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

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

Code:

https://drive.google.com/file/d/1R6MgsNuEjdj1fsfJds5bJ2MAACSogOXn/view

Post on her Facebook page

Code:

https://www.facebook.com/DrHng/posts/922049561548938

 

This would be better if it goes through peer review. It's not much use to the scientific community unless it goes through the proper channels.

 

I believe that was the intention but I understand her current level of functioning prevents her from doing so. Perhaps if someone was able to do all the work for her it would be possible, but I'm only guessing.

 

Ah. That makes sense. Maybe someone could support her in this?

 

It would be best to find out what the barriers to publication were. It could be expense, or something like that. Is she on the forum?

 

Not as far as I know.

 

Maybe Nina Muirhead would be interested? any way to let her know?

 

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.

 

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.

 

That's good. If Nina mentions this in her own work, it might not matter that this wasn't peer reviewed in this instance. It may later on, via Nina's work.

 

https://twitter.com/user/status/1257717988574322693

 

There are a lot of journals, perhaps the majority, where there is no fee, but then they are generally behind a paywall.

 

https://twitter.com/user/status/1258817910023299072

 

https://twitter.com/user/status/1259212140222832646