Saturday, May 17, 2014

Patients Share Human Side of Living in Pain amid Lawmaker Opiod Hysteria

 
A recent editorial in Journal of Pain Research, entitled "The damage done by the war on opioids: the pendulum has swung too far" discusses that "media sensationalism, neuromythology, and mischaracterization of pain patients as drug addicts has even deterred some prescribers from treating pain patients that they have successfully treated for years without problems of drug aberrancy".
 

But largely missing from the national conversation and media coverage are the voices and stories of the tens of millions of people that must endure pain on a daily basis.  Instead, the day-to-day struggles of these individuals (and their families) to achieve even a marginal quality of life are buried under an avalanche of commentary that stigmatizes and marginalizes these people.  That must stop…NOW. It's time for all of us to step back.

It's time for us to remember the people with chronic pain and to honor their humanity as they struggle to find some relief from debilitating pain.  And that's where I ask you, to help me, help you.

I want to amplify the stories of people living with chronic pain. 

Friday, May 16, 2014

Baffling Chronic Fatigue Syndrome Set for Diagnostic Overhaul

 
 
 
 

Doctors have long suspected brain inflammation as a potential cause, but no definite traces of it had been detected. New research, in the June issue of the Journal of Nuclear Medicine, shows for the first time distinct increases in inflammation in particular regions of CFS patients' brains.

Yasuyoshi Watanabe, director of the RIKEN Center for Life Science Technologies and professor of physiology at Osaka City University Graduate School of Medicine, and his colleagues studied positron emission tomography (PET) scans of the brains of 10 health controls and nine patients with CFS. "Many researchers and clinicians, including our group, thought of this before, but apparently no one tried it using PET," Watanabe says.

The research team found increases in inflammatory markers in regions including the amygdala, thalamus and midbrain in CFS patients who had more severe cognitive troubles. They found more of these markers in thalamus and cingulate cortex in individuals who reported worse pain. And they found higher traces of inflammation in the hippocampus in patients with severe depression.

 
* * *
Actually, I'll dispute that -- Hillary Johnson describes using brain scans in "Osler's Web" already ... but now it's out there in commonly-read literature, not just CFS circles.
 
 
 

MAY IS CFS/FIBROMYALGIA AWARENESS MONTH!

www.CFSfacts.org -- where we give you the facts and dispel the myths (also on Facebook)
Myths, with research cites: http://www.aacfs.org/images/pdfs/myths.pdf
Newest research blog: http://cfs-facts.blogspot.com/

Read our 16-page report of the 2014 IACFS/ME Conference

 
 

TO DOWNLOAD A PDF, 'Click to read' and then, when the supplement is loaded, choose the full screen option (the 'diagonal arrows' tool). Then click on the download tool at the top of the screen (it's just to the left of the cross which closes the file). Job done!

Tuesday, May 13, 2014

More than a gut feeling

 
http://www.mailman.columbia.edu/news/more-gut-feeling

More Than a Gut Feeling

Chronic fatigue patients raise funds for microbiome study by Ian Lipkin

May 12, 2014—Sarah*, an MIT computer science grad, first got sick
while working on a software project for an international NGO. Severe
cognitive and gastrointestinal symptoms were the first sign of what
would eventually be diagnosed as chronic fatigue syndrome. "I went
from running a triathlon to being unable to sit up for more than 15
minutes," she remembers. "I had a promising career working and
volunteering in areas that I was passionate about, and now my life has
primarily become about survival."

Sarah is one of more than 17 million people, including one million
Americans with the disease, which is also known as myalgic
encephalomyelitis, or ME/CFS. On May 12, patients and their families
mark International ME/CFS Day, but sadly there is almost nothing known
except that the disease involves the immune system and comes on with
flu-like symptoms or collapse following exercise. The medical
community remains baffled, and some even deny it exists or pigeonhole
as a psychological disorder.

Patients want answers. Battling through debilitating exhaustion and
"brain fog," Sarah and a group of patients around the world are
rallying to raise funds for an ambitious new study led by Ian Lipkin,
MD, director of the Center for Infection and Immunity at the Mailman
School. So far, they have brought in more than $55,000 from nearly 400
donors in 33 states and 20 countries through the website
MicrobeDiscovery.org.

In 1997, Dr. Lipkin was recruited by scientists at the Centers for
Disease Control and the Karolinska Institutet to lead a study looking
at whether Borna Virus was the cause of ME/CFS. It wasn't, but Dr. Lipkin was struck by the fact that three-quarters of the patients had evidence of immunological abnormalities.  "I was intrigued, and thought that resources should be invested in looking at other infectious triggers of disease," he says.  More than a decade later,
in 2010, Dr. Lipkin was called on again, this time by the National
Institutes of Health, to analyze prominent studies that had implicated
two viruses—XMRV and pMLV. Like borna virus, they were ruled out. But
Dr. Lipkin's search has continued, funded by the Hutchins Family
Foundation.

The clues have been leading to the little-studied ecosystem of
microorgansisms we carry around in our guts known as the human
microbiome. Dr. Lipkin's team has already found microbiome abnormalities in colon cancer, stillbirth, and autism, and he believes the microbiome is a fertile area for ME/CFS for the reason that the gastrointestinal tract is important in modulating immunity and has been implicated in several autoimmune disorders. The ambitious new
study, already outlined in detail, would examine viruses, bacteria,
and fungi that may play a role.  Once the culprit is identified, new
treatments using drugs, probiotics or a modified diet could come
quickly. "I think that the microbiome is going to be where the action
is," says Dr. Lipkin. "I am really eager to pursue that work."

