Saturday, April 27, 2013

Slightly Alive: Thoughts on FDA Workshop April 2013

I don't know how to get around this one, but those of us who have been really sick for a very long time may require a long period of treatment before we show much improvement. That's expensive. But it needs to be taken into account nevertheless.
* * *
Some treatments tried in the past were deemed "only works on people sick less than 5 years".  Which raises the question, does it really only work on newer patients, or does it only work on newer patients in the short time of the clinical trial?
When I had the opportunity to meet Dr. Murphree, he warned us that "Rome was not built in a day" and our sleep deprivation wouldn't be cured overnight, either.  His assessment was it would take one year of good sleep to heal for each year of poor sleep, and that was pretty much on target for me.
So it's entirely possible that some of the other treatments that work in 6 months on someone who's "newly sick" might take a couple of years to work for someone who's been sick longer.  But research trials are about getting fast answers, not about waiting for years for results on the long-term patients.
Of course, then there's the other problem, that some of us who've been sick for many years have started to develop other problems (e.g., cardiac insufficiency) that may not be curable.  But we won't know if we don't try.

Friday, April 26, 2013

Doctors blast ethics of $100,000 cancer drugs - Apr. 25, 2013

Drug prices for all sorts of conditions are far out of line with any economic basis. That's an unsustainable trend, in his view.

Kantarjian hopes other doctors will take up the cause and start analyzing -- and speaking out against -- the rapidly rising costs of drugs in their fields.

"CML happens to be my area," he said. "We wanted to provide a model that other tumor experts and specialists in other fields -- say cystic fibrosis or multiple sclerosis -- can follow."


* * *

The drugs that seem to help with CFS are all so expensive that they'd eat up a full-time paycheck.  Where's the incentive for patients to get off Disability and go back to work if every cent they earn is going to pay for prescriptions, leaving them nothing to live on?


Dreaming of a Good Night's Sleep?

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Dreaming of a Good Night's Sleep?

By Karen Lee Richards*

Chronic insomnia is a serious problem for many people. According to the
National Sleep Foundation, 22% of Americans experience insomnia every or
almost every night. For people who have fibromyalgia or ME/CFS, that percentage
is significantly higher. More than 75% of people diagnosed with FM and
approximately 60% of those with ME/CFS have difficulty falling asleep, staying
asleep and/or awakening from sleep feeling rested and refreshed.

ProHealth founder, Rich Carson, is one of those people. Tired of fighting
the nightly battle for sleep, he set out to develop a product that would
help not only himself, but also the millions of others like him for whom
sleep remains just a dream. Rich tells his story...

"Sleep issues are huge when it comes to FM and ME/CFS. As an ME/CFS
patient myself, I suffer from chronic insomnia. While I found a number of
supplements that helped with sleep - like melatonin, 5-HTP, valerian, chamomile,
lemon balm, L-theanine and an absorbable form of magnesium - I was tired of
having to take several different products to get the results I needed. I
wanted to be able to take a single product that provided the most potent
sleep-supporting nutrients available - something that acted quickly, was safe
and natural and had few, if any, side effects.

"First, I put together a wish list of supplements that were all conducive
to sleep. After experimenting for months with different combinations of
sleep-supporting herbs and nutrients, I came up with an all-in-one balanced
formula I call FibroSleep. Next, I tested it on myself and friends with
remarkable success. I knew FibroSleep would work, but what surprised me most was
just how well it worked! Many people say it's the most potent and
effective sleep supplement they've tried."

Understanding the Problem

In order to understand why FM and ME/CFS patients have such a hard time
getting quality sleep, it is first necessary to understand what happens
during a normal sleep cycle. Although you may think of sleep as a time of rest,
your body is actually quite busy doing some of its most important work,
like repairing cells, secreting certain hormones into the blood, and
consolidating memories. It is also thought that the immune system turns on during
deep sleep to combat illness.

When we sleep, our body cycles through five stages:
Stage 1: Light sleep - the time between being fully awake and entering
Stage 2: Onset of sleep
Stages 3 and 4: Deepest, most restorative sleep
Stage 5: REM (rapid eye movement): Brain is active and dreams occur

A complete sleep cycle takes about 90 to 110 minutes and is repeated four
to six times per night, with the initial REM period occurring about 70 to
90 minutes after falling asleep. The first sleep cycles each night consist
of relatively short REM periods and long periods of deep sleep. As the night
progresses, REM sleep periods increase in length while deep sleep
decreases. By morning, most people spend nearly all of their sleep time in stages
1, 2, and REM.(1)

However, if you have FM and/or ME/CFS, your body is probably not making it
through the complete sleep cycle without interruption.

