Wednesday, December 31, 2014

Laura Hillenbrand and CFS

 
Links to where Laura Hillenbrand has spoken/written about having CFS
 
 
Thank you, Laura, for being the face of CFS and speaking so eloquently about it.

Tuesday, December 30, 2014

Ian Hodgson on chronic fatigue syndrome and vitamin D

 
 

 "ME/CFS occurs in countries where there is no Lyme disease. The confusion arises because ME/CFS is diagnosed only by symptoms and the symptoms can be similar to other pathologies. ... I can confidently say that ME/CFS is NOT Lyme disease."

Sunday, December 28, 2014

Laura Hillenbrand on CBS "Face the Nation"


The very first sentence was "tell me about your disease".  Laura gave a good concise description of CFS, including that it's also called Myalgic Encephalomyelitis, how it affects her, that she's at times been too sick to even leave the house even once for 2 years at a time....


Whereas NBC last week never even mentioned the name of Laura's condition in an hour-long program, CBS led off with it.

Link to the video:
http://www.cbsnews.com/videos/hillenbrand-angelina-did-a-magical-job-with-unbroken/ 

Saturday, December 27, 2014

Lisa Petrison - From "The World is Going to Hell in a Handbasket"..

 

Cort Johnson reports that a study of Lenny Jason's says that of a sample of "healthy controls," 16% met the ICC criteria for M.E., 21% met the CCC criteria for "ME/CFS," and 1/3 met the Fukuda criteria for "CFS."

Especially for the ICC (which has pretty strict criteria and requires a 50% reduction in activity), I find that really shocking. Are we really at the point where 16% of the population is that sick? Or was something wrong with that control group?

Tuesday, December 23, 2014

How to debunk false beliefs without having it backfire - Vox

 
Good information next time you're talking to someone who says CFS or fibromyalgia is all in your head....
 
 

Saturday, December 20, 2014

Study Provides More Evidence that Gulf War Illness and CFS/ME are different

 
 
Our analysis identified a group of cytokines that identified ME and GWI cases with sensitivities of 92.5% and 64.9%, respectively. The five most significant cytokines in decreasing order of importance were IL-7, IL-4, TNF-α, IL-13, and IL-17F. When delineating GWI and ME cases from healthy controls, the observed specificity was only 33.3%, suggesting that with respect to cytokine expression, GWI cases resemble control subjects to a greater extent than ME cases across a number of parameters. 
These results imply that serum cytokines are representative of ME pathology to a greater extent than GWI and further suggest that the two diseases have distinct immune profiles despite their overlapping symptomology.
 
 

Thursday, December 18, 2014

The Unbreakable Laura Hillenbrand - NYTimes.com

 
 
One peculiarity of chronic fatigue syndrome is the degree to which it can remain invisible: A patient may be in excruciating pain without showing any outward sign of illness. There is still no simple laboratory test for the disease, nor any way to confirm its diagnosis. There is even some debate over what to call it. Many doctors and patients, including Hillenbrand, believe the words "chronic fatigue" sound trivial. They prefer the term "myalgic encephalomyelitis," or M.E., which refers to inflammation in the brain and spine. Other doctors resist this name, questioning whether patients with the disease reliably exhibit this inflammation. Dr. Charles Shepherd, a medical adviser to the ME Association in Britain, told me that decades of mystery around the illness have only worsened the suffering of victims. "I was taught at medical school 40 years ago that this was all hysterical nonsense," he said. "It was an illness which was either ignored, or dismissed, or regarded with extreme skepticism."

Friday, December 12, 2014

Inexpensive Internet for Disabled/Seniors

Logo of DOnetwork.
DOnetwork News Alert posted on December 11th, 2014 at 1:53pm:


Free Internet Hotspots with Low Monthly Service Cost for People with Disabilities, Seniors and Returning Veterans


Take Action Today: Deadline December 15, 2014!

The Digital Access Project and Basic-Internet.com are providing free hot-spots to eligible people with disabilities, seniors and returning veterans in California! People who do not currently have internet service at home are eligible and the monthly service charge is only $10.90 per month.

To get a free hot spot and see if you are eligible for monthly service at this rate contact:

Kim Hogan, Digital Access Project Coordinator
Phone: (916) 325-1690,
Email: kimhogan@cfilc.org
In-Person (Sacramento): California Foundation for Independent Living Centers, 1234 H Street, Sacramento, CA 95814, please call Kim Hogan in advance to set up a time from 9am to 4pm.

The Digital Access Project also holds regularly scheduled digital literacy training sessions for new Internet and computer users â€" you can get your hot spot at one of these upcoming trainings too!

DECEMBER EVENT DETAILS
When:
Wednesday, December 10th, 11th and 13th Starts at 10 AM
Where:
Sacramento Food Bank & Family Services
Education & Technology Center
3308 Third Ave
Sacramento, CA 95817
Who:
Sacramento Food Bank & Family Services and Digital Access Project training staff and people receiving free hotpots

Not near Sacramento?  That’s OK, we have community partners across California! CLICK HERE for a list of partners and locations, and be sure to scroll down and click on the logo's for our partners for more information.

To learn more about eligibility for the free hot-spots and affordable Internet service, please call 800-390-2699. Deadline to apply for free hotspots is December 15, 2014. Please note: The free hot-spots are not available at www.basic-internet.com.

“The best gift possible is giving someone affordable Internet at home,” said Kim Hogan, Digital Access Program Coordinator. “We are thankful for the donation of free hot-spots from Basic-Internet.com. This generous gift will help people with disabilities, seniors and low-income families get online to improve the quality of their lives.”

Basic-Internet.com offers high-speed residential Internet service to the general public, starting at $10 per month, with some restrictions. Typically, other Internet service providers charge as much as $70 a month. Louis Flores of Elk Grove is one of the first to get a free hotspot, which normally retails for about $89.00, and is signing up for the $10 a month plan. “The Internet has been unaffordable for me. Now my sons can look for work from home without having to go to the library and my daughter will not have to stay late at school to finish homework in a computer lab,” Flores said. “And my wife and I can use free online telephone services to talk to our families in Mexico. This is the best gift I could imagine.”

The Digital Access Project is a program of the California Foundation for Independent Living Centers (CFILC).

About California Foundation for Independent Living Centers
The mission of CFILC is to increase access and equal opportunity for People with Disabilities by building the capacity of Independent Living Centers. For more information, visit www.cfilc.org. The Digital Access Project is a program that supports people with disabilities in getting Internet services at a lower cost and digital literacy training. For more information, visit www.digitalaccessproject.org.


To read the article source, click here:
http://digitalaccessproject.org/


Disability Organizing Network - DOnetwork

California Foundation for Independent Living Centers
1234 H Street, #100 • Sacramento, CA 95814 • 877-427-0387 / 800-900-0706 TDD
Non Profit 501(c) 3 • Fed Tax ID: 94-2838242

Thursday, December 11, 2014

Sunday, December 7, 2014

Obituary: Dr. Erich Ryll, 93, early expert on chronic fatigue syndrome

 
Dr. Erich D. Ryll, a physician who investigated a mysterious outbreak of symptoms at a Sacramento area hospital as a pioneering expert on chronic fatigue syndrome, died Nov. 26 of complications from an intestinal illness, his family said. He was 93.
 

A former Army physician, Dr. Ryll opened a private practice in 1968 as an infectious disease specialist in Sacramento. He was chief of medicine at Mercy San Juan Hospital in late summer of 1975 when more than four dozen nurses became ill with acute symptoms, including severe leg pain, headaches, fatigue and nausea. The condition eventually spread to about 200 hospital workers and family members, according to news stories in The Sacramento Bee.

Mercy officials asked Dr. Ryll to investigate the outbreak, which also drew a state epidemiologist and an official from the U.S. Centers for Disease Control to the Carmichael hospital. Tests for viruses and toxins came back negative, leaving experts puzzled and in disagreement about a possible cause, including employee stress.

