Please send an email every day to the people listed below.
Please feel free to use all or part of this letter about the need for the CDC to do a 2-day exercise test, and also to repost in other locations. (Thanks to Mindy K. for help with the letter)
It helps to save a copy of the emails you send so you can change it to use the following day.
Email subject: 2-day exercise test (feel free to change subject name; it helps avoid screening of your email)
Dear Dr. Unger:
We need CDC to do a two-day exercise test in CDC's Cardiopulmonary-Exercise Testing, not a one-day exercise test.
Previous studies, including those by Dr. Chris Snell, have shown that the fatigue ME/CFS patients experience is not felt immediately upon exercise; it develops 24 to 48 hours after exercise. If you test patients for only one day, your results will not be accurate and patients will appear to be deconditioned. If you test patients for two consecutive days, their PEM will be measurable.
That is why CDC must do a two-day study.
If patients are too ill to complete the second day of exercise, then the test can be stopped. If the test has to be stopped, that will also give CDC valuable information about ME/CFS.
We need to know in a timely fashion that CDC is willing to do the study correctly with a two-day test. If the CDC continues to ignore patients, we will escalate this matter to your superiors, the press and Congress.
(your name, how long you have had M.E.)
Snell’s study: http://www.ncbi.nlm.nih.gov/pubmed/23813081