needed to show that the improvements are greater than usual care, especially while biomedical research is underway.
This study received no funding and was all paid for by donor support, the research team hope that their paper on this study will be published in September.
(N.B This was Dr Rosie Twoney’s second talk in the conference, her earlier talk was titled “Identifying healthcare system barriers impacting the care of Canadians with myalgic encephalomyelitis”.)
Published studies from this talk
Twomey R et al. (2022) Chronic Fatigue and Postexertional Malaise in People Living With Long COVID: An Observational Study. Phys Ther 102(4):pzac005. Link: doi.org/10.1093/ptj/pzac005
Wurz A et al. (2022) “I feel like my body is broken”: exploring the experiences of people living with long COVID. Qual Life Res (2022). Link: doi.org/10.1007/s11136-022-03176-1
Previous conference talks from the IACFS/ME Conference 2022
- Treatments Explored to Ease Post-Viral Symptoms of ME/CFS and Long Covid- available here
- Increasing Data Link ME/CFS, Long COVID, and Dysautonomia- available here
- ME/CFS and Long COVID “Frighteningly Similar, if Not Identical”- available here
- Clinicians Can Help People With Severe ME/CFS, Even Unseen- available here
- Keynote: Pathophysiology of exercise intolerance in ME/CFS & long COVID- available here
- Feasibility of investigating oxygen consumption (VO2), heart rate variability, blood pressure and lactic acid levels of people with myalgic encephalomyelitis during normal daily activities- available here