After scouring medical journal reports about similar clusters of cases in other countries, Dr. Ryll argued that the condition was caused by a virus that lies dormant in the body until activated by other factors. He treated more than 100 Mercy workers in one of the first Northern California outbreaks of what is now commonly known as chronic fatigue syndrome.

Because it is a complex disorder that cannot easily be diagnosed or explained by an underlying medical condition, chronic fatigue syndrome historically has faced a lack of understanding or familiarity in the medical community. Dr. Ryll treated many patients who found no answers or support from other physicians, his son Erich Jr. said. He testified on behalf of Mercy employees seeking workers' compensation benefits, which hospital administrators opposed.

"That was his job," his son said. "He was a highly ethical person, and he would never throw anyone under the bus for his own gain. He taught us as kids that even if it comes to a sacrifice to your own well-being, you have to do what's right."

A son of German immigrants, Dr. Ryll was born in 1921 in Lorain, Ohio. After serving in the Army in Morocco and Italy during World War II, he graduated from Valparaiso University and earned a master's degree in microbiology and a medical degree from the University of Kansas.

He rejoined the Army in 1958, completed a research fellowship at Walter Reed Army Institute of Research and worked as a physician and researcher. He left the military in 1967 and worked at Kaiser Permanente in Sacramento.

Dr. Ryll, who retired from medicine in his mid-80s, was a fitness enthusiast and avid bicyclist. He founded the Physicians Cycling Group of Sacramento in 1974 and led rides from Sacramento through high passes in the the Sierra Nevada to Nevada and Yosemite National Park. He also sang in the Sacramento Symphony Masterworks Chorus and a Bach choir.

"He had a beautiful, rich bass voice," his son said. "He sang all his life."

Dr. Ryll was preceded in death by a daughter, Dorthea, and a son, Thomas. In addition to Erich Jr., he is survived by his wife of 72 years, Marjorie; a daughter, Eda Mathews; two sisters, Tabea and Gertrude Stephen-Hancko; five grandchildren; and two great-grandchildren.

A memorial service is set for 11 a.m. Monday at Town & Country Lutheran Church, 4049 Marconi Ave., Sacramento. In lieu of flowers, donations may be made to the Alzheimer's Association.

Editor's note: Previous online versions of this story incorrectly listed Tuesday as the day of Dr. Ryll's memorial service. The service is Monday, Dec. 8. We regret the error.


Read more here: http://www.sacbee.com/news/local/obituaries/article4248996.html#storylink=cpy


Read more here: http://www.sacbee.com/news/local/obituaries/article4248996.html#storylink=cpy

Saturday, December 6, 2014

Jason's research on Lack of Knowledgeable Doctors

Lori Chapo Kroger reports:

It took 2 years to get it published, but we did it! Here is the article co-written with Dr. Leonard Jason, "Lack of Knowledgeable Healthcare Access for Patients with Neuro-endocrine-immune Diseases." If you participated in PANDORA Org's, 2012 survey, you helped make this research possible. Thank you! http://www.vkingpub.com/Journal/FCM/421.html

* * *

It doesn't matter how good your health insurance is when your doctors are clueless.  They don't know how to diagnose it.  They don't know how to treat it.  And it's easier for them to convince themselves that the patient is a faker than to accept that they don't know everything.

 

 

 

 

 

Tuesday, December 2, 2014

Hospital Errors Drop, Saving 50,000 Lives: Government - NBC News

U.S. hospitals mistakenly kill as many as 180,000 Americans a year, according to government estimates. That's beginning to change.

 
 
 
 

5 Ways to Get Free E-books for the Kindle, Sony, IPad and Others

Because the only thing better than a book is a FREE book. 
If you don't have a Kindle, you can download the FREE Kindle for PC app at Amazon and read on your computer.
 

Monday, November 24, 2014

Brains of People with Chronic Fatigue Syndrome Offer Clues

 

Many patients are still told to seek psychiatric help. But two recent studies — one from investigators at Stanford a few weeks ago and another from a Japanese research team published earlier this year — have found that the brains of people with chronic fatigue syndrome differ from those of healthy people, strengthening the argument that serious physiological dysfunctions are at the root of the condition.

"You've got two different groups that have independently said, 'There's something going on in the brain that is aberrant,' " said Leonard Jason,

* * *

It's "all in our heads", but not in the way they thought!

 

 

Sunday, November 23, 2014

NIH Categorical Spending -NIH Research Portfolio Online Reporting

 
 
Headaches get 5x the research funding as ME/CFS.  Otitis media (ear infection) gets 3x as much funding.  Cancer gets 1000x as much funding as ME/CFS.  Even the mild annoyance of hay fever gets twice as much funding as our disabling illness!
 
The inequalities are horrifying.
 
We get $5M; MS, which is fairly similar in symptomatology, gets $115M.
 
If anyone wants to know why you're not taking any medications, not having any improvement, just point them to this chart.
 
 

Saturday, November 15, 2014

Check out Onward Through the Fog: "Government unreasonable": Judge Vince Chha

 
In the Court's order, the Judge noted:
Ms. Burmeister is clearly the prevailing party in the litigation. Moreover, as outlined in the order granting Ms. Burmeister's motion for summary judgment, the government's conduct throughout its dispute with Ms. Burmeister was unreasonable. Ms. Burmeister stood to gain nothing financially from her attempt to obtain documents at issue from the government, and she conferred a benefit on the public through her successful effort to obtain a ruling against the government. [emphasis added]

defendants produced a mere 88 pages, only 22 relating specifically to the IOM (one of them blank), for a very high-priority and extraordinarily controversial $1 million project. It was clear that their search and production of documents was woefully inadequate (as the Court later agreed when it granted my motion for summary judgment). The defendant's subsequent response to my complaint was, once again, late. It was then that I realized that they had no intention of complying with the law in response to my entirely reasonable and very straightforward FOIA request, even faced with a lawsuit.
 
* * *
Clearly, there's an intentional government cover-up when it comes to CFS.....
 
What are they hiding?

Wednesday, November 12, 2014

CoQ10 + NADH = improvement?

http://online.liebertpub.com/doi/abs/10.1089/ars.2014.6181

Does oral Coenzyme Q10 plus NADH supplementation improve fatigue and
biochemical parameters in Chronic Fatigue Syndrome?

Dr. JESUS CASTRO-MARRERO, Ph.D., Prof. Mario D. Cordero, Dr. Maria
Jose Segundo, Naia Saez-Francas, Dr. Natalia Calvo, Dr. Lourdes
Román-Malo, Luisa Aliste, Prof. Tomas Fernandez de Sevilla, Dr. Jose
Alegre-Martin


ABSTRACT

Chronic Fatigue Syndrome (CFS) is a chronic and extremely debilitating
illness characterized by prolonged fatigue and multiple symptoms with
unknown cause, diagnostic test, or universally effective treatment.
Inflammation, oxidative stress, mitochondrial dysfunction, and CoQ10
deficiency have been well documented in CFS. We conducted an 8-weeks
randomized, double-blind, placebo-controlled trial to evaluate the
benefits of oral CoQ10 (200 mg/day) plus NADH (20 mg/day)
supplementation on fatigue and biochemical parameters in 73 Spanish
CFS patients. This study was registered in ClinicalTrials.gov
(NCT02063126). A significant improvement of fatigue showing a
reduction in FIS total score (p< 0.05) was reported in treated group
vs. placebo. In addition, a recovery of the biochemical parameters was
also reported. NAD+/NADH (p< 0.001), CoQ10 (p< 0.05), ATP (p< 0.05)
and citrate synthase (p< 0.05) were significantly higher and
lipoperoxides (p< 0.05) were significantly lower in blood mononuclear
cells (BMCs) of the treated group. These observations lead to the
hypothesis that the oral CoQ10 plus NADH supplementation could confers
potential therapeutic benefits on fatigue and biochemical parameters
in CFS. Larger sample trials are warranted to confirm these findings.