Patients, many who have gastrointestinal symptoms, are convinced that
the microbiome will bring answers. Amy, a former occupational
therapist from New Zealand and member of the fundraising team, says,
"I don't think the gut and immune system connections have been looked
into enough in general and also the gut-brain axis. This is an
exciting area of research and we get to be part of it."

Donate to Dr. Lipkin's ME/CFS study.
https://giving.columbia.edu/giveonline/?schoolstyle=5881&alloc=21677

* Sarah is a pseudonym.

https://www.youtube.com/watch?v=blPb_zi8cPc

Post Polio Syndrome and ME/CFS: Common Ground - CFS Treatment Guide

 
Polio survivors need to ''conserve to preserve,'' conserve energy and stop overusing and abusing their bodies to preserve their abilities. Polio survivors must walk less, use needed assistive devices -- braces, canes, crutches, wheelchairs -- plan rest periods throughout the day and stop activities before symptoms start. Also, since many polio survivors are hypoglycemic, fatigue and muscle weakness decrease when they eat protein at breakfast and small, more frequent, low-fat / higher-protein meals during the day.
ISN'T EXERCISE THE ONLY WAY TO STRENGTHEN WEAK MUSCLES?

No. Muscle strengthening exercise adds to overuse. Pumping iron and ''feeling the burn'' means that poliodamaged neurons are burning out. Polio survivors typically can't do strenuous exercise to condition their hearts. Stretching can be helpful. But whatever the therapy, it must not trigger or increase PPS symptoms.

Monday, May 12, 2014

Madame Secretary Meet the ME/CFS Community: $50M Research Funding Campaign

 
 
Let's be the first patient community to send Nominee Burwell a welcome wagon, and make the "Obama Promise" on ME/CFS a mandate for her new job!

Dr Franky Dolan: Mr Thomas Hennessy, we will miss you. Thank you

 
 
 
 
Just a reminder that Tom Hennessy was the driving force behind starting May 12 Awareness Day....
 
#May12BlogBomb

My May 12 Blog Bomb

#May12BlogBomb
 
I was a dancer, softball player, and volleyball player -- not a couch potato.  So when I started spending my non-working hours lying down, it was obvious there was something very wrong. 

Then things got worse and I lost my paralegal job because I was functioning at about 10% during the day ... when I was at my desk instead of being in the ladies room for hours. 
 
Generally, I don't watch much TV, but suddenly I was becoming familiar with all the garbage shown during the day because I couldn't concentrate enough to read, and music on the radio clashed with the key of the ringing in my ears.  At least a little of what was being said on TV sank into my consciousness through the mental fog, though there were many times I'd wonder what happened, because I was suddenly watching some other show -- since I was home alone, there was no one to tell me whether I was falling asleep or having an absence seizure.
 
Trying to do my own housework and yardwork was making me sicker by the week.  Eventually, my body rebelled and I ended up horizontal for a couple years -- if I sat up for more than 5 minutes, I'd pass out.

Yet the doctors rejected the diagnosis I'd gotten from a virologist 12 years earlier, insisting that I was just depressed.  When the anti-depressants made me violently ill, I was accused of not wanting to get well and go back to work.  Oh, yeah, because the money fairy is going to drop cash down the chimney every month so I can pay my bills without working.  They kept insisting that I had to exercise "even if you hate it" -- um, remember what I said about being a dancer, shortstop, and volleyball ace? I don't hate exercise, but I do hate that exercising results in becoming even sicker.  The easiest way to differentiate CFS from depression is exercise -- the depressive returns energized and able to do more the rest of the day, whereas the CFS patient collapses and can't do anything more ... sometimes for several days afterward.  But every doctor at that medical group insisted he knew better than I did, and that I was mistaken if I thought that I recalled that previous attempts at exercise resulted in disaster, urging me to do far more than I was physically capable of.  Remember, I'd already pushed myself to the point of collapse; exercising via essential housework and yardwork had been too much a few months earlier, and now they wanted me to do even more physical activity?!  Their stereotypical paternalistic comments about knowing that "women don't like to sweat because it ruins their hairdo and makeup" didn't sit well with someone who loves exercise; it's harder for me to remind myself that my body won't allow me to dance the night away.

I finally found another doctor -- an osteopath -- open-minded enough to accept that this is NOT depression.  I have rashes and fevers and swollen glands and other things that are never ever a symptom of depression.  He doesn't know much about CFS, but he's willing to learn.  If I bring in an article about some new prescription someone is trying, he's willing to discuss with me the pros and cons (with the reminder that "all drugs have side effects ... some don't show up for 30 years").  Well, yes, I'm willing to put up with dying a few years sooner because I'm taking the drugs in order to have a little more functionality now.  Spending 23¾  hours a day in bed sliding in and out of consciousness is not "living".  There's no quality of life there.
 
There is no treatment, no cure, but sleeping pills and pain pills at least allowed me to get enough sleep that my body could start to heal itself.  It's been a long hard slog, but I'm up from being able to go out for a couple hours every other week (and spending the next 3-7 days recuperating) to being able to go out 3-4 days in a good week.  I'll never get back to 100%, but I'm a lot better than I was 10 years ago.

May 12 Blog Bomb

From: Sally KeelaToo Burch

The #May12BlogBomb exploded today! Such a HUGE response.

No less than 80 #May12thAwareness posts!

Thank you all!

http://bit.ly/1smvzzh
i.e.
http://sallyjustme.blogspot.co.uk/2014/05/May12BlogBombLinks.html
 
 
It's only 3:30 PM in California and just past noon in Hawaii, so May 12 is by no means over.  Let's see if we can blog bomb our way to 100 by midnight!
 

