Saturday, June 6, 2009

Diagnosing CFS (yet another test that proves it's real)

Is It Chronic Fatigue Syndrome? New Research May Let Doctors Know for Sure *New
York* *(May 15, 2009)*

NewYork-Presbyterian scientist Dikoma C. Shungu,
collaborating with other researchers in a new study to develop a
method to diagnose patients with chronic fatigue syndrome (CFS). Earlier
diagnosis can lead to earlier intervention and a more effective course of
Chronic Fatigue Syndrome: From "Yuppie Flu" to Recognized Diagnosis

Doctors sometimes find it difficult to diagnose CFS because there is no one
definitive test, and because CFS shares symptoms with a number of other
conditions including diabetes, thyroid disease, depression, anxiety, and
substance abuse. The disease was not so long ago dismissed as the "yuppie
flu," but it has gradually gained legitimacy and is now accepted as an
established diagnosis. The Centers for Disease Control (CDC) developed a set
of diagnostic criteria in 1994, and the agency has started tracking cases
and reports that as many as 4 million Americans suffer from CFS.

Dr. Shungu's earlier research, published in the October 2008 issue of NMR in
Biomedicine, revealed that patients with CFS often have elevated levels of
lactate in their cerebrospinal fluid
, the fluid that bathes the brain.
Lactate is a type of salt that the body produces when there is increased
demand for energy to power certain body functions and oxygen levels are low
– during intense exercise, for example

Understanding the Connection Between Chronic Fatigue Syndrome and Lactate

Chronic fatigue syndrome often develops on the heels of flu-like illness
from which the patient does not really recover, said Dr. Shungu. "They
remain sick and start feeling very, very tired." The illness may set in
motion a chain of events, he explained: As the body works to fight off the
infection and attempts to neutralize viruses and bacteria, the immune system
forms highly reactive molecules called free radicals. These molecules
sometimes accumulate in such high numbers that they create a destructive
process called oxidative stress, which targets and destroys the
mitochondria, the cellular "engine" that processes oxygen and generates
energy for cell function. When these can no longer produce cellular energy,
an alternate energy-production process kicks in called glycolysis – "and the
end product of glycolysis is lactate, also called lactic acid, which is what
we're detecting
," Dr. Shungu said.

Another theory is that damage to the mitochondria may be due to low levels
of oxygen in the brain, Dr. Shungu said. Mitochondria require a minimum
amount of oxygen to operate, if oxygen levels dip, the mitochondria cannot
product energy efficiently so glycolysis kicks in, and lactic acid is
produced. "Preliminary studies have shown that brain blood flow is decreased
in CFS compared to the other groups, which might be a cause for the
increased lactate
," said Dr. Shungu.

Dr. Shungu's New Study for Chronic Fatigue Research

Dr. Shungu's new study, sponsored by the Chronic Fatigue and Immune
Dysfunction Syndrome (CFIDS) Association of America, will attempt to better
understand what is happening within the brains and bodies of patients with
CFS – what mechanical processes are taking place that lead to elevated
lactate levels. In this study – as he did in his earlier work – Dr. Shungu
will employ a technology known as magnetic resonance spectroscopy. This
imaging test reveals the chemical composition of tissues in the body such as
the brain. The researchers will observe markers of oxidative stress,
mitochondrial dysfunction and cerebral blood flow.

This study will also have much narrower parameters than the previous one.
Dr. Shungu's earlier study showed levels of lactate that varied considerably
among the CFS patients in the study. "We actually had a very big spread –
more than half of them had significantly increased lactate, but there were
also patients who didn't have increased lactate." This is consistent with
CFS, he said, which is a "very, very heterogeneous, multisystem condition."
This study will compare patients with similar symptoms and should make it
easier for researchers to draw conclusions about the mechanisms that link
CFS with elevated levels of lactate.

*Faculty Contributing to this Article:*

*Dikoma C. Shungu,
Ph.D. is a
Professor of Physics in Radiology at Weill Cornell Medical College,
of the affiliate medical colleges of NewYork-Presbyterian Hospital.*

Returning to the Infectious Roots of CFS

Patients wishing to contact the CDC regarding the need to return
ME/CFS research to its infectious roots may wish to cite the following
study (without the explanations which are solely for informational
purposes for patients without a medical terminology background). It
should be noted that neither depression or anxiety are listed perhaps
because patients were not yet stigmatized.

