David Tuller: Trial By Error: So What's Happening with the MAGENTA Trial?

That's an issue I haven't seen much discussed yet even though it's a critical failure in all the psychosocial research. Every trial that uses a single measurement in time is misleading because of the wildly fluctuating nature of this disease. It would be as accurate as a simple measurement of blood sugar level and slapping a nice "RECOVERED" stamp on diabetics who have a single good reading. Or for a more similar disease, taking a relatively symptom-free period for MS patients and declaring them cured because they are not having a relapse at this moment.

I have had 3 remissions. Each time lower than the last, but I was able to work and have a relatively normal life, albeit a much less active one. I had months where I could barely walk across a room most days. Even presently I have days when I can do a little housework like vacuuming and going for a quick grocery run, while others I can't even cook myself food. The psychosocial research doesn't even attempt to address this. Single point data in this disease are completely misleading yet because of the questionnaire nature of psychosocial research, that's all they have.

What's more annoying is that variability is a known feature of ME, but that's precisely why psychosocial research restricts itself entirely to chronic fatigue, which does not have this feature and they can just brush those concerns aside but simply saying "this applies to ME because we say so". It's a severe ethical and professional failure of authorities to allow this.

 

Neuroscience innit?

 

Overstepping in many cases.

Much like my wife, though she never walks very fast. But then after a while the meager energy reserve runs out, and like you, she slows right down mentally and physically.

Spot on.