Saturday, March 2, 2013

Advocacy For Patients With Chronic Illness | Know Your Rights





Know Your Rights

A Handbook for Patients with Chronic Illness
By Jennifer C. Jaff, Esq.

KNOW YOUR RIGHTS provides easy to understand explanations of legal issues facing patients, and trains readers - patients, spouses, families, friends, medical providers - how to navigate the system.

Friday, March 1, 2013

Nothing Special about Alternative Medicine

Note: When traditional medicine fails patients many turn to unregulated
supplements - which as this journalist says isn't necessarily bad as long
as you understand the risks and mechanisms involved. Always make sure your
physician knows if you are taking supplements as they can interact with
other drugs and supplements.

Emily Willingham 2/28/2013

There's Nothing Special About Alternative Medicine

I know that a lot of people turn away from industry pharmaceuticals and to
'natural' or 'alternative' meds because 'natural' sounds better for healing
and health than 'industrial' does, and 'alternative' implies a mavericky
nosethumbing at authority. There's a reason Aretha Franklin sang about
feeling like a natural woman, instead of an industrial or artificial or
synthetic one.

But here's the thing: Whether the drug you're taking came to you by way of
'Big Pharma' or 'Big-AltMed' or 'Big Street Dealer', if it has an effect,
it's doing that in the same basic way: It interacts with some molecules in
your body and changes the way a process happens. That change is what you
feel, unless you're just enjoying the relative innocuousness of the placebo
effect. No drug varies from this basic framework of activity, regardless of
where it came from. 'Natural' doesn't mean 'my body will know this one
better and it will be safer because they're both Nature'.

Where the difference between 'natural' and industry comes in is that what
you get from regulated drugs, whether synthetic or naturally derived, has
been tested. Once results from simulated lock-and-key fitting of molecules
or case studies hint at possibilities, several levels of testing come next.
The candidate drug goes from testing in a lab dish to rodents and usually
through several stages of clinical (with people) trials. Researchers follow
it every step of the way, often in different research groups, evaluating a
variety of doses in assorted patient populations, tracking side effects and
adverse events and developing a 'safety profile' for the intervention. The
dosages are standardized, and when you get such a medication, you generally
know what you're getting.

It's the rare alt-med intervention that has undergone this level of
evaluation or standardization. Any related scientific studies tend to be
scattered and in search of a hypothesis, and results often contradict each
other. When investigators do conduct trials, the findings are often
disappointing. Echinacea, I'm talking to you.

The alt-med types of interventions tend to come to us instead by way of the
anecdote grapevine or, worse, peddlers of such things who tell you what
problem you have and then try to sell you an unregulated alt-med to solve
it. They've got an industry, too, you see. There are two possible
explanations for people who go this route and claim benefit: The placebo
effect is real, or … well, if the meds are really doing something
therapeutic for you, then they're doing it within exactly the same basic
biological framework as a regulated drug. 'Natural' and 'alternative' are
simply cultural appellations with their attendant cultural meanings,
designations that our physiology doesn't give a rip about.

Yes, research suggests a bias toward favorable findings in industry-funded
studies. There have unquestionably been real tragedies with some
industry-derived drugs. Yet, alt-med also has a muddied track record,
sometimes because of erratic dosing or drug interactions and sometimes
because they redirect a person from life-saving conventional medicine. A
breast cancer specialist once told me that in one year, she'd had four
women come to her with a previously detected breast cancer who'd been
trying alternative meds as treatment — for too long. By the time they got
to her, their cancers had progressed beyond what would have been a
relatively treatable stage.

And then there's the concept of the informed patient. With any federally
approved pharmaceutical–say, bupropion–I can go to the prescribing
information for that drug and read it, in its entirety. There, I will find
details about the standardized studies with this drug and the results. I'll
get long lists of all events that happened to people while they were on
treatment in a study and their frequency. I'll see tables of information
comparing placebo outcomes with those of the drug and data from animal

The prescribing information will tell me how the drug works–if that's
known. It says who shouldn't be taking the drug and why or what they
shouldn't take it with, something we know thanks to those thorough
laboratory and clinical studies. It's all there, the information I need to
make an informed decision about an intervention that will interact with
some molecules in my body, cause a change, and have an effect. And in the
case of bupropion, if the effect fails, regulators tracking post-marketing
reports get the alert and try to find out why.

And that kind of evidence-based data gathering is something that I
generally cannot do with alternative meds, supplements, or other untested
interventions because that information usually does not exist. You've got a
choice between often-not-at-all-tested versus

There's nothing inherently wrong with choosing alternative meds, 'natural'
meds, and supplements if you find that for you, there's a benefit, and
particularly if you can find evidence-based information about what they do.