ME/CFS Medical Abnormalities


You'll hear a lot of people claiming there's nothing physically wrong with CFS patients.  Here's the proof that there really is:


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Send an EMAIL for FREE membership
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~
    >>>>> Help ME Circle <<<<
    >>>>   10 May 2014  <<<<
Editorship : j.van.roijen@chello.nl
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~

For private members the document mentioned
below is attached, but can also be found at the
Paradigm Change website: http://bit.ly/1jbIjTR

~jvr

````
ME and CFS Medical Abnormalities

With the current focus on the development of
revised definitions for the disease that the
government is now calling "ME/CFS," it seemed
possibly useful for all concerned to have an
easily accessible and organized summary
document listing all the peer-reviewed articles
demonstrating medical abnormalities in these
patients.

More than 500 peer-reviewed articles have been
published demonstrating a wide variety of
physiological abnormalities in patients with
"Chronic Fatigue Syndrome" (a condition that
encompasses patients with Myalgic
Encephalomyelitis).

A PDF summary includes citations and brief
summaries of each of these articles, organized
by type of abnormality and last updated on
05/06/14.

(Hopefully this is pretty complete, but please let
me know if you notice that I missed anything.)

I have sent this document along to a variety of
experts in the disease, including those serving
on the IOM committee, in the hope that they
will find it helpful.

Topics include:

* Overview

* Cancer Risk

* Cardiac Abnormalities

* Orthostatic Intolerance

* Tilt Table Test

* Other Cardiovascular Issues

* Exercise & Activity Intolerance

* Oxidative Stress & Inflammation

* Cytokines & Complement

* Rnase L

* Mitochondria

* Natural Killer Cells

* Other Immune Abnormalities

* Herpesviruses

* Enteroviruses

* Gut

* Candida

* Mycoplasma

* Parvovirus B19

* Coxiella Burnetii

* Borna Disease

* Stealth Virus

* Other Infections

* Endocrine System

* Brain Abnormalities

* Cognitive Impairment

* Gait Abnormalities

* Sleep Abnormalities

* Pain

* Muscles

* Physical Symptoms

* Physical Abnormalities

* Laboratory Abnormalities

* Channelopathies

* Lipids

* Carnitine

* Nutrients

* ME/CFS vs. Other Conditions

* HLA

* Gene Expression

Unfortunately, most of these abnormalities have never been covered by the mainstream news media, meaning that most people (including non-specialist physicians) have no idea that they have been shown to exist.

A document listing the small number of news
media articles on this topic that have been run
also is available (http://bit.ly/1jrfGak)

Best,

Lisa Petrison, Ph.D.
Executive Director
Paradigm Change


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

Candid Conversation with Lipkin


http://www.cfscentral.com/2014/05/candid-conversation-with-dr-ian-lipkin.html

Sunday, May 11, 2014
Candid Conversation with Dr. Ian Lipkin

Ian Lipkin, professor of epidemiology and neurology at Columbia,
recognized for his work on SARS and West Nile virus, science
consultant to the film Contagion, has been at work on what he admits
may be his toughest project to date: research into ME. From the Chronic Fatigue Initiative, Lipkin received $10 million, and his work so far has shown cytokine activation in the disease. Now he's in need of a million dollars for ME research into the gut biome and is making his plea directly to patients. To donate to the research, click here
or here.

Dr. Lipkin and I had a candid conversation about his ME research, the
government's thinking when it comes to ME and how to secure more
research dollars.

Mindy Kitei:  Where can people donate to your research?

Dr. Ian Lipkin:  Donate to our research. We're all in the same boat.
We're trying to find solutions to an important problem, so I want to
be very clear to your readers that it is their project. It was
organically developed in response to their needs, and their wishes,
and we're eager to serve.

The idea here is that we believe there is an infectious trigger...
that initiates immune activation and results in a number of different
abnormalities, which results in turn in this debilitating fatigue and
cognitive dysfunction, and all the other symptoms that are associated
with this disorder. Very similar to what you have with a low-grade but
persistent infection, typically with a virus, but can also occur with
some bacteria.

The idea is to find out what sorts of agents might be implicated in
this syndrome.  We have looked at peripheral blood mononuclear cells,
where we haven't found anything as of yet, although we're still
looking, but the area that is obvious to consider is the
gastrointestinal track because the gastrointestinal track is so
important in modulating immunity and has been implicated in autoimmune
disorders, not only those associated with gastrointestinal disorders
but outside....

Kitei:  How is your gut research different from other researchers
looking at the gut, including Dr. Chia and Dr. DeMerlier?

Lipkin: We have a very different approach than most people.  There are
people who are experts in viruses or bacteria or fungi, there are
people who focus on specific microorganisms because they're persuaded
that this particular microorganism or that microorganism is the one
that's important.  We approach this with the notion that this is
really discovery.  We don't have any preconceived notions about what
we're going to find and as you're probably aware, our group has
expertise in looking for bacteria, viruses and fungi. Our approach
will be comprehensive, it will be vigorous, it will be quite deep.

We will use methods designed specifically to find viruses, fungi and
bacteria, so as long as it falls into one of those three categories,
we should be able to find it in the materials we collect and analyze.

Kitei: Which is in stool?

Yes. We are not going to do muscle biopsies or liver biopsies.
Believe it or not, but I've been in meetings where people have talked
about doing brain biopsies, which shocked me.

Kitei:  Unless you had cadavers.

Lipkin:  Well, cadavers are very difficult place to look for
