Friday, July 16, 2010

Government Agents Uncover Medicare Fraud Operations in Five Cities

"a medical biller who alone was charged with submitting more than $49 million in fraudulent services"

To put that in perspective, over 4000 years of SSDI payments to the average disabled person.  Yet some people want to focus all efforts on rooting out fraud by people falsely claiming Disability benefits, believing that this is the easiest way to commit fraud.  (Clearly, they haven't had to jump through all the hoops to get approved for SSDI -- the first published case on the subject of CFS, Reddick v. Chater, it took her 10 years and multiple appeals to finally get her benefits.  This is not something where you mail in a form and a week later get your first check!)
 
 
 
 
 
 
 

Mom Finds Cure Online After Doctors Fail To

 
 
She figured out on her own that Hayley had a rare but curable condition known as POTS, or postural orthostatic tachycardia syndrome.

POTS, which Hayley suffered from for nine long months before she got the proper treatment, is difficult to diagnose because it is unusual and its symptoms -- stomach aches, nausea and vomiting, racing heart -- are common for a variety of other conditions, according to AOL's children's health specialist Dr. Jim Sears.

"It's pretty rare," Sears, a pediatrician who hosts "The Doctors," told AOL Health. "[Hayley's experience] is the typical story of someone who has vague symptoms. I'm not surprised that nobody could figure this out."

POTS affects the autonomic nervous system and causes a host of random, unpleasant side effects: fatigue, violent vomiting, intolerance to exercise, unquenchable thirst and tachycardia, or rapid heartbeat. Only about 1 percent of all teenagers are diagnosed with the syndrome, two-thirds of them girls, and about 80 percent of those who do have it are female, most of them of child-bearing age.
* * *
Many CFS patients have POTS.  Some have found help from drinking water with sea salt.
 
 
 
 

Delay in Release of Study on Chronic Fatigue Syndrome Prompts an Outcry

 

Now we've made the NY Times with quotes that make it clear that it's not IAIYH.
 
We've gone mainstream.  We WILL be noticed.  And then we will be taken seriously.

Thursday, July 15, 2010

WSJ Blog on XMRV

Potential XMRV-Chronic Fatigue Syndrome Link Not Easy to Tease Out -  Health Blog - WSJ



The controversy surrounding XMRV, a virus that has been linked to 
chronic-fatigue syndrome and prostate cancer, has been heating up 
recently.

Earlier this month, CDC researchers published a paper in Retrovirology 
that reported the absence of XMRV in either the CFS patients studied 
or healthy controls. A much-anticipated study by researchers from the 
FDA and NIH supposedly reached a different conclusion, finding the 
virus in the blood of CFS patients. It's expected to run in the 
journal PNAS but has yet to be published.

So lots of people are waiting for answers — patients anxious to find 
out whether their disease is linked to XMRV, scientists interested in 
learning more about what is only the third known human retrovirus and 
public health officials trying to determine whether XMRV could affect 
the nation's blood supply.

And that wait may not be a short one, say experts participating in a 
webinar today sponsored by the advocacy group CFIDS Association of 
America. Vincent Racaniello, a professor of microbiology and 
immunology at Columbia University, said that there's a lot of work yet 
to be done in patients in order to answer the key questions 
surrounding the issue, and the full dimensions of the XMRV story will 
take time to understand.

"We can learn a lot from history," he said on the webinar, noting that 
it took 15 years from the time clusters of AIDS patients were 
identified to the development of effective therapies. Racaniello 
doesn't study XMRV in the lab, but he blogs about the controversy.

In a follow-up chat with the Health Blog, Racaniello said that so far, 
all the published studies have been done in relatively small numbers 
of patients — 50 or 100 people.

What's needed to really get answers, he says, is a 500- or 1,000-
person, federally funded study conducted at more than one research 
site. Ideally participants would be existing CFS patients who'd be 
available to be interviewed for detailed medical and case histories, 
and who could give fresh blood samples. And centers would use uniform 
definitions of CFS and lab methods, he said.

Another webinar participant, Lucinda Bateman, an internist who 
evaluates CFS patients at her Salt Lake City clinic, says that up 
until now there's been "no consistency in the way we diagnose and 
treat patients" with CFS. Potential treatments for XMRV infection 
exist, she says, but there are plenty of questions about which are 
safe and effective — and sorting all that out will take (you guessed 
it!) — time.

