Saturday, August 4, 2012

The Angel Connection: Navigating Illness with Compassion

 
Navigating Illness with Compassion, with special guest Toni Bernhard
Life can routinely throw the unexpected in our path. Even if we take good care of ourselves, strive to be a good person, become more compassionate and so on, we cannot control what may happen that can become a great challenge

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

 
CFIDS.org reports
 
Dr. William Reeves, head of the CDC's CFS research program from 1992-2010, passed away last night.

Gluten-free food profusion: Fad or epidemic?

One Weird Trick to Stay Asleep All Night – Health Headlines

Thursday, August 2, 2012

Senators Stand Up for ME/CFS - Support Push For FDA Stakeholder Meeting

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

 
our culture does not encourage healthy, well-adapted responses to illness. It rewards pushing through, and so that's what the newly diagnosed mostly do. Even after you find out you have to stop doing it, it's hard to turn away from. We think we have to push through; whatever needs doing is more important than giving our bodies time to rest, time to heal.

You're too Young to Be That Sick, and Other Misconceptions

 
use these remarks as a moment to kindly offer education to those who offer their opinion about your age and illness. I remember telling people, when they told me I was "too young to have arthritis" - "Actually, most women are in their twenties and thirties when diagnosed with rheumatoid arthritis. It is an autoimmune disease, so a lot different than typical arthritis you may be familiar with." Little by little, you may help increase their awareness and this will help others in the future.

- Lisa Copen

Walking the Line with Chronic Illness: It's a Jungle Out There

 
"In the United States, helping others is considered an act of charity, not something expected of us."
 
Something my European friends and relatives have never been able to understand.....

Outrunning Your Shadow - The Curse of the Pre-existing Condition

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
 
 
Thanks to Obamacare, that will no longer be a problem.

Tuesday, July 31, 2012

Junkland: 8 Myths About "Welfare Queens", Debunked

 
And, as someone has pointed out, Disability recipients have become the new "welfare queen" myth.
 
 

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.

* * *

"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.

 

Workshop on Overlapping Pain Conditions

The NIH's National Institute of Dental and Craniofacial Research and National Institute of Neurological Disorders and Stroke, together with the NIH Pain Consortium, will sponsor a workshop on Chronic Overlapping Pain Conditions. The workshop will be held Monday and Tuesday, August 13 and 14, 2012 in the Natcher Conference Center, Building 45 on the NIH Campus in Bethesda, Maryland.

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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Smiling Through Pain: Living On-Air With Fibromyalgia

 
Recent developments in brain imaging, however, are revealing specific chemical changes that affect how people with fibromyalgia experience pain. Most people with fibromyalgia learn to manage their condition with a combination of medication, diet, moderate exercise, and stress reduction.

Sugar Showdown: Science Responds to "Fructophobia"

 
The scientific community lashed out against "sugar is toxic"
 
* * *
Dr. Bruno has pointed out that CFS patients often suffer from hypoglycemia, and that the brain needs sugar to function.  Furthermore, most doctors agree that artificial sweeteners are dangerous for anyone, and especially CFS patients.
 
Don't give up your sugar based on hype -- deal in facts, instead!

Testing testing 1 2 3 4

This is why we maintain a YahooGroup and a Facebook presence, so we can get news out via 2 other methods when one is down.
 
If you haven't joined the others, please do so!
 
Monday 7/30 at 10 AM

Sunday, July 29, 2012

ADA Notes

This was written the other day and didn't post due to a problem with Blogspot.  I also just found a bunch of older posts that somehow got filed as "drafts" instead of posting.


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

_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

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

---------------------------------------------------------------------



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.