PeopleWithMS.com Newsletter

June 26, 2004


NewsFlash 

Medicare MS Rx Lottery  


PeopleWithMS Welcomes . . . . . 

Our very own Muff, finally with a picture to put beside the name !  See it here first !

Our own Jim has finally come up with a picture of himself and the elusive Barb we've heard so much about.  Visit Jim's page

Pinky, from Scotland, dropped in at 3am, her time!  She's 39, was DX'd eventually in 2002, but probably had MS since 1989.  Keep and eye out for her.

GrannyBJ, meanwhile, sent in photo's of her Alaska 7 day cruise along the coast.  Click here to check out her photo's.    

Rod, RRMS, from Florida, sent in a photo of himself and his granddaughter, Maddie.

Wayne, off to Sundance this week, sent in his photo as a virtual presence.  Check it out. . . 

Delbert has been a busy biker !  While we were snoozing, he passed through Iowa, Wisconsin, Illinois, and Indiana.  Heading for Michigan as you read this.  That's pouring it on !  Remember, WheelsofHope needs your support ! Track his progress across the 48 continental United States; http://www.wheelsofhope.net/  

Chats are most active every night starting around 7PM EST, and during the days around lunchtime EST.  However, feel free to drop by anytime, leave your window open for a bit, and somebody is sure to drop by.

Buddy Hosting

Special Notes:

Daytime Hosted Chat Schedule

Tuesday 2-4 pm  Dreamcicle
Wednesday 11-1 EST Lesley Anne
Friday 12-2 pm Dreamcicle

PeopleWithMS.com needs chat hosts ! ! ! Donate a couple hours during the day or evening to host, on a regular basis, and we'll make you famous !  Or any other time you'd like !   If your focus is a particular topic or aspect of MS, just let us know and we'll post that in the Newsletter, too.  

You can informally host anytime you want.  Just be there for someone new when they pop in.  


New Stories and Pictures

Dana

Hi, my name is Dana I was dx with rrms in 1997 and about a year or so later with epilesy as a result of my ms. I currenty take copaxone for my ms and carbatrol for epilesy and provigil for fatigue. My good friend Lesley Anne invited me to come to chat she is always looking out for me like I do with her. I enjoy talking to other with ms trying to help if I can and make some good friends (more )
Laura

Hi! My name is Laura and I have had MS for 10 years. I am 47-years-old and I live in the Upper Peninsula of Michigan. I have been married to Russ for 15 years, and between the two of us, we have three kids - my daughter Kara and son Cole and Russ' daughter Brooke. Kara is 26 and lives in Arlington, Texas; Brooke is 24 and lives in Madison, Wi; and Cole will be 20 soon and attends college about two hours from home. They are great kids and we are proud of them. (more)
Rod

Story to follow . . . for now, just a pic of Rod and granddaughter Maddie (more)
Wayne

Wayne is off to Sundance this week, but sent in his photo as a virtual presence.  Expect some interesting stories upon his return.  Check it out. . . (more )

Your name, story, and photo can be right here in the spotlight, in our weekly newsletter.  Just send it along to: PWMS@PeopleWithMS.com


New Link Sightings

(We are skipping the links in deference to expanded news coverage this week.)  

Every week we add new link sightings which may be of interest, as reported by our visitors.  This will highlight new links you may want to investigate, before they disappear into the obscurity of some huge link listing.  If you come across any site which you think may be of interest, please e-mail us PWMS@PeopleWithMS.com with the site address and a brief description of what you found interesting on the site.  We'll include it in the next Newsletter.


News Sightings

Here's the latest, and there's a bit.  To avoid future stack-ups, we'll be updating the News Page as news breaks.  So check it out !

Medicare Lottery - From the Front - Federal Update

National Multiple Sclerosis Society

PWMS 6/26/04

ACT NOW! HERE'S YOUR CHANCE TO GET MEDICARE COVERAGE FOR MS Rx RIGHT NOW!

