Saturday, July 18, 2009

Cheney on Stem Cells

CFS and Stem Cells: A Warning

by Carol Sieverling

Paul Cheney, MD, PhD has accompanied two groups of CFS/ME patients to
stem cells clinics in Costa Rica and Panama this year, and many more
will be going to Panama this fall. The stem cells come from the
afterbirth (placenta and umbilical cord) of healthy new born infants and
are thus considered adult stem cells, not fetal. Future patients will
also be given their own stem cells derived from belly fat in addition to
the afterbirth stem cells.

Though it's early yet to know the full benefit of the stem cell
transfusions or how long such benefits will last, initial results range
from good to spectacular. This has prompted several CFS/ME patients to
seek out stem cell therapy on their own.

Dr. Cheney has three concerns regarding CFS/ME patients undergoing stem
cell therapy.

1) Re-Boot Gene Expression with Cell Signaling Factors
Dr. Cheney believes that better and longer lasting results will be
obtained from stem cell therapy if patients first shift or "re-boot"
their gene expression to a more normal genetic expression. "Gene
expression" may not make sense to some, so here's a simple explanation.
Individual genes are either "on" or "off". If they are off, something
may trigger them into turning on, such as diet, environmental exposures,
pathogens, toxins, stress, etc. Once on, it's a matter of degree, like a
dimmer switch. They can be on just a little, on moderately, or on all
the way.

In all chronic illnesses, the body attempts to compensate or adapt to
the illness. Doing so shifts the gene expression. The gene expression of
a person with CFS/ME is far from normal - it reflects the illness. The
overall gene expression is difficult to change. Even if you address the
underlying cause(s) of an illness, it can take months or even years for
the body to realize the illness is gone and allow the gene expression to
gradually shift back to normal.

A great example of this is Dr. Cheney's own heart transplant made
necessary by a diagnosis of idiopathic cardiomyopathy. After two years
of increasingly severe symptoms, the underlying problem of heart failure
was corrected surgically in a matter of hours. However, even after an
outstandingly successful transplant, a resulting cardiac output of
someone in their 20's, and time to recover from the surgery itself, Dr.
Cheney's functional capacity was still very much what it had been before
the transplant. He asked his doctors why he still felt so incapacitated.
One doctor told him, "Well, your body adapted to the reality of a
failing heart in order to survive and now that your heart is fixed, it
will take a year or two for your body to re-adapt back to the reality of
your new heart."

In other words, all chronic illness always has two problems to solve:
the problem at the core of the illness and the adaptation the body makes
to survive. The first can sometimes be fixed very quickly (hours to
weeks) but the latter takes time. There is no "hours to weeks fix" to
the second problem of adaptation because it becomes programmed into
one's gene expression, also known as phenotype.

Since his surgery and adaptive cure from heart failure, Dr. Cheney has
found that certain low molecular weight peptides called Cell Signaling
Factors (CSF's) have the ability to more quickly shift gene expression
towards normal as measured by echocardiography. CSF's can often improve
function within 90 days, though tests results show progress well before
the patient actually experiences it. For instance, measurements of
cardiac diastolic function typically improve months before patients
report feeling better and doing more. There is also the problem of
genotype corruption which can only be addressed by stem cells.

Over the last three or four years he has determined which CSFs are most
beneficial to CFS/ME patients. He does not order them from a company,
but has arranged for his own private production of heart, pancreas,
liver and kidney from the respective organs of bison. The brain CSF,
also privately produced, is of porcine (pig) origin. The CSF's are in a
cream-like form and are typically rubbed into the forearms three times
per week to daily.

The use of bison as the primary source for the CSF's stems from several
factors. Bison are incredibly aerobic animals with vast aerobic
energetic potential. They are significantly more organic than virtually
any other meat source. Finally, they are only one of two known animals
who never get cancer, the other being shark. They also live three to
four times longer than beef cattle and they do not have "mad-cow"
disease, though skin cream makes this a non-issue. Finally, bison CSF's
are 50-100% more potent than comparable porcine or bovine CSF's, as
measured on echo.

Dr. Cheney uses adrenal and thymus CSF's for testing purposes only -
never for treatment. CFS/ME patients respond very negatively to them,
usually with a major drop in energy on echo. Adrenal and thymus CSF's
should never be taken by CFS/ME patients. Porcine Liver also has a very
negative effect in CFS patients and should not be used either for therapy.