Wednesday, October 29, 2014

Study finds brain abnormalities in chronic fatigue patients | News

 

It's not uncommon for CFS patients to face several mischaracterizations of their condition, or even suspicions of hypochondria, before receiving a diagnosis of CFS. The abnormalities identified in the study, published Oct. 29 in Radiology, may help to resolve those ambiguities, said lead author Michael Zeineh, MD, PhD, assistant professor of radiology.

"Using a trio of sophisticated imaging methodologies, we found that CFS patients' brains diverge from those of healthy subjects in at least three distinct ways," Zeineh said.

Chronic fatigue is real, new brain scans show - Health - TODAY.com

 
 Stanford researchers found distinct differences between the brains of patients with chronic fatigue syndrome and those of healthy people, according to a study published in Radiology Wednesday. ... Zeineh and his colleagues found several anomalies in the brains of CFS patients, including a reduction in the amount of white matter—a part of the brain that is composed of long fibers which serve as the communication cables between nerve cells.

Sunday, October 26, 2014

I’m Sick But What Is Wrong with Me? | Psychology Today

 
Research funding for CFS is near the bottom of the heap. Two examples: it receives a fraction of what is allocated for allergy research and even for male pattern baldness, despite the fact that CFS can leave people unable to work and, in many cases, bedbound. I had to give up a productive career due to this illness. Who is forced to leave the workforce due to male pattern baldness?
 
 
 
Another winner from Toni Bernhard
 
 
 
 
 

Friday, October 24, 2014

Article in APA Monitor Reaches 130,000 Professionals in the Field of Psych

 
 
"The goal of the article is to update readers on the latest thinking behind ME/CFS — to underscore that it has biological roots and is not a psychological condition. To look at what the science says about possible causes and best approaches to managing the disease. I've spoken to several researchers who noted that patients are really frustrated by the myths and misunderstandings associated with the disease, and I'm aiming to find some patients who can speak to that issue."
 
... Earlier this month the October issue of the APA Monitor was released and Weir's article appears on page 67-71. You can read the full text here: http://www.apamonitor-digital.org/apamonitor/201410#pg70 
 
APA can and should play a role in dispelling disbelief that ME/CFS is a serious, debilitating illness.
 
"…the take-home is simple: It's time to give up the idea that CFS is a psychosomatic disease."
-Marcie Zinn, PhD, neuropsychologist and research consultant at Stanford University

Monday, October 20, 2014

Immune System Disruption: The search for answers

http://stanmed.stanford.edu/2014fall/immune-system-disruption.html

Immune system disruption
The search for answers

By Kris Newby
Illustration by Jeffrey Decoster
Photography by Timothy Archibald

Erin keeps a photo of herself playing soccer in the living room of her
tidy cottage near San Francisco Bay. It captures her image frozen in
time and space, hurtling like a comet between two opponents, her
white-blond ponytail fanned out like flames.

Extras:

video interview- https://www.youtube.com/watch?v=pvtbsStLQWk

Related reading: The Institute for Immunity, Transplantation and Infection
http://stanmed.stanford.edu/2014fall/iit.html

Related reading: Hacking the immune system: The hunt for chronic
fatigue biomarkers
http://stanmed.stanford.edu/2014fall/hacking-immune-system.html


"She was a midfielder with boundless energy, lightning fast," recalls
the coach of her Big Ten college soccer team.

Erin, in her early 30s, always assumed that soccer would be at the
center of her life. As a little girl, her favorite toy was a soccer
ball, a present from a cousin living in Rome. At age 4, she drew a
picture of herself competing in the Olympics. In high school, she was
invited to try out for the national team's talent pool. After college,
she played for the Detroit Jaguars, a semi-professional team.

But her dream of playing competitive soccer abruptly ended after a
trip to Mexico in 2007.

"I was doing social work at an orphanage when I got sick," says Erin
(who asked that her real name not be used). "I passed out and was
hospitalized with a high fever, low blood pressure and swollen lymph
nodes. After that, I was never the same."

Thus began her seven-year journey battling a devastating illness with
no known cause or cure. She was bedridden for all but four hours a
day. She could stand only for 20 minutes without fainting. But the
worst symptom was the brain fog.

"It was like my thoughts were stuck in molasses," says Erin.

No one could figure out what was wrong or how to fix it. She was
labeled with chronic fatigue syndrome. Despair set in as the door to
her old life slowly closed.

Interrogating the immune system

That same year a door opened on the other end of San Francisco Bay, in
a windowless basement of a clinical research building at Stanford
University. Here Mark Davis, PhD, an immunologist with a computer
hacker's mindset, was launching a center that aimed to break open the
black box called the human immune system. This dynamic network of
biological sensors, cells, secretions and genes is like a sixth sense,
able to detect microbial friend from foe in the food we eat, the
things we touch and the air we breathe. The most intelligent facets of
the immune system are still a mystery. How does it differentiate
between the cells that are part of you and the interlopers? What are
the steps involved in launching an army of white blood cells to attack
a microbial invader? How does the system dial down the resulting
tissue-damaging inflammation? How do our traitorous cells — the
cancers — make themselves invisible to our immune system?

Davis, director of Stanford's Institute for Immunology,
Transplantation and Infection, is in the right place at the right time
for this quest, swimming in the primordial soup of creative
disruption, Silicon Valley. At long Stanford cafeteria tables
frequented by geneticists, bioengineers, math geniuses, computer
programmers, surgeons and cancer biologists, ideas just happen. And
sometimes, visionary entrepreneurs throw money at these ideas. Such is
the case with Davis' Human Immune Monitoring Center, which before long
had enough funding to acquire a CyTOF, a time-of-flight mass
spectrometer for high-speed acquisition of multiparametric single-cell
data. (If someone asks you if you want one of these instruments, just
say yes.)

The CyTOF enables researchers to detect 40 different components within
a single cell at the rate of 1,000 cells per second. It not only
measures static levels of proteins, useful in identifying different
types of immune cells, but it also detects minute changes in signaling
proteins within cells in response to various stimuli. Using this

device, a staggering amount of data is generated. And armed with
big-data analytical methods developed during the Human Genome Project,
Davis' multidisciplinary team is trying to bring order and meaning to
the output.

When it's all done, the team hopes to create a map of what a healthy
person's immune system should look like and a flow chart depicting how
immune-system signaling pathways work.

The ultimate goal of Davis' "Human Immunome Project" is to develop
better tools to answer immunological questions no one can answer now.
One of the first: What is wrong with the immune systems of patients
like Erin, and how can we help them get better?

Two years into her illness, Erin was broken. On any given day, she
would cycle through a laundry list of symptoms: brain fog, dizziness,
light sensitivity, a sore throat, nausea, swollen lymph nodes,
crushing fatigue, a racing heart, ear ringing, drenching sweats and
fainting.

During this time, she had lost some of her most active and athletic
friends, who grew impatient with the waxing and waning symptoms that
prevented her from the leaving the house on most days.

"I had times where I'd shut the blinds, lie down and hope for a better
day," says Erin. "Literally, my escape was through my dreams. I just
couldn't stand to be in my body."

Her life revolved around doctors' appointments. One physician ruled
out infectious diseases. Neurologists examined her for seizure
disorders and brain tumors. A rheumatologist evaluated her for
systemic lupus erythematosus and other inflammatory diseases. An
endocrinologist agreed that the origin of her fatigue was not the
thyroid, the adrenals or any other gland. A cardiologist assured her
it was not her heart.

None of them could settle on a definitive diagnosis, so the physicians
tagged her with the insurance code for chronic fatigue syndrome, a
controversial diagnosis for a set of symptoms also sometimes labeled
as CFIDS — for chronic fatigue and immune dysfunction syndrome — and
ME — for myalgic encephalomyelitis. The dominant moniker today is
ME/CFS.

