Saturday, August 4, 2012
The Angel Connection: Navigating Illness with Compassion
Friday, August 3, 2012
Occupy CFS » Passing of Dr. William Reeves
After the Lombardi et al. paper was published in Science in October 2009, Dr. Reeves told the New York Times that he did not expect the findings to be validated. To advocates, CFSAC members and others, this was a prejudiced statement, reflecting Dr. Reeves' apparent bias is favor of psychosocial explanations for CFS. With no explanation and little fanfare, Dr. Reeves was removed from his post as head of the CFS program in early 2010.
Dr. Reeves
Thursday, August 2, 2012
Senators Stand Up for ME/CFS - Support Push For FDA Stakeholder Meeting
Phoenix Rising
Thanks to Senator Robert Casey (PA) and his colleagues Senator Richard
Blumenthal (CT) and Senator Kay Hagan (NC)
At the end of June, Senators Casey, Blumenthal and Hagan sent a letter
to Secretary of Health Kathleen Sebelius requesting the FDA hold a
stakeholders meeting on chronic fatigue syndrome. All three Senators
serve on the Committee on Health, Education, Labor and Pensions which
oversees the FDA. The letter stated
"CFS/ME represents a significant unmet medical need, one that confers
on patients a lifetime of illness. A stakeholder meeting would be of
great benefit, as it would offer an opportunity to examine existing
treatment protocols known to FDA, address how risk/benefit
determinations should be made in relation to CFS/ME treatments and
identify a path forward for regulatory science in this area."
Thanks again to the patient community for your emails and some brave
folks who met with numerous Congressional offices in Washington DC -
our voices have been heard. As you know, Dr. Janet Woodcock, head of
the Center for Drug Evaluation and Research, has committed to the
stakeholder meeting for ME/CFS.
We are grateful to these Senators for realizing our plight and
choosing to engage our health officials in finding solutions.
Thank yous can be sent to:
Senator Robert Casey
http://www.casey.senate.gov/contact/
Senator Richard Blumenthal
https://www.blumenthal.senate.gov/contact/
Senator Kay Hagan
http://www.hagan.senate.gov/contact/
As of August 01, 2012 there are 537 electronic contact addresses (of
which 534 are Web-based contact forms), and 537 home pages known for
the 540 members of the 112th Congress. Contact information for other
congressional leaders can be found here:
http://www.contactingthecongress.org/
Wednesday, August 1, 2012
Newly Diagnosed with ME/CFS? Four Things Not to Learn the Hard way
You're too Young to Be That Sick, and Other Misconceptions
- Lisa Copen
Walking the Line with Chronic Illness: It's a Jungle Out There
Outrunning Your Shadow - The Curse of the Pre-existing Condition
According to a Kaiser Family Foundation report, 21% of health insurance applicants with pre-existing conditions either get turned down, charged increased premiums, or receive coverage exclusions pertaining to their ailment. And roughly 129 million Americans under age 65 currently have proclaimed pre-existing health conditions.
http://www.prohealth.com/library/showarticle.cfm?libid=17126
Tuesday, July 31, 2012
Junkland: 8 Myths About "Welfare Queens", Debunked
Monday, July 30, 2012
Why polio hasn't gone away yet - CNN.com
Human beings have been living with polio for thousands of years, Cochi said. There's evidence from ancient Egypt that paralytic polio existed there and even infected royalty. But it wasn't described clinically until 1789.
Polio primarily spreads from person to person -- through coughing and sneezing -- or through fecal contamination. The particles are large enough that the risk of contracting polio in the air is momentary, and on a surface like a desk or a chair, it can last an hour or two. But in sewage, it can last for weeks or even months.
* * *
Workshop on Overlapping Pain Conditions
Chronic overlapping pain conditions represent a complex set of painful disorders that occur frequently in the population, lack a mechanistic understanding, and are in need of hypothesis-driven research efforts. This workshop will bring together researchers with expertise in various pain conditions and other expertise to discuss these conditions and to develop a forward-thinking research agenda. The workshop will focus on our current understanding of chronic overlapping pain conditions, their etiology, risk factors, mechanisms of disease, outcome measures, and diagnosis. It will be a two-day meeting with short presentations by panelists and extensive discussion periods. The workshop will be co-chaired by Daniel Clauw from the University of Michigan and Elizabeth Unger from the Centers for Disease Control and Prevention.
