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Thread: CFS Area?

  1. #1
    Distinguished Community Member Beader's Avatar
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    Lightbulb CFS Area?

    Hi Mods & Admin,

    Is there any way we could regain the CFS [Chronic Fatigue Syndrome] area to post in? I know I have Fibro too, but that doesn't work for everyone & I have some articles, links, and sites specific to CFS. I'm not sure if I have to garner more support from other posters before that can happen or not. I used to run a tri-state support group for CFS in the metro Philadelphia area, so most of my interest in research and conections has been oriented toward that mystery syndrome. BTW I myself am not a researcher or reporter in any way, shape or form.

    Thanks in advance.

    Sher
    Sher
    My Life Menu: CFS probably since birth, full flavored since the 80s, with Fibromyalgia, Major Depression with a side order of Anxiety and Agoraphobia sauce, Restless Leg Syndrome with spicy Other Sleep Disorders, 11 Eye Surgeries, a generous helping of Gut Problems

  2. #2
    Administrator/SYSOP Mike Weins's Avatar
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    Hi Sher :)

    We have a CSF forum, is that what you're looking for?

    http://www.braintalkcommunities.org/...%28CSF%29-Leak <--- CSF forum link
    Question: Why can't I post links or pictures?
    Question: Why can't I have a signature, avatar, or profile picture?
    Question: What's wrong with my account?

    Answer: You are in the "registered users" user group. This group is very limited in what it can do. This will annoy spammers to no end Just keep posting once you have been registered for 30 days and have made 11 posts your account will be "unlocked".

    It's really easy to put someone on ignore and it's strongly recommended that you do so with people who's posts you don't like.

    Step 1 - log in
    Step 2 - click on the "settings" link
    Step 3 - click on the "edit ignore list" link on the left side of the screen
    Step 4 - type (or paste if you copied and pasted it) the username of the person you want to ignore
    Step 5 - click the "ok" button on the right of the screen

    Easy peasy and will lower your blood pressure. One important note though, this won't hide quoted posts. It's an oversight on the developers part and it's not an easy thing to "fix." So if someone quotes someone you have ignored, you'll see the quote.

    Alternatively when you click on a person's name and view their profile page, underneath their avatar, there is a option that says, "Ignore this person". Click that link and then click the yes button.

  3. #3
    Distinguished Community Member Beader's Avatar
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    Hi Mike,

    No, you've got the letters switched, sorry. I don't want Cerebro Spinal Fluid, I want Chronic Fatigue Syndrome. Also known as ME [Myalgic Encephalomyelitis] in the rest of the world and CFIDS [Chronic Fatigue Immune Dysfunction Syndrome]. Other disparaging nicknames like Yuppie Flu and I don't want to conjure up any more. One book is titled "Disease of a Thousand Names" because each outbreak would get treated as a separate unknown quantity and named after wherever it happened.

    US awareness grew after the 1982 outbreak in Incline Village, NV and then Lyndonville, NY a few years later. The key docs from both those sites have gone on to become leading researchers. There was a big brouhaha a few years ago when we discovered that NIH was siphoning off our puny funding to go wherever they wanted, like measles research, thereby wasting millions per year and lying to patients as well as Congress. Much of the early saga of government medical mishandling of the disease is recorded in the book "Osler's Web".

    Some statistics show that as many as 1% or more of the US population suffers from CFS to some degree. And yes, it's more than "just being tired".

    Sorry for the rant/explanation. No harm no foul. :o
    Sher
    My Life Menu: CFS probably since birth, full flavored since the 80s, with Fibromyalgia, Major Depression with a side order of Anxiety and Agoraphobia sauce, Restless Leg Syndrome with spicy Other Sleep Disorders, 11 Eye Surgeries, a generous helping of Gut Problems

  4. #4
    Administrator/SYSOP Mike Weins's Avatar
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    Oh my I did transpose the letters didn't I

    The CFS forum wasn't brought over from the archives due to it's low activity. If we get enough members wanting a CFS forum we will add one.
    Question: Why can't I post links or pictures?
    Question: Why can't I have a signature, avatar, or profile picture?
    Question: What's wrong with my account?

    Answer: You are in the "registered users" user group. This group is very limited in what it can do. This will annoy spammers to no end Just keep posting once you have been registered for 30 days and have made 11 posts your account will be "unlocked".

    It's really easy to put someone on ignore and it's strongly recommended that you do so with people who's posts you don't like.

    Step 1 - log in
    Step 2 - click on the "settings" link
    Step 3 - click on the "edit ignore list" link on the left side of the screen
    Step 4 - type (or paste if you copied and pasted it) the username of the person you want to ignore
    Step 5 - click the "ok" button on the right of the screen

    Easy peasy and will lower your blood pressure. One important note though, this won't hide quoted posts. It's an oversight on the developers part and it's not an easy thing to "fix." So if someone quotes someone you have ignored, you'll see the quote.

    Alternatively when you click on a person's name and view their profile page, underneath their avatar, there is a option that says, "Ignore this person". Click that link and then click the yes button.

  5. #5
    Distinguished Community Member Beader's Avatar
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    Dear Mike,

    How do I drum up support for a posting area that doesn't exist? If new posters drop in, they have nowhere to go... They'll just leave, disappointed, wondering why such a complex and poorly understood syndrome isn't represented on BT, what with its components reaching over mitochondrial problems, neurocognitive, muscular, joint, lymphatic, oxygen intake and usage, heart, central nervous system, and chronic pain, to name a few.

