Great opportunity to lobby for proper NIH funding of mecfs research?

[Simon]

The new NIH/P2P report says mecfs research is in a bad way, recommends new research and says more funding is needed. The NIH will respond to the recommendations later this year, creating a great opportunity (I think) to push for proper funding into mecfs. What do people think?

Medscape: Chronic Fatigue Syndrome Report: More Research Needed (Miriam E Tucker)

In a statement to Medscape Medical News, the NIH Office of Disease Prevention said although panel reports are not policy statements of the federal government, the NIH carefully considers the recommendations that are outlined in the final report. In addition, approximately 6 to 8 months after publication of a panel report, the NIH Office of Disease Prevention convenes a meeting of federal agencies to consider actions that might be taken to address the panel’s recommendations.

I'm in the UK and have only a hazy idea of how things work across the atlantic, but this looks to me like a great focus for lobbying the NIH to put appropriate funding into mecfs, as opposed to the paltry $5m a year we get now.
As I see it

• Part of the NIH convenes an independent report into state of mecfs research
• Report concludes mecfs research not in a good way, recommends many new approaches and calls for new funding
• NIH to consider recommendateions & NIH Office of Diseaase to convene meeting of federal agencies
• Both the above are times NIH will explicitly consider how to respond to mecfs in the light of its commissioned report saying much more research needed and more funding too
• Seems like the perfect chance to call for much more funding and highlight the woeful level of funding of mecfs relative to other serious illnesses like MS and Rheumatoid Arthritis

I know there are a couple of petitions already calling on Congress to up funding and thought this report creates opportunities to focus those demands. For example, would it be appropriate to ask Representatives and Senators to write to the NIH asking them to up funding dramatically when they respond to the report they commissioned themselves later this year? I also fear that without pressure the NIH won't do much in response to the report.

I don't think I'm explaining what I mean terribly well, but what do others think, especially those in the US?

Thanks to @Never Give Up for highlighting the Medscape info initially (original thread), and to @Sasha for the suggestion to start this in a new thread​

 

[jimells]

I don't know how things work in the UK but I can tell you how things work here:

1. Public outrage about a topic.
2. Authorities convene a "Blue Ribbon Panel" to write a "White Paper".
3. Establishment media finds new topic to get excited about, and forgets about the older topic.
4. Blue Ribbon Panel release White Paper after the general public forgets they were outraged.
5. Blue Ribbon Panel is disbanded, never to be heard from again, while their White Paper is filed away, never to be referred to again.
6. Lather, Rinse, Repeat.

The US government's contemporary use of torture is a good example of this. Some time ago there was much outrage, particularly when the abuse and murder of prisoners at US military concentration camps in Iraq were revealed. The US Senate wrote a report and released a tiny portion of it. No one was prosecuted and psychopaths like George Bush, Dick Cheney, and their minions are still on the loose. And a majority of Americans still think that US torture is just fine.

The whitewashing of our treatment by NIH and CDC will not stop until the real reasons for no-research-itis are uncovered and exposed. I have nothing against petitioning NIH for redress of our many grievances, However, NIH will continue to ignore them until their careers and personal freedom are in jeopardy. Until we raise the cost of the current policies, they will not change.

Our Dear Leaders have never made substantive changes that favor working people simple because it is "the right thing to do". They don't understand the concept. Social progress is only made when people are able to work together enough to cause real disruption to the status quo. The amount of disruption required depends on how determined the establishment is to hold onto a particular policy.

As an example, gay marriage doesn't really affect corporate profits very much, so it is of little importance to the Captains of Industry, with the result that they are not resisting this change, and it is happening rather quickly.

As we have seen over and over, the policy of defining our illness out of existence and denying research funding is extremely well entrenched. It is obvious this policy is directly benefiting disability insurers (regardless of how the policy originated) who stop paying benefits after two years, based on the lie that the illness is perpetuated by "mental illness", and a law that allows insurers to limit mental illness benefits to two years. This is the roadblock that must be removed. If there were parity for mental illness disability benefits, there would be no reason for insurers to block research. In fact, they would suddenly have a multi-billion-dollar incentive to support research.

Everybody loves a good scandal. It gives folks a chance to confirm to themselves that they are, indeed, much better human beings than the Evildoers who got caught with their hands in the cookie jar. There is a huge scandal behind the polices of this illness, just waiting to be revealed. We have documented conflicts of interest between Sir Simon's gang, the UK Dept of Work and Pensions, and the UK insurers. There is no reason to think those conflicts do not exist in the US. But we do need someone to uncover and publicize them.

Are there any well-organized groups advocating mental illness parity? Are they making any progress at all? Perhaps some of those folks have insight into NIH-insurance industry connections. Those connections are what we need to find.

Thirty years of petitions have failed to move the needle on research funding. Why will more of the same failed strategy give us a different result?

 

[jimells]

Tom Hennessey explains the US political system in his interview with Cort. I urge folks to read it carefully. Without a thorough understanding of our adversary, it is impossible to formulate a strategy that has any chance of success.