Thursday, October 4, 2012

Lysine, Turmeric for Fibromyalgia & Chronic Fatigue Syndrome

Lysine, Turmeric for Fibromyalgia & Chronic Fatigue Syndrome

By Adrienne Dellwo, Guide
October 3, 2012

Supplements are a big part of the treatment regimen for many of us
with fibromyalgia and chronic fatigue syndrome. I'm no exception - in
fact, I consider my supplements a major reason for my long-term

Among my double handful of supplements, you'll find several of the
"usual" suspects for us: 5-HTP, vitamin D, Omega 3, etc. You'll also
find some that are less common, including lysine and turmeric.

The full post can be read here:

Wednesday, October 3, 2012

Why are those pretend-sick people so darned UPPITY? | Chiller

"GET has a dreadful reputation among ME sufferers, as it demands that the sufferer does precisely what they are unequipped to do – exercise. This approach has pushed many people from a workable, but very limited "norm", back into full relapse. ... Which I know puts me in relapse, because I faithfully tried it for the first three years I was housebound with this condition, and spent the entire time yo-yoing in and out of relapses. Yet I kept trying. I am not unusual in this. People with ME will try anything that might help them get better. We are – and I make no apology for this – desperate to get our lives back. All of us."

15 Foods That Fight Chronic Pain - iVillage

Monday, October 1, 2012

Confessions of a Sick Person | Psychology Today


I know a woman with a progressive disease that has her confined to a wheelchair and has affected her ability to speak clearly. But she and her husband are able to travel. They go on vacations and they visit her children out of town. In her immobility, in some ways, she's more mobile than I am. I've sometimes envied her even though it's likely that I'll outlive her. I'm not proud of this feeling, but there you have it. This is a confession piece after all.


* * *

You tell 'em, Toni!  A friend once offered to buy me a wheelchair or a scooter or whatever I wanted, unable to fathom that the problem with leaving the house wasn't walking -- it was that I passed out if I got off the horizontal.  A scooter wasn't going to help that.

Mental Illness Meme

Mental Illness Meme
September 25th, 2012
Jennie Spotila/Occupy CFS

When it comes to press coverage of CFS and XMRV, there is a pervasive
mental illness meme that must be addressed. It goes something like

XMRV/viruses do not cause ME/CFS. Therefore, it could be a mental illness.
Patients strongly object to characterization of ME/CFS as a mental
illness. A small number of patients get nasty, make threats, or make
it personal.
This crazy behavior by a small number of patients proves the point
that ME/CFS could be a mental illness.
The strong resistance by ME/CFS patients to the mental illness
explanation must come from society's belief that mental illness is not
"real" or "legitimate" illness.
The small number of extremists are to blame for researchers, doctors,
and journalists not wanting to touch the illness with a ten foot pole.

After the publication of the Lipkin study last week, there were
several articles along these lines. The meme is particularly common in
the British press, including articles in The Telegraph and The Daily
Mail. Predictably, the comments on these articles follow the pattern
of patients strongly objecting to the mental illness meme and offering
physiological evidence that refutes it, and others claiming that the
absence of biological evidence proves that patients are suffering from
exaggerated lethargy or a desire to avoid reality. Things generally
spin out of control from there. But I think getting caught in the
meme's whirlpool misses the point; let's pick apart the meme's logic.

The full post can be read here:
* * *
I've had to point this out to several people who want to be activists, that their hysterical rantings and threats do us more damage than good.

Sunday, September 30, 2012

A Chat with Dr. Lipkin

BunsenBwog: A Sunday Morning Chat with W. Ian Lipkin

Bwog's avant-garde epidemiologist, Zach Kagan, ventures out on this
fine Sunday armed with sleep inertia and a healthy sense of adventure.
He discusses recent development in Chronic Fatigue Syndrome (CFS) with
our very own Professor Lipkin.

