Protomag article: "Energy Crisis" (17 June 2019)

[Ravn]

Those who suffer from chronic fatigue syndrome often face years of doubt from their medical providers. But now the physical hallmarks of the disease are coming into focus.

Story of a patient leading into a general overview of research by Systrom, Oaklander, Elzakker, Montoya and Younger.

Protomag appears to be an online magazine of Massachusetts General Hospital.

Full story here: http://protomag.com/articles/energy-crisis-0

 

[DokaGirl]

Thank you @Ravn for this article.


Maybe I missed David Systrom's study of pwME funded via Solve ME/CFS. I've looked for it, but couldn't locate it. Is the phase 3 trial referred to THE trial in question, or is there another one. I thought the meaning of a "phase" trial is drug treatment/testing.

Do you know if Dr. Systrom's study of pwME funded by the Solve ME/CFS Initiative has been published?

Thank you in advance!

ETA: My understanding was, this study was not a drug trial.

 

[InitialConditions]

this is a good article and should be shared / referenced as needed.

 

[Andy]

Thank you @Ravn for this article.


Maybe I missed David Systrom's study of pwME funded via Solve ME/CFS. I've looked for it, but couldn't locate it. Is the phase 3 trial referred to THE trial in question, or is there another one. I thought the meaning of a "phase" trial is drug treatment/testing.

Do you know if Dr. Systrom's study of pwME funded by the Solve ME/CFS Initiative has been published?

Thank you in advance!

ETA: My understanding was, this study was not a drug trial.

This might provide some answers, https://www.s4me.info/threads/dr-david-m-systrom-at-bwh-has-evidence-of-sfpn-in-some-patients.4855/

 

[DokaGirl]

Thanks @Andy.

 

[rvallee]

This is a good article. Nothing we didn't already know but a good summary of where some current research efforts are heading.

 

[Barry]

In many of those same patients, Systrom has also found abnormalities in a measurement of how well muscles extract oxygen from the blood—an indication that their mitochondria-rich muscle fibers aren’t getting sufficient oxygen. That adds to the problems of preload failure and clearly distinguishes ME/CFS patients from others whose muscles have lost conditioning because of inactivity.

[my bold]

This really should be the sinking of PACE and all who sail in her.

 

[rvallee]

[my bold]

This really should be the sinking of PACE and all who sail in her.

Cats sleep nearly 20h a day. You need to be nearly entirely bedbound and immobile to get to a level that qualifies as genuine deconditioning. Only 25% of ME patients even qualify as housebound or worse. The hypothesis was always flawed based on what we know of the disease. Even PACE literally included the fact that participants were reasonably active, which they did only to justify dropping off actimetry, but nevertheless it's there in plain language. This never stopped them from arguing it and for people who should know better to accept such a dishonest argument as valid, let alone convincing.

There are otherwise perfectly healthy people who are less active than I am, which they do entirely by choice. It's completely ridiculous that such an obviously broken argument can still be argued. The suspension of disbelief is literally killing people.

 

[DokaGirl]

A physician told me that my walking about 30 minutes per day (which I try to do as often as I can) is a lot more than a lot of people do.

If the deconditioning theory held, others who do way less activity than me should have ME, and I shouldn't!