Monday, February 2, 2009
Monday, January 26, 2009
Friday, January 16, 2009
Monday, October 13, 2008
New Blog URL
Since AOL is shutting down the blog function at the end of this month, we've transferred the blog posts to:
http://cfs-facts.blogspot.com/
Be sure you change your bookmarks so you can visit us there.
NCF Website Updated - New Articles/Research
articles (of over 30) were selected to go onto the website from the summer
edition of The National Forum as members have already received the fall edition
of the newsletter. The Memorial List has also been updated as well as the
newest published medical journal article that has proven that the assay for
ciguatera is a biomarker for autoimmune diseases. This newest research found
that chronic fatigue syndrome was an autoimmune disease as well as Gulf War
Syndrome and prostate cancer.
Gail Kansky
President, National CFIDS Foundation, Inc.
http://www.ncf-net.org
103 Aletha Rd.
Needham, MA 02492-3931
781-449-3535
Sunday, October 12, 2008
More from One-Click
One More Nail In The Coffin
A New York Times editorial echoes our decade old refrain: "We've long feared that the integrity of medical research is being eroded by conflicts of interest and manipulation of scientific data." In sharp contrast, we bring to your attention an important editorial by Dr. Nassir Ghaemi in the American Journal of Psychiatry (March 2008). Though Dr. Ghaemi has received funding from drug manufacturers, he pulls no punches about the adverse effects of antidepressants.
Vera Hassner Sharav, AHRP
* * *
As Dr. Yunus says, doctors manipulate the data to say what they want it to say.
The best experience I've had with any anti-depressant was the one I could say had no effect whatsoever, positive or negative. Most of them simply made me sicker. It wasn't the drug I needed, but it was what the doctor wanted to prescribe -- it was easier for him to slap a "depression" label on me than to accept that a specialist had called it CFS and read up on what to do for that. You spend a lot of the day in bed, you must be depressed, NEXT!
It's been said that the reason doctors don't like to deal with CFS patients is because it's too difficult for them to deal with someone who doesn't get well. However, enough of us have improved with proper treatment that I don't buy that. No, I will never be "cured", but with the right medication, I could've gotten back to work in a couple months. I'd done it before; I intend to do it again.
The real problem is, CFS is an enigma and will challenge everything you've learned about disease and medication (many patients have the opposite reaction to pills -- I've more than once been awake all night after taking a sleeping pill, and fallen asleep minutes after taking a handful of No-Doz). It requires more "thinking outside the box" than most doctors are willing to do. Much easier to slap an inaccurate psych diagnosis on the patient, hustle her out the door, and hope that you offended her enough that she'll go inflict herself on another doctor.
Saturday, October 11, 2008
Doesn't it just figure?
AOL assures us that we can "easily" transfer our blogs to a new location, click here.
So, I click here, and get taken to a log-in page. Since I don't have a blog there, I try to create a new account, but it says my e-mail already exists in their system. OK, so I try to log-in at the page that directs me to, which tells me that I can't log in because they have no record of my e-mail existing in their system. Grrrrrrrr.
OK, finally out-stubborned that, got logged in, created a blog, and can't find the link I'm supposed to click to import this journal. Hmmmm.
Finally found a link to Help, Importing AOL Blogs. Which says click here -- OK, maybe the problem is that I came in through the wrong link, and you've got to come in through this door to get the Import link. Go through all the rigamarole of setting up a second blog, and the word Import does not appear on that page in the spot where it appears in the picture on the Help page.
Go back, re-read Help, Importing AOL Blogs. It says you can also do it through the Advanced Settings page. Great. Click on Advanced Settings ... it tells you how to set up a blog there to be hosted elsewhere, but the word Import doesn't appear on this page, either. Not only where it's shown in the picture, but nowhere.
Click through a few million more Help pages till I finally find a link to Known Problems. This tells me what to do if my AOL blog does not complete the import process, but still does not do me one bit of good in starting the import process!
Click around some more, there's a Google Group specifically for this purpose, but all the posts deal with the process stopping midway, none of them tell me how the bleep I'm supposed to start the process.
So, an hour and a half later, I still have not been able to do the automatic transfer that AOL says is "easy". Haven't even found the magic button to push to start it.
To which I have only one thing to say:
Thank God this is a temporary fix and in a couple months we'll be doing all this in-house at CFSfacts.org, where I do not have to deal with this <steer manure> ... I'll have my very own webmaster to deal with it for me!
