I have had severe me/cfs since age 27, now im 40. The media coverage seemed positive to me. This was the first i heard about the issues in community and is understandable. This interview was awesome. Thanks David and Michael. P.s. how the hell is it possible that 4 patients were misdiagnosed.. how is this happening at the clinical level to patients!? Doctors arent doing their jobs??
What about diagnosis by constellation: muscle failure on minimal exertion, cognitive failure on effort, pituitary failure, symptoms of immune activation. All symptoms of failure of oxygen to get to tissues . The red blood cells are not getting through the microcirculation.
Even if it was clear what the specific part of the brain did and If there is a malfunction in part of the brain relating to ‘effort’ why did they not consider that it may be the bodies way of limiting activity to prevent further harm? Likewise why dyes nobody check whether the mito abnormalities maybe any attempt by the body to reduce mito energy that viruses use for replication?
The original design of the research reeked of intentionally prolonged study. Also one of the lead researchers was a firm proponent of the BPS model. It already seemed like an effort to pretend to answer patients demand for proper medical research but in a study designed to take as long as possible and to prove very little. The slightly doubtful tone of your discussion leads me to believe that you both sensed something dubious about it without being able to pin it dow. I followed this process very closely at the time, even emailing my concerns to Avindra, receiving a courteous reply, offering the kind of pat-on-the- head reassurance that tells you to get back in your box. I’m not surprised by your responses - whatever you’re thinking but not saying will be right.
I have had severe me/cfs since age 27, now im 40. The media coverage seemed positive to me. This was the first i heard about the issues in community and is understandable. This interview was awesome. Thanks David and Michael.
P.s. how the hell is it possible that 4 patients were misdiagnosed.. how is this happening at the clinical level to patients!? Doctors arent doing their jobs??
Adore all the interviews. And current and ongoing event/topics. Such a public service 😅 thanks David
Thanks, David and Michael.
All hanging in there! Love and solidarity to us all with #MyalgicEncephalomyelitis
It is slightly easier to deal with having M.E/cfs while Michael VanElzakker is chipping away at research for this awful illness. Such a research hero!
What about diagnosis by constellation: muscle failure on minimal exertion, cognitive failure on effort, pituitary failure, symptoms of immune activation. All symptoms of failure of oxygen to get to tissues . The red blood cells are not getting through the microcirculation.
‘Effort. preference’. Betrays intention.
Excellent info about 'interpretation' of the data -- curious to know what Michael thinks about AI as a tool to discern phenotypes?
Thank you for the interview!
Even if it was clear what the specific part of the brain did and If there is a malfunction in part of the brain relating to ‘effort’ why did they not consider that it may be the bodies way of limiting activity to prevent further harm?
Likewise why dyes nobody check whether the mito abnormalities maybe any attempt by the body to reduce mito energy that viruses use for replication?
The original design of the research reeked of intentionally prolonged study. Also one of the lead researchers was a firm proponent of the BPS model. It already seemed like an effort to pretend to answer patients demand for proper medical research but in a study designed to take as long as possible and to prove very little. The slightly doubtful tone of your discussion leads me to believe that you both sensed something dubious about it without being able to pin it dow. I followed this process very closely at the time, even emailing my concerns to Avindra, receiving a courteous reply, offering the kind of pat-on-the- head reassurance that tells you to get back in your box. I’m not surprised by your responses - whatever you’re thinking but not saying will be right.