materials, unless somebody has an acute illness. People have been
doing that in MS and other disorders. So we do a lot of cadaver
research.  But I'm not aware that there's a large biobank of people
with chronic fatigue syndrome from whom one could get such materials
even if we wanted to pursue that.

Our intent is to look at people who have active disease and people
who've recovered and to look at their stool and their oral pharynxes
as well and to test whether or not we can find differences in the
populations of bacteria, viruses and fungi in their mouths and in
their fecal flora.  Whatever we find by way of differences between
populations, we will test for the relevance and the acuteness of the
infection by using serology, by testing for the presence of antibodies
in the blood that will react with those specific agents.

Kitei:  Is it possible that by the time you get to the stool the
pathogen is not detectable? I believe Dr. Chia has said that tissue is
a more effective place to find pathogens....

Lipkin:  Depending on whom you speak to, people will tell you the
culprit is a herpes virus in peripheral blood mononuclear cells,
someone else tells you it's an enterovirus in the wall of the bowel,
other people tell me that it's a stealth virus that's lurking in the
central nervous system.  I mean there are many hypotheses that people
have put forward.  To get biopsies from the intestine of an individual
is not something we can easily do.  That requires people who are
willing to have that done, number one. Number two means that you have
to collect those biopsies.  And third, I don't know if an
institutional review board would allow intestinal biopsies on people
who don't have intestinal complaints. That would be very difficult
certainly at Columbia....

Kitei: But there are many people who do have intestinal complaints.

Lipkin:  But there are many people who don't who also have chronic
fatigue syndrome.... I've met the man [Dr. John Chia] at a conference
in San Francisco.... I've been down this path many times before when
people who are clinicians try to shift and do certain types of
laboratory work. And it's always a concern for me when they make a
report of this type because I don't know what kind of controls he uses
to make certain he doesn't have artifacts.  We went through this with
[Dr. Andrew] Wakefield, as you may remember, with MMR and autism.  We
went through this with XMRV in prostate cancer and then in chronic
fatigue syndrome….

It seems very unlikely that if you have a virus which is growing
inside the bowel that as you shed the lining of the bowel—which
happens continuously—that you're not going to have viral particles
that will also be present in feces.  We've done so much work with
fecal material from bats to camels to people to gorillas that I'm
confident that if there's something present within the bowel that we
will be able to see it as long as it reaches a certain threshold for
concentration, and that threshold for concentration we know, and most
people don't know that number.

Kitei:  How many subjects will you have in the study?

Lipkin:  At present we're not nearly where we need to be in terms of
funding to do what we need to do. Ideally we would like to have a
minimum of 200 subjects.  My view on chronic fatigue syndrome is that
there are likely to be multiple pathogens that are implicated and when
you do discovery, sensitivity is not as good as when one uses a
specific assay.  Specific assays exclude all other material that may
be present in a sample, and sensitivity frequently is an order of
magnitude or 10-fold higher than the discovery methods that we use.
So all we need is to find a couple of candidates, and then we'll
develop specific assays and then go back into the rest of the
population to see whether or not we can chip away at the problem.

I would not be at all surprised if there were multiple agents
implicated in chronic fatigue syndrome.  But if we can identify 10
percent of people with herpes viruses and another 10 percent with
Borrelia pathogens and another 10 percent with enteroviruses, and so
forth, we can develop specific tailored approaches for dealing with
these problems.  It's no different from dealing with cancer.  In
[1971], you had Nixon declaring the war on cancer as though it were a
single agent and we now know that even if you take adenocarcinoma of
the lung, there are very many different variations.  Some are
associated with very specific mutations and if you can exclude or
include those mutations you can tailor therapy specifically for an
individual that's nontoxic and highly effective.

And my thought is that there is final common pathway for chronic
fatigue syndrome, but there may be multiple triggers.  So our
objective is identify as many potential triggers as we can, and then
begin to move toward some sort of clinical trial so that we can help
people with specific management recommendations.


"Vulnerable people who do not have others looking out for them are
most at risk for not getting the science that's needed to address
their problem."


Kitei: When is your study on biomarkers coming out?

Lipkin:  Mady Hornig spent last weekend with Dan Peterson in Incline
Village pulling together a study on spinal fluid and that is the first
one that's going out for publication.

The second one, which concerns cytokine measurements in chronic
fatigue syndrome in peripheral blood will follow that probably by
about a month.  We've presented that data in public forums, because we
felt it was important to get out....  But the actual publications in
print will take a few more months.

Kitei:  And in what publications?

Lipkin: No one knows.  You submit and then move on.

Kitei: Did you look at natural killer cells?  That seems to be one
thing that most patients have a problem with.  Either too many that
are not functioning, or too few.

Lipkin:  No, we have not.  It would be very difficult to use that as a
biomarker.  It's very complicated laboratory research.  We're hoping
to develop a biomarker that going to be inexpensive and simple, rather
than requiring people to culture cells.  I'm optimistic that we will
get there, but that doesn't really tell me why the NK cells are
abnormal or why the cytokine patterns are abnormal.  That's what I'm