    In the meantime, I have more news about CFS and don't know where to post it. Today, the British Journal of Psychiatry came out with a study linking CFS to childhood abuse, BUT I don't have a subscription to that scholarly journal and therefore do not have access to this article. Aaah, frustration. :ambivalence:

    Please advise. Thanks.
    Sher
    My Life Menu: CFS probably since birth, full flavored since the 80s, with Fibromyalgia, Major Depression with a side order of Anxiety and Agoraphobia sauce, Restless Leg Syndrome with spicy Other Sleep Disorders, 11 Eye Surgeries, a generous helping of Gut Problems

  6. #6
    Community Member Deedeelyn's Avatar
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    Sher,

    I hope you find a place to put all your information about CFS. I also live with CFS and am very interested in what info you have.

    Deedeelyn

  7. #7
    Administrator/SYSOP Mike Weins's Avatar
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    Hi Sher

    You can post the information in our General Neurology & Rare Disorders form. http://www.braintalkcommunities.org/...Rare-Disorders

    To drum up support you can create a poll here in forum feedback and ask others to come vote.
    Question: Why can't I post links or pictures?
    Question: Why can't I have a signature, avatar, or profile picture?
    Question: What's wrong with my account?

    Answer: You are in the "registered users" user group. This group is very limited in what it can do. This will annoy spammers to no end Just keep posting once you have been registered for 30 days and have made 11 posts your account will be "unlocked".

    It's really easy to put someone on ignore and it's strongly recommended that you do so with people who's posts you don't like.

    Step 1 - log in
    Step 2 - click on the "settings" link
    Step 3 - click on the "edit ignore list" link on the left side of the screen
    Step 4 - type (or paste if you copied and pasted it) the username of the person you want to ignore
    Step 5 - click the "ok" button on the right of the screen

    Easy peasy and will lower your blood pressure. One important note though, this won't hide quoted posts. It's an oversight on the developers part and it's not an easy thing to "fix." So if someone quotes someone you have ignored, you'll see the quote.

    Alternatively when you click on a person's name and view their profile page, underneath their avatar, there is a option that says, "Ignore this person". Click that link and then click the yes button.

  8. #8
    Distinguished Community Member Beader's Avatar
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    Unhappy HELP, Please...

    Thanks, Mikey.

    Creating a poll is something far beyond my limited computer capabilities. I haven't seen one here and I don't know what it looks like or how it works. Do I sprinkle something with magic fairy dust? Does it involve Columns and Tables? :ambivalence: Or do people just respond in normal posting fashion to a question I pose? Honestly, I have no idea. Notice that I do not have an avatar yet, due to not having mad skill sets. My first computer had two [2] 8" floppy drives, no hard drive, and was used strictly for data entry. It was the size of an incubator with several large baked hams stacked on top. Plus it was in TRS-DOS, which really came in handy later.

    I can actually thread 2" video tape reel to reel and hand splice audio tape. In other words, I'm older than dirt and just as crotchedy. I came along not long after The Wheel.

    Please HELP! :angel: Thank you in advance. Honestly, I'm not trying to be a PITA, I just have my dis-abilities...
    Sher
    My Life Menu: CFS probably since birth, full flavored since the 80s, with Fibromyalgia, Major Depression with a side order of Anxiety and Agoraphobia sauce, Restless Leg Syndrome with spicy Other Sleep Disorders, 11 Eye Surgeries, a generous helping of Gut Problems

  9. #9
    Administrator/SYSOP Mike Weins's Avatar
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    Hi Sher ;)

    Start a new thread like normal, and in the message box type a description of the poll (IE I'm creating a poll to see if there are others out there who would like to see a CFS forum on BrainTalk?) and maybe explain a little what CFS is a little bit.

    Then scroll down the page and you'll see "post a poll". Click the box so it's checked, change the number of options to 2 (yes and no) and for the poll question use something like, Do you think BT should have a CFS forum?

    Then click submit :)
    Question: Why can't I post links or pictures?
    Question: Why can't I have a signature, avatar, or profile picture?
    Question: What's wrong with my account?

    Answer: You are in the "registered users" user group. This group is very limited in what it can do. This will annoy spammers to no end Just keep posting once you have been registered for 30 days and have made 11 posts your account will be "unlocked".

    It's really easy to put someone on ignore and it's strongly recommended that you do so with people who's posts you don't like.

    Step 1 - log in
    Step 2 - click on the "settings" link
    Step 3 - click on the "edit ignore list" link on the left side of the screen
    Step 4 - type (or paste if you copied and pasted it) the username of the person you want to ignore
    Step 5 - click the "ok" button on the right of the screen

    Easy peasy and will lower your blood pressure. One important note though, this won't hide quoted posts. It's an oversight on the developers part and it's not an easy thing to "fix." So if someone quotes someone you have ignored, you'll see the quote.

    Alternatively when you click on a person's name and view their profile page, underneath their avatar, there is a option that says, "Ignore this person". Click that link and then click the yes button.

  10. #10
    Distinguished Community Member Beader's Avatar
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    Mar 2008
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    Hi Mike

    Do I make the poll here in Forum Feedback or in Rare Disorders?

    Thanks for all your help.
    Sher
    My Life Menu: CFS probably since birth, full flavored since the 80s, with Fibromyalgia, Major Depression with a side order of Anxiety and Agoraphobia sauce, Restless Leg Syndrome with spicy Other Sleep Disorders, 11 Eye Surgeries, a generous helping of Gut Problems

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