Dr. Cheney is the only source of CSF's made from bison because at this
time he feels that they need to be used only under the care of a medical
professional familiar with their use. For this reason, he only sells
them to his own patients. He plans to also sell them to a few other
physicians who are currently learning about their use, how to
incorporate appropriate pretreatments, and how to individualize the CSF
protocol for their patients. Information about the physicians who have
access to the CSF's and know how to use them will soon be posted on the
Cheney Clinic web site (

There is anecdotal evidence that the use of CSF's can significantly
improve the benefits of stem cells. An 80-year-old man with Parkinson's
Disease as well as Coronary Artery Heart Disease (history of two heart
attacks) was part of the group that received four consecutive daily
transfusions totaling 45 million stem cells the last week of May. (He
does not have CFS/ME but is related to one of the CFS/ME patients.) He'd
been using four of the CSF's for 18 months. While still in Panama
receiving the stem cells, the tremors began disappearing and he was able
to hold a fork and eat peas for the first time in two years.

One week after his last transfusion, an echo revealed that an area of
his left ventricle (a chamber of the heart) that prior to the stem cell
transfusions was dead and not moving, was now alive and moving. At that
time he also had much less hand tremor, was walking more upright with
much less shuffle and swinging his legs much better when he walked. He
threw away his cane. The allergic bags under his eyes disappeared. He
looks, acts and talks as if he were 10 years younger. His face is pink
now rather than pale and gray. He is more alert and doesn't slur his
words. He feels much better and has much less foot edema. He even went
back to work part-time.

The doctors at the Stem Cell Institute, who are familiar with
Parkinson's cases, were astonished at the degree of benefit he
experienced, and so quickly. They are very intrigued by the potential of
CSF's to increase the benefits of stem cells.

Three studies* of patients who received stem cell transplants in the
90's revealed that despite initial success, about ten years later the
stem cells had been corrupted and the patients' disease returned. Though
the stem cells worked as expected and lasted 10 years, they were
eventually corrupted by the same disease process that damaged the very
cells they were replacing.

Dr. Cheney believes that CSF's are necessary both before and after the
transfusions to increase both effectiveness and durability of the stem
cells. According to Dr. Cheney, "Putting stem cells into a corrupted
environment will eventually corrupt the stem cells and blunt their
otherwise potentially impressive benefits." To use another of Dr.
Cheney's analogies, if you correct the "software" problem first (shift
phenotype with CSF's) and then address the "hardware" issue (shift
genotype with stem cells), you'll get much better results. You don't
expose a new hard drive to corrupted software programs, or the system
will crash again! This is why he recommends that his patients continue
to use the CSF's even after the stem cell transfusions. Doing so is
designed to prevent the gene expression from shifting back to the
configuration of the original illness and corrupting the stem cells.

2) Care must be given to a corrupted gut ecology before receiving stem
Recent publications, especially by Kenny DeMeirleir out of Belgium, as
well as others, suggest that corrupted gut ecology is playing a very
large role in a subset of the sickest CFS/ME patients. This corruption
must be addressed or it may thwart the effects of stem cells or degrade
their benefits over time. The gut ecology must be measured by
appropriate tests (such as the GI [2] panel from Diagnos-Techs, and an integrated effort made to reduce the effects of
this corrupted gut ecology on CFS/ME physiology. Stem cells can help
attack the root causes of this corruption but the gut corruption and its
consequences need to be minimized ahead of the stem cell transfusions.
The core approach to improving the gut ecology is a modified elimination
diet, copious use of digestive enzymes, immune support using bovine
derived antibodies and immune factors (colostrum) and the judicious and
careful use of probiotics with special attention to support of commensal
E.Coli (a beneficial form of E.Coli marketed as Mutaflor).

3) Go to a high quality stem cell clinic affiliated with a US company.
Dr. Cheney's third concern is the quality of the stem cell laboratory
and clinic doing the stem cell transfusions. Dr. Cheney chose MediStem,
Inc (, only after careful research and consideration of
quality control issues. Medistem Inc. is a US-based company that assists
in the operation of two clinics in Central America (
because those locations allow them to offer the treatment at a quarter
of the cost of the same treatment in a clinic in the United States.

Dr. Cheney met with Neil Riordan PhD, the laboratory director and CEO of
both clinics, and toured their facilities in Costa Rica and Panama
before taking patients there. The clinic in Panama is located near, and
its doctors associated with, the newest and best hospital in that
country. The Punta Pacifica Hospital ( is
located in downtown Panama City and is professionally tied to the
Johns-Hopkins University Medical Center. There is, however, no direct
association of the stem cell clinic to Johns-Hopkins.