Preventive medicine is one of the pillars of the CDC: Possibly
billions of dollars in economic losses could be mediated by
preventative measures such as administration of antivirals or even
genetic therapy at some point in the future, but that takes research

Symptoms and Signs of Chronic Fatigue Syndrome
Anthony L. Komaroff and Dedra Buchwald
Reviews of Infectious Diseases, Vol. 13, Supplement 1. Considerations
in the Design of Studies of Chronic Fatigue Syndrome (Jan. - Feb.,
1991), pp. S8-S11

This review summarizes the symptoms and signs seen in patients with
Chronic Fatigue Syndrome. It is based on the experience with two
cohorts of -510 patients with chronic debilitating fatigue and on the
reported experience of other investigators with similar patients.

The most characteristic symptoms of CFS are:

The sudden on-set of an infectious – type illness,

Subsequent chronic and debilitating fatigue,

postexertional malaise (post-exertional malaise is a period of intense

Many patients also have:

Recurrent fevers (infections are the most common causes of higher than
normal body temperature)

Pharyngitis (Pharyngitis is inflammation of the pharynx, which is in
the back of the throat, between the tonsils and the voicebox (larynx).
Viruses are the most common cause of pharyngitis. Many different
viruses can cause pharyngitis)

Adenopathy (Large or "swollen" lymph nodes. In the United States,
common viral and bacterial infections are overwhelmingly the most
common cause of adenopathy)

Myalgias (pain in a muscle or group of muscles - without a traumatic
history is often due to viral infections),

Sleep disorders (pro inflammatory cytokines, which are one of the
body's immune responses to infection, also cause sleep dysfunction.)

Cognitive impairment

When Opportunity Knocks

Hello to All,

I have posted a short write-up of the CFS Advisory Committee meeting here:

Below, I am also posting the following op/ed (below).   As always, feel free to copy anything to other sites and forums. 

                         Craig Maupin

Recognizing Opportunity:  Will the CFS Community, Then Sebelius, Respond to the CFSAC?

June 6, 2009

By Craig Maupin at   

    There is a popular saying, well-known around the world: "Opportunity knocks".   The saying is not descriptive of opportunity alone. Rather, the saying is describing the relationship between opportunity, and those who may, or may not, benefit from it.

    In my 20 years of suffering from chronic fatigue syndrome, I have seen very few hopeful days.    One such day was when former Assistant Secretary of Health and Human Services Donna Dean announced a chartered committee to give CFS a scientific, non-stigmatizing name.   Dean believed that the name "chronic fatigue syndrome" was not only affecting public perceptions, but the perceptions of the scientific community as well.    She was right.

    Dean's efforts hit resistance within the health department. Given the health department's history, that resistance was expected.    However, the CFS community's response to Dean's efforts at reform was, at times, mixed.    Some CFS advocates recognized and responded to the opportunity for reform, a new direction.    Others chose to observe.    To this day, I believe Dean's proposal, for whatever reason, became an opportunity lost.

    On May 28, 2009, opportunity knocked once again. The CFS Advisory Committee – largely composed of scientists and clinicians -- requested the Secretary of Health and Human Services install a new director of the CFS program at the Centers for Disease Control and Prevention (CDC).    These recommendations stem from scientists and clinicians that know chronic fatigue syndrome.

    For a community that has seen so few victories, May 28th, 2009 was a day to remember.     But, it was only a knock. For the knock lead to an open door, Dr. Kathleen Sebelius, will have to make the right call, hear the knock, and answer.    She will have to decide if CFS, a predominantly women's illness, needs a more collaborative hand at the CDC.    Having watched this drama unfold, I believe that to find a collaborative hand for CFS at the CDC, Dr. Sebelius will have to rely on external advice and input, reaching outside the department.

    The CFS community will also have to answer the knock, recognizing a rare opportunity before it passes.   The CFIDS Association has a form that makes sending input to Dr. Sebelius a short, five minute exercise.    Other groups have taken notice of the opportunity and risen to the challenge.   Timing is often everything.    If we truly care about how this illness that affects us, our children, or our families, the timing is right to invest a few, short minutes in advocacy.

    For CFS to one day be quelled, the right doors will need to open.  Doors do not open by themselves.    Knocks have to be heard, noticed and answered. Let's hope the knock of opportunity on May 28th will be heard and answered by the CFS community, and the doors of reform will be opened by Dr. Sebelius.

The CFSAC recommendations as forwarded to Dr. Sebelius.

