Hope, disappointment and perseverance: Reflections of people with ME/CFS and MS participating in biomedical research..., 2019, Lacerda et al

[Andy]

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.

Open access at https://onlinelibrary.wiley.com/doi/full/10.1111/hex.12857

 

[Hutan]

Some interesting quotes from patients there.

Some about how frustrating and demoralising it is to see research groups claiming breakthroughs, or yet another 'finally proof that it's not just in your head!':

Participants called for researchers to be less concerned about claiming a “breakthrough” in medical science for their own work, and to put greater emphasis on contributing to a collaborative integration of research knowledge which might one day lead to a biomedical test, effective treatments or cure.

Some about how relieved some MS patients were to get a diagnosis after years of disbelief, with incorrect diagnoses of ME or psychological issues:

The study findings highlight levels of distress for ME/CFS patients experiencing disabling symptoms of a disease for which there is no proven biomedical test, shared by MS patients with delayed diagnosis. Exploring the experiences of two patient groups have shed light on some unexpected parallels, which bring into sharp focus the importance of how patients are cared for when diagnosis is unclear, and the deep distress caused when patients feel not accepted or “held” within the patient–doctor relationship.

These mirrored narratives raise the question of whether more progress might be made in treating the patients’ accounts as trustworthy, allowing patients, with or without current diagnosis, to feel validated as people deserving of credence and compassion in the medical relationship.

It might be useful for patient advocacy groups for ME and for MS to join forces more often (or perhaps in countries with very limited resources, for a single charity to cover both diseases). There could be economies of scale achieved, at the national level when advocating and organising research (or as in in this case, developing biobanks), but also when delivering care at the local level. Collaboration of ME charities with the well-resourced and credible MS charities could not only help people with ME but also lessen the suffering of people with MS in the years prior to diagnosis.

 

[Invisible Woman]

Collaboration of ME charities with the well-resourced and credible MS charities could not only help people with ME but also lessen the suffering of people with MS in the years prior to diagnosis.

Years ago I met an MS patient and as soon as she discovered I had ME, she told me she had only been diagnosed with MS for less than a year and a few years before that she had been misdiagnosed with ME. She told me she was hugely relieved to have been rediagnosed with MS, her quality of care, the level of support she received from care professionals and friends and family changed instantly.