The clinic stem cell laboratory, which produces the afterbirth derived
stem cells used in treatment, is located in The City of Knowledge in the
former US Canal Zone. Before a company can be established in this
prestigious high technology development site, a thorough vetting process
and due diligence approval from the Panamanian government is required.
The fact that the laboratory is located here signifies its high
standards and excellent quality control.

Touring a stem cell clinic and meeting its clinical staff is not the way
to judge the level of treatment one will receive. The key to evaluating
the quality of stem cells used and the effectiveness of the treatment
received is to be found in the laboratory and its quality control
operations, as well as the expertise of the laboratory personnel. Bear
in mind that the laboratory and the clinic may be located in separate
buildings, perhaps even very separate areas of a city.

There are serious concerns about stem cell clinics operating in Mexico
and elsewhere. There are many bad actors and poor actors. Some actually
transfuse patients with saline and claim that it's stem cells. Others
have no quality control and do not test the viability of their stem
cells, which means they may have little power to effect healing. Poor
quality control could also lead to lack of sterile procedures and at
worst patients could end up with no stem cells and an infection!

Dr. Cheney strongly recommends that clinics and their laboratories in
Mexico and elsewhere be carefully scrutinized, especially their quality
control procedures, personnel and capitalization. Good stem cell
laboratories require millions of dollars to capitalize and cost over a
hundred thousand dollars per month to run just for laboratory expenses.
They require deep pockets and a decade or more of expertise in the area
of quality stem cell production and propagation from afterbirth.
Significant capitalization acts to ensure quality control to protect the
investment of millions of dollars.

Adult stem cell therapy holds immense hope and possibilities for CFS/ME,
but requires a significant investment. Prospective patients should
consider such a major investment very carefully and make decisions that
ensure the safest, most effective, and longest lasting treatment possible.

For more information about the Cheney Clinic and Dr. Cheney's research,
see and

* Kordower JH et al. Mov Disord 2008 Dec 15; 23:2303
Nat Med 2008; 14:501 and 504 (two separate articles)


[This article is available as Word document. Email [email protected]
for a copy.]

Please distribute to other groups, lists and organizations.

Friday, July 17, 2009

When Doctors Get Sick

Of her book, Taylor says, "There's no new science here. We already know about the brain. What I bring to what we know about the brain is a personal experience. What does it actually feel like to be nonverbal? Cognitively, we can understand that, but it's very difficult to put ourselves in that place."

Hits the nail right on the head.  I can describe till I run out of words the experience of being unable to get off the couch when I need to go to the bathroom, but it was called "exaggeration", "laziness" and "depression" by someone in one of my groups until she herself had the experience of telling her limbs "must stand up now" and they didn't cooperate.  She finally learned that I wasn't exaggerating, there really is such a thing as Paralytic Muscle Weakness.

Similarly, my SSDI attorney, recovering from an illness, decided to take a walk, got as far as the front door, and crumpled to the ground.  Waiting for her husband to come home and get her back to bed, her mind wandered to "this is what she deals with every day", and more importantly, that I don't have a husband who carries me back to bed and brings me dinner; I need to figure out my own way back to bed and do without dinner.

It's those experiences that make people more empathetic.  Makes them realize what heroes we truly are for doing as much as we do.  They become amazed at how much you actually do accomplish within your limitations rather than (as previously) looking at the long list of things you couldn't do.

Thursday, July 16, 2009

Campaign for Health Care -- your chance to participate

We joined with the Progressive Change Campaign Committee on a new T.V. ad calling out specific senators. And now, we're inviting you (and your friends) to put your name in the ad before we air it in Washington DC and key states!


We'll run the ad over 100 times next week in Washington, D.C. so senators and their staffs know they have a choice to make. Either they stand with President Obama and the 76% of Americans who want the choice of a public option or they stand alone with their insurance contributors.

And they won't miss the ad. It will be on CNN, MSNBC, and the Daily Show. Then, we'll air it in the home states of senators who still refuse to join our side.

Along the way, we will continually rotate new names into the ad -- to show broad public support from around the country. We'll make the Senate listen to the vast majority of Americans who say: "We Want The Public Option!"

Working together, we will guarantee healthcare for all.

Charles Chamberlain, Political Director
Democracy for America

Thanks for putting your name in our public option TV ad with Democracy for America! Can you help others join the cause?

If you are on Twitter, click here to automatically Tweet this message:

15,000 folks put their name in a public option TV ad! Will u? #health #p2 via @BoldProgressive & @DFAaction

If you are on Facebook, join our "We Want the Public Option" fan page.

If you have a blog, post this 200 px image and link it to -- and here's the YouTube video of our ad.