Still, that's not to say that the scientific process — and the debate 
— hasn't been fruitful, she says. Even negative studies help shape the 
direction of future research, and the differing resultsof the 
published studies have led to greater scrutiny of the way CFS is 
defined.

Interest in CFS is growing in major academic centers and attracting 
more scientists. And more people are donating money to help fund CFS 
research, she adds — which eventually should lead to the kinds of 
trials that Racaniello and others want to see done.
 
 
 
 
 
 

Monday, July 12, 2010

Sadness, grief, depression, anxiety and M.E. (A Nutritional Approach)

 
*please repost* *permission to repost* *please repost*

A new HFME paper is available: Sadness, grief, depression, anxiety and M.E.
(A nutritional approach)

This paper looks at questions such as: Why are sadness and grief NOT the
same as clinical depression? What is the role of nutrition in minimising or
treating problems of depression or anxiety? Which supplements can help with
mental health issues? What tests can be used to diagnose certain health
issues which may be the cause of mental health problems in some cases?

(As you can see, the focus on nutritional, herbal and orthomolecular
medicine continues this month, as it will for several more months, before
the more 'usual' service is once more resumed. As I'm sure many of you will
understand, it is far easier to write on a single topic exclusively for a
time, with M.E.)

--------

Sadness, grief, depression, anxiety and M.E. (A nutritional approach) by
Jodi Bassett July 2010

http://www.hfme.org/researchsgdandme.htm

An excerpt:

Sadness, grief or reactive depression can occur in M.E. as a result of the
severe restrictions on daily living and basic communication, the extreme
loss of quality of life, uncertainty or despair over welfare benefits and
the money needed to support basic living, as well as the lack of acceptance,
ridicule and neglect from the media, society, doctors and even close friends
and family members that so often accompany M.E.

Feelings of sadness and grief are NOT medical problems that need to be
treated, they are normal and healthy reactions to traumatic events.
Where
feelings of sadness start to become severe and have a large impact on daily
life, or there are thoughts of suicide, the problem may become what is known
as reactive depression; depression caused by life events (and which is not
natural or endogenous).

Anxiety may also become a problem for M.E. patients, this may occur as a
reaction to M.E. and the stresses that come with it, or may in fact be a
symptom of M.E. (as M.E. affects all aspects of the brain and CNS). When
symptoms such as anxiety or emotional lability or feeling 'hyper' and
talking very fast etc. are part of the damage to the CNS caused by M.E.,
they will improve as the disease improves.

(Emotional lability might manifest as feeling fine and happy and not at all
upset, but then crying, perhaps even uncontrollably, at a 'touching' TV
commercial or a commercial featuring a cute animal or baby, for example.
This sort of symptom is very different to actual depression. Feeling 'hyper'
and talking fast are caused by the damage to the CNS, and can also occur
after overexertion when the body releases a flood of adrenaline to cope with
being placed in physiological difficulty.)

Depression and anxiety have many causes and how well any treatment will work
depends on the actual cause of symptoms. ANY 'one-size-fits-all' approach is
doomed to failure, for the majority of people.

It is probably a good idea to start with the safest and least risky
approach, which would be the nutritional approach. Relaxation, mediation and
breathing exercises can also be helpful, particularly when combined with a
nutritional approach. Maintaining relationships with friends and family and
talking to those in a similar situation to you is also very important. (See
the 'Mediation and relaxation exercise and M.E.' and 'Tips for coping with
M.E. emotionally' pages for more information.)



The nutritional approach to treating depression and anxiety

Depression and anxiety can also occur in M.E., as well as the general
population, due to a lack of certain nutrients. Severe illnesses deplete the
body of certain vitamins and minerals and enzymes etc. and increase the
daily requirement of these substances. The brain is far more sensitive to
biochemical imbalances and nutritional deficiencies than any other organ of
the body. Lack of nutrients and an excess of 'anti-nutrients' such as lead
or chemical additives can cause many different mental health symptoms.

For some people, symptoms of anxiety and depression completely resolve once
magnesium deficiency or vitamin C deficiency is treated. The same may be
true of other substances such as the B vitamins as well.

It is also important to be aware that while there may be solid reasons for
feelings of depression or anxiety etc. due to life circumstances,
nutritional deficiencies and issues of toxicity could be making these
symptoms far worse than they would otherwise be. Correcting these issues may
make some symptoms much milder and/or make stressful events easier to cope
with and so on.

The first step in trying to improve symptoms of depression and anxiety
through nutrition is to clean up the diet. Following the dietary guidelines
recommended on HFME can improve symptoms of depression and anxiety, in
several different ways.