Easy Five Minute Form to write Dr. Sebelius:

Thank Dr. Wanda Jones for making CFSAC meetings accessible:

Mailing Address for Dr. Sebelius: 

The Honorable Kathleen Sebelius
Secretary of Health and Human Services
200 Independence Ave., S.W.
Rm. 615‑F
Washington, DC 20201


Fibromyalgia Patients Fight Back Against AP Article | LIVESTRONG.COM

"How can we allow the system to fail millions of people whose only "fault" is to have developed a devastating illness?"

Vote early, Vote often! -- Poll on CDC Changes

Thanks, Tom!
[Marly C. Silverman (of P.A.N.D.O.R.A., Inc. )
asked me to post around a link to this poll so please forward it to other
lists. She pointed out that a poll can be better than a petition (as all
sides can express an opinion and one can see the breakdown). TK]

Poll: "Do you want a leadership change and a new direction at the chronic
fatigue syndrome (CFS) CDC program?"

Vote/give your opinion at:

If the links do not work, go to PANDORA Inc home facebook page and follow
the link on June 5/6:


A Lesson for CFS Patients

People hear what they want to hear, see what they want to see, and believe what they want to believe.
We've all run into doctors who think CFS is hypochondria and will not believe symptoms they don't see for themselves.  I've run into doctors who have also refused to see what is right in front of them.  Their belief system tells them that there is nothing to see and therefore, they convince themselves they see nothing. 
As an activist, I am always running into people who want to debate me because they "know" they're right.  The problem is, such people will not accept anything that doesn't fit in with what they already believe.
For one example, I had a lengthy debate with someone about the incidence of CFS and MS.  The number preferred by most CFS activists is 1,000,000 patients in the US.  I provided her with a source for that, as well as a source for the CDC's number of 4-7 million (which most activists think includes people with fatigue from other causes), take your pick which number you want to believe.  Then I provided her with a variety of sources for the number of MS patients, ranging from roughly 250,000 to 450,000 in the US.  While steadfastly refusing to provide me any evidence of a higher number, she continued to argue that I had to be lying, there could not possibly be more CFS patients than MS patients.  It didn't fit into her notion that the more patients you have, the more research money you get, and that CFS was a little-known disease because it only affects a handful of patients.  In fact, per-patient, CFS gets about $1 of research money each year, whereas MS gets $250.  Experts have said that CDC "doesn't want to find anything" and the best way to not find anything is to not spend any money looking for it!
For another example, I told someone that I didn't have time to look up the source of something I have committed to memory because I was busy -- I run a business and had to work.  That didn't fit in with her notion of what CFS is, and she said "just what I thought you'd say, that you're too tired".  I never said "tired", I said "busy working".  But in her mind, CFS people are too lazy to work, so she had to substitute the words she wanted to hear for what was actually said.  Fortunately, the entire exchange was online, and it was easy to prove what I really said. 
This is one reason I prefer to put things in writing -- it makes it harder for people to claim that I never told them, or I said something different, or I said what they wanted to hear. 
One of my doctors was proven to be lying when he claimed that I had diagnosed myself with CFS, but no doctor had ever given me that diagnosis, when I showed him, in his own file, a written report from a specialist a few months before my first appointment with him, which was delivered to his office a week before my first appointment, where the specialist confirmed my prior specialist diagnosis.  The same doctor also lied to SSDI that he knew I had psychiatric problems, but I refused to be seen by a psychiatrist, had never had a psych evaluation ... a few months after he was sent copies of TWO psych evaluations in which they didn't find the things he thought should be wrong with me.  At that point, it was no longer his word against mine, because there was proof of what other doctors had said, what I'd told him they said, where he chose to hear something I didn't say because what I did say wasn't what he wanted to hear.

More on ME Think Tank

ESME European Society for ME

Scientific Think Tank for Mystery Disease

Experts Launch Think Tank for Mystery Disease

Ten leading scientists in Europe have formed a Think
Tank for ME and will hold their first meeting on the
13th of June. They want to initiate an effective
research effort to find the secret behind the mystery
disease that cripples an increasing number of lives.

Myalgic Encephalomyelitis, often referred to as
Chronic Fatigue Syndrome (CFS), is a disease which
affects at least one million individuals in the US, and
an even greater number in Europe. Despite the large
number of people affected, there is a lack of serious
large-scale research initiatives focused on the
disease. The number of patients is rapidly increasing
but healthcare personnel lack knowledge about
existing research and possible treatments.

Last year's winner of the Nobel Prize in Medicine, Professor Luc Montagnier of France, says, "Scientists have already uncovered a lot about ME, but this information does not reach professional healthcare personnel, and the disease is still not taken seriously. It is about time this changes."

