Jennie Spotila is an ME/CFS patient and advocate who has done extensive research on government funding for CFS. She recently discovered that the latest Senate committee report for CDC appropriations appears to recommend completely defunding CFS research.
She points out that the cut is not a done deal as the House and Senate need to reconcile the bills, and the House proposal includes $5.4 million in funding for the CDC’s CFS program. We also don’t know why the committee report does not include CFS funding. But if patients and allies want to ensure funding is kept, it is vital to have our voices heard.
There is a lively debate on her blog about whether advocates should fight for CDC funding considering how poorly CDC has been treating CFS patients over the past decades. Some believe we should absolutely oppose the funding cut. Many believe that the CDC has done more harm than good and we should let it elapse. Still others think that regardless of the CDC’s track record, doing nothing would send the wrong message to Congress. Jennie writes:
[pullquote align=”full” cite=”” link=”” color=”” class=”” size=””] Multiple sources have expressed deep concern to me about the prospect of no funding for the CDC’s CFS program. Among other things, the CDC’s multisite study would be in jeopardy. I certainly respect these concerns, and I also respect the fact that the multisite study is an important epidemiological effort that provides revenue to the seven contracted participating sites. But there are powerful arguments on the other side too.[/pullquote] For her part Jennie thinks that while the program is “not 100% bad,” on balance, when she weighs the benefits and the harms, there are too many issues at the CDC for them to use the money effectively. She does not think that the CDC’s current approach to CFS is worthy of her support:
[pullquote align=”full” cite=”” link=”” color=”” class=”” size=””]I want a CDC program that studies my disease, and that recognizes the central features including PEM. I want CDC to take the lead on educating physicians about my disease, so that all patients can be accurately diagnosed and appropriately treated. This means the end of blanket endorsements of graded exercise therapy and cognitive behavioral therapy as treatments. I want “chronic fatigue” to be excised from the CDC’s approach to ME/CFS once and for all.[/pullquote] If you want to ensure the Senate hears your voice– whether or not you would prefer the CDC receive continued funding for their CFS program– then you can email the relevant senate subcommittee members at using this very simple form. You can write your own letter or make any edits that you would like to the sample letter and add your own story.
[button_color url=”http://www.occupycfs.com/2015/08/04/no-cdc-funding-for-cfs/” content=”Read the full post at Occupy CFS” target=”]
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the