Open Master’s Thesis: seeking perceptions about chronic fatigue syndrome in the workplace from working people who both have and do not have ME/CFS

It's probably just a typo, but an unfortunate one.

Her supervisor Nicola Swain has an uncertain reputation when it comes to ME/CFS. She was briefly President of ANZMES (one of New Zealand's ME/CFS charities) during a period when Dr Ros Vallings, the ANZMES medical advisor, was saying a lot of dubious things. Nicola invited me to be elected onto the ANZMES committee in an Annual General Meeting, and then did nothing to protect me when I was immediately unfairly attacked and expelled from the committee for having politely asked questions about what Dr Vallings was saying during that meeting. Nicola did not stay long as President of ANZMES.

She did do an interesting study about carers of people with chronic diseases but she does seem to have a biopsychosocial outlook. Possibly her 'biopsychosocial outlook' is a reasonable one, rather than psychosomaticism.

A recent publication is
"Understanding the biopsychosocial knee osteoarthritis pain experience: An ecological momentary assessment"

https://www.researchgate.net/profile/Nicola-Swain-3
Associate Professor, Department of Psychological Medicine (Dunedin)

https://www.otago.ac.nz/bms/expertise/profile?id=807

Sarah Jansen may well mean well. From the brief blurb above, I suspect that she does. I think Nicola does too. But, I'm not sure that that is enough to ensure that this study is safe and useful. I'm not suggesting people not participate in the study.

It would be good if we could get Sarah or Nicola to join us here to understand better.

Sorry, edited a bit.

 

You can have a look through the questions for both options (having ME/CFS, and not having ME/CFS) without having to enter any data.

I don't think this sort of online survey is going to produce useful data. There is a problem with selection bias for the participants with ME/CFS, but that problem is even bigger for the participants without ME/CFS.

Those participants are asked if they have heard about ME/CFS, what symptoms they think a person with ME/CFS has, whether a person with ME/CFS should be in their workplace, how they feel about accommodations. But, the sort of person without ME/CFS who comes across this study, from our forum, from platforms used by the peoplealerted on twitter (e.g. Janet Dafoe), is, on average, completely unlike most people in the workforce when it comes to knowledge about ME/CFS and attitudes towards it. At best, there might be a few interesting quotes to share.

So, what will Sarah conclude from her study? What will she learn about research from doing this study? How could the study be done to actually produce some useful data? It probably means using a radically different approach to getting participants. Of course, the chances of a rethink happening is very low.

It's such a shame when motivated smart young people interested in doing something on ME/CFS put a lot of effort into something that doesn't actually produce solid information.

Sorry, edited a bit

 

Looking at the questions for the participants who don't have ME/CFS, Sarah does ask
7. Have you heard of the condition ME/CFS?
8. Do you know anyone who has ME/CFS?
9. If yes, what is their relationship to yourself?

So, she will be able to stratify answers by whether the participant knows someone with ME/CFS, and compare the answers of respondents who do and do not know someone with ME/CFS. Hopefully, she will get enough responses from people who have heard of ME/CFS but don't know anyone with ME/CFS to draw some conclusions about that group.

I still think there is likely to be a problem with selection bias though. The average views of people who know someone with ME/CFS and saw the invitation to participate on the platforms that it will be shared on and are motivated to reply are likely to be different to the average views of people in general who know someone with ME/CFS. With online volunteers, we have no way of knowing what proportion of a population those volunteers represent.

I would have been much more interested to know about the attitudes of GPs to people with ME/CFS in a specific part of the world, for example. Or, if she had surveyed people in a few big workplaces, such as banks, schools or hospitals about ME/CFS and employment, that would have been interesting. That approach would have allowed there to be a denominator so a response rate could have been reported.