Ensuring the Voice of the Very Severely Affected Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patient Is Heard in Research—A Model, 2022,Baxter

Ensuring the Voice of the Very Severely Affected Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patient Is Heard in Research—A Research Model

25% ME Group

Abstract
Most of the research about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has focused on ambulant patients who are able to attend clinics. It is estimated that 25% of people with ME/CFS are severely, or very severely, affected and are housebound or bedbound; some require tube feeding. Due to the severity of their illness, these patients have largely been excluded from research and are often described as ‘hard to reach.’ A questionnaire was devised to gather data about their experiences of accessing tube feeding. By making the necessary reasonable adjustments, such as direct outreach and the option to complete the questionnaire by telephone or texting, very severely affected patients were enabled to participate and provided invaluable contributions. This study aimed to act as a model for future researchers.

https://www.mdpi.com/2227-9032/10/7/1278

 

Important start to flag this. So worrying (and the fact that noone really knows or notices this issue beyond ME community) that severe ME aren't included in clinics or research. Out of sight out of mind.

The methodology acting as a filter effectively is an issue that needs to be flagged up in all ME research - including where the 'treatment' itself e.g. with BPS GET+CBT stuff just Krypton factors out the most ill and then pretends the change in ave fitness is due to the treatment working rather than whittling the sickest out of the field. There just needs to be the utmost respect for how concurrently participation is a huge demand however little-seeming it might be to someone not that ill, but also these people have had less than no voice (with stigma etc speaking for them) and so marking their existence and being able to tell how it is and what needs to change (as it's impossible to guess without being there) must feel vital.

I'd go so far as to suggest weighting might even be relevant in studies about certain things in services - so that they are built around those who need them most and if it can address their limitations and needs it should be able to address those less ill. EDITED FOR SENSE: It would start giving services and funders perspective if the way that expectations of care 'contracts'/duties (I don't know how it works) were turned on their head to start demanding those severest are properly looked after vs numbers box-ticking through being offered a course or an appointment they can't get to etc.

ADDED IN: I note one bid in the clinics section had lots of 'proof' ( based on pre new guidelines) from using KPIs such as 'patients who came reduced GP appointments during this time' etc. I'm talking about overall as a trust requirement to look after all ME patients KPIs for this need to stop being able to just focus on the cherry-picked/'did something for some people' but also have to account for very/most ill left unattended/addressed and the reports weighting this in such a way it isn't skippable, with more 'points' for the easy-work of signing lots of mild people up to a course who all say everyone was lovely to them.

And really I think in planning services then it needs to work from the needs of the sickest upwards in order to ensure accessibility, usefulness but also to avoid this skewing effect (which will inadvertently snowball as the fewer you see or hear from the more you think the illness doesn't get that bad etc). I really don't get what some seem to be planning to offer - non-clinician-based clinics with unsolicited CBT and someone who doesn't have direct experience putting their own lecture together on pacing but can't provide reasonable adjustments, letters to relevant people like employers, family, care needs etc. is just nonsense. And to be frank ablism-based from a lot that I've seen.

And I think the lack of understanding the behind closed doors impact and only seeing those who are more well on the days where they can hit the bar of attending a course that doesn't offer much just exacerbates the merry-go-round. You only get feedback from those who can complete it and probably focus on those who say they found it helpful - rather than realising you need to fix fixable problems for all the patients - and you probably get cherry-picking of the easy to offer and easy to serve.

No wonder the illness is minimised and misunderstood and not seen as an urgent or serious issue by the health profession within hospitals etc. When someone ends up with something acute or needing an operation for some reason they are unable to believe their eyes and have noone with any experience to call upon.

 

Sad that they were only able to reach 5 patients.

 

Though the survey was on tube feeding which I think is pretty rare: I’m not sure I’ve ever heard anyone with ME in my country accessing it.