Tag: workshop

Under-Served Groups and Myalgic Encephalomyelitis Research Workshop; Multiple Barriers to Effective Healthcare, Research and Public Participation

Abstract:

Public involvement in research and other initiatives for myalgic encephalomyelitis (ME) (also known as chronic fatigue syndrome) has been crucial in raising awareness of the disease and exposing inadequate healthcare and research funding. An online workshop on ME research and under-served groups took place in July 2024, organised by the first author, a person with ME. The workshop illustrated very low prevalence and thus barriers to healthcare as well as limited research in people from under-served groups, who appear doubly disadvantaged by their illness and their socioeconomic and/or ethnic background.

Three particular challenges were suggested to account for these disparities: stigma, lack of knowledge (within the general public, amongst healthcare workers and policy makers) and lack of power, particularly in improving current deficiencies. These challenges appear to be significant factors in preventing increased research funding and healthcare provision for ME generally.

We call on government and funding bodies to provide strategic funding to correct years of systemic under-resourcing. Widespread educational initiatives should alert healthcare workers and the public to the possible presence of ME in people from under-served groups. Research is now urgently needed to understand the barriers to diagnosis and care for people with this illness, particularly for those from under-served groups.

PATIENT OR PUBLIC CONTRIBUTION: The first author, a person with ME, was a patient representative on the government-initiated Research Working Group. As a result, she organised a series of online workshops on ME clinical research, attended by researchers, clinicians, charity representatives and people with ME. She directed the workshops and people with ME actively participated in the discussions. The last workshop examined ME research and under-served groups. The workshop was chaired by the third author and attended by the second author. The first author conceived the article and wrote it in consultation with the second and third authors.

Source: Bolton MJ, Chew-Graham CA, van Marwijk H. Under-Served Groups and Myalgic Encephalomyelitis Research Workshop; Multiple Barriers to Effective Healthcare, Research and Public Participation. Health Expect. 2025 Apr;28(2):e70214. doi: 10.1111/hex.70214. PMID: 40094174; PMCID: PMC11911926. https://pmc.ncbi.nlm.nih.gov/articles/PMC11911926/ (Full text)

Managing Energy, and Shaping Care: Insights from Adults with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Through Co-Production Workshops

Abstract:

Background: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex, debilitating condition characterised by severe fatigue that is not relieved by rest and is often exacerbated by physical or mental activity. A key challenge for individuals with ME/CFS is energy management and to date, the only recommended strategy is “activity pacing.” This approach involves balancing activity and rest to avoid overexertion and minimise the risk of symptom exacerbation, commonly known as “post-exertional malaise”(PEM). A recent systematic review highlighted significant shortcomings in activity pacing interventions for ME/CFS, noting that they lacked rigour, were brief, and did not follow guidelines or integrate recommended technology, limiting their relevance for modern energy management. To address these gaps, the present study aimed to explore ME/CFS patients’ and health practitioners’ perspectives on approaches to energy management, how their understanding of energy management has evolved over time, and their recommendations for future interventions concerning energy management.

Method: Eight individuals with ME/CFS participated in six one-hour long online co-production workshops with two researchers, with the option to provide input through written responses. Additionally, three health practitioners shared their perspectives via email. Thematic analysis of the data identified several key recommendations for improving ME/CFS care.

Results and conclusions: Workshops highlighted the need for early support, healthcare provider training, and public education to combat stigma and misconceptions around ME/CFS. Participants emphasised patient collaboration, research-informed practices, rigorous research, multidisciplinary teams, and the integration of technologies like mHealth, along with a comprehensive approach including sleep, diet, and psychological support for better symptom management and activity pacing.

Source: Thornton EJ, Hayes LD, Goodwin DS, Sculthorpe N, Prior Y, Sanal-Hayes NEM. Managing Energy, and Shaping Care: Insights from Adults with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Through Co-Production Workshops. Am J Med. 2025 Feb 15:S0002-9343(25)00093-2. doi: 10.1016/j.amjmed.2025.02.008. Epub ahead of print. PMID: 39961545. https://www.amjmed.com/article/S0002-9343(25)00093-2/fulltext (Full text)