Montagnier, one of the discoverers of the HIV-virus,
is a supporter of the Think Tank, but is unable to
join the first meeting due to his demanding

Treatable Disease

Ten internationally recognized scientists, many of
them prominent leaders in their respective fields of
research, have decided to do something about it.
They have come together in a Think Tank to promote
cooperation among scientists from various disciplines
and to stimulate intense focus on innovative and
creative research.

The first meeting is set in Stavanger, Norway on
the 13th of June.

"There are more than 5000 research papers which
show that ME has an organic basis with
abnormalities in the immune, nervous and
gastrointestinal systems and that it is influenced by
genetic and environmental factors," states Professor
Kenny De Meirleir of Belgium. "Despite these
findings, it has been close to impossible to initiate
large-scale research to verify these facts and
observations. We will never be able to treat ME properly if we do not initiate this type of research."

Using new biotechnological techniques, much of the
underlying pathophysiology of the disease has been
unmasked. Several treatable clinical entities have been discovered, but this information does not reach healthcare personnel. The result is that patients remain undiagnosed and untreated for years with something that might be fully treatable. This is a
huge drain on the economy, as the estimated
socio-economic costs for Europe are estimated to be
?20 billion annually.

Educate Professionals

An important part of the Think Tank's mission is to
spread knowledge about the disease. The incidence of ME and the impact on public health are actually higher than that of other better researched conditions like Multiple Sclerosis and HIV. Research shows that ME can be a very disabling chronic disorder which often diminishes patients' quality of life to levels lower than that of cancer, MS, HIV and lupus.

Professor Ola Didrik Saugstad of Norway states,
"There is a total lack of knowledge and
understanding about this disease in the healthcare
system. We wish to use our knowledge to educate
and train doctors, therapists and other healthcare
personnel so they can better understand how to
manage an ME-patient."

New in ME

The Think Tank meetings are the brainchild of a new
organization, European Society for ME (ESME). This
society will focus on organizing research and
educating professionals in the field of ME.

"Until now ME organizations have been patient-based
and only focused on the needs of the patients, so
this is something completely new and unique. We
are a group of professionals who want to stimulate
new research in the field of ME and to help doctors
and healthcare personnel to stay informed about the
latest developments in diagnosing and treating
ME-patients," says ESME board member Mrs.
Catherine Miller-Duhen.

Press Conference

The first Think Tank meeting will be held in
Stavanger, Norway on the 13th of June. This will be
immediately followed by a press conference where
the specialists will be available for comments and

On Friday the 12th of June, a conference will be held
to train healthcare personnel in the diagnosis and
treatment of ME-patients.

Press conference: Saturday 13th of June, 4 pm, Press
room, Clarion Hotel Stavanger, Stavanger, Norway.
To register for the press conference and ensure
receipt of a press packet, please send an email to
Rebecca Hansen at:

Contact persons:

From ESME: Rebecca Hansen: +45-25713577, 

Svein Harvang: +47-90180049;

Patient contacts:

Anette Gilje: +47-95934023,

Mette Schoeyen: +47-47844671,

ESME website:


Think Tank for Mystery Disease

Experts Launch Think Tank for Mystery Disease

Ten leading scientists in Europe have formed a Think Tank for ME and will hold their first meeting on the 13th of June. They want to initiate an effective research effort to find the secret behind the mystery disease that cripples an increasing number of lives. Myalgic Encephalomyelitis, often referred to as Chronic Fatigue Syndrome (CFS), is a disease which affects at least one million individuals in the US, and an even greater number in Europe. Despite the large number of people affected, there is a lack of serious large-scale research initiatives focused on the disease. The number of patients is rapidly increasing but healthcare personnel lack knowledge about existing research and possible treatments.
Press Release, European Society For ME (ESME)


Friday, June 5, 2009

Keys to Abusive Behavior in Treating Patients

People often ask victims of abuse, "Why didn't you report this the first time it happened?" The victim generally has no good answer, because he or she has been the unwitting subject of a psychological campaign by the abuser to prevent any disclosure of what is going on. Here are the main means by which abusers are able to continue their cruelty for years.

1. Isolate the victim
2. Tell the victim nobody will believe his/her story.
3. Threaten the victim with harm if he/she tries to tell the story anyway.

