Another CFSAC Violation- Jennie Spotila


Patient in training
One thing we could use is a summary list of provable violations. Then we repost it again and again over the years - yes, I think we will still be fighting in years to come.
I 'like' the need to make such a list, to use in our advocacy efforts.
i hope you are wrong on your second sentence.
The real problem with government is lack of transparency and accountability ... all government, everywhere, regardless of size and political slant. If we had more transparency and accountability from government agencies purporting to operate on our behalf then things would be much much better. Government needs to serve the people, or else we only live in a sham democracy.

I just posted something like the following on, but I also had this thread (and Jennie's work of course) in mind and so wanted to share here too:

"Negative effects of bureaucracy... Bureaucracies concentrate large amounts of power in a small number of people and are generally unregulated... [T]hose who control these organizations control the quality of our lives... Bureaucracies tend to generate oligarchy..."

"Bureaucratic hierarchies can control resources in pursuit of their own personal interests, which impacts society’s lives greatly... It [bureaucracy] also affects society’s political order and governments because... corruption remains an issue. The goal of the bureaucracy has a single-minded pursuit... what might be good for the organization might not be good for the society as a whole..."

"While bureaucracies are supposed to be based on rationalization, they act in the exact opposite manner. Political bureaucracies are established so that they protect our civil liberties, but they violate them... Service bureaucracies like health care are set [up] to help the sick and elderly, but then they deny care..."
"The failure of an organization to serve its intended purpose is known as a bureaucratic pathology. Government bureaucratic pathologies commonly come in the form of bureaucratic imperialism, failure to adapt to changing circumstances, and displays of favoritism of interest groups over the public at large."

So, stakeholders are fighting for liberation from both a disease (ME/CFS) and a dysfunctional bureaucracy--i.e. bureaucratic pathologies.


Senior Member
Logan, Queensland, Australia
@Ren, I regard bureaucracy as the working arm of government, the bit that enacts the directions of the government. It is very much non-transparent and unaccountable in many respects. Regulating bureaucracy is critical for effective government, but this fails to some degree or other almost everywhere.

Secrecy is one of the things that is a problem. If you cannot see what they are doing, how can you know when to call them to account?

Even when you can see things are wrong, how can you stop what they are doing?

Regulation of bureaucracy and bureaucratic failure in part leads to the notion of small government. Yet its not the size that is critical, its that smaller is easier to keep an eye on. The more transparent the bureaucracy is, and the more accountable it can be made, the better things.are. This is easier to do in small government, but a properly directed and accountable large bureaucracy can have value in the right circumstances, its just harder to do.

Failures in bureaucratic regulation are at the heart of democracy and indeed all government, and I suspect in part go to old constitutions that have inadequate safeguards.

When you privatize bureaucracy you create an additional barrier to transparency and accountability. In time corruption will be almost inevitable. Bad bad bad idea. You risk creating a private organization that cannot fail because its protected.


Slow But Hopeful
Couchland, USA
Not about CFSAC or NIH, but germane to the thread:

" In what was one of their most epic displays of political crime-fighting, which was captured on video, Allen and Kraft held the entire Clark County Park District Board under citizen’s arrest on May 13, 2014, for violating the Illinois Open Meetings Act, a Class C misdemeanor.

When asked if there would be public comment, one of the board members said, “I vote no.” Followed by five other board members.

Board attorney, Kate Yargus, could be heard on video saying there would be no public comment that night, and told the board members they were “free to go,” even after Kraft’s citizen’s arrest announcement. She tried to cite statute to Kraft, but before she could finish, he said, “Just sit down, you are making yourself look like a fool.”

Deputies were dispatched to the scene, but instead, Clark County Sheriff, Jerry Parsley, personally responded that night. Parsley said he knew it was a heated situation and felt it would be best if he handled it. He said that Kraft handled the citizen’s arrest responsibly, and the board was definitely in violation of the Open Meetings Act by not allowing the public to speak.

“It’s not that they should have. They’re mandated to,” Parsley said. “The people need to have their voice. It’s not a dictatorship. It’s a democracy.” "


Rebel without a biscuit
While they sit in a cell with the opportunity to reflect it might be worthwhile to offer up some viewing entertainment.
When I read this stuff I am reminded of the Ceausescu regime and how that ended.

The corrupt officials might contemplate their good fortune in being detained in what is still a democracy (no thanks to them) however tenuous (they can take credit for that).

No doubt the same insolent attitude toward the citizens they serve keeps them from believing that they are in any way accountable.