Or just mail your buddies -- tell them to join the cause at

Thanks so much for getting involved and spreading the word!

--Stephanie and the Progressive Change Campaign Committee / Democracy for America teams

* * *
People who have good employer-paid plans (especially government employee plans) think we don't need this. 
Those of us who don't have employer-paid plans know that we do -- if you have a pre-existing condition, the price of individual policies is out of reach: my business partner pays over $700 a month for one person.  I pay about 1/4 of my earnings for a policy that covers only hospitalization (and live in fear that if I ever use it, they'll come up with some way to deny coverage).
If you think we don't need it, call a health insurance company and find out what it would cost you to get an individual policy if you lost your current policy through unemployment or employer budget cuts -- be sure you mention all your pre-existing conditions, so you get a true picture of what it would cost you.  You'll be shocked.  And then you'll understand why the uninsured, underinsured, and self-employed are in favor of a guarantee that we will finally get an affordable policy.

Monday, July 13, 2009

NJ Center for Excellence

Hello CFS Friends:

Fantastic news!  The New Jersey Assembly has unanimously passed AR
202 which will fund a Center of Excellence in New Jersey for Chronic
Neuroendocrine Immune Disorders, which includes CFS, FM, and related
illnesses.  Link to
for full information on this resolution.  The Assembly voted
unanimously for this legislation.

It is now going to the New Jersey House as SR 133, link to for the full details.

So if you know anyone in New Jersey, now is the time to encourage
them to contact their state senators to fund a New Jersey Center of Excellence.

The Nevada Center of Excellence - spearheaded by Annette Whittemore,
was the first such Center of Excellence Established.  Placing another
Center of Excellence in New Jersey will allow for networking
opportunities and also be a resource for CFS/ME patients on the East
Coast of the US.

Marla Silverman, Ken Friedman and others have been working tirelessly
on this project, and PANDORA will close its offices to all other
business for the next six weeks to focus on this project.

Below is the wording of the Resolution.

Rebecca Artman






Sponsored by:

District 17 (Middlesex and Somerset)

Assemblyman HERB CONAWAY, JR.
District 7 (Burlington and Camden)

Assemblywoman CONNIE WAGNER
District 38 (Bergen)


      Urges Governor and memorializes Congress to encourage
establishment of research center in New Jersey dedicated to chronic
neuroendocrine immune disorders.

      As introduced.

An Assembly Resolution urging the Governor and memorializing Congress
to encourage the establishment of a research center in New Jersey
dedicated to chronic neuroendocrine immune disorders.

Whereas, Neuroendocrine immune disorders (NEIDs) currently include
Chronic Fatigue Syndrome/Myalgic Encephalopathy, Fibromyalgia, Gulf
War illness, Lyme disease, Multiple Chemical Sensitivity Syndrome,
and other environmental illnesses; and

Whereas, Chronic Fatigue Syndrome/Myalgic Encephalopathy,
Fibromyalgia, Gulf War illness, Lyme disease, and Multiple Chemical
Sensitivity Syndrome have been characterized as being as disabling as
Chronic Obstructive Pulmonary disease, End-stage Renal failure, and
Rheumatoid Arthritis; and as life-impairing as Multiple Sclerosis,
AIDS, and cancer chemotherapy treatments; and

Whereas, The mechanisms of transmission of NEIDs include
parasite-borne infections; and

Whereas, The similarity of symptoms of NEIDs imply a common
pathophysiology of these illnesses; therefore, discoveries and
advances made in the etiology and treatment of any one of these
illnesses will be applicable and beneficial to the other NEIDs
because of their common pathophysiology; and

Whereas, An estimated 20 million American adults and children suffer
with NEIDs; and

Whereas, The time from illness onset to diagnosis of NEIDs is
approximately three to seven years, except for Lyme disease which may
take decades to diagnose; and

Whereas, There is mounting evidence of similarities of presentation
and origins of NEIDs with Autism, Alzheimer's disease, Multiple
Sclerosis, Lupus, Parkinson's and other autoimmune diseases; and

Whereas, Having a research center in this State is essential to:
promoting research into the etiology of, and therapeutic
interventions for, NEIDs; establishing treatment protocols and
providing patient care for all individuals in the State of New Jersey
afflicted with NEIDs; serving as a repository for NEIDs research
data, patient data and research publications; serving as a resource
for NEIDs researchers by sponsoring scientific meetings and
encouraging discourse among researchers; serving as a tertiary
resource for both physicians and patients in their efforts to manage
NEIDs; and advancing both NEIDs research and patient care by
disseminating the most recent advances in NEIDs research, diagnostics
and treatment protocols; now, therefore,

Be It Resolved by the General Assembly of the State of New Jersey:

      1.    This House urges the Governor to encourage the
establishment of a research center in this State dedicated to chronic
neuroendocrine immune disorder;

      2.    This House respectfully memorializes Congress to
encourage the establishment of a research center in this State
dedicated to chronic neuroendocrine immune disorders.

