John, I think my request was missed - either that or you are very busy! ;)

Would you please put Congenital Myasthenic Syndromes and LEMS in the SAME category as Myasthenia Gravis? We all have similar issues and could use the support in one place.

Thank you.

Raechel
(CMS)

Would you please make a forum for Arthiritis Osteo/Rheumatoid as one category?

Could you also make a category for Dercum's Disease, and Madelung's Disease?

These are rare diseases, but I will announce at another board that they are listed here. I think when rare diseases are given more of a presence on the Internet medical researchers and physicians are more assertive in finding a way to help with dealing with these diseases, instead of just saying they are rare and ignoring it. I think too it gives others that may suffer in silence with these diseases, the opportunity to search the Internet and find others with the same symptoms and know they are not alone.

This has happened with Dercum's Disease and Familial Multiple Lipomatosis. A female physician at University of California is now researching and mapping these diseases.

an new point of view on an abuse forum
 

Quote:
Hi, Mister. Higher on the page, I gave a thumbs up to your idea .. but after I posted, I remembered and continued to think on how on Bipolar, discussions about our illnesses getting worse, the pressures our illness puts on our families, our job searches and firings, our spouses' being laid off, having to move to cheaper digs, our ill or disabled kids, our marriages and relationships in some sort of trouble. None of us would have even briefly considered going to a specific forum. We needed our friends, we needed those who understood the illnesses we suffered from, what our past history here.

And none of us would have considered cutting them off as off-topic, telling them to take this issue somewhere elsewhere. (tho I understand that not every forum, no matter how busy, will necessarily develop such a closely knit supportive and understanding family as you see at BP).

Another valid point, a lot of people, no matter how well educated, will recognize themselves as abused, or they may be in strong denial, see themselves as causing their own problems, or simply be too embarrassed to talk about these things in a totally open forum. And this includes men and women.

And, as another point to look at, I do know that many of specialty forums have ended up very quiet forums with little activity -- certainly not enough to ever develop its own supportive on-going community.

But MAYBE if there was a forum called Our Families in Crisis or something like that might more readily attract more users who CAN become a supportive community. And we have to remember that domestic abuse never occurs in isolation and I've mentioned many of those correllaries above.

Thoughts and feedback regarding this idea? A more encompassing concept?

Just thinking ...
Theresa

I'd like a Weight Gain Support area. I sure could use some tips atleast. I need around 20lbs or more (incase I lose again!). Not sure how common it is, I can't find local help since being skinny is a trend, they look at me like a weirdo if I say I want to GAIN weight.

:(

Ellie -

Great idea!!! I also need to GAIN about 20 pounds, and anytime I mention it to anyone they think I'm nuts. My doctor ans my husband and the only people who understand, the rest of the world doesn't understand the concept of needing to gain weight.

What if "Weight Loss Support" was changed to "Weight Support" or something like that ("healthy weight support" maybe?) so that those who need to drop weight can get support, and those that need to gain weight can also get support.

I would love to see a sub-forum of the "Health News Headlines" forum called "Health News Headlines Discussion".

Because there are so many threads in HNH and because they come in rather quickly, any replies to the threads themselves are quiclkly buried as new headlines come in.

That makes it hard to have discussions about things because of the sheer number of new threads that arrive in that forum on a daily basis and push the old threads to the bottom of the page or onto the next page.

So a sub-forum would allow members to be able to discuss the news items without having thier discussion buried by the incoming new threads/headlines.

DocJohn ... May I add to the list of requests? This is not a new forum, but another name second name now being used for CFIDS.
-- it is Myalgic Encephalomyelitis.
If you could add that to the area that describes the forum, it will help more people find us. - Thank you very much. -Theresa

- OneMoreTime

Eating disorders forum
 

Just noticed there isn't one.
Wanted somewhere to post about 'Thin-the documentary.'

''Thin is a photo essay and award-winning documentary by photographer Lauren Greenfield that charts the lives of patients at the Renfrew Center, a residential centre for the treatment of women with eating disorders.

Although the photo essay is available online, the full documentary is not. However, an extended preview of the documentary is available which is quite moving even in its abbreviated form, showing the emotional turmoil experienced by young women with anorexia and bulimia.''



http://www.mindhacks.com/blog/2006/1...documenta.html

Doc John,

I have a request as well. I would like to see Occipital Neuralgia added as well as Cervicogenic Headache. I realize they can go hand in hand somewhat. Since I suffered from this and still do from time to time, it is amazing how many people have asked me about these conditions. Thank you.