Ember
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ME/CFS Alert Episode 74: Dr. Mady Hornig (Part 2)
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alex3619
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As I understand it the point is to follow patients in the early phase and see what happens, how it changes. This may show the transition mechanisms, or at least features of a change to the longer term condition.
The same cytokines that were elevated in short duration patients were dampened in long duration patients, so if the findings of the initial study are validated and a panel test is developed, it could still be used for long duration patients to confirm diagnosis, which would probably help with insurance claims etc.
Of course a test might allow faster and more confidant diagnosis in very short duration patients, which would certainly be a great benefit.
aimossy
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Excellent interview!
I suspect the priority will be given to early stages, i.e. those within the first three years.
I think those who have been sicker, longer, will have a tougher path in attracting research - a process which will include overcoming opposition.
I'm not quite sure they even demonstrated that post-three years translated into immune system exhaustion or collapse or even just misfiring. I think they insinuated that, but in terms of hard data that could be reproduced, I'm not so sure.
I hope I am wrong, but I gotta believe any action, at least "early" action, will be limited to the early stage population.
That's still a better proposition than exists today, and perhaps a better chance for those who follow.
I think those who have been sicker, longer, will have a tougher path in attracting research - a process which will include overcoming opposition.
I'm not quite sure they even demonstrated that post-three years translated into immune system exhaustion or collapse or even just misfiring. I think they insinuated that, but in terms of hard data that could be reproduced, I'm not so sure.
I hope I am wrong, but I gotta believe any action, at least "early" action, will be limited to the early stage population.
That's still a better proposition than exists today, and perhaps a better chance for those who follow.
Sushi
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She talked about the possibility of a progressive decrease in the levels of these cytokines the longer a patient is sick. I was recently tested for about 5 of these cytokines and mine were not just mildly depressed, but extremely depressed--for what it is worth!
Sushi
Sushi
It's worth a lot.
But even if their findings post-three years were actionable, and I fear they were not, I think there may be resistance to acknowledging late stage patients. Individuals stricken with ME longer, present with more expensive conditions: more expensive to treat, more expensive to move over to disability,etc. Or at least it might appear that way to interests like insurance lobbies. Also, there is arguably a better chance at success for researchers in the earlier state. Why research a low-yield, or certainly what may prove to be no-win scenario?
Patients with earlier progression of the disease can be championed at a discounted rate, with a greater chance of a good return on investment.
But even if their findings post-three years were actionable, and I fear they were not, I think there may be resistance to acknowledging late stage patients. Individuals stricken with ME longer, present with more expensive conditions: more expensive to treat, more expensive to move over to disability,etc. Or at least it might appear that way to interests like insurance lobbies. Also, there is arguably a better chance at success for researchers in the earlier state. Why research a low-yield, or certainly what may prove to be no-win scenario?
Patients with earlier progression of the disease can be championed at a discounted rate, with a greater chance of a good return on investment.