      3.    Duly authenticated copies of this resolution, signed by
the Speaker of the General Assembly and attested by the Clerk
thereof, shall be transmitted to:

      a.     Governor Corzine and the Commissioner of Health and
Senior Services; and

      b.    The Majority and Minority Leaders of the United States
Senate, the Speaker and Minority Leader of the United States House of
Representatives, and to every member of the United States Congress
from this State.


      This resolution urges the Governor and respectfully
memorializes Congress to encourage the establishment of a research
center in New Jersey dedicated to understanding and treating chronic
neuroendocrine immune illnesses (NEIDs) such as Chronic Fatigue
Syndrome/Myalgic Encephalopathy (CFS/ME), Fibromyalgia, Gulf War
illness, Lyme disease and Multiple Chemical Sensitivity Syndrome.

      It is estimated by the Centers for Disease Control and
Prevention (CDC) that CFS/ME affects between one and four million
Americans and that 85% of individuals suffering with this
debilitating and disabling illness have not been properly
diagnosed.  The economic impact and loss of worker productivity in
the United States due to CFS/ME, alone, is estimated to be over $9
billion per year.  Census data, and the incidence rate of CFS in the
United States, projects that an estimated 28,000 to 30,000 citizens
of New Jersey will suffer from CFS/ME.  The symptoms of CFS/ME
include flu-like symptoms (sore throat, fever, chills, tender neck
and armpit lymph nodes, unrefreshing or non-restorative sleep,
headaches, and post-exertional malaise lasting more than 24 hours),
as well as body-wide muscle and joint pain, cognitive impairment, and
short term memory loss.

      The CDC reports that Fibromyalgia (FM) affects five million
women, men, and children in the United States.  FM is a condition
characterized by body-wide muscle pain, tender points, sleep
disturbance, cognitive impairment ("fibro-fog" or "brain fog"),
overwhelming fatigue, swelling, joint pain, non-restorative sleep and
migraine headaches.

      According to the Research Advisory Committee on Gulf War
Veterans' Illnesses, Gulf War illness (GWI) is estimated to affect
between 175,000 to 200,000 U.S. veterans, some of whom have been
suffering for over 17 years.  GWI is characterized by multiple,
diverse symptoms that include a combination of memory and
concentration problems, chronic headache, unexplained fatigue,
widespread pain, chronic digestive problems, respiratory symptoms,
and skin rashes.

      The CDC has announced that Lyme disease is the
fastest-spreading infectious disease in the United States, and that
New Jersey ranks third in the nation for reported cases of Lyme
disease. Yet, Lyme disease is seriously underreported in the United
States.  Current literature suggests that co-infections associated
with Lyme disease play a major role in precipitating chronic illness
with symptoms that include flu-like symptoms, extreme fatigue, skin
rashes, unexplained weight gain or loss, other endocrine disorders,
urinary problems, sexual and reproductive dysfunction,
gastrointestinal dysfunction, heart problems, joint pain or swelling,
muscle twitching and muscle pain, peripheral neuropathy, vision
and/or hearing problems, disorientation, psychiatric disorders,
cognitive dysfunction, disturbed sleep, and poor balance.

      Multiple Chemical Sensitivity Syndrome and other environmental
illnesses are estimated to affect 10% of the American
population.  These illnesses have a variable, and overlapping
presentation with other NEIDs, and have symptoms that include any
combination of extreme fatigue/lethargy, muscle/joint pain, sleep
disturbances, headaches/migraine headaches, sensitivity to light and
noise, dizziness/vertigo, poor memory/poor concentration,
nausea/digestive problems, sore throat, constant coughing, wheezing,
skin rashes or burning/stinging eyes.

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Robert Matthews

Last Updated: July 04. 2009

We've all done it. Faced with some malfunctioning
gadget or computer, we pull the plug on it, switch it
back on – and find it works perfectly again.

Known to the cognoscenti as the "hard reboot", it's a
trick used more often in desperation than insight.

Now it's emerging as a promising new approach to
treating some notoriously debilitating medical

Recent clinical trials have shown that "rebooting" our
disease-fighting immune system can dramatically
improve the condition of patients with multiple
sclerosis and rheumatoid arthritis.