Read more how institutions in the U.S. and G.B. follow the classic behavior of abusers in their treatment of patients with M.E. or a diagnosis of CFS at my latest blog post:

Mary M. Schweitzer, Ph.D.
* * *
BTDT. On the one hand, the doctor kept promising "I want to help you" but on the other hand, whenever his interventions failed, he blamed me rather than himself. Which half of the Jekyll-and-Hyde personality do you believe?
A friend with a more accepted diagnosis also saw this same doctor and also had the same experience of being verbally abused that she "doesn't want to work" when, in fact, other medical practitioners were telling her that she could not work, and that continuing to work risked permanent disability.
I went to other doctors in the same highly-respected medical group, who were more concerned with covering up his malpractice than with improving my health. At one point, I was given a prescription that another doctor pointed out could kill me, because I'd had bad reactions to related medication before -- he then mused that if they killed me, my claim for medical malpractice would die with me. That's how far they were willing to go to make sure I didn't sue.
They can get away with it because at least one insurance company in this area (I've had their insurance in the past) basically limits you to that medical group. They know if you have that insurance you can't go elsewhere without paying for it yourself, and therefore, you have to put up with the way they treat you. They can abuse you all they want and there's nothing you can do about it.
In my case, I had Disability forms that needed to be filled out. A doctor cannot certify that you were disabled prior to your first appointment with him, so it was in my best interest to stick with a doctor who could certify me as of 2000, rather than as of 2001. When they ran out the clock on my application causing me to miss the deadline, I had nothing to lose in changing doctors.

I've had patients who met post-traumatic stress disorder criteria... where their trauma was their interaction with their physician around this illness. They came to a doctor with Chronic Fatigue Syndrome; they left the doctor with PTSD.
– Nancy Klimas, M.D.

Miami Herald, March 24, 2009

Thursday, June 4, 2009

Ciguatera Toxin: an instantaneous cause of ME/CFS

Ciguatera Induced ME/CFS

An insufficiently reported cause of ME/CFS induced overnight in hitherto
perfectly healthy subjects has often been reported from tropical coastal
areas of Australia and outlying Pacific islands.

Professor John Pearn, over a decade ago, reported cases of ME developing
within hours of patients ingesting ciguatera toxin.  Ciguatera poison is
found in many fish in Australian and other tropical waters.  A typical case
reported by Pofessor Pearn would involve a Pacific island family cooking and
eating inadequately gutted ciguatera fish.  Next morning several of the
group are dead or dying, any survivors, if lucky, being evacuated by air to
an Australian hospital such as John Pearn's in Brisbane.

Please step forward anyone who considers that a disorder caused within hours
by a fish toxin can be neither physiological nor neurological in nature but
must instead be essentially psychiatric!

AHMF: 98 Conference: Pearn  Ciguatera - Chronic Debility: One cause of the
CFS. John Pearn. Professor of Paediatrics & Child Health Consultant to
Queensland Poisons Information Centre

AHMF: 98 Conference: Pearn
Models for CFS - Channelopathies And Ciguatera. John Pearn. Professor of
Paediatrics & Child Health, Consultant to Queensland Poisons Information

The victor as victim: stress syndromes of operational service. Treatment as
for CFS and PTSD. Social networks and support. Pearn JH. CFS ‹ chronic
ciguatera as part of the differential ... -

MJA: Chronic fatigue syndrome - references. Chichester: John Wiley and Sons,
1993. [Ciba Found Symp 1993; 173.]  Pearn JH. Chronic ciguatera: one cause
of the chronic fatigue syndrome. In patients with chronic fatigue syndrome
(CFS) what conclusions can we draw?

eMJA: Chronic fatigue syndrome   CFS is diagnosed on clinical grounds. It
relies on the presence of... Chicester: John Wiley and Sons, 1995: 323-334.
Buchwald D, Sullivan JL, Pearn JH. Chronic ciguatera: one cause of chronic
fatigue syndrome. ...
More results from


The 1976-1994 causes of my M.E.?

(1) 18 years teaching in a new, ill-designed and unventilated Tasmanian
government college (since demolished) the building being subject through
those years to an ever-increasing load of chemical contaminants including
hydrocarbons, toluene, trichloroethne, xylene, barium and lead fumes from
unventilated pottery kilns, laboratory chemicals, ever more computers &c.

(2) The tripling of my 1976-1993 workload forced on me at 24 hours notice in
February 1994. I tried teaching the load of mostly never studied subjects to
17 and 18 year olds but after 10 weeks cumulative sleep deprivation I
collapsed. Soon after I was given a dx of ME/CFS - by a psychiatrist!  I
have never recovered.