The only good news is, I am doing this now, and not 8 years ago when I could only use the computer for 5 minutes an hour, and can now think clearly enough to understand the instructions, and to grasp that the problem is not that I'm failing at the task because I don't comprehend the instructions, but that the instructions are telling me to click on something that doesn't exist.
8 years ago, I would've been totally exhausted and so frustrated with my inability to understand how it's done that I would've screamed and thrown the computer through the TV. At least now I know the problem isn't me, because I'm absolutely positive that the word "import" does not appear on any of those pages in any of the places the pictures show it to be. You can't click what's not there, and this time I'm not missing the word because of the mental fog.
So, in that way, I've come a long way in 8 years, thanks to finally getting the sleeping pills I needed instead of the anti-depressants that made me sicker. But the joy in knowing that I'm finally improving is overcome by the frustration of having wasted an hour and a half of my limited functional time trying to do the impossible by following inaccurate instructions.
And incredibly annoyed that it appears that instead of just being able to click one button to transfer all these posts to a new blog, as AOL assures will work with this one particular blogging site only, I am, in fact, going to have to waste several workdays manually saving each and every post so we can put them all up at CFSfacts.org when we re-launch.
Nothing is ever as easy as computer geeks make it sound, and I am quite sure that they will figure out some way to blame it on the user that their system is not displaying the correct page with the correct buttons.
LATER
AOL claims that this is simply a matter of Blogger's system being overwhelmed with transfers, which doesn't explain why I can't even find the Import button to click and be told it's not working.
I did find a place to go to ask questions:
http://groups.google.com/group/blogger-help-aol-import
Since you've already created a google identity to set up your Blogger account, it's fairly easy to join the group so you can ask (or complain).
Later
8 hours after starting the supposedly "quick and easy" process of transferring this blog to google, I have given up. The only answer to be had is that I must be doing something wrong in the transfer process, when, in fact, I can't even find the place to start the process -- I can't be inputting my URL wrong when there's nowhere on the page to put it!
Google has never impressed me. I use altavista and GoodSearch and find lots of things that google doesn't. Their Usenet feed qualifies merely as "better than no Usenet at all". And now their promise that I can just click in one spot and automatically transfer my blog to their site has proven to be yet more empty promises from them, more incompetence, yet more reason to have my blog on my own website with my own Web Guru there to not only answer questions but do the work for me when I get frustrated.
8 hours and a couple hundred webpages/clicks/links later, and I am no closer to getting this blog transferred over, or getting any answers from a live person. There is nowhere that you can e-mail google from the Blogger site. I would urge all my fellow bloggers to boycott Blogger, since it's the most useless piece of crap excuse for a website I've ever seen. The pages that seem to promise you can contact them, simply result in an endless loop of clicking on page 1 to get to page 2 and clicking on page 2 to get taken back to page 1. THIS IS NOT CUSTOMER SERVICE!
8 hours after I first started trying to report it to google, 7 hours after I reported it to AOL, there is still NO "status" and NO "known problems" on this subject. All I get in trying to search the site is returned to the same Help page that shows where I should be looking for the word "import", and when I go to my blog, the word is not where it's shown in the picture. You're supposed to be able to do it through Advanced Settings, but it's not there, either. I've cleared my cache, removed my cookies, and the problem still remains, that the webpages that are loading on my computer do not have the magic word anywhere on them.
I hope every AOL member who's been caught up in this loop of unhelpfulness sues Google/Blogger for every hour that's been wasted. Not at the $15/hour you're paid, but at the $75/hour your employer bills your time to the clients. Maybe that will get their attention at how much time of how many people has been wasted trying to do the impossible. You can't click on a link that's not there. And if the link is not there, it does not help to blame the user for doing something wrong on their end.
Google/Blogger are the biggest bunch of idiots in Silicon Valley if they think this is going to impress me to keep my blog there. As soon as my website's up and running, I'm gone, and it'll be MY website that gets the ad revenue for the page views. I flatly refuse to use any google product ever again because this experience was the last straw in a long history of disappointments. And I hope that they've set up a news tracker that tells them when their name hits the web, so that some live person there finally reads what I would've said to them if only I could've found a link that actually led me to an e-mail form.
NOTE: instead of saying it to google privately via an e-mail, I've posted it on the web where the whole world can see it. Not quite the way any business wants a customer service problem to be handled. But they're google, they don't have to give a damn.