"Why does stigma still surround ME?" (May 13, 2014)

[Dolphin]

Start: "Why does stigma still surround ME? Because doctors believe it's all about deconditioning"

Extract:
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Almost nobody, except a tabloid headline-writer, says ME is “all in the mind” these days. So why is there still such a stigma attached to ME/Chronic Fatigue Syndrome?

In my experience, the stigma gets worse the more severely affected with ME you are. Now that my illness presents in a moderate form, the treatment I get from the medical profession is mostly benign neglect. When I was very severely affected it was a different story: I experienced outright hostility, open disbelief, accusations of hysteria, attention seeking, malingering and manipulation. I was very, very ill and yet my poor parents were shunned by doctors and left to care for me alone.

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It ends:
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To end the stigma of ME and the shocking neglect and even abuse towards severe ME we have to knock the deconditioning theory on the head once and for all. We need to change the received wisdom on ME within the medical profession. It won't be easy but it looks like at last we science on our side.

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http://limitedcapability.blogspot.com/2014/05/why-does-stigma-still-surround-me.html

 

[alex3619]

Deconditioning is not, I think, the main thing. I think we will face issues even without deconditioning. In any case the deconditioning model has been disproved, but too many do not read the science. Psychogenic proponents have this bad habit of just moving to a new unproved theory when the old one is disproved.

 

[Dolphin]

I think believing deconditioning, and the related idea that patients' disability can be overcome by them just doing more, is a big problem with doctors not taking the condition seriously and not being fully supportive of patients.

Anyway, I'd encourage people to read the blog and read what the writer has to say.

 

[Sparrow]

I read an article recently about a study on misinformation. It seems that the more times people hear a theory, the more they believe it to be true (or at least, possibly true). It seems more and more credible to them every time they hear about it.

The catch is that hearing about something will make people believe it's credible even what they're hearing is an argument against it.

For example, telling someone that it's a myth that you can't grow real tulips in North America is more likely to make them believe that you can't grow real tulips in North America. ...Despite the fact that they whole point of that statement was to try to say that's a myth (which it is...since I just made it up).

At any rate, I found the research around these things fascinating, and very relevant to our cause.

According to the current research, the less we say about any mental/deconditioning theories, the better. According to the research, the best way to help people believe that these theories aren't credible is to never mention them at all, and to instead just talk a lot about the biological nature of the illness (which I don't mean as a critique at all of the article writer, or anyone discussing it here - just wanted to mention in case it's helpful information in deciding how we interact with the outside world).

...Now if only we could get certain British doctors to keep their mouth shut about them as well...