Tom McGlynn // Tasmania // PWME since May 1994.

* * *
The meal I was attempting to eat literally a minute before I collapsed was chicken.  But I may have had fish for lunch.

A Psychologist Explains CFS

As a professional with the relevant expertise, I am surprised to note that
the psychiatrists who have been active in the psychologisation of CFS (with
one exception) appear to have spent considerable money and time on a project
to see if their psychologisation can be formalised.  For examples of their
psychologisation, I recommend articles by Barsky and Borus and Henningsen
and Priebe, which one can Google or find cited on the website below. I
should particularly draw attention to the views of Dr. Barsky, part of the
team, who suggested that cases of CFS may have developed as a result of
reading about it on the internet. My response to that was published as one
of several letters challenging his selective discussion of CFS in Ann Int
Med 1999.

No objective scientist/clinician has ever claimed that CFS is a somatoform
disorder, or that it should be classifed as such, or anything similar.
However, one could argue that those participating in the the project are
helping to sow the seeds of doubt. I see the 'manure' being used to promote
their growth.

Five minutes on PubMed would make serious scientists see that CFS can not be classified as a somatoform disorder or any other kind of 'mental' disorder. For one thing, 'it' is not an 'it'. CFS is a term covering a mixed
population. Some subsets can be related to infection. That rules out a
diagnosis of somatoform disorder. We know too much. Of course, no one is
contesting that having CFS makes one immune from depression or anxiety, and
reading the reports on CFS and somatoform disorders certainly depresses me.
CFS needs a new case definition. While it is an umbrella term, there seems
little point in reclassifying 'it'.

Another point rarely considered. The scientists involved in the project did not and do not consider factors such as nutritional deficiences and dysbiosis as possibe explanations for the symptoms of CFS. It is therefore not surprising that the illness can be dismissed rather easily as 'medically
unexplained'. If you stop looking after routine tests, then one will often not find a cause.
Diagnosis of CFS should not be  an end point but a cross
roads. We need to identify which subset a patient belongs to and manage

The whole project, in my view, reflects reductionistic thinking. All
patients with fatigue are lumped together and they are trying to find a neat
box to place them in. Apparently, G93.3 does not suffice. (In a sense, being
a dustbin diagnosis, it doesn't. When it was listed in the index under
G93.3, - and there's nothing odd about that -, the case definition for CFS
was very different to the one used now.). However, this is not the time to
reclassify but to clarify and that requires a better definition.

I regret that anyone with CFS may have contributed funds to this project.
There wasn't a problem re reclassification, but now there is.

Ellen M. Goudsmit

Tuesday, June 2, 2009

News from One Click

 Independent Study Shows Antidepressants Increase Breast Cancer Risk
An independent large study conducted by MEDCO Health Solutions Inc. found that women treated with tamoxifen for breast cancer doubled the risk of the disease returning if they used antidepressants--in particular, Paxil and Prozac.
Vera Hassner Sharav, AHRP/Associated Press
* * *
Given the number of us who have been wrongly put on useless anti-depressants, sometimes for years, this is important reading for CFS patients, who may already be at extra risk of cancer.

Sunday, May 31, 2009

Fibromyalgia: Patients say many doctors don't take them seriously

Fibromyalgia: Patients say many doctors don't take them seriously

If you have comments, please put them on the Bee's website and not just

The fact that doctors STILL, after plenty of biomedical evidence, think
this is IAIYH or non-existent says a great deal about the close-mindedness of
the medical profession.
**************We found the real 'Hotel California' and the 'Seinfeld'
diner. What will you find? Explore

Report from UK Conference

The following is a summary of the 2009 IiME Conference in London, England by
user consuerga on the ProHealth boards.


I am the Patient Advocate for my thirty-five year old daughter. I travel to
conferences to observe what is going on in the field. This is not a
scientific report. It is a record of my impressions, as limited as they may
be. They are presented to give some impression of this conference to those
who were not able to attend, particularly patients and patient advocates. I
apologize ahead of time for my own biases and editorializing. A DVD will be
released of the conference in July and can be purchase for 12 pounds.

This was the third consecutive year that I have attended this conference. It
takes place in a beautiful old building on the southeast corner of Green
Park. In many ways I could just reprint my report from last year. One
positive note was that there were more participants at the conference. Each
year it has gotten larger, and this year it was sold out. The government
ministers, who were supposed to attend, were "tied up" and couldn't make it.
The conference resolved to send them a DVD of the lectures, urging them to
consider these research and treatment efforts for CFS/ME.

