Survey: what explanations GPs use for conditions that have no agreed biomedical cause and the impact of those explanations on social support & stigma.

I've had my ME misdiagnosed as somatization and delusions. As a result I've been treated terribly by family and my carers, I've been accused of lying about symptoms and not been given the correct consideration which has led to permanent worsening of my condition.

When I tell people that I have ME they think it's a mild psychological fatiguing disorder and have no idea how serious it really is.
 
rvallee said:
Has anyone verified the details? This type of research is usually bad for us, just want to make sure it isn't one of those.
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Had a look at her twitter feed and she retweeted a tweet of Michiel Tack about a David Tuller piece, and there is this


however, the actual survey is :
Explanations of MUS
"
Thank you for your interest in taking this survey on the the explanations given by medical professionals to people with Medically Unexplained Symptoms (MUS). However, if you feel distressed by your symptoms or generally find that mental exertion or concentration triggers your symptoms, then please reconsider participating in this research as we do not want to cause any distress.

This is an academic study conducted as part of an Health Psychology Masters thesis being researched by Catherine Haslam at the University of Bedfordshire under the supervision of Dr Clio Spanou and the study has been approved by the University’s Psychology Research Ethics Committee. Participating in this study is purely voluntary and is in no way connected to, nor has any influence over your treatment.

All information will be confidential. It will be kept on secure drives, aggregated and anonymised using code names or numbers. It will not be accessed by anyone outside of the study."

rest of the study is here
https://bedshealthsciences.eu.qualtrics.com/jfe/form/SV_d0CsBOBia1BdHgO

I started doing it but as it is a long time since I saw a GP about ME symptoms none of it seems particularly relevant. This seems to be more for people without an ME/CFS diagnosis.

I have not found out much about Dr Clio Spanou apart from a couple of behavioural studies eg
Eligibility for interventions, co-occurrence and risk factors for unhealthy behaviours in patients consulting for routine primary care: Results from the Pre-Empt study
https://www.researchgate.net/public..._primary_care_Results_from_the_Pre-Empt_study

he/she isn't registered on researchgate.
 
OK I answered it, about 10 min. It mostly asks about what other people are saying about this, not just what we think but the perception we have of what other people think or what they are explicitly saying, mainly GPs, close friends and family, acquaintances and work. It specifically asks about the various ways psychosomatic illness is framed: mind-body, stress, software vs hardware.

All it can really teach us frankly is that medicine has a bunch of BS explanations that they use, but we already know that. Problem is that most medical professionals see nothing wrong with those explanations, so it's hard to see any problem with this. It's a bit like the project that analyzed the medicine sub-reddit thread talking about Afflicted and how the main themes were mockery and disrespect. The reaction to this was a plain: yeah, so what?

Only big issue is that none of the questions about work consider the option of not working, so the responses there are going to be very confused. I answered the middle option but should have been N/A.
 
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I answered it too, and also found the assumption that those filling in the survey were employed baffling. So I, too, chose the middle option of those questions. There really should have been an 'I am too sick to work' choice. Not sure what the survey will achieve, but kudos to her for taking an interest and for understanding that PACE is rubbish.
 
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