But it's important to know that if they are having an effect, when it comes
to your body, they're no different from industrial pharmaceuticals. The
meds interact with some molecules and change the way something works,
regardless of what you call them. It's just that with the alt-meds, we
often don't know anything else. By their 'natural', usually untested
nature, they leave us uninformed.

Masters Thesis on CFS by Lara Bell

Source: Victoria University of Wellington (New Zealand)
Date: February 20, 2013

The Disrupted and realigned Self: Exploring the narratives of New
Zealanders with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis
Bell, Lara Joyce Milka


Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) causes
pronounced, debilitating fatigue that is not alleviated by rest, along
with muscle and joint weakness, pain, cognitive difficulties and can
be worsened through mental and physical exertion. However, it is also
without an aetiology, and there is little consensus amongst both
medical and patient spheres as to what CFS/ME actually is. In this
thesis I draw on interviews with people with CFS/ME and participant
observation in a patient-led support group in order to explore the way
in which CFS/ME shaped participants' identities and narratives of the
self. I argue that participants moved through two stages that I call
'The Disrupted Self' and 'The Realigned Self'. Falling ill with CFS/ME
rapidly disrupted participants' understandings of the bodies, their
position within their family and the community, interactions with
doctors, and all the usual markers on which they had previously formed
their self-identities. In this state, I argue that participants and
those with whom they engaged viewed both CFS/ME and my participants as
liminal, 'betwixt and between' (Turner 1969) social roles and
contemporary New Zealand ideals of illness, the individual, and the
'sick person'. As the initial disruption and confusion of falling ill
subsided, however, my participants worked to develop a new secure
self-identity, the 'Realigned Self'. They move into a normalised
long-term liminal state by prioritising their health, adjusting their
expectations of their body, developing their own conception of the
aetiology of CFS/ME and forming a positive narrative of their new
lives. This identity work utilised wider cultural ideals about the
active, responsibilised and authentic self; common to late modern
contemporary life (Beck and Beck-Gernsheim 2001, Desjarlais 1994,
Giddens 1991, Rose 1996). Yet this realignment was often not reflected
in the views of my participants' friends, families and doctors. This
illustrates the diverse perspectives and different degrees of
liminality that exist within experiences and narratives of CFS/ME and
contested illnesses.

(c) 2013 Victoria University of Wellington

Thursday, February 28, 2013

Inside medicine : High drug costs

We have a problem that no one seems willing to discuss. The costs of medications are going through the roof.

Take for example cancer medicines. Let's say we want to treat metastatic melanoma – a skin cancer.

The cost of medication alone is $120,000 for four treatments, which might extend life a few months.

* * *

Dr. Wilkes asks the crucial question, "How much are we willing to pay for an extra month or two of life?"

If insurance/Medicare/Medicaid is willing to pay $120,000 to keep a cancer patient alive for a few months, then why would they not be willing to pay $20,000 a year to get a CFS patient back to work with Ampligen?  This has been one of the concerns rumored around about why FDA won't approve Ampligen -- because insurance companies don't want to pay the high price for it.  As long as it's considered "experimental", they don't have to.


Read more here:

Could a B-12 Deficiency Be Causing Your Symptoms?


 Could a B-12 Deficiency Be Causing Your Symptoms?
By Dr. Dana Myatt, NMD, and Mark Ziemann, RN†

Less than 20 years ago, patients complaining of fatigue were often given a "tonic shot" by their doctor. Many people claimed that this worked like magic to improve their energy levels. What was this miracle tonic? A simple injection of vitamin B-12.

Although the practice of administering B-12 injections has fallen out of favor, modern medical science now understands why vitamin B-12 supplementation makes people feel better, and the reasons extend far beyond just the "placebo effect" of receiving a shot.

The Far-Reaching Effects of Vitamin B-12 Deficiency

Vitamin B-12, called "cobalamin" because it contains the mineral cobalt, is required for a staggering number of physical functions and chemical reactions. Best known for its participation in the manufacture of red blood cells, B-12 is also needed for production and maintenance of the myelin sheath that surrounds nerves and for production of DNA, the genetic material of all cells. And that's just the beginning.

The serious health consequences of vitamin B-12 deficiency can adversely affect nearly every system in the body.

Energy: Even minor deficiencies of vitamin B-12 can cause anemia, fatigue, shortness of breath and weakness.

The Nervous System: Deficiencies of B-12 can cause neurological changes including numbness and tingling in the hands and feet, balance problems, depression, confusion, poor memory and Alzheimer's-like symptoms. Long-term deficiencies of B-12 can result in permanent impairment of the nervous system.