And according to a study published last
week, it may even bring relief to patients
suffering from the enigmatic condition
Chronic Fatigue Syndrome, affecting
millions worldwide.

There is a growing sense of excitement about the
rebooting technique.

But behind it lies an inspiring story of how a pair of
scientists overcame indifference to convince the
medical community of the merits of what is now
called B-cell Depletion Therapy (BCDT).

B-cells are a type of white blood cell which randomly
churn out so-called antibodies, many of which prove
useful in destroying disease-causing pathogens.

Yet, like every defence system, mistakes sometimes
happen – and innocent bystanders end up being

During the late 1990s, two medical researchers at
University College London began to wonder if this
"friendly fire" might hold the key to the debilitating
disease rheumatoid arthritis (RA).

Affecting about one in 100 people worldwide, RA can
strike anyone literally overnight, their immune
system suddenly attacking their joints.

The condition is excruciatingly painful, and for years
there seemed no hope of a cure. Until recently, the
prime culprit was held to be T-cells: white blood cells
that play a key role in the disease-fighting immune

Yet despite intensive study, no one could explain
how or why T-cells should produce a lifelong ailment
such as RA. Most tellingly of all, therapies targeting
T-cells failed to benefit patients.

This prompted Professor Jonathan Edwards and Dr
Geraldine Cambridge at UCL to ponder the possibility
than B-cells might be to blame.

Their idea was based on the fact some B-cells are
known to make antibodies which inadvertently seek
out and destroy healthy tissue.

Normally, these would be destroyed by the B-cells
themselves. But what if some of the antibodies by
chance possessed the means to evade their own
destruction – and go on to attack the joints?

That led Prof Edwards and Dr Cambridge to a
radical new approach to treating RA: "rebooting"
the immune system by destroying all the B-cells,
and then starting over with fresh ones.

Fortunately, a compound capable of targeting just
B-cells had just become available: rituximab, a
so-called monoclonal antibody which homes in on
specific targets like a heat-seeking missile.

This could destroy all the B-cells, leaving patients to
develop a whole new set free of the renegade variety
that attack joints.

That at least was the theory, and with the
standard T-cell theory not getting
anywhere, the team thought it was worth
bringing to the attention of other

They soon found that new ideas aren't
always welcome in science – even if the
old ones aren't working.

Their academic papers were rejected by journals
as "obviously" wrong – on the grounds that they
focused on B-cells, not T-cells.

They were not helped by a lack of experimental
evidence. Yet the pair found themselves in a
chicken-and-egg scenario: only if they already had
evidence from clinical trials could they persuade
funding bodies to pay for more clinical trials.

The pair managed to publish their idea in a medical
journal, only to be met with silence. Determined to
make their case, they set up a small but demanding
test, using rituximab to treat five patients with
severe RA.

The results were impressive: once their
B-cell systems had been "rebooted", their
condition improved dramatically. Yet
attempts to publish the results in journals
were rebuffed on the grounds that the
study involved too few patients.

So the pair tried again, cobbling together enough
money to treat 20 patients. Again, the results
were impressive, with all but two of the patients
showing dramatic improvements. It made no
difference: the medical community remained
utterly unimpressed.

Frustrated by the lack of interest, Prof
Edwards and Dr Cambridge decided some
media coverage might help. When the
reports of their success with 20 patients
emerged, they found themselves vilified by
fellow academics as hype-mongers.

Whatever the rights or wrongs of their decision to
approach the media, it certainly boosted awareness
of the B-cell depletion theory.

In 2000, just six people had turned up to hear a
lecture about the theory; a few months later, the
media coverage led to 3,000 packing a lecture hall to
hear what it was all about.

The coverage also helped win funding for a
substantial clinical trial involving more than 160

By 2002, the results were in: when combined with
a standard therapy for RA, rituximab proved
three times more effective than the standard
therapy alone.

In 2006, the B-cell depletion therapy (BCDT) was
approved by regulators in the US and Europe for
use alongside the standard therapy.

Despite this vindication, the two researchers have
not rested on their laurels. Since the late 1990s,
they have suggested that BCDT might help in
treating another disease linked to a
malfunctioning immune system: multiple

Last year, a study of more than 100 patients showed
that BCDT could halve their relapse risk. The UCL
team has also shown that the technique brings
benefits to patients with the auto-immune disease,

Now a team of researchers in Norway is
claiming the therapy could help treat
Chronic Fatigue Syndrome, sometimes
called myalgic encephalomyelitis (ME).
Characterised by mental and physical
exhaustion, with muscle and joint pain,
this enigmatic condition has no accepted

Many researchers have suspected a link with the
immune system – a possibility now tentatively
backed by researchers at Haukeland University
Hospital, Norway. In the current issue of the online
journal BioMed Central- Neurology, the team reports
treating three CFS patients with BCDT, and observing
marked improvements.

