US Sufferers: A Call For Congressional Action…

by Sleepydust on 10th May 2006

in All ME/ Chronic Fatigue Syndrome And Fibromyalgia News,ME/CFS Activism

Hi all, Steven Du Pre, Vice-President of the California Capital CFIDS Association recently sent me this email. I’m posting it here for everyone to read. If you live in the USA, please consider helping to support his plea!

Here is the introduction to the grassroots Congressional Action and the web sites where the Congressional Action can be printed out. Also, the web site for How to use the Congressional Action in regard to a short cover letter to go with it. They are in PDF, Word, and WordPerfect format. I hope you can send it around to a lot of folks. Below the introduction are some additional comments regarding how to send the Congressional Action that do not appear on the web site for How to use the Congressional Action. Thanks for any help you can give to this cause. Steve === Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients must go to Congress with advocacy needs that have not been met by the CDC or NIH. The link below will lead you to a proposed Request for Congressional Action for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. We are presenting it for anyone who wants to use it. This action is for the May 12 Awareness Day, but also to carry out through the year 2006. We are requesting you to send it to your Congressional Representative and Senators. We think that Congressional intervention is necessary because of the sad state of affairs in the areas of research, medical treatment, and public awareness of the severity of this disease. Twenty years after the Incline Village outbreak, the CDC admits that 85 percent of patients have not been diagnosed – and the majority of those who have been diagnosed receive little or no medical treatment. There is still no cure, nor even the hope of one. Too much time has been wasted while the patient population has grown to nearly one million. It has been 10 years since Hilary Johnson’s "Osler’s Web" was published, exposing the truth which CDC/NIH have tried to hide: M.E./CFS was portrayed as a purely psychological problem in order to save money for the government and insurance companies. CDC/NIH have even misrepresented the results of recent research, proving this leopard hasn’t changed its spots. They have touted their own research as the "first evidence" that CFS is real, despite 2000+ prior research studies showing primarily biological causes for the symptoms, and disproving the claims that it is purely a reaction to stress. We have to take matters into our own hands, or nothing will happen. Too many patients have suffered too long. Please join us in asking for Congressional Action to intervene and begin the process of resolving this crisis. Please write a brief letter to your Congressperson and Senators, explaining how M.E./CFS has affected you personally, and attach a print-out of this Request for Congressional Action so that Congress knows exactly what we, as patients, need and want. Below are the links for the "Congressional Action" and "How to use the Congressional Action." (in PDF, Word, & WordPerfect to print out for your Congress people). Thanks for your participation, Steven Du Pre, Vice-President California Capital Area CFIDS Association Lois Ventura, Pennsylvania M.E. Advocate Karen M. Campbell, Founder of CFSfacts.org Victoria Bell, California M.E. Advocate Patricia Caprio, Founder of Million Letter Campaign For acrobat (pdf) downloads: http://www.co-cure.org/Congressional_Action.pdf http://www.co-cure.org/Cover_Letter.pdf For Word downloads: http://www.co-cure.org/Congressional_Action.doc http://www.co-cure.org/Cover_Letter.doc For WordPerfect downloads: http://www.co-cure.org/Congressional_Action.wpd http://www.co-cure.org/Cover_letter.wpd === Follow-up information to Congressional Action Regarding the Congressional Action posted on Co-Cure by Steve Du Pre, we are asking for all ME/CFS-related organizations and websites to post the documents of this Action (unedited, of course) for as wide a distribution and as much visibility as possible. It is our goal to simultaneously flood our public servants’ mailboxes with these requests, especially from now through Awareness Day, May 12, but continuing beyond that as well. Let’s unite for this common cause and show our Senators and Representatives that there are not a mere million of their constituents that this disease affects, but millions more – in the form of our caregivers, our family members, our doctors, future victims of this disease, and society as a whole. If you can, print a copy (or multiple copies, if possible) of the Action out for each family member, friend and doctor to send off to his or her Congress people. Let’s tell Congress LOUD and CLEAR en masse via this Action that our public health agencies have repeatedly minimized and even blatantly ignored our pleas for help for two decades, and the time is WAY past due for our public servants to come to our aid and intervene. Two other ideas for consideration regarding sending out the Congressional Action: 1. Faxing the Congressional action along with your brief cover letter is sometimes an effective method of getting the message to your Congressional representatives. You might want to ask for the Health Aide for the Congressperson, and send it Attn: to that person. If you do not have a fax machine, you can sign up for the service of faxing by means of your computer at: http://www.fax4free.com/home.asp Membership in this e-mail fax site is free for one month: 2. Two Senators personally know people with Myalgic Encephalomyelitis/CFS who are quite disabled, and therefore they are probably more open and sympathetic to the cause. Those Senators are Senator Rick Santorum from Pennsylvania and Senator Harry Reid from Nevada.

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