No one knows what causes ME/CFS. Some think that an infectious agent
or overactive immune system triggers it. Others blame genetic flaws,
environmental factors or a combination of any of the above.

Roughly 17 million people worldwide (1 million to 4 million in the
United States) have ME/CFS. It strikes people of all ages and racial,
ethnic and socioeconomic groups. It is diagnosed two to four times
more often in women than men.

It's a syndrome that gets little respect in the medical community
because, with no tangible cause and an ever-changing constellation of
symptoms, patients often get labeled as hypochondriacs, malingerers or
seekers of addictive pain medications. The primary diagnostic
criterion for this condition is infuriatingly vague — "six or more
consecutive months of severe fatigue" — virtually unchanged since
1994.

As Erin went from specialist to specialist, well-meaning doctors grew
frustrated with their inability to help her. One day Erin blacked out
while driving, almost hitting a streetlight. After another fainting
accident, an emergency room physician told her, "On hot days, women
faint."

"I felt objectified, like a slab of meat," says Erin.

Finally, in 2009 Erin was diagnosed with postural orthostatic
tachycardia syndrome — which accounted for her fainting spells. For
treatment, her cardiologist sent her to Stanford Hospital's cardiology
clinic to see one of the nation's few POTS specialists, cardiac
electrophysiologist Karen Friday, MD.

POTS, which often accompanies ME/CFS, is a fainting disorder
associated with an abnormal increase in heart rate and low blood
pressure. The mechanism is unknown, but some people develop it after
contracting viral or bacterial infections like mononucleosis,
pneumonia or Lyme disease. Friday prescribed fludrocortisone to manage
Erin's low blood pressure, but to explore the possibility of an
underlying microbial trigger, she sent Erin to see Stanford professor
of infectious diseases José Montoya, MD.

Montoya, 54, dapper in his white coat and tie and smiling widely,
greeted Erin with a bear hug and told her in his thick Colombian
accent, "I want to make your life beautiful again."

"Dr. Montoya was a shining beacon of hope," says Erin.

Montoya's ethos to reduce patient suffering was shaped by a
hardworking, single mother and the iron-fisted priests at his Catholic
school in Cali, Colombia. He was accepted into medical school at age
18, after receiving the third-highest qualifying exam score in his
native country that year. After medical school he went on to Tulane
University School of Medicine for his residency, then joined the
infectious disease division at Stanford. At Stanford he became a
world-recognized authority on infections affecting heart transplant
recipients and on toxoplasmosis, a common parasitic disease.

Montoya conducted a detailed medical history and physical exam on
Erin, then ordered a battery of tests for viruses, bacteria and fungi.
His wide-net diagnostic approach paid off; he found two blood-borne
microbes — Human Herpesvirus-4 and the coxsackie virus — known to
cause chronic disease and POTS.

Though Montoya wasn't sure if these viruses were at the root of Erin's
illness or merely collateral infections, he started her on a high dose
of the antiviral drug famciclovir. Erin was relieved to finally have a
physician who wasn't going to punt her case to another specialist.

"I wanted to live my life again," says Erin.

Montoya is one of only a handful of clinician-researchers who accept
ME/CFS patients, and he currently has a waiting list of about 150.

Back in 2005, while attending a conference on toxoplasmosis in Paris,
Montoya told his mentor that he wanted to research ME/CFS. His mentor
scoffed at the idea, pointing to a homeless person lying in a Parisian
gutter.

"That's going to be you if you go into chronic fatigue research," the
mentor told him.

The hard truth is that most medical research labs rely in large part
on U.S. government funding, and the ME/CFS research budget is
insufficient to support a typical university research lab.

The National Institutes of Health, the largest funder of medical
research in the United States, allocated only $5 million for ME/CFS
research in 2013. (To put this in context, the annual NIH research
budget for multiple sclerosis, with 400,000 sufferers, is $112
million.) The reasons behind this underfunding are complicated.

One factor is that the NIH funding process favors well-defined
diseases that fit neatly into medical specialties like cardiology,
cancer and neurology. Most of these medical societies have organized
lobbying efforts, sometimes backed by pharmaceutical or medical
technology companies. Another factor is that collectively ME/CFS
patients are too sick to organize, raise money and lobby for research
dollars. And then there is the stigma associated with the condition;
some NIH grant reviewers are reluctant to fund research because they
believe that ME/CFS is a psychosomatic, "all in the head," disorder.
(To remedy this, the NIH recently created a special emphasis panel so
that researchers familiar with the condition review grant
applications.)

But none of this deterred Montoya, who was driven to do something for
the suffering patients queuing up for appointments.

Opportunity knocked in 2008 when a wealthy donor met with Montoya to
talk about the ME/CFS problem. He asked if a $5 million donation for
research could make a difference.

Montoya could hardly believe the sum, replying, "Yes, give me five years."

With the freedom of private funding, Montoya was able to take a
multifaceted and rigorous approach to analyzing ME/CFS. Traditionally,
NIH funding is awarded through medical specialty groups that tend to
favor research that tests one narrow hypothesis about a disease. For
example, a researcher might get funded to screen blood samples for one
virus, or treat patients with one drug. This approach takes a long
time, and researchers typically aren't able to share and build on
discoveries for years.

Montoya's game plan was to use a big-picture, big-data strategy to
find out what was wrong with patients like Erin. His first step in
launching the Stanford Initiative on Infection-Associated Chronic
Diseases was to convince a dozen or so academic investigators to
venture out of their comfort zones to research a wildly unpopular
disease using technologies yet to be developed.

Montoya convinced experts in immunology, rheumatology, genetics,
bioengineering, anesthesiology, neuroradiology, cardiology,
psychiatry, infectious diseases and bioinformatics to all work
together. The team members would be searching blood samples for
infectious microbes, inflammation-related molecules and genetic flaws.
They'd do brain scans and physical exams. They'd survey study subjects
for fatigue levels and medical histories. Then they'd compare all this
data with that of healthy people to see what was different. Next, he
launched a Bay Area recruitment campaign for 200 patients who met the
Centers for Disease Control's definition for chronic fatigue syndrome,
including Erin, and 400 age- and sex-matched healthy volunteers, all
of whom agreed to donate eight tubes of blood and be poked, scanned
and surveyed over the next decade.

The most complex part of the ME/CFS initiative was the exploration
into what was happening with the immune system of these patients. For
this role, he needed an expert who didn't care about the ME/CFS stigma
or how things have been done in the past. So he called on Mark Davis.

There will be blood

Davis, in well-worn jeans and running shoes, leans back in his chair,
surrounded by pillar-piles of scientific papers. At first glance one
might assume that he is — in California-speak — a mellow dude.

But looks can be deceiving, because Davis, who discovered how T cells
help a body fight off infections, is all about the fight. [See story,
page 38.]

As if to prove this point, Davis reaches into a random stack of paper
and pulls out a black-and-white photo of a collegiate fencing match.

"This is me," he says, pointing to a man in white flying off the
ground, plunging the tip of a silver foil directly between the eyes of
a masked opponent. "I like to poke people."

He then reaches into another stack of paper and pulls out the Dec. 19,
2008, issue of Immunity. It is a poke-in-the-eye to fellow
immunologists, an essay titled, "A Prescription for Human Immunology."

In this oft-quoted paper, he describes immunology as a field known for
its "impenetrable jargon, byzantine complexity and acrimonious
disputes."

He also chides many of his colleagues for spending too much time on
mouse studies and not enough on human studies. For immunological
studies, mice are fast and easy. They can be bred with specific
diseases, such as diabetes or Parkinson's, and then dissected to
evaluate the effectiveness of experimental treatments. There are
relatively few regulatory, financial and ethical hurdles to working
with mice. He emphasizes that lab mice live in isolated, disease-free,
temperature-controlled environments, far different from the crowded,
germ-ridden urban habitats of your typical Homo sapiens. (Most humans
are infected with six different herpes viruses, and who knows what
else.) The other problem with "mouse models" is that their common
ancestors are genetically separated from Homo sapiens by some 65
million years.