YOU CAN'T WIN…IF YOU'RE NOT IN 

Implementation has now begun of the $500 million nationwide Medicare demonstration project covering certain therapies for 50,000 patients who have multiple sclerosis, cancer, rheumatoid arthritis and pulmonary hypertension. This is a good chance to obtain comprehensive Medicare coverage for any one of the four MS self-injected disease modifying therapies from September 2004 through December 2005 (until the overall Medicare prescription drug benefit begins in January 2006). For those selected to participate in the demonstration, Medicare will cover 75% of your MS drug costs – more for those with low incomes – and coverage will allow patients to inject their MS therapies at home.   Check this out right now!  They are accepting applications for a lottery type of process.  There is a "first cut" lottery filing deadline of August 16 and a runners-up second lottery closing September 30. 

Download the application:  http://www.cms.hhs.gov/forms/cms10113.pdf

Medicare to Pay for Some Cancer, Other Drugs

ABCNews

PWMS 6/25/04

WASHINGTON (Reuters) - The U.S. government will pay for some cancer, multiple sclerosis and other medicines for 50,000 Medicare patients who otherwise would not have coverage until 2006, health officials said on Thursday."    Check this out right now!  They are accepting applications for a lottery type of process until September 30. 

Hemispherx Biopharma Launches Multiple Sclerosis Salvage Program with Natural Interferons

ABCNews

JackIL 6/14/04

"Hemispherx Biopharma, Inc. announced today that it submitted to the FDA a new clinical Protocol entitled "A multi-center, open label, study of Alferon N Injection(R) in subjects with relapsing-remitting multiple sclerosis, who have discontinued interferon-beta therapy because of clinical progression or intolerance, or who have developed neutralizing antibodies to interferon-beta." . . . "A multi-center, open label, phase IIb clinical trial will determine the safety and efficacy of Alferon N Injection(R), a highly purified mixture of natural alpha interferons, in the treatment of multiple sclerosis (MS) patients who have discontinued their treatment of Avonex(R) or Rebif(R) or Betaseron(R) because of clinical progression or intolerance or neutralizing antibody formation. Specifically, the primary endpoint of the study will be annualized clinical relapse rate comparing baseline vs. week 48. Initially, fifty patients selected will be dosed with 5 million IU Alferon N Injection(R) every other day for a period of 48 weeks. "

Somewhere in the area of 30% of people on interferons will develop intolerance or neutralizing antibodies - so this is an important alternative.

Laquinimod Potential Oral Therapy for Multiple Sclerosis

BusinessWire

JackIL 6/14/04

"Teva Pharmaceutical Industries Ltd. and Active Biotech AB announced today that they have signed an agreement to develop and commercialize laquinimod. . . " "Active Biotech has successfully completed a Phase II trial and presented its results at the 2004 American Academy of Neurology (AAN) Annual Meeting held in San Francisco this past April. These results showed that oral laquinimod, in a dosage of 0.3 mg daily, is well tolerated and effective in suppressing the development of active lesions in relapsing MS. Teva intends to complete the clinical development program and will conduct Phase III studies.   An oral medicine?  Now that's a Phase III trial worth following! NB - Teva earlier shelved oral Copaxone because the cost-effectiveness (i.e., profit) wasn't there.  This seems to have passed the hurdle.

Top doc backs picking your nose and eating it

Ananova

JeffS 6/18/04
Picking your nose and eating it is one of the best ways to stay healthy, according to a top Austrian doctor. Innsbruck-based lung specialist Prof Dr Friedrich Bischinger said people who pick their noses with their fingers were healthy, happier and probably better in tune with their bodies. He says society should adopt a new approach to nose-picking and encourage children to take it up. Dr Bischinger said: "With the finger you can get to places you just can't reach with a handkerchief, keeping your nose far cleaner. "And eating the dry remains of what you pull out is a great way of strengthening the body's immune system.

This article really merits a full read, for all the juicy details. 

