Saturday, June 14, 2014

Dr. Oz: World’s Best Snake Oil Salesman - The Daily Beast

 
The unmitigated claptrap that Dr. Oz promotes doesn't stop at weight-loss treatments, either. He'll help you choose "the right cleanse for your body type." (Correct answer: none of them.) ... somewhere along the way he decided that his fame was more important than his credibility, as demonstrated by his willingness to promote treatments that fail to withstand even the barest scientific scrutiny.
 
* * *
 
We were pleased when Dr. Oz addressed CFS and fibromyalgia on his show, educating millions that they are REAL diseases, not psychiatric problems.  Unfortunately, the doctor he chose to discuss them wasn't Peterson or Cheney or even Judy Mikovits, who'd talk about the fact that there's still no treatment, no cure, and the need for research ... the doctor he invited was Dr. T, who thinks we can exercise our way back to health, and gave no warnings that any exercise that makes you breathe hard is strenuous enough to push the virus even deeper into the heart muscle.  How many patients were made worse by following Dr. T's advice to exercise?
 
 
 

Thursday, June 12, 2014

WPI annual fundraiser, Sept 19, 2014

http://www.discoverygala2014.com/

Whittemore Peterson Institute's Annual Benefit Gala

Boots and Black Tie

2014 Discovery Gala
September 19, 2014 • 6:00 p.m.
Atlantis Casino Resort Spa • Paradise Ballroom

The Discovery Gala's theme is Boots & Black Tie, so get your kickers
polished up and head on down to the Atlantis Casino Resort Spa for
dinner, dancing, and an amazing auction!

View our Sponsorship levels and purchase your tickets now.
Quest, $225: Individual Seating

Exploration, $2,000.00: Preferred seating for a table of 10, display
of logo* at event, ¼ page ad in the event program, and social media
and website recognition.

Discovery, $5,000.00: Preferred seating for a table of 10, display of
logo* at the event, ½ page ad in event program, and social media and
website recognition.

Innovation, $10,000.00: Priority seating for a table of 10, premium
table wine, display of logo* at the event, full page ad in event
program, and social media and website recognition.

Transformational, $25,000.00: VIP seating of two tables of 10, premium
table wine, display of logo* at the event, full page ad in event
program, and social media and website recognition. Please contact
Katie Porath at 775-682-8253 for more information.

Onward Through the Fog: Time to Deliver Report: How Surveys on CFS Fail

 
 
roughly 700 people said they were mildly ill, yet fewer than 200 people were still working normal hours. That means that the majority of mildly ill patients had stopped working. If an illness is serious enough to prevent a person from working or attending school, it cannot, by definition, be mild.
* * *
 
People who have been living with major restrictions tend to be less realistic about how severely restricted they are -- "I can't be severe, I can still get up to feed the cats (even though it knocks me out the rest of the day)".  We tend to limit "severe" to those who can't get up at all, not even for a minute.
 
When I applied for the sleeping pill clinical trial, I circled "moderate", since I was sleeping a few hours here and there.  To me, "severe insomnia" meant I never slept at all.  When the doctor reviewed my sleep diaries, he upgraded me to severe.
 
So, there's a disconnect between patient perception and doctor perception, and quantifying is perhaps the best way to resolve that disconnect.  On one appointment, I had a doctor scold me that I needed to go out for a walk, and that walking around the house was not enough.  By my next appointment, I had had a chance to pull out the calculator.  Because I live in a long, narrow house, just the bare minimum of going to the front door to bring in the paper in the morning and the mail in the afternoon, and three trips to the kitchen, added up to 1/4 mile, even on days that I wasn't well enough to be out of bed for anything more than that.  When I told him at that next appointment that I walked a minimum of 1/4 mile every day, and sometimes more (if I'm well enough to sit on the couch instead of in the bedroom, those trips to the bathroom at the other end of the house add up), suddenly that was OK.  The amount of walking I was doing hadn't changed, just his perception of it.
 
So now I've learned to give them numbers instead of adjectives.  "I get light-headed if I sit up for more than 5 minutes" gets a lot more attention than "I have to spend all day lying down."
 
