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Article: More Community Outreach From the NIH: Mangan Sets up Email Listserve for the ME/CFS Communi

The only information they need is our name?
Will they contact us with more details?

Hi Neilk,

After signing up, they'll send you an email right away with a confirmation link in it. Just follow the instructions in the email (usually just clicking the link) and it will take you to a site confirming your registration. Whenever they have information to send to the CFS community, you should automatically receive it in your inbox.
 
Hi Neilk,

After signing up, they'll send you an email right away with a confirmation link in it. Just follow the instructions in the email (usually just clicking the link) and it will take you to a site confirming your registration.

i got an email right back but no confirmation link or instructions to confirm registration. it just came back with some weird computer jargon:

Summary of resource utilization
-------------------------------
CPU time: 0.000 sec Device I/O: 4
Overhead CPU: 0.000 sec Paging I/O: 0
CPU model: 4-CPU 3333MHz Xeon X5260 6M (2048M)
 
Hi Neilk,

After signing up, they'll send you an email right away with a confirmation link in it. Just follow the instructions in the email (usually just clicking the link) and it will take you to a site confirming your registration. Whenever they have information to send to the CFS community, you should automatically receive it in your inbox.

Thank you Shannah,

I understand now. This is for future information that they want to send to people who have registered.
 
Dr. Mangan does not have CFS

What what? Dennis Mangan has CFS himself? How have I missed this information before?

I emailed Dr. Mangan to check on this rumor, and received the reply below:

Dr. Mangan,

I know you are very busy, so please forgive the intrusion to check on an internet rumor. There is a CFS patient named Dennis Mangan who has a blog: http://mangans.blogspot.com/search?q=cfs

Can you please confirm whether or not this blogger is you? Are you willing to confirm whether you have CFS or not? Rumors stating that you and the blogger are one and the same are starting on one of the patient forums. I would very much like to share your response to these questions with the patient community, before the rumors get out of hand.

Many thanks,
Jennie Spotila

*****

Hi Jennie,
Thanks for the heads up. No I don't have CFS and don't have a blog. Tx, Dennis

(emphasis added)