The goal of the workshop is to develop a coordinated research strategy that addresses underlying etiology; the trajectory of disease; risk factors for onset, progression and reversal; and approaches for developing outcome measures and diagnosis of these conditions.
The meeting is open to the research community and free registration will occur on Monday morning at the door beginning at 8:00 am. The workshop will start at 8:30 am. An agenda is attached.
For further information contact: John Kusiak at kusiakj@mail.nih.gov or at 301-594-7984.
A Workshop on
Chronic Overlapping Pain Conditions
August 13-14, 2012
Natcher Conference Center, Building 45
National Institutes of Health
Bethesda, Maryland
Day One
Monday, August 13, 2012
8:30 am Introductions and Welcome
John Kusiak, Program Officer, NIDCR
Story Landis, Director, NINDS
Martha Somerman, Director, NIDCR
Workshop Co-chairs: Dan Clauw, Univ. of Michigan and Beth Unger, CDC
Guidance to the Workshop Members
Session 1: Overview and Epidemiology of Chronic Overlapping Pain Conditions
9:00 - 9:30 am Overview of the meeting and chronic overlapping pain conditions
Dan Clauw, Univ. of Michigan
9:30 – 9:40 am Discussion
9:40 – 10:00 am Epidemiology of vulvodynia and overlapping conditions
Barbara Reed, Univ. of Michigan
10:00 – 10:10 am Discussion
10:10 – 10:30 am Epidemiologic approaches to pain progression: Lessons from migraine
Richard Lipton, Albert Einstein College of Medicine
10:30 – 10:40 am Discussion
10:40 – 11:00 am Coffee Break
11:00 – 11:20 am Overlapping pain conditions: Disparities and special populations
Carmen Green, Univ. of Michigan
11:20 – 11:30 am Discussion
11:30 – 11:50am The presence of multiple functional somatic syndromes may be a marker for a common pathogenesis
John Warren, Univ. of Maryland Medical School
11:50 – 12:00pm Discussion
12:00 – 12:30pm General Discussion
12:30 – 1:30 pm Lunch (on your own)
Session 2: Risk Factors and Mechanisms of Disease
1:30 – 1:50 pm Phenotypes/genotypes in common and specific to chronic overlapping pain conditions
Bill Maixner, Univ. of North Carolina
1:50 – 2:00 pm Discussion
2:00 – 2:20 pm Understanding chronic overlapping pain conditions: Lessons learned from twin studies
Niloofar Afari, Univ. of California San Diego
2:20 – 2:30 pm Discussion
2:30 – 2:50 pm Role of quantitative sensory testing in determining mechanisms of overlapping conditions
Eli Eliav, Univ. of Medicine and Dentistry of New Jersey
2:50 – 3:00 pm Discussion
3:00 – 3:20 pm What has the CDC's ME/CFS program taught us about overlapping conditions?
Beth Unger, CDC
3:20 – 3:30 pm Discussion
3:30 – 4:00 pm General Discussion
4:00 – 4:15 pm Break
4:15 pm Patient/Advocate Forum:
Terrie Cowley, The TMJ Association
Kim McCleary, The CFIDS Association of America
William Norton, International Foundation for Functional Gastrointestinal Disorders
Christin Veasley, National Vulvodynia Association
4:45 pm Summary and Adjourn for the day
Day Two
Tuesday, August 14, 2012
Session 3: Current and Future Research Issues
8:30 – 8:50 am Patient reported outcomes: Which are most critical? Are new ones needed?
David Williams, Univ. of Michigan
8:50 – 9:00 am Discussion
9:00 – 9:20 am What can we learn from the study of other complex disorders using a systems biology approach (cardiovascular and autonomic nervous systems)?