The Gastro-Intestinal System: B-12 deficiency can cause decreased appetite, constipation, diarrhea or alternating constipation/diarrhea, decrease in body weight and abdominal pain.

The Immune System: Vitamin B-12 is necessary for normal functioning of white blood cells. Studies show that B-12 helps regulate Natural-Killer T-cells and prevents chromosome damage.

The Cardiovascular System: Vitamin B-12 participates in the conversion of homocysteine to methionine. Elevated homocysteine levels are a known independent risk factor for heart attack, stroke and thrombosis. Without adequate B-12 levels, homocysteine levels typically rise.

Special Senses: Degenerative changes in the central nervous system caused by B-12 deficiency can also affect the optic nerve, resulting in blue-yellow color blindness.

Other symptoms of vitamin B-12 deficiency include sore mouth or tongue.

With so many physical functions at risk, it is easy to understand why knowledgeable clinicians and researchers consider B-12 supplementation beneficial.

Are You At Risk for a Vitamin B-12 Deficiency?

Medical science once believed that few people were vitamin B-12 deficient. This false assumption may stem from the fact that vitamin B-12 is produced in the body by a normal, healthy population of bowel bacteria.

Secondly, unlike other water-soluble vitamins, B-12 is stored in the liver, kidneys and other tissues. Deficiencies of B-12 often appear so slowly and subtly as to go unnoticed, and blood tests for vitamin B-12 levels miss early deficiency states at least 50% of the time.

So, who is at risk for vitamin B-12 deficiency? Recent research shows that a much larger segment of the population is likely deficient than previously thought.

Because assimilation of vitamin B-12 from food requires adequate stomach acid and intrinsic factor, and because stomach acid typically declines with age, people over 50 were once thought to be the biggest "at risk" population for B-12 deficiency. Previous studies showed 3% to 39% of seniors to be vitamin B-12 deficient, but newer studies suggest that number may be as high as 72% to 78%.

Vegetarians and vegans are another population believed to be at high risk for B-12 deficiency, in part because of low animal food intake of vitamin B-12 and also because many vegetable sources such as seaweed must be consumed in large amounts in order to provide adequate vitamin B-12.

Other high-risk groups for B-12 deficiency include:

  • Those who use acid-blocking or neutralizing drugs (such as Prilosec, Prevacid, Nexium and others), or drugs which impair intestinal absorption (such as Metformin, Questron and Chloromycetin),

  • People who have had gastric surgery,

  • And people who have chronic illnesses such as ME/CFS and Fibromyaligia. (For an explanation of two complex models suggesting a connection between vitamin B-12 deficiency and ME/CFS - The Nitric Oxide Cycle and the Methylation Cycle - see "Deficiency in ME/CFS and FM May Provide Clues & Relief")

Bacterial overgrowth of the small intestine, which occurs frequently in people with low stomach acid, is a predisposing factor for B-12 deficiency because the bacteria themselves use vitamin B-12.

The most recent and disturbing studies suggest that vitamin B-12 deficiency is more prevalent in young adults than previously thought. One study found that vitamin B-12 deficiency was similar in three age groups (26-49 years, 50-64 years, and 65 years and older), but that early symptoms were simply less apparent in the young.

This study also found that those who did not take a vitamin B-12 containing supplement were twice as likely to be deficient as supplement users, regardless of age.

Four Forms of B-12 - Which One is Best?

Cobalamin is a collective term for four closely related forms of B-12 - cyanocobalamin, methylcobalamin, hydroxycobalamin, and adenosylcobalamin (dibencozide).

View B-12 products at »

Cyanocobalamin, the most common form of B-12 found in nutritional supplements, has the lowest biological activity and must be converted in the liver to methylcobalamin or adenosylcobalamin before it can be utilized.

Because it can be converted to other forms of B-12, cyanocobalamin can be considered the "mother form" of B-12. However, this conversion is inefficient and some people may not benefit from cyanocobalamin due to lack of assimilation or conversion.

Methylcobalamin is considered by many researchers to be the most active form of vitamin B-12. It protects the nervous system by regulating glutamate-induced neuronal damage (common in aging) and promoting nerve cell regeneration.

Methylcobalamin is the only form of vitamin B-12 that participates in regulating circadian rhythms (sleep/wake cycles). It has been shown to improve sleep quality and refreshment from sleep, as well as increasing feelings of well-being, concentration and alertness.

Adenosylcobalamin (dibencozide), the second highly active form of vitamin B-12, is essential for energy metabolism. It is required for normal myelin sheath formation and nucleoprotein synthesis. Deficiencies are associated with nerve and spinal cord degeneration.

Hydroxocobalamin is a unique form of B-12 that participates in detoxification, especially cyanide detoxification. Cyanide levels are often elevated in smokers, people who eat cyanide-containing food (like cassava) and those with certain metabolic defects.

