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

[Sly Saint]

AGENCY:
Centers for Disease Control and Prevention (CDC), Department of Health and Human Services (HHS).

ACTION:
Notice with comment period.

SUMMARY:
The Centers for Disease Control and Prevention (CDC), as part of its continuing effort to reduce public burden and maximize the utility of government information, invites the general public and other federal agencies the opportunity to comment on a proposed information collection, as required by the Paperwork Reduction Act of 1995. This notice invites comment on a proposed information collection project titled School-Based Active Surveillance (SBAS) of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Among Schoolchildren: Phase-2 of the National Roll-Out. This project will expand on the work from the pilot phase and increase the number of local schools, school districts, states and subsequently school nurses involved in active surveillance of chronic conditions, including ME/CFS, using an electronic data collection platform.
DATES:
CDC must receive written comments on or before September 20, 2022.

Data on chronic conditions among schoolchildren, such as asthma, has been collected over the years, but there has been little to no emphasis on ME/CFS in the United States. Chronic conditions among school-aged children likely account for a high proportion of chronic school absenteeism and school withdrawal. Conducting active surveillance among students using school nurses could expedite the diagnosis and management of children who present with symptoms commonly seen in ME/CFS. This involves educating school nurses about ME/CFS and its related syndromes, how to best approach parents and guardians when suggesting the diagnosis, and how to support the educational success of students with chronic diseases.

National active surveillance in schools for ME/CFS coupled with education of school nurses about ME/CFS could help improve measuring the burden of ME/CFS in children and provide insights for future plans to improve healthcare in children suffering from ME/CFS and other chronic health conditions.

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

 

[Arnie Pye]

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

 

[Andy]

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

 

[rvallee]

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.

 

[Denise]

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

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.

 

[cfsandmore]

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