February 17, 2007
PWMS chat ! - Update:
Chat is the best, LOL! It has been so nice. We have been getting new chatters weekly. That is because we have help.
We want to thank Norma - she has coordinated chats very well. Norma has also taken on a lot of hosting duties.
We also thank Marlene and Jack - they are giving Red and I Monday nights off. Norma and Rod take care of Friday nights. Red and I have not had 2 nights a week together for a very long time,
LOL. It's very nice. Thank you all very much.
Phil NE and Kathie have started Friday mid-day/afternoon chats one day a week. Vanessa and Cindy are doing the same!
We can't forget Ron B - he is in chat waiting for that person to come in that needs some one to talk to. We want to thank you, Ron B, you're a sweetheart and help when ever we need you.
Jeff is doing some important future chat access research for us. He has Vista loaded now on his computer and is finding out all the security barriers that may give people trouble getting into chat. The hard way. He is working on it now, to keep one step ahead of any changes that may affect chat for us. Thanks, Jeff, we look forward to finding out what we can do to make things ok.
We are all waiting for Fancy Nancy to come back. Her computer is sick :( Hurry, Nancy, we miss you xxxooo.
PWMS welcomes our new Chat Coordinator!
PWMS welcomes Norma as our new Chat Coordinator! She has worked so very hard helping us coordinate chat hosting. She is online more than any of us. Please give her any changes you may have on your hosting. Let's try to make it has simple as we can. If you want to add your name to the weekly scheduled hosting, please tell Norma and she will let you know what is available. Norma is a very motivated lady, so please don't wear her down with tons of changes! We need her. I am sure she would love to fill up the whole day with names of chatters who will host, help her out. Norma also will guide you to the chat page for information on hosting if you wish to do so.
About Chats . . .
Some of our Chatters are working really hard hosting chats. It is so nice to have someone in the room when we need to talk. Check the hosting schedule below. Come in and say "Hi, Glad you're here." (see our chat schedule below ) We like to have what we call buddy hosting. 2 hosts at a time. You ask why? This way no one is alone waiting, just in case everyone else is busy that day.
Chat Etiquette Reminder
Please make a point to welcome any new chatter that comes in our room. Introduce yourself. Ask if there is anything special they want to ask about, know about. Don't ignore the new chatter. Offer them coffee and a muffin. Make them feel at home. Don't keep chattering about peripheral MS stuff with others, or off-topic stuff.
Just keep in mind the one rule we have: nobody gets to play Doctor in chat. What we mean by that is; don't go diagnosing chatters ailments or recommending medications. Share your experiences, and what any of the drugs have done for you. Don't encourage the idea that any medication is a miracle cure. Or dismiss any, or all, medicines as doing nothing. Even the well known medications have a wide range of effectiveness. The effectiveness of non-traditional and alternative medicines is even less certain. So talk about your experiences, factual studies and medical trials. Offer your opinions with care, and never recommend. Third hand medical testimonials from a friend of your auto mechanic's wife aren't welcome, unless they are really funny.
Also keep in mind that Laws and Health Care options also vary widely both within countries and across the globe. So be sensitive to the personal situations and tribulations chatters face. Don't rub in how great things are for you.
Stories and Pictures
Welcome back, Tina!
We look forward to your updated story !
|IceBaby|| Story to follow . . .
Meanwhile, read her Poem, Find Me
This could be you
|Your name, story, and
photo in the spotlight, right
here in our newsletter. Just send it along to: PWMS@PeopleWithMS.com
People like to read other stories about MS and dealing with the everyday life with MS. Everyone's M.S. is different and everyone's story is different. Get to know the chatters we chat with.
NEW BIRTHDAY PAGE
* * * We need someone to keep track of our chatters Birthday's. *
FAMOUS PEOPLE WITH MS PAGE
We're making up a new Famous People Page and we need your input . . . .
So far, we have some semi-famous people. Not really a lot, and not really terrifically famous. Kind of a sad excuse for a list. You're sure to know the name of one or more people that are way more famous. Send us the name of any well known person with MS, and perhaps a one liner about them (like 'World Renowned Chia Psychologist ' ) PWMS@PeopleWithMS.com
CLICK HEREFAMOUS PEOPLE WITH MS PAGE CLICK HERE
PWMS Welcomes . . .