"Inbred mice have not, in most cases, been a reliable guide for
developing treatments for human immunological diseases," says Davis.

Instead, he would like to shift the focus of immunology research back
to where it can do the most good — to humans and their blood. And
along the way, he'd like to slay a few sacred cows of medicine.

First off, Davis believes it's time to rethink the CBC or complete
blood count, the most commonly ordered medical test on the planet. The
CBC, which has changed little since it was put into mainstream use in
the '50s, provides physicians with relative numbers of a patient's
red, white and platelet blood cells. This test isn't really "complete"
and it doesn't begin to capture the nuances of a working immune
system.

As researchers gain a better understanding of this system, he'd like
to develop a new set of metrics for immune system health that
communicates more of a continuum of health rather than a
black-and-white declaration. If the immune system is underactive, a
person is open to infections, mutations and premature aging. If it is
overactive, a person may suffer from allergies, autoimmune disease and
excessive inflammation. Davis wants to redefine health as an immune
system in balance, then develop better reporting tools to help
clinicians determine if a patient is fighting a virus, a bacteria, an
allergy or environmental toxins.

Davis' field of dreams for this effort is Stanford's Human Immune
Monitoring Center. Launched in 2007, today the center consists of
dozens of instruments that provide standardized, state-of-the-art
immune system analysis at the RNA, protein and cellular levels. Its
gene-sequencing instrumentation is located in a nearby building and
shared with the Stanford Functional Genomics Facility. For researchers
both inside and outside of the university, the center's 15-person
staff provides a one-stop shop for these services. At the start of a
project, the center's director, Holden Maecker, PhD, meets with
investigators to help plan studies and determine needs, such as what
samples to take, how to store those samples and which tests will best
answer their scientific questions. There is also assistance on results
archiving, reporting and data mining.

"We have about 60 different projects under way at the center right
now," says Maecker. These include searches for immune biomarkers for
aging, Alzheimer's, autoimmune disease, cancer, chronic pain,
rejection in organ transplantation and viral infections.

"I believe this is the only facility of its kind anywhere," says Davis.

Montoya's chronic illness initiative is the largest project in the
HIMC at this time, and the complexity of the task ahead is daunting.
The staff is looking for meaningful patterns in the many components of
the 600 blood samples, including dozens of cytokines, 35 cell-surface
proteins, 15 or so types of blood cells, and more than 47,000 genes
and regulatory nucleic acids. The challenge is not only to quantify
the normal ranges for these components, but also to understand
relationships between the components and reverse-engineer the cascade
of biochemical reactions that drive immune system processes. He
anticipates it will take about a year to run all 600 samples through
the processes.

"It's like dumping a hundred different puzzles on the floor and trying
to find two pieces that fit," says Davis.

The workhorses for these tasks are the center's two CyTOFs. Stanford
has seven of these $630,000 instruments, more than any other academic
medical center, thanks to Garry Nolan, PhD, a Stanford professor of
microbiology and immunology. Nolan purchased the first commercially
available CyTOF, and as an early adopter developed protocols for using
it in cancer biology, immunology and cell biology. He now holds equity
in Fluidigm, a company that manufactures the machines.

His enthusiasm for the technology and his willingness to share what
he's learned has catalyzed an active Stanford community of CyTOF
experts.

"With seven CyTOFs on campus, Stanford continues to innovate and lead
the way in 'deep-profiling' studies of the immune system," says Nolan

Through this work, the Stanford team hopes to gain a better
understanding of the complex, inner workings of the immune system.
This will ultimately give physicians and their patients the tools to
answer the fundamental question, "How is my immune system doing
today?"

Putting the pieces together

This past March, four years after the launch of the ME/CFS initiative,
Montoya held an all-day symposium to present early findings on what's
happening within the hearts, blood, brains and genomes of ME/CFS
patients. The lecture hall was packed with researchers from Australia,
Canada, the United Kingdom and the United States, as well as patients,
all eager for any news on a research agenda that had been stalled for
decades.

(These presentations can be watched at
http://mecfs.stanford.edu/2014SymposiumVideo.html.)

At the end of the day, the biggest news was the identification of a
number of biological markers that indicate ME/CFS patients may be
suffering from out-of-control inflammation.

First up was a neuroinflammation researcher, Jarred Younger, PhD, who
worked with the HIMC to measure daily fluctuations of 74 blood markers
and cytokines. For this study, published in the Journal of
Translational Medicine
(http://www.translational-medicine.com/content/11/1/93), volunteers
gave blood once a day for 25 days, and reported their fatigue levels
on a hand-held computer twice a day. (Younger moved to the University
of Alabama in Birmingham in August.) Through complex statistical
analysis, the team found 12 cytokines that were consistently elevated
on days that ME/CFS patients felt the most fatigued. One of these
cytokines, leptin, activates microglial cells, the brain's first line
of defense against infections. When microglial cells are primed, they
start pumping out signaling chemicals that generate the flulike
symptoms commonly reported by ME/CFS patients — fatigue, headaches and
brain fog.

Amit Kaushal, a medical resident with a PhD in bioinformatics, did the
first pass on genomic analysis. For his part of the investigation, he
scanned the blood of 200 ME/CFS patients and 400 healthy subjects for
47,000 gene elements, then ran this data through the Nextbio Disease
Atlas, a publically accessible database that catalogs gene markers
associated with specific diseases. After analysis, he found genetic
markers in the blood of ME/CFS patients similar to those in patients
with well-defined chronic inflammatory diseases.

The quarterback for the search for infectious microbes is W. Ian
Lipkin, MD, a renowned microbe hunter and the director of the Center
for Infection and Immunity at Columbia University's Mailman School of
Public Health. He is using high-throughput sequencing platforms that
enable rapid identification and molecular characterization of known
and novel disease agents.

"We decided to go in without any preconceived notions about what we'd
find," says Lipkin. "Our approach is comprehensive, rigorous and quite
deep."

In the first analysis, his team found no significant differences in
the types of infectious organisms present in the blood of people with
ME/CFS or their matched normal controls. In the next phase he'll
search inside the blood cells and analyze the gastrointestinal
microbiome for the presence of bacteria or viruses that may trigger
the immunological disturbances that are so disabling in ME/CFS. The
objective of this work is to identify the agents responsible for
initiating and perpetuating disease. This could lead to vaccines,
drugs or probiotic interventions.

While not all of these results have been published or independently
confirmed, the researchers were excited about finding measurable,
physical differences between ME/CFS patients and healthy controls.
(Stanford assistant professor of radiology Michael Zeineh, MD, has
identified structural brain abnormalities in the ME/CFS patients —
findings are slated for publication in the coming months.) More pieces
of the puzzle are coming together, providing other ME/CFS researchers
with ideas to build on. For ME/CFS patients it was validation — their
symptoms are real, with measurable biological markers.

Eight months after seeing Montoya, Erin's recovery from ME/CFS started
with fleeting windows of cognitive clarity. She was on high-dose
antivirals and POTS medications for about five years, and her recovery
was infuriatingly slow and inconsistent. It was like wiping off a
mirror in a steamy bathroom. She saw her former self briefly, then the
image fogged over again.

Montoya doesn't know why these drugs worked for Erin, but he knew from
treating other patients that beating back viral infections sometimes
helps get an immune system back into balance.

Erin also believes that the antiviral and POTS drugs were instrumental
in her recovery, but other factors — family support, meditation and
Montoya's coaching — were also important.

One of Montoya's key messages to ME/CFS patients is this: If you have
one good day, don't try to make up for lost time by overexerting
yourself.

"Don't burn out your engine," says Montoya, because the resulting
crash can reset the recovery process by months.

And at appointments he would remind Erin, "Take in all the love that
is all around you and use it to heal."