focused on. Identifying biomarkers is going to be useful primarily for
persuading insurance companies that patients are not malingering.  I
have no doubt that people are not malingering, but that's not going to
tell me necessarily why people are getting sick and what to do about
it.

So our focus is on the origin of the syndrome.  That's the place where
we can make the largest contribution.

Kitei:  I've read that you found in 85 percent of pooled samples
possible evidence of retroviral infection, but that you believe that's
not related to ME. Why do you believe it's not related to ME?

Lipkin:  We also find it in controls.  We need to find something
that's going to be specific.... All the studies we do are very well
controlled because we're involved with clinics where they see hundreds
of patients a year, like Nancy Klimas, Cindy Bateman, Dan Peterson,
Jose Montoya and Sue Levine.... These are the people we have selecting
our patients and controls, collecting materials and working very
closely with us.... We decided to go with the blue-chip group so that
there's no question when they send us a patient....

Kitei:  Are you going to be using the Canadian Consensus Criteria?

Lipkin:  We use all the criteria: the Canadian Consensus Criteria, the
original Fukuda criteria, the criteria used by the programs run by
Nancy [Klimas] and Dan [Peterson], Tony [Komaroff] and others, we use
the most stringent criteria. We also try to emphasize whenever
possible those people who give us a history of a viral prodrome
because that also suggests that these people have the agent present.
And whenever possible we try to get people who are having an acute
relapse…. A paper coming out in the not to distant future about which
I'm very encouraged has to do with RNA profiling host response in
those with chronic fatigue syndrome and controls and these are
individuals from the original NIH XMRV study.

Kitei: And what have you found?

Lipkin:  I can't say yet.  I'm not trying to be coy.  We're still in
the process of analyzing it.  It's an enormous amount of information.
When you start doing genetic sequencing, it can take months to analyze
the data.  It's like building a house.  So, at the end, when you're
slapping on the paint and polishing the floors, it goes very very
quickly, but before that it just looks like chaos.

Kitei:  German researchers found Epstein Barr virus-encoded small RNA
DNA in 11 out of 20 patients, compared with 3 out of 20 controls.

Lipkin: That's such a small number of patients that I don't think it's
meaningful.

Kitei:  Is it something that should be repeated with more patients?

Lipkin:  It's certainly interesting. There's so much scatter
everywhere.  One of the reasons why we're doing it the way we're doing
it is that we don't go into specific bias. We think what we to do is
the same thing that has been done for discovery in any number of
diseases.  The patients deserve that.  The field deserves that.  One
of the problems we have is to a carpenter with a hammer everything
looks like a nail.  We don't have that approach.

Kitei:  Do you believe ME is contagious and/or infectious?

Lipkin:  I don't know that, but I do think there's an infectious
trigger.  It's ultimately going to be a gene environment interaction,
and we're going to have to explore the genetic susceptibility issues
as well as the environmental triggers....

Kitei: Do you believe this is a hit-and-run agent?

Lipkin:  In some cases it may be. I don't know that that's the case.
We haven't proven anything as yet, except that we know that some
people have an indistinguishable illness that reflects infection with
borrelia species or herpes viruses.  If you talk to Konstance Knox,
you think everything is HHV-6.  Some people think it's HHV-6, some
people think this is EBV, some people think it's Borrelia, some people
it's another bacterium, some people think it's a "stealth" virus, some
people think it's a retrovirus, there are a number of possibilities.
They can all be right, and they can all be wrong.

Kitei: Following Koch's Postulates, have you considered finding an
animal model for ME?

Lipkin:  It would be very difficult to develop an animal model right
now.  I've been dealing with this for a long time in autism.  It's a
disorder in which people don't make eye contact.  What is eye contact
in a rodent?

Kitei:  There's some researcher [Dr. Robert Naviaux] who did this in
autism recently and came up with a drug [Suramin] developed in 1916 to
treat river blindness that reversed the autism in mice.

Lipkin: I'm not persuaded.  The only thing that seems to work with
these kids is applied behavioral therapy.  What you're doing there is
starting very very early and trying to socialize them….


"I have been in competition now twice to get funded, and the people
there who reviewed me gave me abysmal scores. And the critiques of my
work were unfair, and one of the people who critiqued my work said, in
fact, that this is a psychosomatic illness.  I was floored."



Kitei: If you did find the cause of ME, would you become involved in
finding effective treatments?

Lipkin:  Yes. That's job one.  We're not in this for intellectual
interest.  We're trying to make differences.  I'm a physician.  I saw
some of the first cases of chronic fatigue syndrome in the early 1980s
when I was at the University of California at San Francisco, referred
to me by Dan Peterson.  It's been a long time.  We need to bring some
clarity.

Kitei:  There's been so little funding. You have Dr. Fauci's ear.  He
has talked about this disease being psychiatric.  That was documented
in Osler's Web.

Lipkin:  No, no. I don't think that's fair.  I know Tony Fauci
extremely well.  And there's another thing people misquote.  [People
misquote] William Stewart, surgeon general in 1967, when they said
[that he said] that the era of infectious diseases is over. There's no
evidence that he ever said that.  My esteemed colleagues...
continually misquote him.  I've never heard Tony Fauci say anything
like that [that ME is a psychiatric disorder]. The fact that it's in
Osler's Web doesn't mean he said that.

Kitei:  She's [Hillary Johnson] is a good reporter. Have you talk to
Dr. Fauci about your theories [of ME]?

Lipkin: In fact I have spoken to him about it. That's why I can't
