What accomodations would PwME need for us to be able to be involved in research?

Andy

Andy

Retired committee member
Title pretty much says it all, or perhaps another way of asking the question is "What would be the ideal way that researchers could accommodate pwME in their research (in an advisory role or otherwise)"?

Thread is partly inspired by this tweet


ETA: Ironically, Joan is asking for suggestions for info/stats that could be useful in encouraging an interest in research into ME. However, I'll leave this thread up as I'm interested in suggestions on the original topic.
 
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What Joan is referring to.

Involving the Public in the Design and Conduct of Research: Building Research Partnerships
Free workshop on Wednesday 10 April, 2019. Open to patients, carers and the public interested in becoming involved in research and to researchers who are interested in involving patients, carers and the public in their research

This free workshop will look at practical ways to involve patients and the public as partners (PPI) in the research process.
It will explore the issues related to becoming and being a member of the public involved in research and the role of researchers in facilitating this involvement.
This workshop will take place on Wednesday 10 April 2019, Canada Room, Lanyon Building, Queen’s University Belfast.
http://engage.hscni.net/opportuniti...t-of-research-building-research-partnerships/
 
This is not as straightforward to answer as you might think as there are so many things (and people) that prevent pwME having any kind of say in what research is done and how, in the UK.
It largely would depend on who is doing the 'research'.
 
For starters, IMO they'd be better off engaging with people online rather than doing a day long event where you need to attend.

There should be some initial ideas put forth that are to be discussed and then a new set of ideas and questions that arise from discussion. Let this go through a few stages of development.

They should try to ensure that they are inclusive of people who are severe (even if they cannot participate in actual research) and that those who do participate read a preliminary blurb that helps them understand what is being looked for and what is being defined as ME.
 
The usual answers for people who can physically get there include quiet rooms to lie down in, nearby rest rooms, an eating area, and so on.

I would also suggest a wheelchair service (please be sure the wheelchairs are regular wheelchairs with brakes the user can reach, and not transport chairs, which are very unmanageable--I personally can't think of a decent reason to manufacture transport chairs, although there could be one) with volunteer pushers trained in pushing (borrowed from a hospital pushing service, perhaps). For people who don't yet have their own device but can't manage large buildings.

The sound service needs to be very clear and not have any feedback or distortions.

It should be webcast live with live captioning (they do live captioning on TV, so this is definitely a thing that can be done), with a feedback mechanism for remote viewers/listeners/readers.

They need to talk to a cross-disability group to know how to accommodate others.
 
Asking the patient what time of day would be best for meetings. I personally struggle to get my brain working for the first couple of hours after getting up, while late afternoon sees is the noticeable time when it starts to slow down again, so the four hours either side of midday is generally best, though this may well be different for other patients.
 
Expenses for overnight stays close to the venue (if a physical venue) before and after.

(Semi-serious - All participants to lie/recline/sit on loungers, beds or reclining chairs regardless of (dis)ability or status during the meeting.)
 
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