CFSAC webinar 17 & 18 May 2016

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medfeb

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Nielk said:
Yes. Very thorough. The only red flag for me was the inclusion of exercise therapists?
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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 threshhold
 
Nielk

Nielk

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These centers should be connected to each other and include components of patient care, research and education. They understand that there is a problem with patients being able to travel to the centers so they recoment 'virtual care" as well.
 
Nielk

Nielk

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They are asking for a minimum of 5 years for now. They need this so that they have time to prove their good work so they can then ask for renewal of funds based on their performance.
 
S

Sasha

Fine, thank you
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medfeb said:
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
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Man, I hope this is going up on YouTube. What a fiasco.
 
Nielk

Nielk

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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?)
 
Kati

Kati

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We are facing so many problems. Who will staff these centers of excellence?

Imagine Buchwald running the show in Seattle? A CBT fest.

What services will be provided, what treatments since none are approved?

Will all insurance be accepted? Will there be similar standards of care between the centers?
 
Nielk

Nielk

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Vicky Whittmore said that there s no way that this will be funded in 2017. It will not be approved,
 
Nielk

Nielk

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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!
 
Kati

Kati

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Nielk said:
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!
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Right. All about saving lives. And cancer is a much more worthy disease because you know people lose their lives.

I really wish they stopped this argument. People with a life sentence matter too.
 
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BurnA

BurnA

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Kati said:
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.
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We need a new slogan " what's worse than cancer ? ME is "

The thing is, some people get really weird when you suggest that there could possibly be anything worse than cancer.
Its not uncommon for people to say things like "at least it's not cancer" when talking about ME as if somehow that's a plus.
 
BurnA

BurnA

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Kati said:
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.
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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.
 
Sing

Sing

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Nielk said:
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?)
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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.
 
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