The attendees seemed to be mostly from the UK. Not very many Americans
attend this conference. I don't know why. Instead there were Norwegians,
Danish, Swedes and Australians. There were a good number of patients and
some in wheel chairs.

As with last year, American presenters dominated the conference. These
included Garth Nicholson, Dan Peterson, Annette Whittemore, John Chia, and
Judy Mikovits. The Belgium doctor/researcher Kenny de Meirleir gave a talk.
Basant Puri and Jonathan Kerr gave fine lectures. There were a few British
and Australian doctors in attendance, but many were missing.

The subject of this year's conference was severe ME - but many other
subjects were introduced.

Professor Brostoff chaired the conference. I had never heard of him and, by
the end of the day, I wished that it had stayed that way. I missed the
balanced, coordinated discussion and summaries of last year's leader,
Malcolm Hooper.

Annette Whittemore gave the keynote speech. She spoke of the new
Neuro-Immune Institute and the immediate goals. While the Institute building
will not be finished until September 2010, the scientists, Mikovits and
Vincent Lombardi, and are working feverishly. Annette Whittemore also gave
details of the struggle with her daughter's illness.

Annette Whittemore's efforts are very noble and far-reaching. I don't
suppose the ME folks in the UK have ever seen anyone like her. She mentioned
that Senator Harry Reid was the greatest supporter of CFS in the U.S.
Congress, and that that Senator Reid has made great efforts to bring the
Neuro-Immune Institute to Reno. Previous of this, I had never had a very
positive picture of Senator Reid - but now that has changed.

Garth Nicholson gave a lecture on mycoplasma infections in immune
compromised diseases, particularly Gulf War Syndrome. He spoke of the
connections of CFS/ME in the families of these sick veterans. Dr. Nicholson
of course was dragged into this research after his daughter got sick after
the first Gulf War. Much of the information presented scan be garnered from
the internet and various studies that Dr. Nicholson has presented over the
years. It was very good opening lecture and laid the groundwork for
subsequent presentations and discussions.

A Norwegian MS doctor named Harald Nyland spoke of an outbreak of an
epidemic of giardia in Bergen, Norway and its connection to CFS. Flashes of
humor punctuated his talk.

The soft-spoken Jonathan Kerr gave an update on his search for subsets and
markers for CFS. About five years ago Dr Kerr announced that it would be a
year until a marker and two years for a treatment (or the other way around).
At that time he was thinking of using existing drugs like Enteracept. That
did not work out when he was denied funding. Many people speak very highly
of Dr. Kerr's work and of the strides that he has made. These days he
announces no time line and soldiers along, making slow but steady progress.
He is involved in important collaboration with the Whittemore-Peterson
Neuro-Immune Institute.

Kenny de Meirleir gave a precise lecture on his experience with very severe
ME patients in Norway. He unexpectedly began his talk with a very short film
documenting a young Norwegian woman's descent into a near death isolation.
He also had the sister of another very severe ME patient tell briefly of her
sister. This young woman has lived in the same house with her sister for
four years without every seeing her. Her sister cannot tolerate any stimuli.
It was a powerful moment.

Often the sickest patients, the housebound and bed bound, are forgotten -
even at these conferences, where most participants can move about. The ones
who need the most help are not represented - although there were a number of
patient advocates in the audience. Through this film, Dr. de Meirleir
brought the news home and, despite the shocking unpleasantness of the

Dr. de Meirleir visited, observed and tested 22 very severely ill CFS
patients in Norway. In the US, you can't even get a doctor to bother to make
a home visit. Dr. de Meirleir does not fall into such a category and he is
looking for answers. He believes the answer resides in the sickest of
patients. As a result of his investigations in Norway Dr. de Meirleir has
come up with a simple "marker" test for severe CFS. This is a
self-administered home urine test that measures hydrogen sulfide. Protea
Biopharma makes the test.

De Meirleir also presented his concepts of the connection of CFS/ME with a
specific form of intestinal dysbiosis and presented his manner of testing
and treating it. He does not have a particularly treatment for the very
severe form of ME, which he characterized as "difficult".

At the end of his talk, a variety of pettinesses broke out. I suppose there
was some lingering irritation over his "press" conference of the day before.
De Meirleir said that he has an independent group examining his protocol and
its success rate. There were some expressed differences about the need for a
control group. He said that he would do that.

