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Registered: 11-2017
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Activist Pressure Looks To Be Crushing Viable "Chronic Fatigue" Treatment Research


Many may not have heard of this problem. It was widely publicized decades ago. Then, some dismissed it as the lazyness a new, softer, spoiled generation. The term "yuppie flu" was sometimes used.

Its an actual disorder. And one treatment has proved to help some of the victims. Not all, and maybe not even most. But some, for sure.

A peer reviewd study showed this. A clinic using this treatment had many gratefull patients. So whats the problem?

A guy who had been a very successful AIDS activist - who was not in any way a researcher in this field - decided that this treatment was wrong.

Wrong because it did not focus purely on finding the physical cause in the body for the problem.

On that basis, he took the energy, drive and networking skills and any media savvy that was part of making his AIDS activism a big success - and started a now very strong, angry, bothe in-person and heavy on-line campaign taht demomizes anyone involved in the "bad treatment."

Including even patients who have benefitted from it!

" Colin Barton, chairman of the Sussex and Kent CFS/ME Society – a patient group in southern England – said talking therapies and graded exercise helped him recover to the point that he can lead an almost normal life.

He told Reuters that in his experience, patients who talk about having been helped by psychological or graded exercise therapies come in for abuse just like the researchers. They face accusations that they were never ill in the first place; that their condition was misdiagnosed; and that their recovery is therefore fake, he said. As a result, he said, many recovering or recovered CFS/ME patients feel forced to withdraw from the debate."

Thats the very last paragraph in this article, which is titled:

"Online activists are silencing us, scientists say"

http://news.trust.org/item/20190418094429-rl1l2

~~~~~~~~~~~~~

Thats in the UK - and the Reuters article makes it look like a door is closing on research into anything involving that treatment there. It shows a major research magazine caving to pressure among other signs.

Happily, I found the it still offered on an NHS info site. So while the pressure is killing off research, it hasn't yet killed approval of the treatment.

The article shows that this activism pressure having an effect over here in the US, too. It shouldn't be all surprising - activist led changes are not a new thing over here.

I just hate to see this roll on. It's clear that if it does, some patients are going to be denied very strongly needed help.

The sign of it being over here is that - from the article - even our CDC has removed data about that "bad" treatment from its "Chronic fatigue" section.

The article shows them being evasively dishonest. I know, because I used CDC data to work with Doctors to decide on treatment many times in my Naval medical technician career.

In the article, the CDC spokesperson uses the excuse that "they didnt want to confuse the public with complex terminology."

That's pure BS! The CDC offers guidance to all public health officials and many other doctors about what treatments are out there.

Not, as a priority, "dumbing stuff down" for "John Q Public."

Last edited by greendocnowciv, 4/18/2019, 9:09 am
4/18/2019, 9:07 am Link to this post PM greendocnowciv Blog
 


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