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CFID's is making progress - POTS needs to follow


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I would like to share this announcement that I received this morning. I try to keep up on what is happening with CFID's because it is known to overlap POTS.

In my opinion, POTS is probably the answer that some of the CFID's patients are looking for. But I also know that the Europeans have been doing extensive research and can actually prove a viral exposure. Another sorting out diagnoses I guess.

I hope to eventually see support and funding for POTS that CFID patients receive. I feel like marching Congress myself!

Please see attached email - This is from CFIDS of America

Action Alert!!

We're nearing the end of our Grassroots Action Center awareness campaign. This alert will be followed by one to be sent on May 12, CFIDS Awareness Day. From that point forward, we'll issue Alerts! as timely opportunities arise.

This week we focus our efforts on the National Institutes of Health (NIH). It is the world's largest biomedical enterprise, with a total budget of $27 billion. Organized into 27 institutes and offices, the NIH supports research by intramural scientists housed in its own labs and thousands of extramural researchers working in universities, hospitals and other institutions around the world.

Over the four-year period of 1999-2003, the NIH has reported support of CFS research totaling $31.6 million. The amount is hardly adequate for a disease that affects at least 800,000 American adults and children, costs the U.S. economy nearly $9 billion a year and remains challenging to diagnose and treat. We need NIH to redouble its efforts to find the cause(s) of CFIDS and biomarkers and effective treatments for it.

In this Alert! you will find a letter addressed to Dr. Zerhouni, director of the NIH, that you can use to voice your support for an expansion of NIH support for CFIDS research. Dr. Zerhouni knows what CFIDS is, thus we haven't taken up space with a basic description of the illness. Instead, we ask that you take an extra few minutes to "humanize" CFIDS. We've provided room for you to express the impact that CFIDS has had on your life, or the life of a loved one with the disease.

To participate in this week's campaign, please go to http://www.cfids.org and click on the Capitol Building icon on the left navigational bar.

Last week, over 2,453 letters were sent to Secretary for Health Tommy Thompson and key members of his staff. Since our campaign began on April 16, more than 6,415 letters have been sent to lawmakers, media and public health officials. We are beginning to receive notices that the Letter to the Editor you helped circulate is being printed. Already The Advocate in Baton Rouge, La. And The Capital in Annapolis, Mary., have published the letter. We'll keep you posted as the list grows.

Thank you for participating in the Grassroots Action Center campaign. Send your letter to Dr. Zerhouni today, and continue spreading the word using "Tell A Friend."

Please note: When sending the Alert it appears that you are sending Dr. Zerhouni duplicate e-mails. However, Dr. Zerhouni has two separate e-mail addresses and we will be sending one e-mail to each box.

K. Kimberly McCleary

President & CEO

The CFIDS Association of America

P.S. Sign up for the Grassroots Action Center listserv so that you continue receiving Action Alerts! after the intensive phase of our campaign ends. Just check the box that follows the area where you fill-in your name and address. Then confirm your request by replying to an e-mail message you'll receive from the site. (The confirmation e-mail is sent to ensure that Alerts! are sent only to those who wish to receive them.)

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That was a great article. I have CFS and pots symptoms and there was alot of very interesting info I am going to print out for my next dr. appt. Happy Mother's Day and I am going to bed so more later!!! Thank you for sharing.

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