A qualitative study of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients’ dissatisfaction with healthcare services, 2023, Melby and das Nair

Full title: ‘We have no services for you… so you have to make the best out of it’: A qualitative study of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients’ dissatisfaction with healthcare services

Introduction

People should have access to healthcare services that are effective, safe and secure, patient-centred, and coordinated and continuous. One group that has consistently reported negative experiences and feels dissatisfied with services are patients with Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS). The objective of this study was to develop a deeper understanding of the experiences of dissatisfaction among ME/CFS patients and explore the reasons for such dissatisfaction.

Methods
We conducted in-depth interviews with 48 people from 24 households (comprising patients and family members), providing insight into the experiences of 37 ME/CFS sufferers in Norway. The participants were purposively sampled and included persons of different ages, genders, time since having the condition (3–30 years), and severity.

Results
Four main themes were developed: (1) ‘Nonexistent services’ cover patients’ experience that healthcare services had nothing to offer them after receiving their ME/CFS-diagnosis. (2) ‘Nonpersonalised services’ documents experiences where patients did receive services, which in theory was appropriate for relieving a specific health problem, but in practice were experienced as inappropriate because they were not adapted to the patient's need. (3) ‘Slow services’ address patients’ experience of getting services too late (or too little) to be useful. (4) ‘Wrong services’ comprise patients’ experiences of being offered and/or ‘forced’ to accept services that they felt were inappropriate for their health problems.

Conclusions
Providers’ lacking knowledge of the condition and lack of precise recommendations for follow up may partly explain unsatisfactory experiences. Providers’ belief (or disbelief) in the condition could furthermore influence caregiving. Also, systemic issues in the healthcare sector, like high workloads and bureaucracy, can negatively affect care provision. Finally, users’ unsatisfactory experiences may also be due to a lack of patient involvement in the design of such services. Further research should investigate how patients can be involved in service design, and also providers’ perspectives on caregiving and the barriers they experience for providing high-quality care.

Patient or Public Contribution
The ME-patient organisation suggested research topics to the call from which this study got funding. Patients and caregivers provided feedback during analysis and interpretation of data.

Open access, https://onlinelibrary.wiley.com/doi/10.1111/hex.13900

 

Probably a report that will be filed and forgotten.

 

Some quotes from the article:

"ME/CFS participants faced a lack of clinical care, information, advice, and practical health on how to look after their own health. This made them feel abandoned and left to care for themselves, coping with a disabling condition. This, in turn, led several participants to turn to complimentary and/or experimental medicine, and/or to a withdrawal from social and public life and healthcare services altogether.

[...]

Some participants did receive services, which in theory were targeted and appropriate for relieving a specific (health) problem. This included services like home healthcare, follow‐up of health problems other than ME/CFS, and practical home help (like cleaning). However, in practice, since these services were not adapted to patients’ specific needs, they were experienced as inappropriate and even damaging, making patients more ill. For example, ME/CFS‐patients are typically easily exhausted, and most are sensitive to light, sounds, noise, smells, and so forth, and yet a common experience was that the services did not sufficiently pay attention to such challenges.

[...]

This led to patients either refusing to receive the service or terminating nonmandatory services. For others, it led to pushing themselves too much, enduring difficult situations, and getting more ill as a result.

[...]

It is important to clarify that we are not advocating or arguing for or against any specific form of treatment or service, but only reporting what our participants felt was the ‘wrong service’ for them. Many participants had experienced being enrolled in rehabilitation or treatments that they felt did not respond to their problems. Participants were particularly critical of various cognitive therapies and treatments that were not developed for people with ME/CFS."​

 

The way I feel about healthcare services for ME/CFS in my country is that they don't exist. Some doctors have superficial knowledge about ME/CFS or understand it due to its similarity to other illnesses, others are totally ignorant and even feel proud and smile with superiority when telling us that we have some sort of mental health problem.

It's awkward when some idiot tries to persuade me that obvious orthostatic intolerance is anxiety, even after I tell them it's aggravated by exertion and relieved by making blood flow towards the chest and head through various postural interventions.

Even if we don't have a treatment per se, I can't help but feel that with some good will and good knowledge, a service could still make a big difference and maybe find some treatments in some cases. I feel like a victim of systemic discrimination.

It could be worse, but it's unexcusably bad. A lack of even seriously trying.