Any chatters touched by M.S. What this means is anyone with M.S., a family member of anyone with M.S., or simply a friend who wants to understand M.S.
And please, anytime you come in chat and the conversation is not MS related, just pipe up with your MS question, issue, or problem. MS is our # 1 topic in chat. Most everything else is just background information on what and how people are doing, etc.
We have chatters who are on Avonex, Beta, Rebif, Copaxone, and Tysabri. And myriad other medicines to address various symptoms. So if you have any questions on any of these drugs ask away. Keep in mind everyone is different. Different drugs affect everyone differently. It is very frustrating to all of us but that's the way it is.
LDN - Vanessa has battled with different MS meds for many years. She has not found any that had any positive effects without leaving her with some very bad reactions. LDN has helped a lot with her symptoms. Vanessa is in chat mostly every night with us. I am sure she would share with anyone who has any interest in LDN.
My name is Judy. I have a much longer story to tell you but this is just a short version. I am 49 years old, married 30 years, 2 boys, 30 and 26, 2 grandsons, 7 and 3 1/2. My husbands name is Reed and he is also my best friend. I have had MS for 13 years and have been on betaseron for a little over 10 years now and I am doing great. I have been through hell and back but with the support of my family and my positive thinking, no one can tell I have MS. I refuse to let this monster get me and I know most of you feel the same way I do. We are all in this till the end...So lets keep smiling. (more)
Our Wednesday evening Healthy eating support group has started out so well that we added 3 pages to our web site, and more to the pages. You can find a print out journal, recipes, and check out the exercise page.
We will meet every Wednesday evening - check below for your local time
Chat Hosting Schedule
Please feel free to give us some ideas for chat. Hey, you can even take charge! Do your own weekly, or whenever, chat. Just invite your friends in, have a party. We have many rooms you can have your chat in your own room.
The schedule below shows the schedule of a group of regular chatters who are volunteering a couple of hours of their time to host chat on a regular basis. This makes a chat more successful; people knowing there is someone available to provide support at dependable, specific times.
|Chat Schedule - February 12, 2007|
|Monday||RonB & Norma||4 -6 pm||11 am - 1 pm||10 - NOON||9 - 11 am||8 - 10 am|
|Monday|| Marlene & JackIL
||1 - 3 am||8 - 10 pm||7 -9 pm||6 -8 pm||5 - 7 pm|
|Tuesday||Norma & Blak||4 -6 pm||11 am - 1 pm||10 - NOON||9 - 11 am||8 - 10 am|
|Tuesday||Cindy & Vanessa||6 -8 pm||1 - 3 pm||NOON - 2 pm||11 am - 1 pm||10 am - NOON|
|Tuesday||Deb & MrRED||1 - 3 am||8 - 10 pm||7 -9 pm||6 -8 pm||5 - 7 pm|
|Wednesday||Marlene (aka LadyCove) & Nancy||4 -6 pm||11 am - 1 pm||10 - NOON||9 - 11 am||8 - 10 am|
|Wednesday||Deb & MrRED||1 - 3 am||8 - 10 pm||7 -9 pm||6 -8 pm||5 - 7 pm|
|Thursday||Tara & Norma||4 -6 pm||11 am - 1 pm||10 - NOON||9 - 11 am||8 - 10 am|
|Thursday||Deb & MrRED||1 - 3 am||8 - 10 pm||7 -9 pm||6 -8 pm||5 - 7 pm|
|Friday||RonB & Norma||4 -6 pm||11 am - 1 pm||10 - NOON||9 - 11 am||8 - 10 am|
|Friday||PhilNE & Kathie||6 -8 pm||1 - 3 pm||NOON - 2 pm||11 am - 1 pm||10 am - NOON|
|Friday||Norma & Rod||1 - 3 am||8 - 10 pm||7 -9 pm||6 -8 pm||5 - 7 pm|
|Saturday||Deb & MrRED||1 - 3 am||8 - 10 pm||7 -9 pm||6 -8 pm||5 - 7 pm|
|Sunday||Deb & MrRED||1 - 3 am||8 - 10 pm||7 -9 pm||6 -8 pm||5 - 7 pm|
Note to New Visitors:
When a scheduled host is logged in, say Hi and hang around a couple of minutes if the room isn't busy -> they're probably just grabbing a cup of coffee or reading e-mail in another window.