Agent Orange - Herbicide Exposure

US Veterans Administration

Dreamcicle 6/18/04

If you think (or know) you were exposed to Agent Orange, this is where to start.  New benefits have been granted to Vietnam Vets.   

ANTEGREN for Multiple Sclerosis Submitted to the European Medicines Agency for Approval

MedicalNewsToday

PWMS 6/12/04

"Biogen Idec and Elan Corporation, plc announced today that they have submitted a Marketing Authorisation Application (MAA) to the European Medicines Agency for approval of ANTEGREN(R) (natalizumab) as a treatment for multiple sclerosis (MS).

The submission includes one-year data from two ongoing Phase III trials. The companies are committed to completing these two-year trials. . . . Last month, Biogen Idec and Elan submitted a Biologics License Application (BLA) to the U.S. Food and Drug Administration (FDA) for the approval of natalizumab for MS.

I guess they're serious about Antegren !

So You Have MS...What's Next?

Boston Cure Project

PWMS 6/17/04

"A quickstart guide to what you'll need to know about when you or a loved one is diagnosed with MS. Based on the experiences of people with MS, it's a useful place to start your introduction to having MS. Written by a team of volunteers, staff, and advisors."   

The Boston Cure Project has just released this new introductory guide.  Take a look ! 

Low-dose naltrexone (LDN) as a treatment for multiple sclerosis

UK MS Society

UK MS Society 6/25/04

Should there be a trial of LDN in MS?

"There are some striking stories about the beneficial effects of LDN for a few people with multiple sclerosis. Unfortunately, experience has repeatedly shown anecdotal evidence to be an unreliable way of gauging the true effect of a new drug in MS. The best test for LDN would be a clinical trial. However, we understand the drug’s manufacturers are not prepared to undertake one, and few neurologists would wish to conduct a trial of a drug, which boosts the immune system, when immune cells are already overactive. An alternative would be for the advocates of LDN to set up a study and resource it. There are many bodies in the UK to which people can apply for funds for clinical trials, including the MS Society. The Society would be happy to advise on drafting a grant application."   

This is far more gracious than the recent joint statements from the US National MS Society and The Rocky Mountain Complementary and Alternative Medicine Center.  I may be reading into things, but it sure sounds to me like a more aggressive "Put up or shut up" response.  They even offer help with the application for a grant to fund a trial.  

Alzheimer's drugs a waste of money, says NHS study

The Guardian

PWMS 6/25/04

"The five-year study, paid for by the NHS (UK National Health Service) and not the drug companies, found that the drugs are a waste of the scarce resources available for the condition, said the lead researcher Roger Gray, director of Birmingham University's clinical trials unit."   . . . "Sadly, there are a lot of people with dementia and far too little money available to look after them," he said. "Doctors and healthcare funders need to question whether it would be better to invest in more doctors and nurses and better social support rather than spending huge sums of money prescribing these expensive drugs."

OK, let me get this straight.  MS drugs are a waste of money.  Alzheimer's drugs are a waste of money.  Best to ask the Doctors whether it would be better to spend more money on doctors and nurses.  Does this sound a bit wonky to anyone besides me ?

Results of Antegren trial for acute relapses

National Library of Medicine/PubMED

PWMS 6/22/04

"CONCLUSIONS: A single dose of IV natalizumab did not hasten clinical recovery after relapse, although a significant decrease in Gd-enhancing lesion volume was observed at 1 and 3 weeks after treatment. These MRI findings are consistent with prior studies of natalizumab and support its further investigation as an agent for the treatment of MS."   

In english, what this tortured medical abstract means is that Antegren will reduce the damage inflicted during a relapse, but won't help speeding the recovery.  So it won't cure you, or make you better faster, but maybe will prevent things getting as bad as they would without it.  


