Here are my notes on this session. There were 3 short talks. Although grouped under the heading public health, they addressed very different issues, all important for ME/CFS.
3.00 pm - 4.00 pm
PUBLIC HEALTH 1
How to ensure the voice of the severely affected ME/CFS patient is heard in research
Helen Baxter, 25% ME Group, United Kingdom
Note: We have S4ME threads on 2 published papers by Helen Baxter and others on this topic.
Ensuring the Voice of the Very Severely Affected Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patient Is Heard in Research—A Model, 2022,Baxter
Life-Threatening Malnutrition in Very Severe ME/CFS, 2021, Baxter, Speight, Weir
Helen Baxter led research on people with very severe ME/CFS who are being tube fed. She described the awful situation they find themselves in in the UK, often not believed by doctors, severely malnourished, misdiagnosed with anorexia nervosa.
The 5 patients studied all improved once they were assessed and helped by a home enteral nutrition dietician. Some had difficulty swallowing, most didn't have the energy to eat.
The aim of this study was to learn about how such very severely affected people with ME/CFS could be included in research with appropriate adjustments and support. All 5 were very keen to be involved and to contribute to research. Most needed help from carers or researchers with providing information, needed to be able to cancel appointments at short notice, not be given any deadlines, and found phone better than home visits. Some need paper questionnaires, others manage better with brief phone calls or or texting.
All options need to be provided. Questionnaires need to be simple to manage. All 5 completed the study, one needing a year to complete it.
The conclusion was that people with very severe ME/CFS can, and want to, participate in research provided suitable provision is made, including providing support, and there are no time constraints.
i found this a really moving and valuable piece of work, and hope researchers on ME/CFS studies will explore the possiblity of including very severe patients in their research, and make suitable provision for them to do so where possible.
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Identifying healthcare system barriers impacting the care of Canadians with myalgic encephalomyelitis
Rosie Twomey, University of Calgary, Canada
Working with the ICanCME Research Network, Dr Twomey is currently researching the difficult situation patients are faced with in Canada.
The study is in two parts, the first of which is undeway and consists of interviewing health care professionals with either experience treating ME/CFS or lived experience of ME/CFS with semi structured interviews on the topic of healthcare system barriers.
Preliminary results suggest areas of concern include lack of data, lack of clinical education, poor remuneration of clinicians specialising in ME/CFS so they leave the field, only 3 specialist centers in the whole of Canada, stigma, gender and ethnic bias, local variations in provision, and no clear structures and care pathways.
The second phase will be patient focus groups led by patients to discuss the issues raised by the clinicians.
They hope this research will catalyse more research funding and progress towards better care.
My comment is that although I don't know the health system in Canada, a lot of the issues sound very much like those experienced in many other countries too.
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ME/CFS: limitations of vocabulary and language
Geoffrey Hallman, Southern Cross University, Australia
Hallman is studying the effect of cognitive dysfunction on people with ME/CFS communication with social institutions, including clinicians and others we have to deal with. His focus was particularly on words - both word finding problems and not having appropriate words understood by others to describe our symptoms, and the miscommunication and misunderstanding this creates. For example, we use the word 'fatigue' as an umbrella term to describe feeling very ill, whereas the hearer thinks 'tired' and dismisses it as a minor symptom everyone experiences.
Hallman conducted his study with interviews in patients' homes. He used 'grounded theory' and 'thematic analysis' to analyse the results.
Themes he found included the mix of difficulty word finding and different understanding of terms between the patient and clinician leading to misunderstandings and breakdown in communication. Patients have difficulty describing their symptoms and correcting false assumptions made by others.
He concludes that people in social institutions dealing with people with ME/CFS need to understand ME/CFS, to avoid jargon, to really listen and give iterative feedback to check they have understood, and suspend prejudice and assumptions.
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My overall takeaway from the 3 talks in this session is that if we had a really good medical care and research systems and equitable funding and recognition for ME/CFS, none of this research would be necessary. We on this forum are aware of all these issues raised in these 3 presentations, and how they could be overcome, but as it is, we need researchers like these to try to get the message across to the wider health care world just how badly served ME/CFS is at present.