A 2008 sleep study compared 26 ME/CFS patients (12 with coexisting FM)
with 26 healthy controls. The researchers found that the ME/CFS patients had
significantly reduced total sleep time, reduced sleep efficiency, and
shorter bouts of sleep than healthy controls. They concluded that the sleep
differences seen between the ME/CFS patients and healthy controls were primarily
due to a decrease in the length of periods of uninterrupted sleep.(2)

In 1975 Dr. Harvey Moldofsky first discovered that FM patients had an
"internal arousal mechanism" that interrupted their stage 4 deep sleep(3), and
multiple studies since then have confirmed his findings. This interruption
of deep sleep by sudden bursts of awake-like brain activity is now called
the alpha-EEG anomaly.

A Danish review of research done on pain and sleep, with special reference
to fibromyalgia, reported that most studies found the alpha-EEG anomaly to
be very prevalent in FM patients.(4)

A 2013 study comparing ME/CFS patients to healthy controls found that the
ME/CFS patients had significant changes in heart rate variability measures
during sleep. The researchers also found evidence that the reduced sleep
efficiency and reduced total sleep time of ME/CFS patients might be caused by
increased sympathetic nervous system activity during non-REM sleep

Finding a Solution

Often FM and ME/CFS patients are prescribed antidepressants or sleeping
medications in an effort to help them sleep better. While these medications
may help you fall asleep faster and sleep for more hours, most of them do
little to improve the important deeper sleep stages - the time when your body
is restoring and replenishing itself. In fact, some medications actually
interfere with deep sleep. Plus, all medications carry the risk of side
effects. So finding a natural method of improving sleep quality offers a much
better option.

FibroSleep Provides 4-Way Sleep Support

FibroSleep™ is a powerful blend of pure, natural ingredients that have
been used for thousands of years to support deep, restorative sleep. It works
in four important and synergistic ways:

1. Herbal Sleep Support - FibroSleep contains Sedapine™, a proprietary
blend of herbs that have been used for thousands of years to provide effective
support for sleep, relaxation, and general health. This Sedapine blend
Ziziphus Spinosa - the most prescribed medicinal herb for sleep and
relaxation support in China and throughout Asia.

Corydalus - historically employed in traditional Chinese and Native
American medicine to support relaxation and stress reduction.

Valerian - the most researched sleep-supporting herb in the world. No herb
has proven to be more effective in clinical trials for providing effective
support for improved sleep. One review identified 12 studies showing that
valerian by itself or in combination with hops was associated with
improvements in sleep latency (the time it takes to transition from full
wakefulness to sleep) and quality of sleep.(6)

Passion Flower - provides support for stress, anxiety, and sleep. It is
also has calming and restorative properties.

2. Digestive Support - Calming and supporting the digestive tract is an
important first step in attaining restful, restorative sleep. FibroSleep
promotes deep sleep and digestive healing by addressing antioxidant and natural
anti-inflammatory needs.

Lemon Balm - used to promote comfort, relaxation, and calm the digestive
and nervous systems. It provides synergistic sleep support when combined
with Valerian.

Ginger - a calming anti-inflammatory and digestive aid used to settle the
stomach and promote peristalsis. It offers over 150 times the protein
digesting power of papaya and contains at least 22 known anti-inflammatories and
12 antioxidants.

Peppermint - traditionally used as a relaxant, it calms the muscles of the
stomach, helps reduce excessive gas production, improves the flow of bile
used in fat digestion, and promotes proper elimination.

Hops - acts directly on the central nervous system to support the
relaxation of smooth muscle tissue, improve central nervous system activity, and
calm and soothe digestion.

3. Muscle and Nerve Support - Supporting muscle and nerve health is
important for proper sleep. FibroSleep contains two highly bioavailable forms of
magnesium to help balance nerve transmission and muscle fiber contraction,
along with the calming amino acid, taurine.
ZMA™ - a great source of extremely bioavailable magnesium and zinc that
supports sleep and healing by aiding in the transport of oxygen to nerve and
muscle cells. Magnesium is the number one mineral deficiency in the United
States, and zinc is the most important mineral for immune system function.

Magnesium Taurinate - a bioavailable yet gentle source of magnesium
combined with the nervous-system-calming amino acid L-taurine.

4. Amino Acid Support - Amino acids are the building blocks of life and
are critically important for nerve cell health as well as neurotransmitter and
hormone production and balance.
GABA - the main calming amino acid in the central nervous system, this
naturally produced substance helps to induce relaxation and sleep. It is also
known for supporting healthy pituitary function as well as for its calming
effect on over-stimulated neurons.