 
 
 

Wednesday, June 11, 2014

Why can't Ampligen be approved?


Why can't Ampligen be approved?


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Send an EMAIL for FREE membership
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~
    >>>>> Help ME Circle <<<<
    >>>>   3 June 2014   <<<<
Editorship : j.van.roijen@chello.nl
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Billie Moore
NJCFSA Advocacy Chair

To: The ME/CFS Patient Community

We are requesting your help to continue
to push the FDA towards treatments.

Please cut and paste the following message and
send it to the email addresses below.

It is important that ME/CFS stay high on the
FDA's agenda.

Currently Congressman Upton from Michigan is
leading a team of other Congressional members in
an initiative called 21st Century Cures that seeks
to increase the pace of medical breakthroughs.

His initiative gives us fertile ground to continue
to press Congress and the FDA that FDA must
work to fill the pipeline and provide Ampligen an
approval with conditions.

Again, if we get one drug across the line - many
more will follow.

From: The FDA Treatment Team - Cort Johnson,
Bob Miller, Billie Moore, Pat LaRosa, Dr. Janet
Smith, Anita Patton, and Lori Chapo-Kroger

Please cut and paste the message below and
send to the following offices:

To:

margaret.hamburg@fda.hhs.gov
janet.woodcock@fda.hhs.gov
janet.maynard@fda.hhs.gov
howard.koh@hhs.gov

Cc:

mark.ratner@mail.house.gov
monica.volante@mail.house.gov
rachel.stauffer@mail.house.gov
robb.walton@mail.house.gov
catie.fulton@mail.house.gov
christopher.stewart@mail.house.gov
kathryn.allen@mail.house.gov
mitchell.vakerics@mail.house.gov
Mark.Iozzi@mail.house.gov
alicia.siani@mail.house.gov


To: Drs. Woodcock, Hamburg, Maynard

Cc:  Congressional Members - Upton, Pitts,
DeGette, Cassidy, Heck, Benishek, Burgess,
Ellmers and Engel, Holt

FDA FAILS TO APPROVE A DRUG DEEMED
SAFE FOR ME/CFS

Leaves Chronically Ill and Desperate Patients to
Take Untested Off-label Medications.

FDA says they will approve drugs with serious
adverse events if they believe the drugs are
effective, but FDA won't approve a drug that is
SAFE.

They say they can manage the adverse events
of drugs.

But what about the adverse events from
medications never tested on ME/CFS patients -
where is their data on efficacy and safety for
those medicines?

ME/CFS expert Dr. Charles Lapp, who has treated
thousands of ME/CFS patients and has infused
Ampligen for more than 25 years, said:

"Even if Ampligen doesn't improve a patient, it
does no harm."


The experts said it works, and the FDA Advisory
Committee said it's clear that some patients are
experiencing benefit.

More than 700 patients provided testimony
requesting approval of Ampligen, and more than
4,000 signed a petition asking for the drug to be
approved.

In April of 2014 FDA admitted they do not
understand the disease.

FDA has failed in its Risk-Benefit process leaving
the nation with more than $22 billion in costs,
unrelieved suffering of patients, and deaths from
ME/CFS.

THERE IS NO OTHER DRUG IN THE PIPELINE.
WE DEMAND A HEARING

FDA must answer to the patients they are
leaving to suffer.

The hearing should address:

Why this disease has no high-priority designation
to get drugs approved for this very sick
population of over one million people (same
number as with HIV/AIDS)?

Why can't Ampligen be approved now under a
conditional approval?

Why has the FDA failed to convene a meeting of
ME/CFS experts, representatives from those drug
companies making drugs now used off-label for
the disease, and patients to find out how the
FDA can stimulate drug company interest in
ME/CFS?

WE DEMAND A CONGRESSIONAL HEARING.

The FDA must live up to their charge and help
those with chronic illnesses.

We have a right to treatment, and our voices
and our experts need to be heard!

Support us, please!


(your name)

(USA: your city and state)

(Outside USA: your city and country)

(years you have been sick)





~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:
PEM, NOT Chronic Fatigue, is why patients
  are bedridden, homebound, unemployed,
         and unable to walk a block.
      ~:~:~:~:~:~:~:~:~:~:~:~:~

Monday, June 9, 2014

"Why does stigma still surround ME?"