understand why people think this is the case.

Kitei:  There's no federal money for ME research.  Year after year there's no money, and more is given to male-patterned baldness than to this disease.

Lipkin:  Let's backtrack and examine how these decisions are made.
First of all, the National Institutes of Health gets money from the
Congress.  The Congress will mandate what it is they want people to
do.  The Department of Defense has funding for autism, for a number of
other things that people push, including, as you mentioned, some
disorders that are specifically male.

One of them is prostate cancer.  The Department of Defense has been
running programs on prostate cancer for decades. Why?  Because men in
the position to make those decisions have wanted research focused on
prostate cancer, so they allocate money for prostate cancer.
The NIH
doesn't allocate money for specific disorders.  Those kind of monies
are allocated in response to congressional mandates.

Now, Tony Fauci doesn't have the ability to start a brand-new program
on chronic fatigue syndrome.  This is what I want to do.  He's
continually being pushed to work on influenza, HIV, bio-threat agents,
things of that nature. And there is a portfolio for chronic fatigue
syndrome, which, as you said, is quite small.  There are not many
people working in this field.

I have been in competition now twice to get funded, and the people there who reviewed me gave me abysmal scores.  And the critiques of my work were unfair, and one of the people who critiqued my work said, in fact, that this is a psychosomatic illness.  I was floored.  I
protested, and for reasons that are obscure to me this same individual
wound up back on the study section, and I got a similar unfundable
score.  Am I upset about this? Absolutely.  Do I think Tony Fauci
knows about this?  No. And if Tony Fauci were to find out that people
said that he claimed this is a psychosomatic illness, he would deny it
because he doesn't believe that's true.  I'm sure he doesn't believe
that's true....

[In the first set of critiques I was also told] that everybody knows
that this is a herpes virus infection of peripheral blood mononuclear
cells so there's no reason to look at the gut. This is the nature of
study sections.  You can't control what people are going to do when
they get on….  They do the best that they can, but that doesn't mean
they're up to the task and it doesn't mean that they're appropriate.

One of the challenges is that there aren't enough people doing
credible research in the field.  Period.  If there were more people,
you'd have better study sections, better work and we'd be further
along in terms of sorting out this problem.

Kitei:  But it's a vicious cycle.  If you can't get funding—

Lipkin:  It's not the leadership of NIH.  That's not the problem.  The
problem is that you need a champion in Congress who's going to go ahead and say, I want money allocated for chronic fatigue syndrome research.  That's the way it gets done.  That's the way HIV got done,
that's the way breast cancer got done, and so on.  It has to be
somebody who has some ability to influence the purse. And if that
happens, the NIH would only be too happy to take the money and to
allocate it and get the best science done.  That's all the NIH cares
about.

Kitei:  That's a crazy way of doing things.  If anybody should
understand this disease, it's scientists.

Lipkin:  But they don't listen to scientists.  Congress doesn't listen
to scientists.
  They listen to people who vote for them. I was very
involved in getting the autism bill passed, in the late 1990s and
early 2000s.  And it was two parents and a few of their friends who went down and lobbied on Capitol Hill and pushed through this first bill that created the autism Centers of Excellence.  And it was the parents who did it.  The problem is with chronic fatigue syndrome, and I feel bad about this, these are the most vulnerable people.  They don't have the energy or the resources that are needed to go and lobby.

Whereas if you have a child and you're otherwise healthy, and you're
looking at this child every day, then you're motivated, you're strong,
you're powerful and you go down there and you complain, and push and
squeak until you get the resources that you need.  The other people
who have the same problem are people with mental illness, and I am not
saying by any means that chronic fatigue syndrome is mental illness.
I'm just saying that these are also vulnerable people. Vulnerable
people who do not have others looking out for them are most at risk
for not getting the science that's needed to address their problem.

But the solution for that is for the healthy ones, the people who have
recovered, or relatives and friends of those who have these disorders
need to push.  I talk to everybody.  I do everything I can to promote
this. When people who are scientists tell me they don't believe this
is a real disease, I refute it, I refute it with facts, I talk to the
media, but I don't have any traction with Congress because I live in a
blue state. And New York is in favor of scientific research and
increasing the NIH budget.  And the problem is, when you go into the
South and the Midwest, you don't have that support. The budget for the
NIH has been cut dramatically.

I'm on the advisory committee for Francis Collins, and I can tell you
that Francis Collins, the director of the NIH, believes that chronic
fatigue syndrome is a problem. He would love to have the resources to
allocate. The resources are going to have to come because people push
their representatives to provide that kind of support. That's the only
way it's going to happen. I'm sorry about that, because believe me,
the last thing I want to do is begging for dimes and quarters for my
work....

Kitei: You mentioned someone on the study section said this was a
psychosomatic illness. Can't this person be educated?

Lipkin: I think this person has to be eliminated. I pushed to have him
eliminated permanently from this study section. I'm not going to tell
you his name because it's not appropriate, and I'm not supposed to
know it….

Kitei: That's one person, and it would be great to get him eliminated,