During her illness, Erin's mother became her advocate, managing her
medical issues and driving her to appointments. Her father added her
to his health insurance policy so she could afford the visits to
medical specialists. And her sister, who is her best friend and
housemate, was her wingman.

"My sister was my voice of hope," says Erin. "She'd tell me, 'OK, you
took five steps forward and two back today, but maybe tomorrow you'll
take six steps forward and only one back.'"

It's been seven years since Erin fell into the abyss of a mysterious
illness. This girl interrupted, now a woman, is picking up the pieces
of her life and starting to live again.

Today, she works as a social worker and therapist. She plays soccer in
a local league. She's also started dating again. It gives her hope
that researchers are finally focused on ME/CFS and that others may be
able to benefit from the treatment that has given her life back.

As she packs for a camping trip, she reflects on how this illness has
changed her.

"It's made me a person of more depth and compassion," says Erin.
"Before, I'd been so active, I didn't have the opportunity to sit with
myself in this way and take a deeper inward journey. Adventure had
been the focus of my life. As I sit with clients who are coming in
with devastating situations, with unknown futures, I'm able to share
with them hope and the power of self-fulfilling prophesies. I help
them find those things inside, spiritually, that will help them meet
the adversities in their lives."

At this point her voice becomes soft, almost a whisper, as she says,
"I'll always miss playing soccer at a competitive level, but I've
gained so much. It's helped me reinterpret what success looks like.
It's not everything you achieve and how many games you win. It's the
process of getting there. This is my biggest achievement — recovering
from this illness."

In soccer, a "hat trick" is where a player scores three goals in a
row. Montoya achieved his first goal, the launch of the first major
ME/CFS research initiative, with a little funding luck and the
recruitment of a top-notch research team. With the assistance of Davis
and his immune system hackers, he's close to reaching his second goal:
the identification of biomarkers and causes, which will enable
physicians to provide a definitive diagnosis and treatment options to
patients suffering from this debilitating condition.

The third goal of his hoped-for hat trick will be a whole new way to
look at the human immune system. It's a game changer. It will provide
researchers with a new playbook of research strategies to help them
discover the causes of other confounding conditions, from Lyme disease
to multiple sclerosis to fibromyalgia. It will provide clinicians with
a better set of metrics for assessing patients' health. And then the
patients lying in dark rooms with forgotten diseases, whose numbers
could fill hundreds of soccer stadiums, will have reasons to stand up
and cheer.



Kris Newby is the communications manager for Spectrum, the Stanford
Center for Clinical and Translational Research and Education. Email
her at krisn@stanford.edu.

Email the author- krisn@stanford.edu , medmag@stanford.edu

Sunday, October 12, 2014

Cards for Karina's birthday, November 7

 
Karina Hansen is being held in a hospital against her will.
 
Her birthday is in November. 
 
Postage from the US is $1.10 -- if you don't have an airmail stamp, 3 regular stamps is more than enough.
 
 

Tuesday, October 7, 2014

When Gluten Sensitivity Isn't Celiac Disease - NYTimes.com

 
People with irritable bowel syndrome often find that their symptoms lessen or disappear when avoiding foods rich in Fodmaps; however, it can take six to eight weeks on a low-Fodmap diet to see a significant improvement.
 
In addition to the inconvenience and added expense, a gluten-free diet can result in a poor intake of fiber and certain essential nutrients. It may be wise to consult a registered dietitian if you plan to go gluten-free.

What is chronic fatigue syndrome, and why aren’t we doing more to treat

 
 
nearly half of doctors thought that CFS was or might be psychosomatic, and 58 percent said there wasn't enough information available to help them diagnose it. 

Friday, October 3, 2014

Cytokine profiles of chronic fatigue syndrome and multiple sclerosis

199: Cytokine profiles of chronic fatigue syndrome and multiple sclerosis patients

Conclusion

Cytokines patterns supported both Th1 and Th2 cytokine profiles in CFS and MS. Similarities in the cytokine profiles of MS and CFS, combined with the already acknowledged similarities in immune cell function and symptoms, suggests a neuroimmune pathology for CFS with parallels to that of MS.

 

* * *

Why, when my disability comes up in conversation with someone new, I start with the comment "I have something very similar to MS" -- they really are very similar and MS is something they can get their heads around.  Many times, the conversation ends there.

If they ask for more information, level 2 is "a neurological disease combined with poor immune function."  Again, many times this is all the information necessary.

If they continue to probe, "CFS, which is known in the rest of the world as Myalgic Encephalomyelitis", and a brief explanation of WHY the US insists on calling it CFS.

 

Beyond tired

 
Good quotes from experts to use against IAIYH

Thursday, October 2, 2014

CFS Survey

Hi, my name is Deborah Brooks. I also suffer from chronic fatigue syndrome. I am currently completing a Master of Clinical Psychology degree at Cairnmillar Institute in Australia, and my supervisor for this research project is Dr Alistair Anderson. We are seeking participants to complete a survey for a research project. The research involves answering some questions about your experience of Chronic Fatigue Syndrome, the way you think about it and the types of support you have around you. The research should take about 30 minutes of your time. Your contribution would be greatly appreciated. To receive more information please click the link, otherwise feel free to ignore this invitation. Thank you for your participation.
Deborah Brooks BA (Hons) and Dr Alistair Anderson PhD MBA GradDip AppSc
https://www.research.net/s/6MRTP3Q

Tuesday, September 30, 2014

AHRQ Draft Report -- Fundamentally and Irredeemably Flawed

[This is a blog post by Erica Verrillo. She mentions below: "Anyone
who wishes to reprint this blog post may do so. (Remember to link back
to the original and provide attribution."

Aside: I posted Jennie Spotila's review of the draft yesterday but it
never came through on my e-mail account. It's here:
http://bit.ly/1rzvZWw   i.e.
http://www.occupycfs.com/2014/09/29/a-review-of-the-p2p-systematic-review/ .
Tom]

http://bit.ly/1mNQ76Z   i.e.
http://cfstreatment.blogspot.ie/2014/09/the-ahrq-draft-report-fundamentally-and.html
 
Monday, September 29, 2014

The AHRQ Draft Report - Fundamentally and irredeemably flawed

The Jury, by John Morgan
The Agency for Healthcare Quality and Research (AHRQ) has released its
draft report on the Diagnosis and Treatment of Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

For those who find it hard to keep track of the plethora of reports,
committees, panels, and reviews currently underway, the AHRQ report
provides the basis for the Pathways to Prevention, or P2P Workshop.
The P2P Workshop has been convened by the NIH for the purpose of
making a report that will be used to evaluate research grants for
ME/CFS, and upon which pharmaceutical companies will base their
clinical trials.

The P2P panel is composed entirely of non-experts. The preference for
non-experts was intended, according to Susan Maier, Executive
Secretary for the NIH Advisory Committee on Research on Women's
Health, to act like a "jury," by which she meant the composition of
the panel was meant to be unbiased.

Leaving aside for a moment the absurdity of consigning a research case definition for a disease to people who aren't even physicians, the
jury system itself does not work. Trial by jury is one of the most
inefficient systems of justice in the world. Swayed by bombastic
arguments, prejudice, and crocodile tears, juries of twelve unbiased
peers routinely find innocent people guilty, and allow the guilty to
go free. As a method for determining who gets grants for medical
research, anything even remotely resembling the jury system is
entirely inappropriate.

I have touched upon some of the short-comings of the draft report
below. I've tried to keep it brief. (There is so much wrong with this
report that if I were to write a thorough critique, it would be longer
than the report itself.)

You can read the AHRQ draft report and appendices here
<http://www.effectivehealthcare.ahrq.gov/research-available-for-comment/comment-draft-reports/?pageaction=displayDraftCommentForm&topicid=586&productID=1976>.