When nobody is scheduled to host, take a look on the right side for any other names. If so, say ' Hi' and type their name just as you see it => that'll 'beep ' on their speakers.
Check the 'Connections' Room to see if anyone has stopped by, left a message, and is coming back soon.
Contact us at PWMS@PeopleWithMS.com if you;d like to host on a regular basis.
MS BRACELETS OF HOPE
One of our chatters is making MS Bracelets of Hope. She is selling them and donating part of the proceeds to the MS Society. I have to say, they are the very best I have ever seen. Excellent quality sterling silver with Swarovski crystals. The Women's one is shown to the left. The Men's one is sterling silver with wooden beads. She has started a web site http://www.freewebs.com/msthings/ If her web site is down you can email her at email@example.com
PWMS Welcomes MSer's from all over
|Wayno will be returning from his exotic cruise in the South Pacific this week. He ought to have some great sea and sand stories to share over the next few nights. And perhaps a few pictures.|
|We have also posted our first online edition of Kanga's Australian Newsletter, Mentioning Stuff. Thank you so much for your hard work. It's a great Newsletter Kanga! You will all be seeing Kanga more in chat. You can read it here http://PeopleWithMS.com/OZ/|
|This is the week we're expecting to start on the OzLinks page. So if you have any favorite links to resources, now's the time to mention it. . . Post us at PWMS@PeopleWithMS.com|
We have no contacts with anyone in Canada for information on an existing weekly or monthly MS newsletter. Please help us out if you have any leads to information on a Newsletter and how to get it. If there isn't one, maybe you could lend a hand on starting one. Or by adding some information to help us build up the Canadian portion of the web site.
COME ON CANADA - HELP US OUT HERE!
We're starting a new set of inspirational pages called thePoetry Pages
We received a new poem " Find Me ' this week from a new chatter, IceBaby check it out!!!
Thinking out loud" comments she wrote a few years back. Thinking out Loud!
Please Email us with any poems you would like to share with us PWMS@peoplewithms.com
|Check out all of the recipes on our web site that chatters have shared with us|
Please Email us with any recipes you would like to share with us PWMS@peoplewithms.com
Our objective is to provide an informal, supportive site for people seeking on-line information about Multiple Sclerosis. We aren't doctors, we aren't experts. We just live it everyday. We formed this site to share what we have learned, provide a focal point for exchange of information, and give back to the community.
Support is a very big word when it comes to MS. Doctors can only tell you so much during an office visit. Leaving unanswered questions, concerns and issues. People with any disease can often learn best from each other. To this end we provide a chat forum to share information and suggestions, posting of the latest news, and links to authoritative sources of information.
There are many informative sites out there. Visit them all! You can never have enough information. We do not intend to compete with any other sites. Like coffee shops, each has it's own unique atmosphere and clientele. There can never be enough of them.
Our chat is open for anything that has to do with MS. Some topics are not pleasant. But need to be talked about. If you have a problem, no matter what it is, chances are there is someone in chat that can help you. The one thing that PWMS will not accept is being laughed at for any MS problem. We expect all chatters to be considerate of others.
We have appointed Norma, Marlene, JeffS and JackIL room administrators. They have been using the chat. They walked through the set up with us. They can help you if you need help.
This just popped up over on Accelerated Cure's MSNews page . . .
Here is a story I ( Christopher ) ran into recently (strange that it wasn't more newsworthy), about a company improving on Copaxone. Supposedly it will work more efficiently and only be needed to be injected subcutaneously only once a week--eliminating the other six injections (yea!). Abstract from ECTRIMS 2006 below...
B. Carrillo-Rivas, J.T. Kovalchin, J. Krieger, M. Augustyniak, I. Dufour, K. Johnson, H.M. Genova, K. Rafuse, A. Ward, S. Baldwin, R. Kolbeck, J-C. Gutierrez-Ramos, E. Zanelli (Cambridge, USA)
Years of clinical experience have shown that daily subcutaneous administration of the peptide copolymer Copaxone™ (Cop-1), a mixture of millions of peptides composed of the four amino acids YEAK in random order, is a safe and efficacious treatment for relapsing-remitting multiple sclerosis (RR-MS).