Some deficiencies may not be able to be resolved through diet alone,
however, and may require supplementation. Some of the most common
supplements that can help to treat or improve depression and anxiety
including the following:

1. Magnesium 800 - 1000 mg or more (depending on individual need), in 4
divided doses. Transdermal magnesium may be a better choice for depression
as it also boosts DHEA levels (and so all the hormones that are made from
DHEA) which can also improve depression in some people. Over 80% of people
in the western world are low in magnesium. Low magnesium levels are the sole
cause of depression, restlessness, anxiety and panic attacks in a
significant percentage of people. For more information see the 'Magnesium
and M.E.' page.


2. A good quality multivitamin and mineral supplement or B complex product
containing adequate amounts of each of the B vitamins. Vitamin B1 50 - 100
mg, B2 50 - 100 mg, B3/Niacin 500mg (subclinical deficiencies of vitamin B3
can cause symptoms of agitation and anxiety), B5 100 mg + (this vitamin is
needed for hormone formation and the uptake of amino acids and the brain
chemical acetylcholine, which combine to prevent certain types of
depression), B6 50 - 100 mg (vitamin B6 is needed in the manufacture of
serotonin, melatonin and dopamine), B12 500mcg +, folate 800 mcg + (folate
is necessary for the production of SAM (S-adenosyl methionine), choline,
inositol 1 - 2 g (at this dose, inositol may improve depression and anxiety
and sleep).
     If you do not feel a noticeable positive effect from basic B vitamin
supplementation within 2 - 4 weeks, buy a bottle of coenzymated sublingual B
complex to try at a dose of 1 daily (or 2 daily to start with). This product
may be essential if your body does not coenzymate B vitamins very well.
(This can occur where illness is severe).
     Make sure to take extra vitamin B6 if you are also taking the
contraceptive pill or hormonal replacement therapy. These drugs (as do many
or even all drugs) deplete vitamin B6. (One of the signs of vitamin B6
deficiency is the inability to recall dreams.)


3. Vitamin C, minimum dose 1 - 2 grams daily, although 5 - 10 g or more may
be needed by some people to improve symptoms of depression (and other
symptoms known to be improved with vitamin C). One of the most common
effects of inadequate vitamin C is depression.
     Vitamin C plays an important role in the production of serotonin, it
catalyzes the manufacturing of serotonin. Serotonin is a brain chemical, a
neurotransmitter, responsible for your mood. Vitamin C is therefore one of
the valuable natural antidepressants for patients with depression associated
with low level of serotonin. Andrew W. Saul PhD explains how to 'make your
own norepinephrine' as follows,
A depletion of the neurotransmitter called norepinephrine may result in poor
memory, loss of alertness, and clinical depression. The chain of chemical
events in the body resulting in this substance is: L-phenylalanine (from
protein foods) -> L-tyrosine (made in the liver) -> dopa -> dopamine ->
norepinephrine -> epinephrine.
     This process looks complex but actually is readily accomplished,
particularly if the body has plenty of vitamin C. Since one's dietary supply
of the first ingredient, L-phenylalanine, is usually adequate, it is more
likely to be a shortage of vitamin C that limits production of
norepinephrine. Physicians giving large doses of vitamin C have had striking
success in reversing depression. It is a remarkably safe and inexpensive
approach to try....

(excerpt ends)

To read on or view a reference list for this paper, see:
http://www.hfme.org/researchsgdandme.htm

-------

Important notes on using the HFME's treatment information - Summary. Please
read this information before starting any new treatment

. For the best results, an individualised nutrition and supplementation plan
should be created in partnership with a qualified holistic practitioner.
Ideally, this practitioner would also be the patient's doctor. The
information on HFME should be used only as an additional source of
information, as a starting point for the patient's own research efforts and
for discussions with their own practitioner.

. The best results are achieved by following a comprehensive nutrition and
supplementation plan, rather than only taking a small number of supplements.

. As much reading as possible should be done before starting any new
treatment   Read all of the information about the treatment available on
HFME in full and, if possible, some of the items in the relevant extra
recommended reading sections as well. Read as much and as widely as you can.
     The information on general M.E. treatment on the HFME website is best
read together with one or more (or all) of the following books: The
Vita-Nutrient Solution, Orthomolecular Medicine for Everyone: Megavitamin
Therapeutics for Families and Physicians, Fire your Doctor: How to be
Independently Healthy and The Optimum Nutrition Bible (and also perhaps one
of the books on vitamin C). Borrowing or buying these books and combining
the information in them with the information on the HFME site (or book) is
highly recommended.