You can make comments (until October 20) here
<http://www.effectivehealthcare.ahrq.gov/research-available-for-comment/comment-draft-reports/?pageaction=displayDraftCommentForm&topicid=586&productID=1976>

You can read more about the P2P in these posts:

Advocates to NIH - "Pull the P2P!"
<http://cfstreatment.blogspot.com/2014/06/advocates-to-nih-pull-p2p.html>
All the reasons why the P2P is dangerous

Protocol for Disaster?
<http://cfstreatment.blogspot.com/2014/05/protocol-for-disaster.html>
Jennie Spotila explains why the AHRQ report is a recipe for disaster,
and how they pulled a "bait and switch" by changing their Key
Questions.

P2P: The Question They Will Not Ask
<http://cfstreatment.blogspot.com/2014/07/p2p-question-they-will-not-ask.html>
Mary Dimmock and Jennie Spotila explain how refusing to consider how
CFS and ME differ will affect the results of the P2P Workshop.

Note: Anyone who wishes to reprint this blog post may do so. (Remember
to link back to the original and provide attribution.)
_______________________

A BRIEF CRITIQUE OF THE AHRQ DRAFT REPORT

By Erica Verrillo

Point 1: The draft report shows limited understanding of the illness

The report begins with the erroneous statement that "The term ME was
first used in the 1930s after an outbreak of neuromyesthenia ..."

A quick google search would have revealed that "myalgic
encephalomyelitis" was first used in a letter to the editor entitled,
"A New Clinical Entity?" published in the Lancet in 1956. The authors
– Emile Nihoul, Lise Quersin-Thiry, S.Chalmers Parry and Robert A.
Good – were referring to what became known as Royal Free Disease, an
outbreak that occurred in London's Royal Free Hospital in the 1950s.
Obviously, none of the members of the panel felt inclined to check
their facts.

The report goes on to say that "Uncertainty persists regarding the
etiology and whether the condition reflects a single pathologically
discrete syndrome, subsets of the same illness, or a nonspecific
condition shared by other disease entities." This statement reflects a
thorough misunderstanding of how the illness is perceived by people
who investigate and treat it. There are no experts in ME/CFS who would claim that it is a "nonspecific condition shared by other disease entities." There are, however, numerous researchers who author papers
on "chronic fatigue" and "fatiguing illnesses" such as cancer and MS.
The authors of the AHRQ draft report, unlike experts in the field, do not have enough background to be able to distinguish between "chronic
fatigue" and ME/CFS.

While the introduction to the report is not crucial, it does indicate
that the people writing it not only had no knowledge of the illness,
but that they did not want to spend any time acquiring it. The willful ignorance that is demonstrated in the introduction permeates the entire report.

Point 2: Problematic Search Methods

In order to find abstracts and articles, the AHRQ searched three main
databases using the terms: fatigue; Fatigue Syndrome, Chronic; and
Encephalomyelitis. With the notable exception of PsycINFO, a database
of abstracts of literature in the field of psychology produced by the
American Psychological Association, these are the same databases used
by the Drug Class Review: Drugs for Fibromyalgia: Final Original
Report <http://healthandwelfare.idaho.gov/Portals/0/Medical/MedicaidCHIP/FibromyalgiaFinalExecutiveSummary.pdf>
published by the Oregon Health & Science University in 2011. Ovid and
EBM/Cochrane are large medical databases, though they don't
necessarily include every study conducted on a given illness or
condition. Only controlled trials are included in the Cochrane
<http://www.cochrane.org/cochrane-reviews> databases.

The most glaring problem with the search is that it included studies
on "fatigue." Indeed, a number of studies included in the review were
on "fatiguing illnesses" rather than ME/CFS. Like the introduction,
the search reflects a state of confusion on the part of the authors.
The confusion is not altogether surprising, given that researchers
also appear to be confused about the difference between CFS and
chronic fatigue. Nonetheless, experts in the field are not confused.
They are aware that while ME has been used abroad since the 1950s, it
has not been used as a diagnosis here in U.S. Specialists have been
limited to CFS as a diagnosis, like it or not.

A second problem is that with the perennial lack of NIH funding for
ME/CFS controlled trials, much of the information about treating the
disease is based on clinical observations. None of these were
included. nor were studies that were controlled, but which did not
meet the set of criteria for inclusion in the review – such as
addressing the Key Questions.

Point 3: Studies used for the report are inadequate to address the Key Questions

The studies that the reviewers included were not only too few, they
were completely inadequate to properly address the Key Questions.

The Key Questions to be addressed by the report are as follows:

1. What methods are available to clinicians to diagnose ME/CFS and how
do the use of these methods vary by patient subgroups?

a) What are widely accepted diagnostic methods and what conditions are
required to be ruled out or excluded before assigning a diagnosis of
ME/CFS?

b) What is the accuracy and concordance of diagnostic methods?

c) What harms are associated with diagnosing ME/CFS?

2. What are the (a) benefits and (b) harms of therapeutic
interventions for patients with ME/CFS and how do they vary by patient
subgroups?

a) What are the characteristics of responders and non-responders to
interventions?

There are problems with the wording of some of these questions. For
example, in a country in which 80% of the physicians don't believe
that CFS is a real disease, what could "widely accepted" be referring
to? And, "What harms are associated with diagnosing ME/CFS?" seems to
have an a priori assumption that diagnosing the disease may in itself
cause harm. But aside from the oddness of the wording, the studies
they chose do not adequately address the questions.

The criteria for exclusion from the review included, among others,
that the study did not last not long enough (therapeutic trial of less
than 12 weeks), was published before 1988, had wrong study design, or
did not address a Key Question. (There were 8 more exclusions.)

From among the thousands of studies that have been conducted, the
criteria limited the review to a scant 64 studies. Some of the
landmark studies that were excluded were all of the studies
demonstrating immune dysfunction
(e.g. NK cell deficiency studies by
Brenu et al.), studies of viral reactivation and antiviral treatments
(e.g. all Lerner and Jessop studies, Kerr parvovirus B19 study),
studies documenting brain abnormalities (e.g. Lange's MRI study), and
all of the papers published by Tom Kindlon on harms associated with
GET and CBT. Not even appearing on the excluded list were the
ground-breaking 2-day CPET studies conducted by Keller, Stevens and
Snell, Peckerman's cardiac insufficiency studies, and the recent
Watanabe study on CNS inflammation.

The fact that some of the most significant studies in the ME/CFS
literature did not even appear on the excluded list was mind-boggling.
Of the studies that appeared on the exclusion list, the reasons given
were various, but among the most frequently cited were that the
studies did not address the Key Questions. Yet, several studies that
directly addressed the Key Questions were omitted (for example, 2-Day
CPET studies were not even considered), while studies that did not
directly address the Key Questions were included. This arbitrariness
permeated the entire study selection process.

(Going though the studies that were accepted I found three that did
not meet the criteria for inclusion without reading further than the
first page. I also found studies in the excluded section that met the
criteria. Having no experience with ME/CFS, the panel lacked the
ability to distinguish relevant from irrelevant studies.)

Point #4: Contradictory and unsupported conclusions

In terms of treatment, the report was heavily weighted toward
psychological studies. Out of the 36 studies used to address Key
Question 2, 14 concerned CBT. Considering that the PACE trial was
included, but not any of its critiques, it is not surprising that the
report favored CBT:

"Based on 13 trials, cognitive and behavioral therapy (CBT), either
group or individual; self-instruction booklets; pragmatic
rehabilitation: peer-to-peer counseling: and symptom consultation
provide improvement in fatigue, function, quality of life, and
employment in adult patients with ME/CFS."

Yet, after a detailed examination of the actual results of the trials,
the report went on to conclude that:

"In summary, head-to-head trials had mixed results with two trials
finding improvement with GET, two trials finding improvement with CBT,
and one trial finding no differences between CBT, GET, and usual care.
In considering non-head-to-head trial data, there is low strength
evidence that CBT and GET provide similar improvement in measures of
fatigue and/or functioning."

