Hope, disappointment and perseverance: Reflections of people with Myalgic encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Multiple Sclerosis participating in biomedical research. A qualitative focus group study

Abstract

Background The Clinical Understanding and Research Excellence in ME/CFS group (CureME) at the London School of Hygiene & Tropical Medicine has supported and undertaken studies in immunology, genetics, virology, clinical medicine, epidemiology and disability. It established the UK ME/CFS Biobank (UKMEB), which stores data and samples from three groups: participants with ME/CFS, Multiple Sclerosis (MS) and healthy controls. Patient and public involvement have played a central role from its inception. Aim To explore the views of participants with ME/CFS and MS on CureME research findings, dissemination and future biomedical research priorities. Method Five ME/CFS and MS focus groups were conducted at two UK sites. Discussions were transcribed and analysed thematically. Results A total of 28 UKMEB participants took part: 16 with ME/CFS and 12 with MS. Five themes emerged: (a) Seeking coherence: participants’ reactions to initial research findings; (b) Seeking acceptance: participants explore issues of stigma and validation; (c) Seeking a diagnosis: participants explore issues around diagnosis in their lives; (d) Seeking a better future: participants’ ideas on future research; and (e) Seeking to share understanding: participants’ views on dissemination. Focus groups perceived progress in ME/CFS and MS research in terms of “putting together a jigsaw” of evidence through perseverance and collaboration. Conclusion This study provides insight into the emotional, social and practical importance of research to people with MS and ME/CFS, suggesting a range of research topics for the future. Findings should inform biomedical research directions in ME/CFS and MS, adding patients’ voices to a call for a more collaborative research culture.

Living with Chronic Fatigue Syndrome during lockdown and a global pandemic

“…Those with Chronic Fatigue Syndrome report a desire to promote an understanding and acceptance of the condition amongst both general and professional audiences [40]. Further engagement with the Chronic Fatigue community and exploration of the issues raised in the present study may support the development and delivery of public health campaigns intended to promote empathy and understanding of Chronic Fatigue Syndrome.…”

European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (EUROMENE): Expert Consensus on the Diagnosis, Service Provision, and Care of People with ME/CFS in Europe

“…Many will be unable to work or do so only on a part-time basis; with some in the milder spectrum of the disease able to work full time, however, often at the cost of enduring significant symptoms and sacrificing their social life and other interests due to the need to rest when not working [24,25]. In the absence of economic analysis on the costs of the disease in Europe, we estimate, based on data from the UK, ME/CFS may cost some 40 billion Euros per year to health services and society [22].…”

“…On the other hand, on some occasions, patients are overinvestigated, with inherent risks and unnecessary costs to individuals and society. People with ME/CFS may easily get trapped into a situation where, while unable to carry on or start meaningful work-or school-related activities, they receive very little guidance from the health sector or support from social services-where they feel disbelieved and neglected and are often failed by the welfare system [24]. Their disability contributes to social isolation, which adds to their burden, and limits their chances of recovery or reintegration in society, by restricting access to healthcare and social support.…”

Elements of Suffering in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected

“…Getting a name for their experience demystifies some of the disturbing uncertainties about their symptoms. Patients strongly desire to understand their illness experience [ 76 , 77 ], and even when ME/CFS patients do not get a diagnosis, they can begin to feel some increasing control when they discern a pattern in their symptoms and discover relationships between activities and symptoms. At the same time, their self-pathologizing and intrusive ideations usually decrease.…”

“…Some ME/CFS patients report a general lack of support, guidance, and knowledge from health care providers and clinicians when they try to find out more about their illness [ 75 ]. Indeed, without biomedical tests for diagnosis, patients can feel they are fighting to persuade their physician (and others) they are physically ill [ 76 ]. In addition, patients and their families often encounter disbelief of their reported symptoms by their physicians [ 83 ].…”