Daniel Beard, Medical College of Wisconsin
9:20 – 9:30 am Discussion
9:30 – 9:50 am Large scale pain neuroimaging using the PAIN.LONI repository
Bruce Naliboff, Univ. of California Los Angeles
9:50 – 10:00 am Discussion
10:00 – 10:30 am General Discussion
10:30 – 10:45 Coffee Break
Session 4: Breakout Groups
10:45 am Guidance to the Breakout Groups
Co-chairs: Dan Clauw and Beth Unger
10:50 – 12:00 pm Breakout Groups Meet
Room D: Approaches to standardize patient classification
Room B: Common mechanisms of disease
Room C1: Risk factors for trajectory of disease
Room C2: Development of research diagnostics and outcomes measures
Topics to be discussed by each group:
Identify challenges/opportunities to advancing each area
Identify new knowledge needed to go forward with each area
How to develop a consensus approach
What is feasible in 5 years/10 years?
How to advance training and workforce growth in each area
12:00 – 1:00 pm Lunch
1:00 -2:00 pm Individual Reports from Breakout Groups
2:00 – 3:30 pm Develop a consensus set of research recommendations addressing the 5 discussion topics
3:30 pm Wrap-up and Closing Comments
John Kusiak, NIDCR
Story Landis, NINDS
Martha Somerman, NIDCR
########################################################################
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http://list.nih.gov/cgi-bin/wa.exe?SUBED1=NIH_MECFS_WG-L&A=1
Smiling Through Pain: Living On-Air With Fibromyalgia
Sugar Showdown: Science Responds to "Fructophobia"
Testing testing 1 2 3 4
Sunday, July 29, 2012
ADA Notes
C-SPAN (Washington Journal) is currently showing a program about ADA. Tom
Harkin, who sponsored it, has noted that it hasn't done a damn thing to
increase employment among the disabled -- still, 60% of the disabled are
unemployed.
Just because I have the legal right to a job does not mean that I can get
one. Employers are still resistant to hiring the disabled. As happened to
me once, they'll add something to the job description (in that instance,
"must speak Chinese") so that they're turning you down for reasons other
than your disability. Once they added that extra (unnecessary) item, I was no
longer qualified for the job.
There are plenty of jobs that COULD be done from home, but employers are
afraid you'll goof off instead of working, so they won't hire you to work
from home.
In my case, if I have to report to an office rather than working from bed,
I need "work when able", which the court has held is NOT an ADA-mandated
accommodation; someone who needs a flexible schedule can't insist on it.
Someone's just written in with the observation that it's not so easy to get
on Disability. Let's see whether that sinks in with any of these
closed-minded people calling and commenting about the number of fakers. It took
me 11 years, almost to the day, from the day I lost my job until the day I
was approved for SSDI. It's simply not as easy as walking in and saying
"I'm disabled, gimme money."
"It's the one minority group that everyone can join."
-- Curtis Decker,
Executive Director,
National Disability Rights Network
@NDRNadvocates
Video and/or transcripts should be available later at: http://www.c-span.org/
C-SPAN (Washington Journal) is currently showing a program about ADA. Tom
Harkin, who sponsored it, has noted that it hasn't done a damn thing to
increase employment among the disabled -- still, 60% of the disabled are
unemployed.
Just because I have the legal right to a job does not mean that I can get
one. Employers are still resistant to hiring the disabled. As happened to
me once, they'll add something to the job description (in that instance,
"must speak Chinese") so that they're turning you down for reasons other
than your disability. Once they added that extra (unnecessary) item, I was no
longer qualified for the job.
There are plenty of jobs that COULD be done from home, but employers are
afraid you'll goof off instead of working, so they won't hire you to work
from home.
In my case, if I have to report to an office rather than working from bed,
I need "work when able", which the court has held is NOT an ADA-mandated
accommodation; someone who needs a flexible schedule can't insist on it.
Someone's just written in with the observation that it's not so easy to get
on Disability. Let's see whether that sinks in with any of these
closed-minded people calling and commenting about the number of fakers. It took
me 11 years, almost to the day, from the day I lost my job until the day I
was approved for SSDI. It's simply not as easy as walking in and saying
"I'm disabled, gimme money."
"It's the one minority group that everyone can join."
