Monday, October 21, 2013

In Search of Severely Ill, Bedridden ME/CFS Patients

I saw this announcement in the New Jersey CFS Association's newsletter:

"Dr. Lapp Seeking Severely ill/disabled patients
From: Hunter-Hopkins ME-Letter Sep 2013
Dr. Charles Lapp:

We are seeking to learn more about PWCs who are severely ill and bedfast. Such individuals are unable to consult with physicians and may not be getting adequate healthcare. Both the Centers for Disease Control and the International Association for CFS/ME and FM (IACFS/FM) are considering programs to identify and assist such patients. If you know such an individual, please email Dr. Lapp ( with the patient’s initials (only) and city of residence. If the person is willing to be contacted, please provide a telephone number and/or email address. Thank you for your help!"

Dr. Lapp is one of the top ME/CFS experts in the world, so this sounds like a fabulous opportunity for patients who can't normally get out to see any doctor, let alone one of the best in the world.

In addition, responding to this initial survey will help the CDC and IACFS/FM to understand how many of us are out there, unknown and uncounted. Privacy will be protected, as they only want initials and location as minimum information.

If you or someone you know is severely ill with ME/CFS, please contact Dr. Lapp at the above e-mail to at least get counted and maybe get some long overdone medical attention, too.

P.S.  I checked with Dr. Lapp - this survey is international (though in the second stage, where they reach out to try to help those who are housebound, they may be limited to the US) - so everyone who has severe ME/CFS and/or is bedridden or housebound, please stand up...err...lie down and be counted!

1 comment:

Anonymous said...

Reblogging On ElizabethMilo.Com. Thank You, Sue!