Nielk
Senior Member
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They said only 11-12% of patients get specialized care right now - so the need is great!
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Depending on how they define specialized care that number seems way too high to be real.They said only 11-12% of patients get specialized care right now - so the need is great!
Understand - especially with their current level of understanding. But I've heard that they are better prepared to understand the energy impairment than many regular doctors because of their background. At the very least, they will know what not to be providing if a patient is sent to them. But could they help with more for that - thinking of the kind of activity management that patients do while keeping their heart rate under their anaerobic threshholdYes. Very thorough. The only red flag for me was the inclusion of exercise therapists?
The COEs to have both multidisciplinary research and also a clinical care component, an education and outreach role, etc. They showed a great study showing the percent of patients who are able to reach an expert - 0% in the center of the country and very very low elsewhere.
Very good presentation
Exactly.What services will be provided, what treatments since none are approved?
Right. All about saving lives. And cancer is a much more worthy disease because you know people lose their lives.Donna challenged this asking why there is funding for Ebola but not ME/CFS. Vicky said that because Ebola and Zikka have urgency because people are dying from Ebola and children are affected by Zika.
No such urgency for ME/CFS!
Right. All about saving lives. And cancer is a much more worthy disease because you know people loose their lives.
I really wish they stopped this argument. People with a life sentence matter too.
Has there ever been a quality of life study comparing cancer patients to ME patients ?Right. All about saving lives. And cancer is a much more worthy disease because you know people loose their lives.
I really wish they stopped this argument. People with a life sentence matter too.
They will have to go after other sources of funding for the clinical care piece. Dr. Montoya spoke knowledgeably about the funding for these centers and how it might work.There might be a glitch with the funding since NIH does not fund patient care. I'm not sure how they plan to reconcile that problem.
They are not sure if one million per center per year will be enough so, they are putting in a "minimum" of... (will NIH ever say okay we will give you more?)
Yes. See Cort's blog for details:Has there ever been a quality of life study comparing cancer patients to ME patients ?
Would be interesting, especially if it included all the recovered cancer patients.