Those reading this report will base their recommendations on the first
statement, as the second statement requires wading through a lot of
statistics. They won't even realize that the conclusion that CBT
provides "improvement in fatigue, function, quality, and employment"
is ultimately derived from the results of a single, deeply
manipulated, study. (The PACE trial.)

In terms of Key Question 1, the report suffered from similar
inconsistencies, For example, the report concludes with the statement
that "the negative effects of being given a diagnosis of ME/CFS appear
to be ... universal."

I could not find a single study from among the list of included
studies that would support the conclusion that the diagnosis of ME/CFS
had negative effects universally.

In the Asbring and Narvanen study
<http://www.ncbi.nlm.nih.gov/pubmed/11837367> entitled "Women's
experiences of stigma in relation to chronic fatigue syndrome and
fibromyalgia," the authors concluded that " The women experienced
stigmatization primarily before receiving a diagnosis." [Emphasis
mine] In addition, they stated that "Stigma consisted of questioning
the veracity, morality, and accuracy of patient symptom descriptions
and of psychologizing symptoms."

The Dickson et al. study
<http://www.tandfonline.com/doi/abs/10.1080/14768320600976224#.VChMivmICm4>,
"Stigma and the delegitimation experience: An interpretative
phenomenological analysis of people living with chronic fatigue
syndrome," reported that "participants reported delay, negotiation and
debate over diagnosis: further, they perceived their GPs to be
sceptical, disrespectful and to be lacking in knowledge and
interpersonal skills." [Emphasis mine]

In the Green et al. study
<http://informahealthcare.com/doi/abs/10.1300/J092v05n02_04?journalCode=wcfs>,
"Stigma and Chronic Fatigue Syndrome," the authors state that "Most
subjects (77%) were labeled as 'psychological cases' by one or more of
the physicians (mean = 8) consulted, but of the 4 stigma measures,
only disclosure was related to physician labeling." This means that
patients only felt stigmatized by their physicians after they
attempted to educate them about ME/CFS.

There was nothing in these studies to support the claim that the
diagnosis itself had negative effects. Rather, it was the delay in
diagnosis, and subsequent debate on the part of family and physicians
– as well as the delegitimation resulting from a trivializing name –
that led to negative effects.

In sum

The conclusions reached in this review were the result of a poorly
framed set of key questions, a literature search that managed to
exclude the most fundamental research studies, and a misinterpretation
of the studies that were eventually deemed acceptable for inclusion.
As a whole, this report is fundamentally, and irredeemably, flawed -
even given its narrow search results.

These major short-comings are the inevitable result of appointing a group of people who have no expertise in ME/CFS to evaluate 26 years of research. ME/CFS is a disease that demands expertise. It cannot be  evaluated be a panel of non-experts.
- See more at: http://cfstreatment.blogspot.ie/2014/09/the-ahrq-draft-report-fundamentally-and.html#sthash.Gh65Hra9.dpuf

Monday, September 29, 2014

Enterovirus 68 producing polio-like symptoms

 
 
Dr. Bruno tells me that there are 72 enteroviruses, and the polio vaccine covers only the 3 worst ones. 

ME/CFS patients were always known to be immune in later polio outbreaks.  Maybe this new interest in enteroviruses and polio-like symptoms will get more attention for similar symptoms in ME/CFS.
 
We can hope, right?
 
 

Thursday, September 25, 2014

Treatment Resistant Depression or Chronic Fatigue Syndrome?

 
"I have now treated dozens of adults and adolescents who came to me with the diagnosis of "treatment-resistant depression" and instead they had Chronic Fatigue Syndrome. With proper treatment, this viral illness can be successfully controlled."
... The doctor provided them with the option of going on Valacyclovir, noting that the published evidence that it would work was small and confined to adults, not adolescents.  They began on an oral dose 500 mg BID and worked their way up to 1000 mg BID over a couple of weeks.

Results

"The medical understanding of CFS has been impeded to a degree by the resistance to the concept  of chronic viral infections of the central nervous system."

Almost all of the adolescents responded quickly to the antivirals. Within three months 12 out of 15 reported greater than an 80% improvement in symptoms. After 8 months 14 out of 15 adolescents reported increased energy, improved sleep, increased motivation, and "return to normal functioning". Ten of the 14 reported a "complete resolution of fatigue" and their depressive symptoms disappeared.

 
* * *
Yes, CFS and depression share a few symptoms, but there are symptoms of CFS that are never ever seen in depression.
 
Unfortunately, most doctors hear "fatigue" and their brain shuts down; they're already married to the diagnosis of depression and when the patient waves red flags like "rash" or "fever" in the next sentence, the doctor ignores them.
 
Anti-depressants mostly make me violently ill.  They don't help because I don't have depression.  And, sure enough, when I finally got a C-Reactive Protein test, it was 10x normal, proving the problem was infection/inflammation, and not an emotional problem.
 
Valcyte is an anti-viral.  If you have a virus, it helps.  If you have depression, it doesn't. Hmmmmm.

This is one of those articles you should print out if you need to go to a new doctor; demand the C-RP test and use it to prove you don't need anti-depressants.
 
If your doctor won't prescribe an anti-viral, you can get Lysine at the health food store; obviously it's not as effective as a prescription, but it has some anti-viral properties and may do something.  Tagamet has also been reported as being helpful -- generic version is relatively inexpensive and available without a prescription.  Anything is worth a try while waiting to find a doctor who takes you seriously!
 
 

Dopamine, the Basal Ganglia and ME/CFS – Treatments and Surprises

Dopamine, the Basal Ganglia and ME/CFS ‪#‎II – Treatments and Surprises

In the second blog on Miller's basal ganglia findings in ME/CFS we explore treatment possibilities (including methylation), a possible Fibromyalgia connection, and watch as a finding from ME/CFS's past unexpectedly shows up for the first time in years.

Check out part II of the basal ganglia saga in ME/CFS in

Wednesday, September 17, 2014

Legal win for ME patient in the US - Shout Out About ME

 

When Ms Burmeister filed her lawsuit against the HHS and NIH back in January this year she accused federal administrators of playing a "secrecy game".

"Patients with this disease have been harmed, dismissed, ridiculed, abused, neglected and completely abandoned by the government, and as a result, by the medical profession, insurance companies, friends, family, neighbors, colleagues; in other words, by society at large," blogged Ms Burmeister at the time.

"This is largely due to the unscientific government-sponsored case definitions, another one of which was ordered from the IOM, which is the issue at the heart of my FOIA request.

 

 

Wednesday, September 10, 2014

ME/CFS HealthWatch - Jennifer Brea Talks About Obstacles, Adjustments, a...

September 10th, 2014

Interview: Jennifer Brea Talks About Obstacles, Adjustments, and Inspiration

Jennifer Brea reveals her inspiration for creating the film, Canary in a Coal Mine, and shares some of the obstacles she has faced in her ongoing battle with ME/CFS. Read More »
CFS News and Lifestyle
Burmeister Wins Lawsuit: Court Rules Government Must Produce IOM Documents
HHS and NIH violated federal law in response to FOIA request for IOM documents. Read More »


Models Suggesting Chronic Fatigue Syndrome Is "Amenable to Intervention" Provide Hope: Dr. Broderick Talks
Scientists believe that ME/CFS and FM can be treated by "resetting" the brain. Read More »


Post-Exertional Debility is an Important Symptom during Myalgic Encephalomyelitis
A physician makes the case to include post-exertional debility in the definition of ME/CFS. Read More »


Is the physical examination normal in CFS?
Heart rate and blood pressure abnormalities can be observed during a physical examination. Read More »


Diet Recommendations for Chronic Fatigue Syndrome & Myalgic Encephalomyelitis Patients
Patients need to maintain as wholesome a diet as possible to help their bodies heal. Read More »

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VIDEO: 30 Years of Neglect: May 12 Demonstrations in San Francisco and Washington, DC