Melatonin - a natural hormone produced by the body that helps regulate
other hormones and maintains the body's circadian rhythm. It supports the
body's own production of the tranquilizing neurotransmitter serotonin, which
plays a key role in healthy sleep patterns and mood. Recommended by more and
more doctors as a safe and natural sleep enhancer, melatonin has become the
most popular sleep-support compound in the natural food industry.

5-HTP - used by the body to make serotonin. Several small clinical trials
have found it may provide significant support for fibromyalgia, sleep,
mood, and migraines.

L-Theanine - a calming amino acid found in green tea that can increase
levels of GABA (gamma-aminobutyric acid). Studies suggest it may reduce
feelings of mental and physical stress and may produce feelings of relaxation. It
is also thought to enhance immune function and boost levels of
glutathione. L-Theanine increases the brain's alpha wave activity, which is associated
with deep relaxation.

Research Behind FibroSleep Ingredients

There are a number of interesting studies available on both the individual
ingredients in FibroSleep as well as on various combinations of those
ingredients as they relate to sleep quality. Here are just a few:

Valerian and Hops: A 1998 German study comparing the use of a
hops-valerian combination with a benzodiazepine drug found them to be comparable in
effectiveness for improving sleep. The one big difference was that those
taking the benzodiazepine experienced withdrawal symptoms when the stopped but
those taking the hops-valerian did not. The investigators concluded that a
hops-valerian combination was a "sensible alternative to benzodiazepine" for
treating sleep problems.(7)

Passion Flower: A 2011 Australian study of 41 participants who were given
passion flower tea and a placebo, separated by a one-week 'washout' period,
found that their sleep quality significantly improved when they used the
passion flower as opposed to the placebo.(8)

Melatonin, Magnesium and Zinc: Forty-three people with primary insomnia
were given either a supplement consisting of melatonin, magnesium and zinc or
a placebo one hour before bedtime for eight weeks in a 2011 Italian study.
The group taking the supplement had significantly better scores on three
different sleep-evaluation instruments, indicating that the treatment had a
beneficial effect on the restorative value of sleep. The authors concluded
that the nightly administration of melatonin, magnesium and zinc appeared
to improve both the quality of sleep and the quality of life of the

GABA and 5-HTP: In a 2010 study, 18 patients with sleep disorders were
given either a preparation containing GABA and 5-HTP (hydroxytryptophan) or a
placebo. The researchers reported that the differences between the two
groups were significant, concluding that the GABA/5-HTP combination reduced the
time to fall asleep, decreased sleep latency, increased the duration of
sleep, and improved the quality of sleep.(10)

What People Who Take FibroSleep Say

FibroSleep is ProHealth's best-selling product, with a remarkably high
reorder rate. Our customers have also made it one of our highest rated
products. Here are a few of the comments we have received:

"This product is LIFESAVING for me. I recently tried to stop taking this
product to try something else and within a week I was overtly fatigued,
sleep walking, suffering from extreme insomnia and exhaustion to the point that
I was falling asleep standing up! No lie...I restarted the product and
within 72 hours all of my issues are gone and I am starting to feel like
myself again!..." - Roberta

"This is by far the single most effective sleeping aid I have taken to
deal with my sleep issues that fibro has created. I am now sleeping deeply all
night. The changes were almost immediate and I am so thankful for the
natural sleep support. The fibrofog has lifted some what and after three months
of use still continue to sleep well. Thank you so much." - Carrie

"The three people who have tried it in our CFIDS/Fibromyalgia Support
Group (including myself) are very pleased with "FibroSleep." It quiets your
mind in a gentle way to turn off the noise and let you get a good, full-night
of restful sleep without any leftover feelings of grogginess. Just what we
need most, and no side-effects!" - Thomas

"I have used Fibro sleep for several years now and it helps immensely. I
have tried other products and come back to this one every time..." - Mary

Need-to-Know Information

ProHealth uses only the highest quality herbal extracts in their
FibroSleep formula.

Recommended Dosage: 1-2 capsules an hour before bedtime. There is,
however, some dosage flexibility. For example, Rich Carson, who developed the
product, usually takes 3 to 4 capsules each night. He recommends starting with
one capsule and gradually increasing the dosage as needed up to a maximum
of six capsules.

As with all sleep products, FibroSleep may become less effective over
time. If this happens, stop taking it for three or four weeks. When you resume
taking it, the effectiveness should return.

Contraindications and Precautions:

Because FibroSleep supports deep sleep, do not drive or do anything that
requires being alert after taking it.

