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I asked CDC why the agency won't remove the CFS Toolkit from CDC's website. For one thing, CDC insists the Toolkit is accurate.
Mindy Kitei
CFS Central
www.cfscentral.com
Mindy Kitei
CFS Central
www.cfscentral.com
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Thanks for the link Mindy. I see teh CDC response was the usual offical-cum-borg hive response that always seems to happen.
I suppose they have the view that is so prevelent in politics that if you are going to lie, you may as well lie boldly.
The fact that they are lying so boldly means they feel safe to do so.
I asked CDC why the agency won't remove the CFS Toolkit from CDC's website. For one thing, CDC insists the Toolkit is accurate.
Mindy Kitei
CFS Central
www.cfscentral.com
I wonder who the "clinicians" are that they consulted with who agree that this toolkit is accurate?
A little brainstorming --- how to find a solution to the problem:
maybe we should go above their heads, since they won't budge...a barrage of letters/emails
The information in the Toolkit is not inaccurate
content decisions are reached through a collective understanding among various CDC professionals
Exactly, Nielk.
I want to see a list of clinicians that the CDC consulted about the toolkit.
They would say they disagree, and that their information is correct.What would be great is if we could get a statement signed by many ME/CFS clinicians to the CDC showing how and why their toolkit is so flawed.
What could they say then?
They would say they disagree, and that their information is correct.
They say "it's accurate," but this is a total crock. For one thing, they have clearly stated that the Emperical definition is a research definition, and not meant for clinical use. If it's not meant for clinical use, why do they put it into their clinical tool kit. Why are they not telling clinicians that they are giving them an unsuitable definition. The answer is they have no integrity. And how do they back up their claim about GET. They do not cite any studies that use their definition of CFS. What they do is cite Oxford criteria studies, which have definitions that disagree with the CDC definition, the Canadian definition, and the International definition. .
I think an open letter from our ME/CFS clinicians to the CDC would be great. Who would have the contacts to organise this?What would be great is if we could get a statement signed by many ME/CFS clinicians to the CDC showing how and why their toolkit is so flawed.
What could they say then?