Reblogged from Sue at Learning To Live With CFS:
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 (cwlapp@drlapp.net ) 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.
Rag and Bone Shop of the Heart 
It’s good to know there are people out there looking for answers for CFS/ME sufferers..
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Thank heavens someone is including the severely affected – they are excluded from all trials as they are too unwell to attend hospital in person. It’s like researching heart disease and only looking at people with angina and not those needing a triple by-pass!! I’ve shared on Facebook as I have several bedridden ME friends (I used to be one myself, for 10 years) – not sure if he accepts overseas contributions (we’re all in the UK) but we can email and ask. Thanks for posting this 🙂
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Thank you so much! I love this family. 🙂
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Thank you for sharing. I sent him an e-mail. Did anyone post this to Phoenix Rising already?
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