Excess cyanide in the tissues blocks conversion of cyanocobalamin to methylcobalamin or adenosylcobalamin. In such instances, hydroxocobalamin may be the vitamin B-12 of choice. Hydroxycobalamin is FDA-approved as a treatment for cyanide poisoning.

Oral Vs. Injectable: Which Delivery System is Preferred?

Although many people including some physicians still believe that injectable vitamin B-12 is the preferred route of administration, it is well-known and widely accepted that oral vitamin B-12 is equally as effective as injection in treating pernicious anemia and other B-12 deficient states.

Conclusions and Recommendations

  • Vitamin B-12 deficiency is far more widespread than previously thought, with up to 30% of young people affected and possibly as many as 78% of the over 50 population suffering from deficiency.

  • Those at special risk include:
    • Seniors,
    • Vegetarians and vegans,
    • People taking acid-neutralizing drugs or various other drugs, and
    • Patients with cognitive impairment and/or chronic illnesses.

  • The U.S. Institute of Medicine recommends that adults over 50 obtain their vitamin B-12 from supplements.

  • Because symptoms of vitamin B-12 deficiency often manifest months or years before B-12 blood tests become abnormal, early deficiencies are often missed.

  • Symptoms and side effects of B-12 deficiency are many and varied, can mimic other diseases such as Chronic Fatigue Syndrome, and can produce irreversible changes of the nervous system if not corrected early.

  • Oral vitamin B-12 supplementation is extremely safe, as effective as injections, comparatively inexpensive, and more convenient than injections.

  • Those at risk of vitamin B-12 deficiency or with symptoms suggestive of B-12 deficiency should consider adding this important nutrient to their supplement protocol.

For more information about B-12 products, visit or call (800) 366-6056.

† Dr. Dana Myatt, NMD, is a practicing naturopathic family physician, educator, author, and speaker with a special interest in nutrition. She lectures widely to medical and lay audiences, and hosts a website ( Mark Ziemann, RN, Dr. Myatt's husband and collaborator, is also an educator, author, and speaker specializing in holistic nursing practice and patient education.

For references, please see original article at

ProHealth, Inc. | 2040 Alameda Padre Serra | Santa Barbara, CA 93103 USA
Customer Service: (800) 366-6056 | International: 001.805.564.3064

Wednesday, February 27, 2013

White House Grants Aaron Swartz's Wish: Taxpayer-Funded Research Will be Free

MS Light? | X Rx Blog

Reading about MS, thinking about my own clinical presentation and putting it together with everything we have learned since XMRV entered our lives, ME/CFS may exist on a spectrum with MS, in the same way that Aspergers Syndrome is part of the autistic spectrum. Certainly, we are a variation on a theme. I have called it MS light before and I think it is a good working hypothesis for now. Up To Date's summary on MS is here. Note the many similarities, genetics, epidemiology (including cluster outbreaks), possible problems with the Hepatitis B vaccine. It seems to me our best hope post XMRV is to ride on the coattails of MS, even though it is pathetic that we need to, given that there are at least three times as many of us.

Tuesday, February 26, 2013

American doctors are overpaid: Medicare is cheaper than private insurance

many American doctors do believe that they would be crushed if they were paid only Medicare rates. They insist they're hard-pressed as it is, barely getting by, and practically treat these Medicare cases as acts of charity. There's no way they could swallow those reimbursement rates without the whole system collapsing.

But that's not remotely true. The last time the OECD looked at this (PDF), they found that, adjusted for local purchasing power, America has the highest-paid general practitioners in the world. And our specialists make more than specialists in every other country except the Netherlands. What's even more striking, as the Washington Post's Sarah Kliff observed last week, these highly paid doctors don't buy us more doctors' visits. Canada has about 25 percent more doctors' consultations per capita than we do, and the average rich country has 50 percent more. This doctor compensation gap is hardly the only issue in overpriced American health care—overpriced medical equipment, pharmaceuticals, prescription drugs, and administrative overhead are all problems—but it's a huge deal.

Monday, February 25, 2013

How to Find a Legit Work-From-Home Job | Next Avenue

Find listings online. A growing number of job boards specialize in work-from-home jobs.

Two of my favorites are and, which carefully screen listings and also post helpful articles and resources for virtual workers. Their job listings range from one-time gigs (such as a data entry project) to salaried, professional positions.

You can also search for virtual jobs on most of the larger job boards, such as and, by using their advanced search filters.

To ferret out the most appropriate listings when looking for telecommuting jobs online, combine "telecommuting" or "work from home" with the type of work you want, such as "telemarketing" or "copy editing."