Recipes

We're starting a new section for recipes, since they are a popular chat subject.  This week, we're featuring a couple of Lesley Anne's favorites.  If you have a favorite you'd like to share, e-mail it to us;  PWMS@PeopleWithMS.com 

CRUSTY CHICKEN WINGS

12 ( about 1 kg. ) of chicken wings
3/4 cup of Kraft Creamy Italian Dressing
1/2 cup of grated Parmesan cheese
1/2 cup of fine dry bread crumbs

Cut chicken at the joints. Pour dressing  into a pie plate. Combine cheese and crumbs in another pie plate.  Dip chicken into the dressing, and then coat with crumb mixture. Place  in a single layer on a greased cookie sheet. Bake at 400 F for 20 to 25  minutes. Loosen chicken from the sheet. Serve warm with dip if  desired.

DIP #1

1 pouch of Great Beginnings Country 
Style Dressing or Dip Mix
1/2 cup of sour cream
1/2 cup of Miracle Whip Salad Dressing

Mix all together .

Dip# 2

1 cup of Miracle Whip Salad Dressing
1/4 cup of grated Parmesan cheese
1/4 cup of milk
1 tablespoon of fresh chopped chives

Mix all together

You can always double the recipe if you  want to. I always do..


TRIPLE CHOCOLATE CAKE

1 Duncan Hines Devil's Food cake
1(113 g) pkg. instant chocolate pudding
1 cup sour cream
1/2 cup vegetable oil or canola oil
1/2 cup water
4 eggs
1 (300g) pkg. Chipits, milk chocolate  chips, divided

FROSTING

2/3 cup reserved milk chocolate chips
1/3 cup sour cream

CAKE : combine all ingredients except the  chocolate chips in large mixing bowl. Blend, then beat 4 minutes at medium  speed on electric mixer, Reserve 2/3 cup of Chipits for frosting.  Stir remaining Chipits into the batter. Turn batter into a 12-cup bundt  pan, sprayed with Pam. BAKE at 350F for 50 to 60 minutes, or until a  toothpick inserted in centre comes out clean. Cool 10 minutes in pan, then  remove by turning out on wire rack to cool completely.


FROSTING: 

Melt reserved Chipits. Add sour  cream, stirring til smooth. Drizzle over cool cake.


New on the Website

* * * We Need Your Help * * *

Helping Chatters Get Into Chat

People continue to have difficulties getting into Dreamchat.  Tell us in detail what you have to do to a firewall, anti-virus program, or Pop-Up blocker program in order to get in.  If you had to upgrade your Windows or Internet Explorer Service Pack, tell us from what, to what.  We will start a page devoted to all the different problems people have had, and how they have overcome them, as a resource page for new chatters.

DreamChat Trivia (repeated by popular demand)

  • New to Dreamchat and wondering how to make those neat little smileys and pictures in the text? Easy, here's the Cheat Sheet:

:) Smile   :* Kiss
:( Sad >-- Rose
;) Wink <love> Love
;} Wry <strobe> Strobe
:p Tongue <nuke> Nuke
:o Gasp <boom> Boom
:# Mad <star> Star
  • How do I copy and paste something?  Mark it as you usually would with the mouse.  Then use CTRL-C to copy it, and CTRL-v to paste it in the message window.

  • I'm a member.  I uploaded my avatar, and nothing happened.  What's up with that?  Even if your avatar is the specified 50 * 50 pixels, and no bigger than 15KB, there is no confirmation.  Apparently because DreamChat personnel review all permanent member's avatars to make sure they are acceptable.  (Whatever that means.)  If they are, they send back an approval in a day or so, and the next time you sign in, "poof" your new avatar appears.

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News Letter Archive

Missed something from an old Newsletter?  Find it here !

6-26-04 6-11-04
5-31-04 5-21-04 5-15-04 5-7-04
5-1-04 4-23-04 4-16-04 4-10-04
4-2-04 3-27-04 3-20-04 3-13-04
3-6-04 2-28-04 2-21-04 2-14-04
2-07-04 1-31-04 1-24-04 1-17-04

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