Category Archives: Facebook

Facebook Has Gone To Hal

I am writing this at two o’clock in the morning on Monday September 20, 2010 because I want to report it while everything is fresh in my addled mind.

Facebook can be a wonderful tool to interact with the rest of the world, but don’t depend on them to be of any help if you ever have a problem with the service.  Yes, they have a so-called “Help Center”  that looks impressive until you try to use it.  There is no way you can actually talk to anyone.  I have come to believe that Facebook is nothing more than a giant supercomputer like “Hal” in the movie 2001 A Space Odyssey.  There are no people there, just Hal and he does not communicate with mere mortals.  I’ll bet shareholders can talk to him but not us measly members.

 You see, I am a heart transplant recipient and the administrator of ORDER Transplantation Initiative  a Facebook site dedicated to helping organ donors, caregivers, those who need transplants and patients who have had them.  In three years we’ve attracted over 2,300 members.  Many of these people are in life and death situations, desperately waiting for life saving organ transplants that may never come.  This is no breezy, lightweight page, it deals with issues and people who depend on the information we offer to make important life decisions.

For 3 years the site was named Organ Transplant Patients, Families and Friends but because we have expanded our horizons so greatly in that time I decided a name change that properly defined our group was in order so I performed the very simple Facebook function of changing the name and notifying all the members of the action. 

The message I sent to members was that we had changed the name to ORDER Transplantation Initiative, along with an explanation of the meaning of the acronym ORDER.  Everyone got the message.  Then….Facebook or Hal sent out another message, this one announcing that I had changed the name of the group from what it was (Organ Transplant Patients, Families and Friends) back to Organ Transplant Patients, Families and Friends.  Obviously the message made no sense.  But the worst was yet to come.  Facebook didn’t just send one bogus message to all members it continued to send the same message over and over again, hour after hour after hour.  Some members got as many as 100 or more of the same message and many become very angry.

I did my best to tell everyone that the spamming was not the fault of our group but that it was Facebook that was to blame.  I think my clarification got lost in the Facebook maelstrom of emails because members began to drop out of the group despite my repeated efforts to calm and reassure them.

In the meantime, just to be sure it was a Facebook caused problem I ran four sweeps of my computer with malware and virus destroying software.  The sweeps found nothing. Then I checked Facebook and found that over the months scores of group administrators had complained of the same thing happening and got no, nada, niente response from Facebook.  Some administrators said they lost most of the members they had worked so hard to get.  Now it was very clear that Facebook was at fault and I again reported the fact to my members but to no avail, they continued to leave the group. That’s when I went back to the Facebook “Help Center” and found that you cannot reach a person there, there is no “Contact Us” icon.  All you can do is choose from a list of problems, probably written by Hal, and if yours isn’t there you are out of luck. 

Finally, after many internet searches and digging into the Facebook ‘Help Center” site, I found a well-hidden link that allowed you to report a “bug.”  I reported it four times.  Once I got a return form-letter email, thanking me for bringing it to their attention, the other times I received nothing.  It is now 36 hours later and I’ve still heard nothing and we are now down some 700 members.

After about 18 hours of this nonsense I decided that the only way to stop the never-ending stream of email that was going to members was to shut down the site.  That meant we’d lose all the information we had accumulated and ALL of our members,. But I determined that shutting it down and attempting to get members to re-join was a better tactic than continuing to irritate them and run the risk of losing them forever.  Before doing that, however, I made one more effort to keep it open.  We posted a notice on the site, telling members how to turn off the notification process on their member page so they could stop getting the Hal generated emails.  The jury is still out on whether that’s working.  I will write a follow-up to this blog.  

How to Stop the Bogus emails.  For those of you still getting the bogus emails here’s how to stop them. Go to your Facebook page, click on “Account” in the upper right hand blue bar, click on “Application Settings,” scroll down to “Groups” then click on “Edit Settings,” when it opens click on “Other Permissions, ” scroll down to “Changes the Name of One of Your Groups” and remove the check mark. that will do it.

In the meantime, a friend who is the administrator of another Organ donation/transplantation Facebook site, Rex Maus of Transplant Community Outreach ,! was trying to help me by telling his and my members that it was a Facebook problem and we were working on it.  As a result, his group started losing members and then because of his vigorous efforts on my behalf, Facebook (Hal actually because there are no people there) banned him yes, banned him, from the service.  They let an angry woman write “F— You” on my group’s wall but banned Rex because he was trying to help.

Rex’s group and mine are life saving groups.  People depend on and look to us for answers on how to help their dying loved ones get organs for transplantation, how to take care of them, how to register to be organ donors, new advances in medicine, science and technology and information on research into new ways to help the over 110,000 people in the U.S. who are awaiting transplants.  Many of them will die waiting.  For Facebook to ignore our problem is criminal. 

By way of this blog we are asking readers to contact Facebook at their Corporate Headquarters, 1601 S. California Ave. Palo Alto, CA 94304 (650)543-4800,  express your outrage over this situation and urge them to offer a link to reach real people who can help solve real problems.  Pick up the phone ASAP and let them know that their concentration on profitability over all other issues is offensive, wrong and may even be responsible for the further suffering of our members.  I, for one, am mad as hell and I’m not going to take it anymore!  

I hope you have found this post to be helpful, perhaps enlightening but no matter what we would like to get your thoughts on this most important issue.  Please comment in the space provided or email your thoughts to me at  And – please spread the word about the immediate need for more organ donors.  There is nothing you can do that is of greater importance.  If you convince one person to be a donor you may save or positively affect over 50 lives.  Some of those lives may be people you know and love.

Visit and join my Facebook site, ORGAN Transplantation Initiative (OTI) at the more members we get the greater our potential impact on decision makers who influence all organ transplant issues.  Also, check out my blog and my Facebook home page

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