but there's a basic feeling in the government—certainly in the CDC—that this is a psychosomatic illness....

Lipkin: I don't think that's true.

Kitei: I believe it is true at the CDC.

Lipkin: I don't know who at the CDC you mean.

Kitei: Certainly [Dr. Beth] Unger, but she's just taking orders.

Lipkin: She's in the process of doing biological research.

Kitei: Have you read Osler's Web? I would urge you to read it.

Lipkin: No. I've been given three copies of it.

Kitei: Well, maybe you should read it. Maybe someone is trying to tell
you something.

Lipkin:  I've read Absence of Evidence with the autism stuff and so
forth.  I'm sure people mean well. Hillary [Johnson] is a very nice
individual. I like her. But I've also had people tell me that they've
never said the things she claims they've said. This is a problem. I
know some of these people. I knew Bill Reeves. He was a problem. But
he's no longer on the face of the earth. So that's not an issue. And
Beth Unger does not believe that this is a psychosomatic illness. She
just doesn't. And Bill Switzer doesn't believe that this is a
psychosomatic illness. So I don't know where people get this. And [CDC
Director] Tom Frieden doesn't believe this is a psychosomatic illness.
As I've said, the best way to get results is to organize a grass-roots
campaign to push the Congress to allocate money for chronic fatigue
syndrome research and treatment. That's really the way to go.

Kitei: But then they do psychosomatic research, personality
disorders.... Beth Unger's [name] has been on the studies that do
this. Or they do an exercise study, and instead of doing a two-day
test—because it takes two days to see the problems in the recovery
period—they only do a one-day test because they say it's too hard on
the patients. But patients are willing to do this.

Lipkin: I've had physicians say they can't get a rectal swab because
it's too painful for patients.

Kitei: There are plenty of patients who would be willing to do it.

Lipkin: There are all kinds of things people will say, and I don't
want to fight with you.

Kitei: No, no. I don't want to fight with you either.

Lipkin: I'm fighting for you. What I do want you to appreciate though,
is that our enemy is not that the people we're talking about. It just
isn't. These people, we may disagree with them, we may think that
their strategies are insufficient, we may want to do things
differently but none of the people whom you mentioned think it's a
psychosomatic illness or think it's overstated. That's just not who
they are. I know these people. I've worked with them for years…. Beth
Unger was desperate for me to be involved in these conference calls,
and she was very happy to hear about cytokine abnormalities, and she
would like to do more work on genetic responses and so on, all of this
she's interested in doing. She's interested in a biological solution.

Kitei: We'll agree to disagree on that. How can people donate to our research?

Lipkin: We are eager to move as rapidly as possible. We will be as
frugal as we can be. We deserve the same kind of work that I do for the Saudi government, trying to figure out the origin of MERS or anything else. I want to be working for [patients]. And the problem we have at present is that I've gone as far as I can go before the institution says, look you can't pay your bills. That's where we are
at present. I need to be able to pay for the work….

There are some people who have herpes virus infections. We can define
those, we can detect those. Those people should be diagnosed because
they can be treated now. The same thing is true with Borrelia
infections. We've created a series of multiplex assays to detect those
infections…. And those people can be treated, and maybe that takes
care of 10 percent of people. We need to deal with the other 90
percent. And that's why we need to look for other sources of
infection, other ways in which things get triggered. And it's going to
be a wide range of things. Some people it's going to be infectious,
some people it's going to be toxic, some people it's going to be hit
and run. All of these things need to be understood, dissected,
addressed, and we will chip away slowly at the problem. This is like
cancer…. Some people need radiation. Some people need this drug, or
that drug or the other drug.... It has to be personalized medicine.

Kitei: But how do you know that yet? There might be a
common-denomination pathogen, like what hit Incline Village and
Lyndonville, New York, when all those people came down with it.

Lipkin: I wish I could get samples from either of those outbreaks. I
can't. They don't exist. We've been asking for them for years.

Kitei: [Dr. Daniel] Peterson doesn't have them?

Lipkin: He's sending us some materials. Maybe we will find something.
There's some mantle cell lymphoma. He's got very few samples, because
most of it went to WPI [Whittemore-Peterson Institute], and they
refuse to return it to him. Believe me, we are doing everything we can. It's an incredibly depressing, humbling experience. It's so much more difficult than 99 percent of what I do day-to-day.

Awareness Day Blog Chain

(You don't need to have your own blog to take part)

There are set questions people are encouraged to answer
e.g.
"Tell us 5 things about you that the people in your life probably
don't know (non-illness-related)"
and...
"Tell us 5 things about you that the people in your life probably
don't know about your life with CFS / ME"

People can either post it on their own blog (and she'll link to it) or
else e-mail her the answers and she'll put them up on her blog.


People can, if they want, then link to the info in their own Facebook,
on Twitter, etc so people in their lives can read about it.

Nice idea.

http://bit.ly/1iBtZUN  i.e.
http://www.getupandgoguru.com/m-e-mecfsfibro-awareness-day-2014-blog-chain/

Tom
Twitter: @TomKindlon
Pinterest: http://www.pinterest.com/tomkindlon

IOM meeting videos

Institute of Medicine Study on Diagnostic Criteria for Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome
May 5, 2014

Meeting playlist-
Institute of Medicine Study on Diagnostic Criteria for Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome
https://www.youtube.com/playlist?list=PLGTMA6QkejfinnREnfX1fGQqdtOo3Xdud

