How did you feel before you received your MS diagnosis? How did you feel when you got your MS diagnosis? Maybe you’re still waiting for a diagnosis to explain your symptoms.
Prof G recently blogged about an article where patients were misdiagnosed with MS. Even with diagnostic tests available, it can still be difficult to diagnose MS, and clinicians can still sometimes get it wrong. Unfortunately, for those with Myalgic encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) there is no definitive diagnostic test for their illness.
In this study, Lacerda et. al (2018) looked at the views of one group of people with ME/CFS and a separate group with MS on research findings by CureME. Some participants with MS shared their experiences about being disbelieved and judged by doctors, employers, friends, and family pre-diagnosis, who felt that they were inventing or exaggerating symptoms. They reported that they only felt accepted once they had a confirmed diagnosis.
Common themes were that healthcare professionals need to be thoughtful about how they care for people with unclear/uncertain/delayed/mis- diagnoses, and for people who are diagnosed with an illness for which there is currently no cure. They should treat peoples’ accounts as trustworthy, with compassion and validation.
Participants also expressed it was important for research teams to work collaboratively rather than competitively. New research knowledge should focus on fitting into a larger “jigsaw” and less on finding “breakthrough” discoveries.
Participants described getting a definitive diagnosis as a sense of relief, validation, restored social acceptance and ability to access support. Here’s how some of them described how they felt after receiving their diagnoses:
“Oh, thank God for that. Now I can move on.”
“I think for me, to actually be diagnosed was the biggest kick in the teeth I have ever, ever had.”
“It was such a relief to have that labelled and to know that I wasn’t going mad…”
“Yes, that being left in limbo, you don’t know where you are. I was told everything. “You’re just depressed. Go and get some more happy pills” and all the rest of this sort of stuff. You know something is wrong, but you’re not sure what it is.”
Go back to before your diagnosis. Did people believe how you felt? How long did it take to get diagnosed? How many tests did you do before you could finally say, “I have MS”. What was your experience of being diagnosed?
Disclaimer: Please note that the opinions expressed here are those of the author and do not necessarily reflect the position of the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust.
Heather Mah is a PhD researcher at the Wolfson Institute of Preventive Medicine, Barts and the London School of Medicine and Dentistry at Queen Mary University London exploring the experiences of people with MS and healthcare professionals involved with Patient and Public Involvement and Engagement (PPIE).
Lacerda et. al 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 Health Expectations. 2019; 22: 373-384
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 impor- tance 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.