Survey: Doctors' Knowledge and Understanding of Myalgic Encephalomyelitis, UK, 2018, Hng

Andy

Retired committee member
Originally intended to be published in a journal, Dr Hng has decided instead to release this into the public domain.
Introduction

It has long been the experience of patients with Myalgic Encephalomyelitis (ME) that their doctors have little knowledge and understanding of the condition, and are largely unable to help. Worse, many report that their doctors do not appear to believe their illness is real, resulting in tragic lack of support.1,2,3 Examination of sample medical curriculums in the United Kingdom in 2018 confirmed that as far as could be determined, Myalgic Encephalomyelitis was not in the syllabus at either undergraduate or postgraduate levels. It is therefore quite conceivable that patients’ widely reported impression is indeed true.

Methods

In this exercise we attempt to quantify doctors’ knowledge and understanding of Myalgic Encephalomyelitis. A questionnaire was developed with input from experts in the field (Appendix 1). At a unique regional training event, where physicians at ST3-8 level were scheduled to receive a short introductory lecture on Myalgic Encephalomyelitis, the questionnaires were handed out and returned on the same day.

In order to capture baseline data, respondents were asked to base their answers on their knowledge before hearing the lecture. The results are analysed below. Apart from the last question, about further education on ME, questions left unanswered are counted as “Don’t know”.
Code:
https://drive.google.com/file/d/1R6MgsNuEjdj1fsfJds5bJ2MAACSogOXn/view


Post on her Facebook page
Code:
https://www.facebook.com/DrHng/posts/922049561548938
 
Pretty much as expected. We've seen the internal NHS training module and the documentation they use, they are the same awful as this. Actually besides the "treatments" some of it is a bit better than expected given how catastrophically bad and misleading the training material is.

Is training medical personnel wrong on purpose about a serious disease a problem? I think it is. But maybe I'm just weird like that. Should it cause problems, ethical and legal? You bet your ass it should. It's criminal. But it's supported by authorities and, especially, medical institutions making it technically "legal" and proper. Bit of a pickle, here.

So what happens when discrimination and disinformation come straight from official sources? Disaster. Predictable disaster. Predicted, even. It's all on record, too. There's even a judicial review that raised all those concerns, based on clear evidence, and was dismissed with high prejudice. One of many such clear well-documented objections.

But none of this is surprising because this is the disaster people like Wessely, Gerada and the rest built. On purpose. For reasons that need serious examination and a thorough reform of the entire thing. Because how much medical training out there has the same features? How much of it is literal disinformation based on ideology? Maybe no more of it. Maybe half of it. Can't know without looking. But, again, this is criminal. It needs to be examined in that light. Now!
 
No patient should be surprised of how insanely bad knowledge is, but good to see it presented like this, even if not in a journal, even if only 44 questionnaires were analyzed.

There are no surprises here. 98% of participants would go for GET..
The only positive here, if one looks at it in a very positive way, must be that out of 36, 20 (56%) was positive to further more in-depth teaching on ME. The right answer here would be a 100% wanting in-depth lectures, but guess we’ll have to be satisfied with 56%?

Overall I agree. It is simply criminal that authorities accept that people supposed to have knowledge of a disease, de facto hardly knows anything at all. And they still wonder why “vexatious” patients ask for simply getting the very basics right?
 
I have messaged Nina about this. I think she is in contact with Dr. Hng.
It would be really great if the medical professionals with ME worked more together. Even if it doesn't produce much, at least over time it could build something useful.

I guess it's the rampant discrimination that discourages them? But that's not going away anytime soon and neither is their ME so... how do we get that to happen? Probably our biggest missed opportunity so far. Medicine doesn't care what patients think. They care what their colleagues think. They want a specific language and framing that only other MDs can deliver. The complete disconnect between what is taught and believed and reality is itself extremely significant.

I certainly get the personal reasons for that but it's self-defeating, for them and for all of us. It really doesn't have to be much, burden-sharing can deliver what one can't on their own. I have no idea how to do that but the fact that we can't even do something this simple says a lot in itself.
 
It would be really great if the medical professionals with ME worked more together. Even if it doesn't produce much, at least over time it could build something useful.

I guess it's the rampant discrimination that discourages them? But that's not going away anytime soon and neither is their ME so... how do we get that to happen? Probably our biggest missed opportunity so far. Medicine doesn't care what patients think. They care what their colleagues think. They want a specific language and framing that only other MDs can deliver. The complete disconnect between what is taught and believed and reality is itself extremely significant.

I certainly get the personal reasons for that but it's self-defeating, for them and for all of us. It really doesn't have to be much, burden-sharing can deliver what one can't on their own. I have no idea how to do that but the fact that we can't even do something this simple says a lot in itself.

I agree. I think Nina and Dr Hng have or are working on something together. Nina does a lot of work on ME education - a lot of it behind the scenes.
 
Response to one particular question raises some concern. Asked whether, “Children with ME miss school because their parents support their sick role and this should be discouraged”, the majority answered correctly (false), but 30% thought this was true. Given the high incidence of unjustified Child Protection and Safeguarding proceedings instigated against families of children with ME, often with disastrous consequences to the health of these children, this misconception is of grave concern.3
 
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