Survey on stigma around ME

[rvallee]

I wasn't sure where to post this but social and professional stigma around this disease seems kind of relevant to what psychosocial medicine claims to be about.

It's a quick survey for a university project. So unlikely to be published research but it's quick to do.

 

[Inara]

Do you know some background about this guy?

 

[Invisible Woman]

I had a quick look. It is a short survey - just 7 questions. However, some of the questions could take considerable thought and quite a long answer - such as how do you describe it and why do you believe there is stigma.

 

[JaimeS]

One of my interns is doing similar work. Instructed her today to create a webpage about her survey. I hope she will publish. I'll keep you guys informed.

 

[rvallee]

Do you know some background about this guy?

Nope. Just a random find from a retweet. But it's short enough I figured it could be of some use. There is a messaging part to this and awareness is about regular messaging and exposure to the facts. Maybe it could drive someone to look into it and dig further.

 

[Invisible Woman]

Nope. Just a random find from a retweet. But it's short enough I figured it could be of some use. There is a messaging part to this and awareness is about regular messaging and exposure to the facts. Maybe it could drive someone to look into it and dig further.

There is indeed and we have been bitten on the behind by things like this before. I believe Rhi is female and uses the phrase "having had ME" herself. I don't know what this means. Did they have it and recover - happy for them if so. Did they recover using the lightening process? Something else?

The questions are very open ended and leave the answers wide open to interpretation. It may be that your answers could be used to argue that stigma is stopping you from seeking Treatment A, whatever that might be. If only there was less stigma, a way of reducing the impact of stigma (CBT ?), then more people would recover and get back to normal.

This is all speculation on my part as I know nothing of this young woman and her intentions. However, it is speculation based on past experience. I won't be filling it in as I don't know enough background about it and the questions are too open.

Perhaps a fellow twitterer could let her know we are discussing her survey here and invite her to join in, answer questions and ask her own questions if she likes.

Nothing at all against her, but I still won't fill in a questionnaire like that.

 

[MEMarge]

Just had a quick look at her twitterfeed and she has had over 200 responses, so far.

 

[JaimeS]

There is indeed and we have been bitten on the behind by things like this before. I believe Rhi is female and uses the phrase "having had ME" herself. I don't know what this means. Did they have it and recover - happy for them if so. Did they recover using the lightening process? Something else?

I admit I looked at who she'd published with first.

 

[Inara]

believe Rhi is female and uses the phrase "having had ME" herself. I don't know what this means. Did they have it and recover - happy for them if so. Did they recover using the lightening process? Something else?

That was exactly the background of my question. I would like to know what the project is about.

 

[Inara]

I admit I looked at who she'd published with first.

And with whom?

 

[Esther12]

It didn't look like this was instended as 'medical research'. Her twitter page said she was doing some sort of design work. I just googled her name and saw she'd done a sponsored run for MEA: https://www.justgiving.com/fundraising/rhiannonpayne

Looks like she was a teenager who fell ill and went on to recover. Good of her to go on to try to raise money for MEA, and keep an interest in things. I suspect going through 200 response will be rather more work than she'd intended for her design project.

 

[JaimeS]

Should have said "worked with".

MEAssociation fundraiser: https://www.justgiving.com/fundraising/rhiannonpayne
Seems to be associated with ME Northeast FB
A convo on the optics of physical challenges to raise money for ME: https://forums.phoenixrising.me/ind...ept-donations-from-physical-challenges.34456/

So it seems she's been working with the ME community to fundraise for at least three or four years. I thought, "seems legit" and replied to the survey.

 

[Alvin]

So it seems she's been working with the ME community to fundraise for at least three or four years. I thought, "seems legit" and replied to the survey.

I filled it out too, i gave simple answers that get to the crux of the situation objectively. If its a malicious intent my answers won't help a PACEr but if its for good then my answers get to the heart of the matter.

 

[JaimeS]

I filled it out too, i gave simple answers that get to the crux of the situation objectively. If its a malicious intent my answers won't help a PACEr but if its for good then my answers get to the heart of the matter.

200+ people seem to agree.