Dan Peterson gave perhaps the best overview of current antiviral work done
at his clinic. He presented the concept of translational medicine, a new
paradigm for studying and treating illness. He covered a lot of ground and
spoke of his use of Vistide. This guy is terrific.

Dr. John Chia gave another one of his fine presentations. Dr. Chia has
identified a serious subset of CFS, which is identified by real markers –
stains of enteroviruses in the stomach. (Of course as soon as a subset is
identified and markers established, this no longer is CFS in the mind of the
establishment and they use this to further substantiate that CFS does not
exist.) Among other things his treatment is Oxymatrine, a Chinese medicinal
compound. Oxymatrine brings some improvement in about half of the patients
that he treats. His son Andrew, who works closely with him, accompanied Dr.
Chia. Andrew is going to Pharmaceutical school with the specific intention
on working on pharmacological treatments for enteroviruses. Dr. John Chia
was dragged into the field of CFS research and treatment by the enteroviral
illness of his son. Andrew is mostly recovered and also dedicated to the
field. Dr. Chia is a precise diagnostician, who presents a very clear avenue
for some people to explore and possibly get well. Surprisingly very few
people are paying attention to this, although this conference has now
presented him twice in two years - so they must have some sense of the
peculiar diagnostics and success that he has reached with his approach to
enteroviruses involvement.

Dr. Judy Mikovits, who astonished so many folks at this conference last
year, was back for another lecture. She made her usual complex and far
reaching talk, most of which passed over my head. (I should have studied
biochemistry.) Her work at the Institute involves sub-setting CFS through
gene array chips and cytokine testing. The Institute is moving very fast and
I get a sense that specific information is going to emerge here sooner than
later. Certainly talking to Annette Whittemore and hearing Mikovits and Peterson makes one sense something is afoot, although they are smart enough not to say anything. During the question period Dr. Mikovits was asked if they had been working on a specific virus involved in CFS. She answered: yes, and then she followed up that there is a novel virus that has never
been associated with this disease
and that they had submitted their research
for publication. I could not hear the particular publication although I was
listening hard.

This particular one-day UK conference has a distinctly different feeling
that the longer and broader conferences that I have attended in the US.
However the one-day format is particularly hard-hitting and intense. The
lectures ranged from Basant Puri's report on brain scans, which was quite
detailed and scientific, to Norwegian Barbara Baumgarten's very practical
presentation of efforts to develop ME clinics at hospitals in Norway.
Needless to say these are quite different areas of consideration, and it
becomes almost incomprehensible to the listener trying to combine these
various threads.

However, certain continuity was given by the lectures of de Meirleir, Kerr,
Mikovits, Peterson, Nicholson, and Chia, which are tied together by several
threads. These include the search for diagnostic markers, the treatment of
gut dysbiosis through diet and probiotics, and the search for complicating
pathogens, and their treatment.

Once again I got the sense that the UK has there own specific and serious
problems in regards to this complex disease. Many of the participants
expressed dismay that the ideas and treatments presented to this conference
are unavailable to them under the NIH. (Some of the attendees seemed to be
hearing this information in these lectures for the first time.) For instance
the NIH will not pay for extensive thyroid testing, or for Acumens'
mitochondrial tests or any specialized experimental tests for this disease.
Much like the CDC, the government in the UK does not believe that this
disease exists or, if they do, they have no idea what it is, and they don't
seem to want to know. Private doctors like Myhill are available, but the
populace is not conditioned to seek out such treatment, which is not
reimbursed by the national insurance. The questions from the audience
indicate that many patients in the UK live in a bubble, as if the internet
does not exist. So much for the managed health system of the UK.

A final question of the day came from a man who asked the panel of speakers
for their assessment of when a marker and further treatments would be
available. The questioner expressed his feeling that the speakers had been
upbeat, but that he, the questioner, felt that he was lacking specifics
about diagnostics and treatment. Somehow he seemed disappointed at the day's
events. A few of the speakers gave vague answers - but no one would give the
questioner what he wanted. There was a long silence. Dr. Chia indicated that
the question was a bit more complicated; he said that diagnostics for
various subtypes were present now and that the problem was getting these
accepted. For instance the process that he uses, staining, is not new, nor
is it experimental. However, he has difficultly getting anyone to pay
attention to or care about his results. Meanwhile he goes forward searching
for treatments, and lobbying Pharmaceuticals for drug development for
enteroviruses. This fellow's question ended this conference on a bit of a
down note. It was a shame, as it was a day of fascinating talks.