. Before starting any new treatment the patient should: (a) make sure they
are aware of all the cautions relating to using it safely, such as whether
it must be taken with food or not, with other related supplements or in
divided doses, (b) check that it is compatible with all current medications
(and supplements) being taken, (c) check that it is safe for any other
conditions they may have (such as diabetes or kidney problems), and (d)
discuss it with their doctor or qualified holistic practitioner (if at all
possible).

. Any new supplement should be started at a low dose and the dose should
only be raised gradually.  If you are sensitive to supplements, start at
minuscule dose: perhaps 1/10th of the normal dose or less, or a few crumbs
of a crushed tablet taken once a week. Try only one new treatment at a time,
if possible. (Simultaneously starting 3 or 4 or more of the treatments
listed in 'A quick start guide to treating and improving M.E.' may cause
problems.)

. It should not be assumed that 'natural' means safe. Vitamins, minerals,
enzymes and herbs etc. taken at medicinal doses can have drug-like effects
and can potentially cause significant relapse or worsening of some symptoms.
Reading as much as you can about each treatment and starting very slowly are
important with EVERY treatment.

. Taking supplements is not a replacement for eating well, getting enough
rest and avoiding overexertion, having good sleep habits, limiting emotional
stress and avoiding toxic chemical exposures. There is little point in
giving the body the substances it needs to try to heal itself while at the
same time causing more damage in other ways.

. The treatments mentioned here are certainly not miracle cures for
long-term M.E., and no promises can be made about outcomes.
     Promises of easy cures in many books and articles should be treated
with the contempt that they deserve! Many of these contemptible false
promises are made on the false assumption that 'CFS' means M.E., made in
many general books and articles on health, nutrition and vitamins.  Some
diseases misdiagnosed as 'CFS' may well be easily treated and cured, but
this has no relevance to M.E. patients any more than it does to MS patients.
     Particular treatments will not necessarily give particular outcomes.
The aim here is to give your body its best possible chance to at least
partly heal itself by giving it some of the basic tools and materials it
needs to heal itself. No specific level of improvement can or should be
guaranteed, with any treatment.

. HFME's collation of information on M.E. treatment is and will always be a
work in progress, as with any guide to treatment. M.E. patients and M.E.
experts are always invited and encouraged to submit any additional
information or comments they may have. It is recommended that readers
periodically check the HFME site for updates.

Disclaimer: HFME does not dispense medical advice or recommend treatment,
and assumes no responsibility for treatments undertaken by visitors to the
site. It is a resource providing information for education, research and
advocacy only. In no way does reading this site replace the need for an
evaluation of your entire health history from a physician. Please consult
your own health-care provider regarding any medical issues relating to the
diagnosis or treatment of any medical condition.

-------

The full paper (properly formatted) is available here:
http://www.hfme.org/researchsgdandme.htm

If you would like to link to this page, please do so using the link above
only. If you'd like to download a Word or PDF version of this text, please
click on the above link or use the links below:

http://www.hfme.org/Word/Treating_ME_The_Basics.doc
http://www.hfme.org/PDF/Treating_ME_The_Basics.pdf
http://www.hfme.org/LT/LT_Treating_ME_The_Basics.pdf


Best wishes,
Jodi Bassett
--
The Hummingbirds' Foundation
for Myalgic Encephalomyelitis:
www.hfme.org

'There is a curious contradiction at the heart of the drug-based approach to
depression. The treatment is based on correcting a biochemical imbalance in
the brain. So you might think a scientific approach would be to check
whether depressed patients actually had an imbalance and if so, exactly
which neurotransmitters were low so they could be given a boost. But that is
not what happens. Instead, the diagnosis of depression is based solely on a
checklist of psychological symptoms, which doesn't tell you anything about
what is going on with brain or indeed body chemistry.' Patrick Holford


* * *
Amen.  I suspect my bad reaction to anti-depressants is because they are pushing my chemistry further out of whack -- cortisol readings will be off in one direction for depression and the opposite direction in CFS, yet no doctor ever agreed to do that test which would've proven I was right and they were wrong. 
 
It's my particular hobbyhorse that no psych diagnosis (depression, anxiety, etc.) should be allowed to be put into a medical record until that diagnosis has been made by a licensed psychiatrist/psychologist -- no more amateur diagnoses by doctors who've taken Psych 101 and only think they know how to diagnose this stuff!