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Action Alert - NIH:

by Pat Fero
Wisconsin CFS Association

July 11, 2005

With careful research, I prepared and presented a report in March of 2004 to the Chronic Fatigue Syndrome Advisory Committee. I asked for investigation. With 6 million dollars a year, not much more than in 1995, funding levels have declined. I do not have a problem with that. NIH never has enough money to go around. What I do have a problem with is that millions of dollars appear to be spent in the name of CFS, but not on CFS specific studies.

I continued my research through 2004 to look at the grant review panels, to keep track of grants funded and I am still left with this question: Where is the CFS money?

Therefore, I prepared another report. Please find this at www.wicfs-me.org/whats_new.htm#action%20alert.

The file is PDF. You will find a cover letter and a list of appendices with pages of lists. My point is to show that IT IS NOT MY OPINION that something is wrong with how CFS grants are funded. It is in the numbers and in the lists.

What is to be done? Who holds the NIH personal accountable to the estimated 800,000 people in the US who have CFS? I can't file a report and call it a day. I am not important enough. So, despite feeing horrid, despite obstacles, we all have to take this information to our senators and our congress people. This is our backyard to clean up and no one will do it for us.

I am pleading with you to take action. Please open the ACTION ALERT file and print. The web addendum file includes more supporting documents for your reference.

Call the LOCAL office of your congressperson and senator. Ask to talk to the health aide. Explain the problem in a few sentences and that you have a one-page letter plus lists of supporting information. Our ultimate goal is to ask that the 1999-2000 Government Accounting Office (GAO) investigation of NIH be reopened.

Please remember that staffers get hundreds of calls a day, so keep it short. Someone will tell you where to send the report. Most often, if you send to the local offices, that mail is more easily forwarded than if you send to offices in Washington DC.

If only 10 people in each state went to their representatives with the report and the GAO request, it would make a huge difference. Might you be the person that tips the scales? Please e-mail Pat Fero at bp.fero AT verizon.net. Just put your state in the subject line. Name the senator or congressperson who received the information. Remember, if we do not have better research, we can never change the CFS mythology. With continued bias and bigotry, people suffer beyond the illness. Right now, we are not asking for a cure. We are not asking for our doctor a mile down the road to have better treatments tomorrow. We are asking for a fair deal. Hundreds of CFS researchers care and we need to help clear a pathway so that they can continue their work.

Last of all, we are asking others to do right by us and by our children. I lost my son Casey July 4th. He was 23 with an ME-CFS illness onset at age nine. Casey's very peaceful death was directly or indirectly related to this illness. As a mother, I do not have to be scientific and no one dare make me prove what I know in my heart is true after living with this boy ill for 14 years.

I feel good with all of you understanding pain... I have enough to share. Thank you so much for the cards. I leave for a month vacation soon. This will be good. Know that I am the best I can be at this time.

With much respect and love,


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