USA: CDC: School-Based Active Surveillance (SBAS) of ME/CFS Among Schoolchildren, comments invited until 20th Sept 2022.

https://www.federalregister.gov/doc...mitted-for-public-comment-and-recommendations

 

Using the word "surveillance" suggests there is an underlying belief that sufferers need to be "caught out in their lies".

 

Surveillance of diseases is a standard part of the work that CDC does so, taking it at face value, the fact that they will start doing that with ME is a step forward for us.

https://www.cdc.gov/surveillance/index.html

 

Can this actually be done? Given that we know that most physicians are instructed not to and in fact refuse to record those diagnoses? How can there be surveillance of something from records when that information is deliberately not recorded? Without fixing the fact that they are not recorded on purpose?

Otherwise it will look at healthcare records and find very little, not because it's not there, but because there is an explicit effort to deny its very existence. Because until then it's as accurate as surveillance on sexual orientation in a culture that violently punishes it.

Every country with a minimally functioning administrative state has a very good record of how many sheep, cattle and chickens are being bred at any moment, because it's very important to know if your population is going to run out of food. We can count anything we want if the will is there. Here the will is explicitly to deny, hence why it is.

 

Yes, in theory CDC is supposed to do surveillance. In practice, as we have seen, with ME they have refused to do so. In theory this project would be a good thing but as the school nurse presenter at IACFSME said, the project thus far has failed to identify anyone with ME. [Likely because there were no questions about PEM and probably no training for nurses on PEM and how it might be identified.]
CDC has said that they recently added additional questions, including one that asks about worsening of symptoms after minor exertion (physical, cognitive or emotional). This does nothing to capture frequency, severity or duration of the worsening which (I feel) are key to accurately identifying PEM.

 

For context, the CDC is failing to properly monitor monkeypox.