Tuesday, November 27, 2012

A Thousand Things | No Poster Girl

 
 
I spent more than a year like this, from Christmas of 2007 to the spring of 2009, and there are many, many ME/CFS patients in that state. These days, I do more things before breakfast than I was able to do in a week back then, and basically each of them are things I was completely unable to do then at all.
 
 
* * *
 
BTDT.  I've spent a lot of years in bed, unable to do much more than breathe.
 
The person I am now in 2012 is definitely not the person I was in 1982, when I was perfectly healthy, nor the person I was in 2002, when I was on the verge of death from medical neglect.  The people who saw me in those years would never recognize the person I am this year.
 
I'm doing a lot more than I was in 2002, but it's still not what a healthy person can do in a day.  Nonetheless, I'm no longer counting the energy expenditure of every minimal movement.  Walking to the front door to bring in the newspaper does not require a two-hour nap before I can muster the mental energy to read the paper.
 
Those who criticize my housekeeping don't understand that cleaning up after the cleaners is what landed me in bed in the first place.  I finally realized that muddling through on my own -- where I'm not wasting energy looking for things that were hidden in unmarked boxes -- is more efficient, and a heckuva lot cheaper than spending $600 a month on cleaners who don't actually clean, plus whatever incidental costs for things like late fees on bills they threw away before I paid them or checks that I couldn't cash because I couldn't find them. 
 
 

Monday, November 26, 2012

Tips for Talking with your Partner about IBD

Can Hemispherx's Ampligen See Happy Ending To Long Fatiguing Wait?

Can Hemispherx's Ampligen See Happy Ending To Long Fatiguing Wait?

11/26/2012 2:49 AM ET

In less than a month, Hemispherx Biopharma Inc. will face an FDA advisory
panel that will review its lead compound Ampligen for the proposed
treatment of chronic fatigue syndrome or CFS.

Ampligen, co-invented by Hemispherx's CEO William Carter, has been under
development since the 1970s.

The new drug application for Ampligen as a treatment for chronic fatigue
syndrome was filed by the company in October 2007 based on results from
four well-controlled trials with over 1,200 trial subjects and 90,000
doses. But the NDA was deemed to be insufficient to permit a review and was
sent back to the drawing board.

Addressing all the questions posed by the FDA concerning the Ampligen NDA,
the company filed its response in January of 2008. Convinced by the
company's reply, in July 2008, the regulatory agency accepted for review
the new drug application for Ampligen to treat CFS and was expected to
announce its decision by February 25, 2009.

Seeking additional time for a full review of the submission, the FDA
postponed the decision date by 3 months to May 25, 2009. However, the
decision was again deferred, and a complete response letter for Ampligen
NDA was issued in November 2009, requesting additional confirmatory phase
III study to support its approval.

Supported by supplemental clinical data analyses, in August of this year,
Hemispherx submitted its response to the Complete Response Letter for
Ampligen NDA. The resubmitted NDA has a decision date set for February 2,
2013.

Before the FDA makes its final decision, the Ampligen NDA is scheduled to
be reviewed by an FDA panel of outside experts on December 20, 2012.

Chronic fatigue syndrome is a condition in which patients have persistent
or relapsing fatigue. There is neither a known cause, nor an effective
treatment for CFS.

Besides CFS, Ampligen has also been tested in clinical trials as a
potential treatment of Hepatitis B, HIV and various cancers, earning it the
sobriquet "a drug in search of a disease. Carter also had plans to treat
tobacco with Ampligen and create a "healthy" cigarette.

The company has one FDA-approved product Alferon N Injection for refractory
or recurring genital warts. Commercial sales of Alferon N Injection were
halted in March 2008 when the company's finished goods inventory expired.
In a recent SEC filing the company has revealed that the production of new
Alferon drug product inventory will not commence until the capital
improvements and related validation phases at its New Brunswick
manufacturing facility are complete.

For more history:
http://www.rttnews.com/860979/the-long-wait-of-hemispherx-s-ampligen.aspx

Check out 9 Tips for MS Caregivers - CNN

 
Applicable to our CFS caregivers, too!

Sunday, November 25, 2012

Contest for $5,000 now more closely contested With just three days to go

Contest for $5,000 now more closely contested

With just three days to go, the contest in which the ME/CFS Community can
win the $5,000 Citgo award has gotten even closer.

The ME/CFS Community vote total has now reached 7,270. But, late surges from
others in the closing days of the contest have put the results up for grabs.


Please help the ME/CFS Community win this much needed award.

Voting takes less than a minute at:
http://www.fuelinggood.com/rewardinggood?id=1292947

Please vote today and keep voting daily until midnight on November 28th.

Please ask family and friends to vote as well.

Thank you.

Dan Moricoli

http://www.cfsknowledgecenter.com

http://www.me-cfscommunity.com

Practical Information and Community for those afflicted with ME/CFS and
Firbromyalgia