With so few patients, it's hardly definitive proof of a
cure. Yet it is just the situation Prof Edwards and Dr
Cambridge found themselves in a decade ago. CFS
sufferers must be hoping medical researchers are not
about to repeat history by rejecting these intriguing
findings out of hand – despite not having any better
ideas themselves.

Robert Matthews is a Visiting Reader in Science at
Aston University, Birmingham, England



From Wikipedia, the free encyclopedia

Rituximab, sold under the trade names Rituxan and
MabThera, is a chimeric monoclonal antibody against
the protein CD20, which is primarily found on the
surface of B cells. Rituximab is used in the treatment
of many lymphomas, leukemias, and some
autoimmune disorders. See: _ (


See also next Help ME Circle:
*Clinical impact of B-cell depletion with the
anti-CD20 antibody rituximab in CFS*


**************An Excellent Credit Score is 750. See Yours in Just 2 Easy

Great collection of links & info

Thank you again, Kathryn Stephens, for posing the question!

It has been a stunning spring for the CFS and ME communities. I hesitate to say either ME/CFS or CFS/ME or CFIDS or any other variation or combination of these two anacronyms. There are several political connotations to consider when talking about this disease, and it would pay to find out why. The politics that drive the name confusion are the same politics that have kept you, personally, from getting research into your disease and potentially a cure.

So here's a review. It's basic, and only hit's the highlights. But it is worthwhile to familiarize yourself with some of these events at the very least, and hopefully follow up with further reading and perhaps some participation in the politics that affect your life. Not everyone can do much. But every voice counts, and in order to educate the public, we must first educate ourselves!

Much of this information can be found in multiple places on the web, but I tried to give links where you do not have to be a member to be able to read.

The first step, I think, would be to read Hillary Johnson's fantastic blog, which is a copy of a speech she gave in May of this year in London. This is out of sequence, but in order to understand the import of the rest of what is happening, it is an excellent educational tool. In the speech, she outlines the political malfeasance that has affected us here in the states, and abroad. For those of you who are not familiar with the name Hillary Johnson, she is the author of Osler's Web, a detailed chronicle of how CFS came to be.

Her blog is at:

Now, for a mini-history of the events of this spring:

1. In March, the IACFS/ME conference was held in Reno, NV. The IACFS/ME is a unique organization and one that is very important to us, medically and politically. It is an international organization of 500 biomedical and behavioral scientists, clinicians, and educators that promotes, stimulates and coordinates the exchange of ideas about CFS and related illnesses". The fact that this conference was held in Reno was a sort of "coming home" for Dr. Daniel Peterson, who has been involved in CFS research from the beginning, as one of the two doctors who called the CDC out to Incline Village in the first place back in the 80's. Dr. Peterson has established the Whittemore Peterson Institute in Nevada, and still maintains the blood and tissue samples from the original cohort, the people for whom CFS was so infamously named.

Dr Charles Lapp's summary can be seen here:

Dr. Ritchie Shoemaker made a brilliant presentation at the same conference, tying mold in with CFS. Thanks to Erik, we heard it here first:

2. May 12 was International ME/CFS awareness day. On that very day, Dr. Derek Enlander made the announcement that he was starting a new journal called "Fatigue". This announcement split advocacy groups, as some were outraged at the choice of the name after fighting for a quarter of a century against all of the suffering that the connotations of that word has caused, and at the announcement of such a journal on the day set aside to bring awareness to the world. Other advocates were suddenly tolerant of the word since the word was being used by CFS experts. To read more, see:

And Dr. Enlander's response here:

3. Also in May, the CFSAC advisory committee met with the CDC. We, the sick,were invited to testify. We were also invited to testify by phone if we could not make it in person. This invitation was not extended until the meeting was almost upon us, as an afterthought and no doubt in response to pressure for the advocacy groups. Also, historically, the meetings were videocast so all of us at home could watch them live. This was due to some very hard work and advocacy done by Jean Harrison and here group at MAME.

Some of the testimonies given:

Watch the videos:

(It is important to watch them! If not enough people do, they probably will not video further conferences).