Pregnacy and Lactation - Consult your obstetrician if you are pregnant or
breast-feeding. Hops should not be used if you are pregnant.

Antidepressants - Consult your physician if you are taking prescription

Blood Thinners - Ginger stimulates circulation and should not be taken
with blood thinning medications.

Salicylates - Some herbal components including peppermint and lemon balm
contribute small amounts of salicylates, so may be of concern to sensitive
individuals or those on the Guaifenesin Protocol.

In Summary

The FibroSleep formula, personally developed by ProHealth founder and
ME/CFS patient Rich Carson, is a powerful blend of pure, natural herbal
ingredients that supports the deep, restorative sleep so needed by those with FM
and ME/CFS.

For more information about FibroSleep, visit or call us at
(800) 366-6056.

* Supplement research reporter Karen Lee Richards is Lead Expert
specializing in Fibromyalgia and ME/CFS for HealthCentral's chronic pain site

For references, please see original article at

Thursday, April 25, 2013

Amazon Kindle: How Doctors Think

Read the first chapter free, about a woman who suffered for 15 years before a doctor asked the right questions and thus reached the correct diagnosis.

Tuesday, April 23, 2013

Biological breakthrough offers fresh hope

'Misdiagnosis' Leading Cause of U.S. Malpractice Payouts: Study

Missed or wrong diagnoses made up the lion's share of U.S. malpractice payouts -- which totaled nearly $39 billion -- during the past 25 years, finds a new study of more than 350,000 claims.

"These are the most common and the most costly of all malpractice claims," said study author Dr. David Newman-Toker, an associate professor of neurology at the Johns Hopkins University School of Medicine, in Baltimore. "We have to pay attention to this because it is too big of a problem to ignore."

Hospitals “Profit Handsomely” From Surgical Errors

"In 1999, the Institute of Medicine published a report saying that hospital errors killed nearly 100,000 Americans a year—a rate of lethal medical harm comparable to four jumbo jets crashing each week."

How an old illness got a new name

In order to think about Chronic Fatigue Syndrome clearly, it's imperative to bring the events that led up to the creation
of CFS into "epidemic" context.

There were many outbreaks globally of similar or identical illnesses before the 1984 outbreak in Incline Village, Nevada, and the
surrounding Lake Tahoe area. There have been many since. But the outbreak in Lake Tahoe is the one that brought the CDC out
to investigate, and the one that gave birth to the name "Chronic Fatigue Syndrome."

Dr. Melvin Ramsay formally coined the name "Myalgic Encephalomyelitis" in 1956, applying it to the Royal Free outbreak in 1955 (see below). After 30 years of investigation into the illness, Ramsay developed a definition of the illness that has stood the test of time. As Dr. Ramsay stated, "Eponyms such as `Akuryeru Disease'. `Iceland Disease' and `Royal Free Disease' have also been used in the case of particular outbreaks. These have the disadvantage that they obscure the all important fact that the disease has been
reported world-wide."

The World Health Organization has recognized Myalgic Encephalomyelitis as a distinct organic neurological disorder since 1969. However, when the CDC created the term "Chronic Fatigue Syndrome," a great many patients who fit the clinical definition of ME were cut off from a legitimate infectious neurological disease diagnosis, and trapped in the broad wastebasket term "CFS."

Outbreaks prior to the Incline Village manifestation include (but are not limited to):

