• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

"Telling It Like It Is" (November 12 blog post on ME/CFS events from last few weeks)

Tom Kindlon

Senior Member
Messages
1,734
This November 12 blogpost looks at events in the ME/CFS world in the last few weeks (e.g. David Tuller's articles on the PACE Trial; the launch of the PACE Trial's follow-up study and the media coverage that
followed; the (US) National Institutes of Health's announcement to focus more on ME/CFS research; etc.)

Contains quite a few links.

http://bit.ly/1O60u03
i.e.
<http://spoonseeker.com/2015/11/12/telling-it-like-it-is/>

Extract:
The reason why ME patients react so badly to the researchers who try to impose treatments such as GET and CBT, which are normally associated with mental health conditions, is not because they have a problem with such conditions. It is because they are inappropriate for ME. Because the research which purports to prove their efficacy is riddled with flaws, many of which by themselves would be enough to invalidate the research. Taken together, these flaws should be sufficient to reduce the research to ridicule. Only the high professional standing of the researchers involved serves to stave off such derision and maintain the illusion of ‘excellent science’, just like the fabled Emperor who managed to pass off his nakedness as a fabulous suit of clothes.

The use of GET and CBT for ME is based on the idea that people with ME have nothing physically wrong with them but are simply suffering from an unhelpful illusion of illness which keeps them locked in a cycle of inactivity and deconditioning. All they have to do to get out of this, so the story goes, is to let go of this illusion and slowly increase their level of activity until the deconditioning is overcome. The objection which people with ME have to this is nothing to do with a fear of the stigma of mental health. It’s because it simply isn’t true. There is ample evidence that people with ME do have something physically wrong with their bodies – and the experience of many patients who are persuaded to try GET is that far from overcoming the condition it makes them very much worse, sometimes permanently so. Their objection is not one of ‘irrationality’ but quite the opposite: it is a rational objection to a simplistic unproven hypothesis.
cleardot.gif