"NINDS Director Expresses Shock (and Awe) at Community Response to Clinical Center Study Protocol"

[dancingstarheart]

Are you talking about defining a new set of ME criteria ?




The community response. I don't think anyone has said that this is a great study lets get on with it. Everyone has expressed some reservation or another. The point is, not everyone wants to cancel the study and reinvent ME criteria while we are at it. A lot of people believe this can be turned into something good and that a corner may even be turned already.
The point is, the response may have done its job, there is no need to prolong or extend the response for the sake of it. It's time to see how the NIH reacts and then lets see the next, or official, study protocol before we can say anything else.

MEadvocacy was not talking about defining a new set of ME criteria. My thoughts, there are three types of criteria that ME patients have supported, the CCC and the ICC and Ramsay's, though some have a preference. Why not a biomedical study evaluating for all 3 criteria and compare and contrast data for the subsets?

 

[BurnA]

MEadvocacy was not talking about defining a new set of ME criteria. My thoughts, there are three types of criteria that ME patients have supported, the CCC and the ICC and Ramsay's, though some have a preference. Why not a biomedical study evaluating for all 3 criteria and compare and contrast data for the subsets?

It read like it was :
"This study will be of ME patients diagnosed with our expert created ME criteria."

The purpose of the NIH study is not to see which definition of ME/CFS is the best. Definitions of ME/CFS are what has gotten us into this mess. The purpose of this and indeed most studies into ME/CFS is to find a biomarker which will mean we never have to use a definition again. Subsets should naturally come out of the proper biomedical studies one way or another, we dont need to muddy the water further by introducing patients based on different diagnostic definitions. I believe the latest indication was that patients would fulfill all definitions, so this should eliminate fear over wrongly diagnosed patients.

 

[Justin30]

They are using CCC criteria to define the cohort. That is good at least.

Dr Lapp is involved this is good too.

I just wish they brought in the likes of Dr Klimas, Peterson, Chenney, KDM, Levine, Erlander, etc.

 

[duncan]

Evidently they weren't too shocked or awed, as they are still using Lyme and FMD patients according to the Simmaron thread.

If they took us seriously, they would drop both.

 

[ScottTriGuy]

Evidently they weren't too shocked or awed, as they are still using Lyme and FMD patients according to the Simmaron thread.

If they took us seriously, they would drop both.

Including Lyme and so-called FMD as controls reflects very poorly on their competencies as researchers.

Sigh.

 

[Justin30]

Is this some sort of joke:

this HTML class. Value is http://www.ncbi.nlm.

Why are they not choosing a healthy cohort??????