Individual presentations-
Introduction to Public Session
Ellen Wright Clayton, Committee Chair
https://www.youtube.com/watch?v=RXAFxfguj7g&list=PLGTMA6QkejfinnREnfX1fGQqdtOo3Xdud

Panel 1 - Landson
Joseph Landson
https://www.youtube.com/watch?v=K8au5hlqFJk&list=PLGTMA6QkejfinnREnfX1fGQqdtOo3Xdud

Panel 1 - Lopez-Majano
Denise and Matthew Lopez-Majano
https://www.youtube.com/watch?v=_U35icetbzw&list=PLGTMA6QkejfinnREnfX1fGQqdtOo3Xdud

Panel 1 - Miller
Robert Miller
https://www.youtube.com/watch?v=mu8a0xQ6Lso&list=PLGTMA6QkejfinnREnfX1fGQqdtOo3Xdud

Panel 1 - Whittemore
Annette Whittemore
https://www.youtube.com/watch?v=2TAqFNfOSPU&list=PLGTMA6QkejfinnREnfX1fGQqdtOo3Xdud

Panel 1 Discussion
Panelists field questions from the audience
https://www.youtube.com/watch?v=PYmqQD5NyAk&list=PLGTMA6QkejfinnREnfX1fGQqdtOo3Xdud

Diagnostic Criteria Issues for ME/CFS
Leonard A. Jason, Professor, DePaul University, Director of the Center
for Community Research
https://www.youtube.com/watch?v=d5WA-a8lzrQ&list=PLGTMA6QkejfinnREnfX1fGQqdtOo3Xdud

Jason Q&A
Leonard A. Jason, Professor, DePaul University, Director of the Center
for Community Research
https://www.youtube.com/watch?v=JNAK1lbYCgY&list=PLGTMA6QkejfinnREnfX1fGQqdtOo3Xdud

Sleep Disturbances in ME/CFS
Akifumi Kishi, Postdoctoral Fellow in the Division of Pulmonary,
Critical Care, and Sleep Medicine; Department of Medicine; NYU School
of Medicine
https://www.youtube.com/watch?v=fCLaKLLY3sI&list=PLGTMA6QkejfinnREnfX1fGQqdtOo3Xdud

Kishi Q&A
Akifumi Kishi, Postdoctoral Fellow in the Division of Pulmonary,
Critical Care, and Sleep Medicine; Department of Medicine; NYU School
of Medicine
https://www.youtube.com/watch?v=gKnIJFymUVI&list=PLGTMA6QkejfinnREnfX1fGQqdtOo3Xdud

Neurocognitive Manifestations in ME/CFS
Gudrun Lange, Professor, Department of Physical Medicine and
Rehabilitation, Rutgers University-New Jersey Medical School
https://www.youtube.com/watch?v=UPZcO4M-4SY&list=PLGTMA6QkejfinnREnfX1fGQqdtOo3Xdud

Lange Q&A
Gudrun Lange, Professor, Department of Physical Medicine and
Rehabilitation, Rutgers University-New Jersey Medical School
https://www.youtube.com/watch?v=npsEzWdsMwE&list=PLGTMA6QkejfinnREnfX1fGQqdtOo3Xdud

COMING UP IN TWO HOURS

Thrive Show is hosted by Jennifer Brea who is making a documentary
about ME, "Canary in the Coal Mine".

-----

j.mp/thriveMay12  i.e.
https://plus.google.com/u/0/events/ch7odrdv6aqknf1adkfs09h1kvo

Join us on Monday, May 12 at 3PM Eastern Time for a special episode on
ME Awareness Day.

We will be joined by three unique individuals with distinct
backgrounds and expertise related to myalgic encephalomyelitis (ME).
Our guests include:

Ryan Prior: Ryan is a journalist, film producer, and social
entrepreneur from Atlanta, GA.  A former writer for The Daily Beast
and USA Today, he is now executive producer and writer of the feature
film Forgotten Plague (http://mecfsdocumentary.com/; previous working
title: The Blue Ribbon). The documentary focuses on the role that
major new trends in Big Data and genomic medicine play in addressing
ME/CFS and transforming the future of medicine. In conjunction with
the film, he is co-founder of the Blue Ribbon Foundation which will
promote the documentary and install first-year medical students at top
neuro-immune institutes.

Leonard Jason: Leonard is a professor of psychology at DePaul
University in Chicago, Illinois, where he also directs the Center for
Community Research. His chief professional interests include the study
of chronic fatigue syndrome, smoking, smoking cessation, and Oxford
House recovery homes for substance abuse. His interest in chronic
fatigue syndrome began when he was diagnosed with the condition in
1990 after having mononucleosis. Check out his book "Principles of
Social Change":
http://www.amazon.com/Principles-Social-Change-Leonard-Jason/dp/0199841853/ref=sr_1_1?s=books&ie=UTF8&qid=1399569615&sr=1-1

Jeannette Burmeister: Jeannette is an attorney, ME activist, writer,
mother, and wife. You can follow her health journey on Thoughts About
ME: http://thoughtsaboutme.com/

Slightly Alive: May 12: My 20 years with Myalgic Encephalomyelitis

 
If you've blogged for Awareness Day, please share a link in the comments.

Sunday, May 11, 2014

Stigma of chronic fatigue illness adds to suffering | Scoop News

 

"What's particularly interesting about all these findings is that this group reported worse scores than those with other neurological conditions such as Parkinson's and Multiple Sclerosis," he says.

 

The “Miracle” Weight Loss Supplement - Garcinia Cambogia » Dr. Rodger Murphree

 
 
"I like Dr. Oz, I really do, but I'm less than impressed with some of his recommendations. Fortunately they are safe, but do these natural weight loss remedies really work?"
 
* * *
I like Dr. Oz, too, because he does address CFS and fibro as if they're real diseases, but he never seems to have on the experts who talk about the more serious aspects.  He invites Dr. T, with his wrong-headed advice to exercise your way back to health.  Unless you're already back to 80-85%, exercise will backfire and land you back in bed. 
 
When a doctor insisted that my previous experience with exercise didn't count because I hadn't taken contemporaneous notes, I was mis-remembering the results, I took a week when I felt well enough to walk to a store 6 blocks away every day to pick up something for lunch (since I knew that after exercising I wouldn't have energy to cook).  The first day, I collapsed into bed upon return and had to rest a couple hours. The second day, I collapsed into bed upon return and had to rest longer.  By the end of the week, I tried to get out of bed and crumpled to the floor, unable to walk even the few feet to the bathroom.  And this time I documented absolutely everything about it, every increased symptom, to prove that exercise makes me feel worse, not better.
 
It took weeks to get back to baseline, and I made sure to document that, too.

Stigma adds to suffering

 
"What's particularly interesting about all these findings is that this group reported worse scores than those with other neurological conditions such as Parkinson's and Multiple Sclerosis, http://www.scoop.co.nz/stories/GE1405/S00051/stigma-of-chronic-fatigue-illness-adds-to-suffering.htm