Start: "Why does stigma still surround ME? Because doctors believe it's all
about deconditioning"

Extract:
----
"Almost nobody, except a tabloid headline-writer, says ME is "all in the
mind" these days. So why is there still such a stigma attached to
ME/Chronic Fatigue Syndrome?
In my experience, the stigma gets  worse the more severely affected with ME
you are. Now that my illness presents in a moderate form, the treatment I
get from the medical profession is mostly benign neglect. When I was very
severely affected it was a different story: I experienced outright
hostility, open disbelief, accusations of hysteria, attention seeking,
malingering and manipulation. I was very, very ill and yet my poor parents
were shunned by doctors and left to care for me alone."
----
It ends:
----
"To end the stigma of ME and the shocking neglect and even abuse towards
severe ME we have to knock the deconditioning theory on the head once and
for all. We need to change the received wisdom on ME within the medical
profession. It won't be easy but it looks like at last we science on our
side."
----

http://bit.ly/1gN15Bw  i.e.
http://limitedcapability.blogspot.com/2014/05/why-does-stigma-still-surround-me.html

Vibration helps Fibromyalgia

Source: Indiana State University
Date:   May 29, 2014
URL:    http://www.sciencedaily.com/releases/2014/05/140529154009.htm


Vibration exercise study finds some relief for fibromyalgia
-----------------------------------------------------------

Summary

Whole-body vibration exercise may reduce pain symptoms and improve
aspects of quality of life in individuals diagnosed with fibromyalgia,
research shows. Whole-body vibration exercise involves standing,
sitting or lying on a machine with a vibrating platform that causes
muscles to contract and relax as the machine vibrates. The machines
primarily are used by researchers but have begun appearing in fitness
centers and are sold commercially.

A pilot study by Indiana University researchers found that whole-body
vibration exercise may reduce pain symptoms and improve aspects of
quality of life in individuals diagnosed with fibromyalgia.

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - -
'Our findings are promising, but it is not entirely clear whether
these improvements were the result of added vibration or just the
effects of being more active,' said lead author Tony Kaleth, associate
professor in the School of Physical Education and Tourism Management
at Indiana University-Purdue University Indianapolis. Effects of
whole-body vibration exercise on physical function and pain severity
in patients with fibromyalgia' was discussed on Thursday during the
clinical populations session at the American College of Sports
Medicine annual meeting in Orlando, Fla.

Regular exercise participation is one of the best known therapies for
patients with fibromyalgia, a disorder characterized by widespread
musculoskeletal pain and fatigue. Many patients, however, are averse
to participating over fears of pain that may be associated with
increased physical activity. As a result, said Kaleth, many patients
continue to spiral downward, further exacerbating a sedentary
lifestyle that often leads to a worsening of symptoms. 'Over time,
this can lead to additional weight gain, as well as accompanying
chronic health conditions associated with obesity, such as high blood
pressure, and type 2 diabetes,' he said.

Whole-body vibration exercise involves standing, sitting or lying on a
machine with a vibrating platform that causes muscles to contract and
relax as the machine vibrates. The machines primarily are used by
researchers but have begun appearing in fitness centers and are sold
commercially. 'Vibration training is increasingly being studied in
clinical populations as a potential therapeutic mode of exercise
training,' Kaleth said. 'Although the results are largely equivocal
and in need of further study, studies have reported improvements in
strength, muscle spasticity and pain in select populations.'

Fibromyalgia, which has no cure, is primarily diagnosed in women and
may also involve difficulties with sleep, memory and mood. The
disorder affects an estimated 1-3 percent of the population.

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - -
Story Source

The above story is based on materials provided by Indiana University.
Note: Materials may be edited for content and length.

--------
(c) 2014 Indiana State University

Sunday, June 8, 2014

One-Sentence Summary of The Invest in ME Conference

 
"there seems to be international convergence on immune dysfunction, pathogens, and a definition of M.E. that requires post-exertional exacerbation of symptoms and cognitive dysfunction."
 
We're getting closer!