Professor W. Ian Lipkin has been featured in several editions of
BunsenBwog, and why wouldn't he be? As the director of the Center for
Infection and Immunity and John Snow Professor of Epidemiology at the
Mailman School, Prof. Lipkin has metaphorical fingers in so many
metaphorical pies that he ought to get metaphorical carpal tunnel.
BunsenBwog has covered his work on the Borna Disease Virus, Kawasaki
Disease, and the film, Contagion, where he acted as a creative
consultant (and provided inspiration for one of the characters). But
these are but tiny portions of the research Dr. Lipkin contributes to
at the CII. That is why I was so excited when Prof. Lipkin agreed to
speak with me about the CII's latest findings on Chronic Fatigue

The first thing you learn about W. Ian Lipkin is that he's extremely
and perpetually busy, making it difficult to find a time to actually
sit down and talk. After a week of negotiations with his personal
assistant, Prof. Lipkin decided to E-mail me himself. At 6 A.M. on a
Sunday. "Best for me would be 9am."

Had an obnoxious ray of sunlight not accidentally woken me up at 8:30
A.M., I probably would have slept through my only shot at an
interview. Well, it was what I wanted, wasn't it? So I set forth,
sleep deprived and slightly hungover, to meet Lipkin in his 105th
street townhouse home. When I found his house, Prof. Lipkin was
waiting in the kitchen, eating a sandwich and fiddling with an
espresso maker. Thankfully, some of that coffee found its way into the
miniature mug being handed to me. And, eventually, we started talking
about the CII.

Chronic Fatigue Syndrome is a strange beast. While its name might
suggest that it's some acute form of senioritis, in reality it's a
debilitating illness which over a million Americans suffer from.
Symptoms extend beyond prolonged fatigue; CFS sufferers also
experience muscle pain, unsatisfying sleep, headaches, impaired
memory, and mental fog as well as a host of other flu-like symptoms.
While some symptoms may suggest that a viral infection is the culprit
behind CFS, many scientists are not sure. In fact, there is much
debate in the medical community over what exactly causes CFS. The
biggest lead comes from a 2009 paper published in Science, which
linked CFS to two viruses: XMRV and pMLV.

However, the paper's results were never successfully replicated by
other laboratories, which sparked skepticism among researchers. And
so, as Lipkin puts it, "We went ahead and set up a study to test this
thing once and for all." Using blood samples from 147 patients with
CFS and 146 controls, researchers searched for traces of XMRV and
pMLV. In the end none of the participating groups found any presence
of genes characteristic of the two viruses in question. The conclusion
is that the 2009 discovery may have been the result of some sample
contamination. For now the true cause of CFS is again a mystery.
Personally, Lipkin believes that CFS may not be one disease but
instead a category of symptoms caused by a large set of factors, which
will present new challenges to CFS researchers.

But to Lipkin the CFS study is just one of many side projects. For
example, he has a team down in Grenada investigating why a tilapia
fish farm is experiencing an 80% mortality rate. But while these
projects are important, Lipkin considers them his "day job… it's easy,
almost automated." We talked about his long term interests:
epigenetics, cancer prediction, preventative medicine, and creating an
international network of infectious disease specialists. It's that
last one that he feels is most important for improving world health.
"You don't need 65 people [referring to the number of researchers at
the New York CII], just 600 feet and a sequencing machine."

Somehow the conversation segued from morality of eugenics ("look, I
don't want to create Aryan supermen") to diseases caused by
gastrointestinal fauna to Bill Clinton's eating habits. "There's this
picture of Bill Clinton at Katz's deli eating two whole sandwiches and
fries," Lipkin remembers, that being before, of course, Clinton's
quadruple bypass surgery and later implantation of two coronary
stents. Now he's a vegan, Prof. Lipkin informs me. Absentmindedly I
reply that so is Clint Eastwood.

"I hadn't heard of that, let's look it up." He pulls out his laptop
and starts Googling "Clint Eastwood + Vegan." "Now I'm really
intrigued." After only a few clicks, he found an article claiming
Eastwood has invited prominent members of the GOP to his place for
steak dinners. "I don't think he's a vegan if he's eating steak
dinners," Prof. Lipkin tells me with a grin, "another myth bites the