Dr. Bill Reeves' presentation and what it means to you:

IACFS/ME president's call for the replacement of Bill Reeves:

Craig Maupin's recap of why this is SUCH a time of opportunity:

4. On the heels of the CFSAC meeting, Dr. Kenny De Meirleir gave a press conference where he announced a home test for diagnosis of CFS. Read about it here:

5. The Invest In ME conference in London was held. Hillary Johnson gave a remarkable speech, which I already referenced at the beginning of this post. Here it is again, just in case:

John Anderson's followup to Hillary's blog was brilliantly crafted. It can be found here:


Ampligen has come up for approval by the FDA, and has been postponed yet again. This has been going on for 10 years:

A mother has been charged for murder in the death of her daughter, who had ME. ME support groups are trying to step in with support funds and dissimination of information.

A petition to stop the CDC from using the "Reeves empirical" to define CFS has been in existence since April. It is still critical to get signatures on this.

The Whittemore Peterson Institute is a beacon of scientific research, and Annette Whittemore has a goal to start 5 total such institutes. Read more at:

PANDORA, another important advocacy group, is trying to get an "Advocates Extraordinaire" program going for those of us who are extreme advocates:

For those who cannot do much but are wishing to at least have a say, there is a very simple poll. Do you think Reeves should be replaced..yes no or maybe?

Dr. Daniel Peterson's presentation at REM Goteborg (Swedish ME Patient organization)

There is ever so much more. I'm hoping this will give you a place to start.

CFS is a Real Medical Condition

'Chronic fatigue syndrome is a real medical condition'
Dr Liv Bode

Dear Editor,
ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) is a
physical disease. It is not a product of the patients' imagination and
is not a psychological problem.

Funds have been used for research into the hypothetical psychiatric
nature of the disease at the expense of biomedical research. Future
research needs to be interdisciplinary and focused on the causes,
early diagnosis and treatment of ME/CFS.
The British National Health Service has published NICE guidelines for
this disorder which, according to ESME, are not helpful and might even
induce relapse in some cases.

ESME will encourage research leading to the accumulation of new
knowledge and to a better understanding of the disease, and will
endeavour to raise funding for biomedical research in, and education
about, ME/CFS.

PD Dr. Liv Bode
Prof. Dr. Med. Kenny De Meirleir
Dr. Med. Derek Enlander
Dr. Med. Ana Garcia Quintana
Prof. Dr. Hanns Ludwig
Prof. Dr. Med. Mária J. Molnár
Prof. Dr. Bodil Norrild
Prof. Dr. Med. Ola Didrik Saugstad
Prof. Dr. Med. Babill Stray-Pedersen
Prof. Dr. Med. Umberto Tirelli

Stavanger, Norway, June, 2009
Launch Meeting, ESME

Posted in Letters on 10 July 2009
Tags: NHS

Sunday, July 12, 2009

Happiness and CFS

The grand essentials of happiness are something to do, something to love, and something to hope for. 
                                          – Allan Chalmers
This is why many CFS patients are unhappy: they're too sick to do anything, the people they love have either abandoned them or don't believe they're sick, and Modern Medical Science has given them nothing to hope for.
One reason I never got depressed over having CFS is that I was diagnosed by an Ivy-League-trained virologist, who assured me that he personally was doing research into it.  With a genius like him working on it, I had confidence the problem would be solved quickly.  Although his research didn't provide the cure I needed, I learned about other privately-funded research that might, which kept my hopes up.
Compare that to the many patients who are diagnosed by a doctor who tells them "there's nothing we can do for you".  The doctor doesn't know what research is being done, so can't tell them what's coming in the near future.  They have nothing to hope for.
Well, that's why this blog is here – to reassure you that despite your doctor's ignorance, despite CDC's foot-dragging, there is something to hope for.  I attended the IACFS conference this spring and they know a lot more now than they did when I got sick in 1987.  There are hints of a big breakthrough coming soon.  Dr. Klimas is opening her own CFS-centered clinic in Florida later this year and a Center for Excellence will open in Reno in 2010.
Moreover, there are things that can be done to help you now.  There's no "magic pill" that will cure you overnight, but there's promising evidence for increasing blood volume with saline IVs, for use of anti-viral medication, for use of pacing to reduce symptoms. 
Anti-depressants are useless, and may even make you worse; several specialists recommend starting with a sleeping pill, which allows the body to start healing itself.  Since my quality/quantity of sleep has improved, the number of symptoms bad enough to ask for pharmaceutical help has been reduced substantially.  That alone made a big difference in my quality of life.
This blog has plenty of information on testing that will help you prove you're disabled, research that may help you get treatment that makes life a little better, and helpful hints on getting through the day.  Just use the search bar at the top of the page and see what you can find!