1934 Los Angeles County Hospital - Atypical Poliomyelitis
1936 Fond Du Lac, Wisconsin - St. Agnes Convent - Encephalitis
1937 Erstfeld, Switzerland - Abortive Poliomyelitis
1937 St. Gallen, Switzerland - Frohburg Hospital – Abortive Poliomyelitis
1939 Middlesex, England - Harefield Sanatorium - persistent Myalgia following sore throat
1939 Degersheim, Switzerland - Abortive Poliomyelitis
1945 Hospital of the University of Pennsylvania - epidemic Pleurodynia with prominent neurological symptoms and no demonstrable cause
1946 Iceland – disease resembling Poliomyelitis with the character of Akureyri disease
1948 Iceland, North Coast towns - epidemic simulating Poliomyelitis
1949 Adelaide, South Australia - a disease resembling Poliomyelitis
1950 Louisville, Kentucky -- St. Joseph's Infirmary - outbreak in nurses' training school described as "epidemic Neuromyasthenia"
1950 Upper State New York - outbreak resembling the Iceland disease…simulating acute Anterior Poliomyelitis
1952 London, England - Middlesex Hospital Nurses' Home - Encephalomyelitis associated with Poliomyelitis virus
1952 Copenhagen, Denmark - epidemic Myositis
1952 Lakeland, Florida - epidemic Neuromyasthenia
1953 Coventry and District, England - an illness resembling Poliomyelitis observed in nurses
1953 Rockville, Maryland - Chestnut Lodge Hospital - Poliomyelitis-like epidemic Neuromyasthenia
1953 Jutland, Denmark - epidemic Encephalitis with vertigo
1954 Seward, Alaska - benign Myalgic Encephalomyelitis (Iceland Disease)
1954 Berlin, Germany - British army - further outbreak of a disease resembling Poliomyelitis
1954 Liverpool, England - outbreak among medical and nursing staff in a local hospital
1955 Dalston, Cumbria, England – epidemic and sporadic outbreak of an unusual disease
1955 London, England - Royal Free Hospital - outbreak in staff and patients of Benign Myalgic Encephalomyelitis
1955 Perth, Australia - virus epidemic in waves
1955 Gilfac Goch, Wales - outbreak of benign Myalgic Encephalomyelitis
1955 Durban City, South Africa - Addington Hospital - outbreak among nurses of "Durban Mystery Disease"
1955 Segbwema, Sierra Leone - outbreak of Encephalomyelitis
1955 Patreksfjorour and Porshofn, Iceland - unusual response to polio vaccine
1955 Northwest London, England - nurses' residential home - acute Infective Encephalomyelitis simulating poliomyelitis
1956 Ridgefield, Connecticut - epidemic Neuromyasthenia
1956 Punta Gorda Florida - outbreak of epidemic Neuromyasthenia
1956 Newton-le-Willows, Lancashire, England - Lymphocytic Meningoencephalitis with myalgia and rash
1956 Pittsfield and Williamstown, Massachusetts - benign Myalgic Encephalomyelitis
1956 Coventry, England - epidemic malaise, benign Myalgic Encephalomyelitis
1957 Brighton, South Australia - Cocksakie Echo virus Meningitis, epidemic Myalgic Encephalomyelitis
1958 Athens, Greece - nurses' school - outbreak of benign Myalgic Encephalomyelitis with periostitis and arthopathy noted.
1958 Southwest London, England - reports of sporadic cases of Myalgic Encephalomyelitis
1959 Newcastle Upon Tyne, England - outbreak of benign Myalgic Encephalomyelitis
1961 Basel, Switzerland - sporadic cases of benign Myalgic Encephalomyelitis
1961 New York State - outbreak of epidemic Neuromyasthenia in a convent
1964 Northwest London, England - epidemic malaise, epidemic Neuromyasthenia
1964 Franklin, Kentucky - outbreak of Neuromyasthenia in a factory
1967 Edinburgh, Scotland - sporadic cases resembling benign Myalgic Encephalomyelitis
1968 Fraidek, Lebanon - benign Myalgic Encephalomyelitis
1969 Brooklyn, New York - State University of New York Downstate Medical Center - epidemic Neuromyasthenia, unidentified
symptom complex

1970 Lackland Air Force Base, Texas - epidemic Neuromyasthenia
1970 London, England - Great Ormond Street Hospital for Children - outbreak of Neuromyasthenia among nurses
1975 Sacramento, California - Mercy San Juan Hospital - Infectious Venulitis, epidemic Phelobodynia
1976 Southwest Ireland - epidemic Neuromyasthenia, benign Myalgic Encephalomyelitis
1977 Dallas – Fort Worth, Texas - epidemic Neuromyasthenia
1979 Southampton, England - Myalgic Encephalomyelitis
1980 West Kilbridge, Ayrshire, Scotland - epidemic Myalgic Encephalomyelitis
1980 San Francisco, California – epidemic persistent flu-like illness
1981 Stirlingshire, Scotland - sporadic Myalgic Encephalomyelitis
1982 West Otago, Dunedin and Hamilton, New Zealand - Myalgic Encephalomyelitis
1983 Los Angeles, California - initial cases of an unknown, chronic symptom complex involving profound "fatigue"
1984 Lake Tahoe Area of California/Nevada - start of a yearlong epidemic involving over 160 cases of chronic
illness eventually characterized as Chronic Fatigue Syndrome


Dr. Judy Mikovits - "In Short Order" Radio Interview, 11/04/12:

• "You should consider Myalgic Encephalopathy (ME) as "NON-HIV AIDS"
• "...I see this as an Acquired Immune Deficiency:...
• If so, it's (ME is) still an Acquired Immune Deficiency.,14019.0.html