FLASH: CDC/NIH using Wichita, Georgia samples

[martinwhite]

Request congressional investigation into cdc

Complain about the CDC/Reeves and request a Congressional investigation into the CDC/CFS program and William Reeves. I suggest (and have already contacted) Senator Harry Reid, Nevada (Home to the WPI). Remember, Reid was the guy back in 1999 that nailed the CDC for misuse of CFS funding. He is in the midst of health care reform but that should NOT stop anyone from asking for an investigation into the CDC/CFS program and Reeves in particular. Complain, request, and keep doing so. The CDC has wasted hundreds of millions on their new buildings with all the snazzy stuff that has nothing to do with research - and this would be enough to get Reid's goat. Add to this his knowledge of the CDC's misuse/diversion of funding for CFS.

It is great to vent, but better to complain to those that CAN do something and make the changes that needed to be made years and years ago. Hit Reid's contact site and COMPLAIN!!! Use the data and background knowledge that we all have acquired.

Reid's contact information is on this website so there is no need to email him, just fill out the form and hit the send button: http://reid.senate.gov/contact/index.cfm

 

[martinwhite]

Kathleen.Sebelius@hhs.gov

Also email Sebelius and hit her with your complaints about the CDC/CFS/Reeves. It would be a great idea to also discuss the fact that this newly discovered virus causes cancers and is in the nation's blood supply - both the white cells and the plasma (See Dr. Peterson's briefing on the virus in the blood for more accuracy).
Cancer causing virus in the nation's blood supply??? THIS should get her attention. I would also use this as a means in other forums/blogs/website/emails/media contacts to get attention to CFIDS, via CANCER CAUSING VIRUS FOUND and CANCER CAUSING VIRUS IN A NATION'S BLOOD SUPPLY.

Remember, these Feds work for you. You pay them. Email them and tell them what you think and what you want. Use good data and be accurate in what you are saying. Sending emails at 3am like I do when I'm in pain and AWAKE is NOT the thing to do.

 

[Advocate]

Did we fill the chairs??

Someone said (or wrote) they moved the meeting to a larger room, one that would hold three times as many people.

 

[Cort]

There absolutely should be a Congressional investigation into how the feds have screwed up their response to CFS but I don't think it should feature Dr. Reeves mistakes. He's just a researcher - he's doing what he thinks is right. I've only spoken to him once but he said they all want to be right about this. If he's a bad researcher so be it.

The harm done to us in my opinion is the way the feds have unbelievably underfunded this disease. It causes $20 billion a year in economic costs, it affects at least 1 million people, it has very very high disability rates yet there are several diseases that received triple the funding it CFS does which affect me be 25,000 people in the US. We're treated by the federal government as if we are a minor disease both with regards to prevalence and effect. Its as if 1 million people had sore throats - that's the kind of money they been devoting to figuring out ME/CFS. That's criminal in my view.

The medical research structure needs to be redone so that research funds are based on need rather than researcher preference. If you happen to have a disease that researchers don't want to study boy are you out of luck.

 

[Dolphin]

There absolutely should be a Congressional investigation into how the feds have screwed up their response to CFS but I don't think it should feature Dr. Reeves mistakes. He's just a researcher - he's doing what he thinks is right. I've only spoken to him once but he said they all want to be right about this. If he's a bad researcher so be it.

I like to give people the benefit of the doubt in life. But I find what has happened with empiric definition to be highly suspicious.

The two most plausible (to me) reasons he did it was:

- they needed more CFS patients from the 2-day Wichita study on which they spent $2m of the CFS budget - 10 CFS patients (or 16 - if you let in people who previously had Major Depressive Disrorder with melancholic features) wasn't going to be enough to produce papers esp. given few men (so might be excluded from some studies), some people on medication (so going to be excluded), some people would have missing data).

- they wanted to broaden the definition so that it would be harder to find biological abnormalities and easier to find psychological abnormalities.

Even the language used is a bit misleading. The thresholds weren't found using fancy mathematical analysis like some sort of cluster analysis. What they did was pick values out of the air.