Cop-1 was modeled to mimic myelin basic protein (MBP) and turned out to ameliorate experimental autoimmune encephalomyelitis (EAE) in mice, most likely by shifting the immune response away from an effector TH1 to an immunoregulatory TH2/TH3 immune response through presentation by MHC class II molecules.
Recently, a series of new peptide copolymers have been synthesized with the goal to improve the in vivo efficacy of Cop-1. In the present study, we show that Copolymer PI-2301 produced by substituting E with F has improved beneficial effects in a relapsing-remitting murine model of EAE.
Unlike Cop-1, PI-2301 shows long-term therapeutic efficacy when administered either daily or weekly at disease onset. In an adoptive EAE setting, efficacy of PI-2301 administered daily at the time of autoreactive lymph node cell transfer correlates with decreased serum level of Metalloproteinase-9 and increased level of Metalloproteinase Inhibitor-1.
Antibody production against PI-2301 and T-cell recall proliferation assay using splenocytes from PI-2301-treated mice underscore the induction of a TH2/TH3 immunity. Evidences of the expansion of T-cells with regulatory properties expressing Forkhead box protein P3 (FoxP3) and producing Interleukin-10 following PI-2301 treatment are also apparent.
We propose that PI-2301 is a potential novel immunomodulatory compound for the treatment of RR-MS. Clinical trials will soon be started to test this hypothesis.
Also, here's a link to the company developing the drug. Interestingly though, it isn't Teva pharmaceuticals.
|The results from a large-scale trial to evaluate whether glatiramer acetate (GA) (a.k.a. Copaxone) can slow progression in PPMS are in, and unfortunately for people with PPMS, this trial did not produce strong evidence that GA is effective against the disease. People who received GA did have slower progression than those on the placebo, but this difference was not statistically significant. One aspect of the trial that may have affected the outcome was that the participants progressed more slowly on average than expected, which made it more difficult to demonstrate any effect of the drug. On the plus side, that means that people with PPMS may have a less severe course than the experts who designed the study originally thought. Also on the plus side, the drug did show a significant benefit in terms of MRI measurements, and it also seemed to slow progression in males who received the drug compared with males on placebo. So perhaps the use of GA in PPMS is worth some further study.|
The Multiple Sclerosis Association of America (MSAA) has produced a monograph titled, Thinking about Complementary and Alternative Medicine? The monograph provides an introduction for people with multiple sclerosis (MS) on how to find and evaluate claims about complementary and alternative medicine (CAM). This is the first of two monographs MSAA is publishing through a grant from Berlex. You can get a PDF version here or see an HTML version here.
Details and a press release at ldners.org
National MS Society
Raises Concerns that Recent NIH Study Underestimates Number of People with
MS in the U.S.
An article released in the January 30, 2007 issue of the journal Neurology reviews previously published estimates of the numbers of people affected by various neurological disorders including multiple sclerosis. Lead author Deborah Hirtz, MD, and coauthors, from the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention, estimate that the annual incidence of MS in the United States (new cases diagnosed during a 12-month period) was approximately 4.2 new cases per 100,000 population in 2005. They also estimate that the total number of people with MS (prevalence) in the U.S. in 2005 was approximately 266,000, and that the prevalence rate (90 cases per 100,000 population) was 50% higher than an estimate published 25 years ago. However, this prevalence rate of 90 per 100,000 is actually lower than a figure also published by the NIH in an article appearing in 1992 (Annals of Neurology 1992 Mar;31(3):333-6).
study estimated that the total number of people with MS in the U.S. was
approximately 300,000. Based on that 1992 study the Society estimates
the prevalence of MS to be about 135 per 100,000 population in the U.S.
at the present time, for a total MS population of approximately
400,000. The Society arrived at this figure by using the same
age-specific prevalence rates used in the 1992 article, adjusting for
population growth and population shifts in the U.S.
Montel Williams is promoting the new prescription program
" Partnership for Prescription Assistance " :
call 1-888-477-2669 / 1-888-4PPA-NOW
There are over 150 different programs that can help you get your meds for free, or at a low cost. Check it out ! ! !
We also have some links up on our web site that may help. Check it outPatient Assistance Programs
If anyone has anything they think ought to be added to the weekly news letter, please email me at firstname.lastname@example.org.