-- Curtis Decker,
Executive Director,
National Disability Rights Network
@NDRNadvocates
Video and/or transcripts should be available later at: _www.C-SPAN.org_
(http://www.C-SPAN.org)
10 Reasons to Use Caution With Pain Relievers - CNN
(http://inhealth.cnn.com/getting-safe-pain-relief/10-reasons-to-use-caution-with-pain-relievers/?
did=t1_rss1&hpt=hp_bn16)
However, if you DON'T relieve pain, you may be creating a chronic pain
syndrome like fibromyalgia.
Treat AHEAD of the pain; don't wait till it gets to level 9 or 10 and then
try to play catch-up, because you can't.
Pain: The Fifth Vital Sign
Got this handout at the Awareness Day rally -- thanks to Jeanne Hess, RN
0 Absence of discomfort
1 Mild pain. Under your conscious radar. Does not interfere with ability to concentrate or perform activities.
2 Discomforting pain. You are periodically aware of discomfort, which subsides with rest, distraction (pleasant activity, music, conversation), change of position, etc.
3 Tolerable, yet annoying pain. NOW is the time to treat with medication in conjunction with comfort measures. Allows best opportunity for effective pain control with the least medication.
4 Pain has your full attention now. "Why didn't I initiate comfort measures and medication sooner?"
5 Moderate pain. Constant, sometimes nauseating pain. Lack of appetite, difficulty concentrating. Begin to isolate self from noise, activity.
6 Grueling, numbing pain. Body tense. Nausea, intolerance for cold, noise and activity increase, mood sinks and increased withdrawal. "Leave me alone."
7 Miserable, agonizing, gnawing pain. "When is SOMETHING going to help?"
8 Horrible, vicious pain. Jaws clenched, respirations rapid & shallow. "WHY isn't anything helping?"
9 Consumed by torturing, crushing unbearable pain. "Get me help NOW!"
10 Physiologically intolerable pain. Loss of consciousness.
Whittemore Trial Postponed
Source: Reno Gazette Journal
Date: July 2, 2012
Author: Martha Bellisle
URL: http://www.rgj.com/apps/pbcs.dll/article?AID=2012307250178
Harvey Whittemore trial on illegal campaign finance charges postponed
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The Aug. 7 federal trial for embattled lobbyist-developer Harvey
Whittemore, charged with making illegal campaign contributions to U.S.
Senate Majority Leader Harry Reid and lying to federal officials, has
been postponed. U.S. District Judge Larry Hicks issued an order
Wednesday granting requests by Whittemore's lawyers and prosecutors to
delay the trial until the end of the year or early in 2013. In a
motion filed Tuesday, Whittemore's lawyers said they needed more time
to prepare for the trial and prosecutors said they did not object to a
delay. 'The government entered into a stipulation with defense counsel
requesting that the court vacate the trial date and the date for
pretrial motions and set a hearing to determine the trial date,'
Natalie Collins, spokeswoman for the U.S. Attorney's Office, wrote in
an email.
The defense asked for more time to prepare and asked for a continuance
until June 2013, she said. 'The government believes that a June 2013
date is an unreasonable length of time given the nature of this case,
and will not oppose a continuance of a trial date to a time between
December 1, 2012 and February 28, 2013,' she said in the email.
Hicks said he would hear arguments on setting a new trial at a later
date. No date was specified by Wednesday. Dominic Gentile,
Whittemore's Las Vegas lawyer, said he was pleased with Hicks'
decision, adding that he is preparing for two other trials 'and it was
not going to be possible to be ready for this one in time.' Gentile
said Whittemore has continued to work in Reno, 'but he's not as happy
as he used to be. 'Other than that, life goes on,' he said.
"It has been known for decades that polio and myalgic encephalomyelitis traveled in side-by-side epidemics, and that those affected with ME were later found to be immune to polio."
Dr. Richard Bruno has studied both diseases. In 1988, Myalgic Encephalomyelitis was re-named Chronic Fatigue Syndrome to hide the severity of the disease that Dr. Bruno theorizes that "when polio was conquered, it left a vacuum which was filled by another enterovirus; CFS researchers have found an enterovirus."
Life as we know it: Dr. Bruno: Parallels in CFS/FMS/Polio
Since no one I knew at the time had CFS, it's clear that I got it from a stranger. Perhaps someone on the street coughed as I walked past. Perhaps someone who had it touched the faucet in the office bathroom and I picked it up after I washed my hands when I turned the water off.