Author Topic: Unger letter (sample): We need CDC to do a two-day exercise test  (Read 1328 times)

Patricia

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Unger letter (sample): We need CDC to do a two-day exercise test
« on: September 24, 2013, 10:26:13 PM »
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.

TO: elizabeth.unger@cdc.hhs.gov

BCC:

Kathleen.Sebelius@hhs.gov
howard.koh@hhs.gov
txf2@cdc.gov 
Tomfrieden@cdc.gov
collinsf@mail.nih.gov
wildaisyfl@yahoo.com

Quote

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.

Sincerely,

(your name, how long you have had M.E.) 

Snell’s study:  http://www.ncbi.nlm.nih.gov/pubmed/23813081 
 
 
« Last Edit: September 24, 2013, 10:53:32 PM by Wildaisy »
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Patricia

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Re: Unger letter (sample): We need CDC to do a two-day exercise test
« Reply #1 on: September 26, 2013, 04:05:54 AM »
If you prefer a letter worded less strongly, and without a threat, please feel free to make changes in the first sample letter above.

In addition, you are welcome to use any part of the following sample letter no. 2, or all of it if you like.

Quote

Dear Dr. Unger:   

Please reconsider your intention to use a one-day test for ME/CFS patients.  ME/CFS has different fatigue characteristics than other conditions. 

The fatigue ME/CFS patients experience is not felt immediately upon exercise; it develops 24-48 hours after exercise.  If you use a one-time exercise test, your results will not be accurate.  If you want to know how exercise really affects people with ME/CFS, then you need to test on two separate days. 

 Any type of exercise testing is difficult for ME/CFS patients; however, patients would really like to have helpful, accurate testing in research done on this illness.  Homebound and bedbound patients cannot tolerate exercise testing at all; they would be excluded from one or two-day tests.   If patients are too ill to complete the second day of testing, then the test can be stopped.  This situation will also give you valuable information about ME/CFS.

If there is a cost increase in using two-day testing rather than one-day testing, fewer patients could be tested.  Two-day testing can be done without cost increase if desired and two-day testing is the only way to get accurate results from exercise testing on ME/CFS patients.

ME/CFS patients are no different from anyone else.  What they want is respect for themselves and their illness.   If you would like to regain the trust of ME/CFS patients, this is a good way to start.

 Let us know you hear our concerns and you value us and would like to help us. 

 Sincerely,

(name, and  years of M.E. )

   References:

 CFS Central -  CDC's Two-Day Exercise Test: Not Negotiable, 9/24/2013http://www.cfscentral.com/2013/09/cdcs-two-day-exercise-test-not.html “

"The problem is that studies show that defects in ME patients' exercise capacity aren't evident until the second day of testing. With one-day testing, ME patients resemble deconditioned controls, a fancy phrase for couch potatoes. “

Why CDC must use two-day CPET testing - and specialists must define the disease, not bureaucrats 
http://slightlyalive.blogspot.com/2013/09/why-cdc-must-use-two-day-cpet-testing.html

“For some reason our bodies shift into anaerobic metabolism (generally anything that sends our heart rates over 100) too soon.  In my case, just walking does it when I'm sick.  So you could say that our bodies are responding to "normal" activities as if we were athletes pushing too hard, that is, to a certain degree we are perpetually in the midst of "overtraining syndrome."   

Clinical exercise testing in CFS/ME research and treatment http://apaththroughthevalley.wordpress.com/2012/10/04/clinical-exercise-testing-in-cfsme-research-and-treatment/

Seminarium om ME/CFS (Kroniskt trötthetssyndrom) Stockholm 11 September 2012. Professor Christopher R. Snell, Pacific Fatigue Laboratory, Kalifornien, USA

“So we’ll see an atypical recovery response.  So, essentially, it’s an abnormal stress test."

" So in the earlier study we saw a 24.5 decrease with our Chronic Fatigue Syndrome patients.  Other illnesses—it’s well documented that there is a 7.28% variability for this test.” 

 “We see a decrease in anaerobic threshold, so that kicks in a lot earlier, but the biggest finding out of this set of results was a reduced work efficiency a huge drop.”

Using Cardiopulmonary Exercise Testing to Evaluate Fatigue and Post-Exertional Malaise in ME/CFS http://www.investinme.orgArticleJ51-610%20Using%20Cardiopulmonary%20Exercise%20Testing.htm   “By employing a dual test paradigm (i.e., 2 exercise tests, each separated by 24 hours) it is possible to compare data across tests. A significant change in exercise capacity during follow-up testing with similar peak RER values, it could be argued, is clear evidence of PEM. It should also be noted that RER is a critical arbiter when dealing with accusations of malingering or lack of effort!”
 
« Last Edit: September 26, 2013, 04:11:40 AM by Wildaisy »
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Patricia

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Re: Unger letter (sample): We need CDC to do a two-day exercise test
« Reply #2 on: November 10, 2013, 09:08:35 PM »
Sample letter from Erica Verrillo

Quote
Dear Dr. Unger,
 In 2012, the CDC initiated a multi-site, multi-phase clinical assessment study to describe the differences and similarities among ME/CFS patients, determine how we characterize and treat patients, implement an accurate case definition, educate our medical community, and further our understanding of the underlying biology of ME/CFS.
 Because the CDC’s multi-site study represents a major opportunity to make a difference for patients – both in the United States and around the world – objective, biological measurements are vital. However, a clinical investigation that does not include proper methodology to obtain objective data will fail to achieve its goals and will result in lost time, lost investment, and worst of all, lost opportunity.
 It is absolutely essential that the CDC study include two objective tests which have consistently revealed abnormalities in ME/CFS patients. These tests are:
 1) The two-day Cardiopulmonary Exercise Test (CPET). The two-day CPET provides gas exchange and other objective and measurable results “which can’t be faked.” Numerous studies have shown that the 2-day CPET – as opposed to the 1-day CPET – is a reliable and consistent method for measuring post-exertional malaise (PEM), the hallmark symptom of ME/CFS. This test can be done employing technology which has been used in hospitals for decades.
 2) Low Natural Killer Cell Function/Viral Load. Abnormally low NK Cell activity and high viral loads are consistent findings in patients with ME/CFS. These tests can be done in many labs around the country and will provide objective, measurable data for comparison purposes.
 Measuring and understanding post-exertional malaise (PEM) is crucial to this study. PEM is not only the primary symptom that distinguishes ME/CFS from depression, deconditioning, and other fatiguing illnesses, it is the ME/CFS sufferer’s main obstacle to daily activities, gainful employment, and leading a normal life.
 Please include the 2-day CPET and tests for NK-Cell function and viral load in the CDC’s multi-site study.
 Thank you,
Never be bullied into silence; speak your truth even when your voice shakes.