Thursday, January 31, 2008

Nine-Year Followup of CFS patients

Nine-Year Follow-Up of Danish Chronic Fatigue Syndrome (CFS) Patients
  Impact on Health, Social, Vocational, and Personal Lives

  Journal: J of Chronic Fatigue Syndrome, Vol. 14, No. 2, 2007, pp. 7-23

  Authors: Mette Marie Andersen, Henrik Permin, Frank Albrecht

  Objective: To determine quality of life (QOL) and health in Danish
  CFS patients 9 years after diagnosis.

  Methods: Thirty-four adults with CFS responded to questions regarding
  QOL at diagnosis, and again 5 and 9 years later. At 9-year followup
  patients also responded to questions regarding health, fatigue, use
  of Health Care system, alcohol and exercise.

  Results: Two patients (6%) had recovered and 3 patients (10%) had
  received secondary diagnoses. Overall, there was no improvement,
  except with depression/anxiety. The order of severity among
  disabilities remained the same. Work had the highest disability
  score, followed by post-exertional malaise. Patients slept and rested
  13.6 hours a day (mean). Self-reported physical health correlated
  with hours sleeping and resting.
Rheumatic symptoms dominated the
  health symptoms. Alcohol consumption was low, and the use of the
  Health Care system was modest.

  Conclusion: After 9 years QOL was the same as at diagnosis, only
  mental health had improved.

* * *

I did, for a while, have monthly doctor appointments, when we were trying to find a prescription that worked and I needed to check in about the results and get a different prescription (which they wouldn't do by phone).  But once we found something that worked, I'm back to once a year: an annual physical that everyone should have and getting my prescription renewed.  So, anyone who thinks that CFS patients are a drain on the health care system is wrong: in fact, as prior blog posts have shown, most of us have totally given up on doctors and won't waste our time and money on going unless absolutely necessary.

The simple fact is, quality of life is not going to improve until Modern Medical Science comes up with a cure.  Right now, they can only address symptoms: pain, insomnia, nausea, diarrhea.  But the virus itself chugs along unchecked (except for what your immune system can do on its own).

Low Energy Bulbs cause Migraine

Low-energy bulbs 'cause migraine'
The lighting industry says that the latest bulbs do not flicker
Energy-saving light bulbs could trigger migraines, say campaigners.

The Migraine Action Association says members have told them how fluorescent bulbs have led to attacks.

The government is set to prevent the sale of conventional light bulbs within the next four years in a bid to cut carbon dioxide emissions.

Concerns have already been raised by epilepsy charities about an increased risk of seizures from energy-saving bulbs.

We would ask the government to avoid banning them completely, and still leave some opportunity for conventional bulbs to be purchased
Karen Manning
Migraine Action Association

Some bulbs use similar technology to fluorescent strip lights, and some users have complained that there can be a "flickering" effect.

They use approximately a quarter of the energy of conventional bulbs, and in September, Environment Secretary Hilary Benn said that a voluntary agreement with retailers would remove all conventional bulbs from the shops by December 2011.

However, Karen Manning, from the Migraine Action Association, said this could be damaging to some sufferers.

She said that up to six million people in the UK suffer from some sort of migraine attack.

"These bulbs do trigger migraines for some of our members - it's either the flickering, or the low intensity of the light, causing eye strain.

"We would ask the government to avoid banning them completely, and still leave some opportunity for conventional bulbs to be purchased."

Old technology

However, the Lighting Association, which represents bulb manufacturers, said that the latest energy-saving bulbs did not produce a flicker.

A spokesman said: "A small number of cases have been reported by people who suffer from reactions to certain types of linear fluorescent lamps.

"These were almost certainly triggered by old technology."

Last year the charity Epilepsy Action reported that a small number of people with the illness could have seizures triggered by low-energy bulbs.

* * *

I have heard reports from CFS patients who have tried the new bulbs and reported problems as well, so I'm not inclined to believe the manufacturers that the problems have been solved.

Wednesday, January 30, 2008

What's in a Name?

Posted to the Campaign For a Fair Name Message Board

Before we do something we might regret shouldn't all the facts be on the
table?  Its called informed consent, but we are not being fully informed.  All
the facts are being hidden just as they were when CFS was invented to hide
"the awful truth" about Myalgic Encephalomyelitis.  The name change advisory
board says that the acronym "ME/CFS" is a "medically correct" name to replace
CFS, but it will still have a false CFS fatigue definition distorting
research, and the demeaning CFS will still be part of the name?  How could
anyone believe this unimaginative hype that CFS will disappear when it is
clearly part of the acronym/name?

Don't be fooled again.  If you rename this disease - again - and believe that
the acronym ME/CFS is going to make CFS go away you may not like the
consequences.  People will ask what does ME/CFS stand for and you will have to
answer with nine words and then explain some more:  Myalgic Encephalomyelitis
or Myalgic Encephalopathy and Chronic Fatigue Syndrome.  Three names for the
disease and you supposedly get to choose whether you call it Encephalomyelitis
or Encephalopathy, its either one or the other.  How does that clear up the
confusion? Whatever you "choose" you will still have to keep on saying the F
word, so it seems CFS is not going away.

Some argue that Myalgic Encephalomyelitis is a difficult name to pronounce,
but if you look in a medical textbook you will find many extraordinary and
complicated terms and that certainly is not a reason to reject the name of
this disease.  If you can say polio-my-el-itis then you can say
encephalo-my-el-itis - a learning method that you get taught in your first
years at school.

The name affects everyone around the world so why is the decision to rename
the disease once again in the hands of a select group of Americans?  Where are
the international M.E. experts, particularly the ones who examined Myalgic
Encephalomyelitis patients long before the terrible CFS name change?  What
about Ramsay's 1986 definition or Hyde's 2006 definition?  What about the WHO
classifying M.E. as a neurological disease way back in 1969?  What about the
history of epidemics dating back to 1934?  Sadly what about the autopsies?
Shouldn't we be discussing these terribly important facts?

Isn't it crucial to discuss the history of the epidemics and the knowledge that Myalgic Encephalomyelitis is a very similar disease to Polio, that it was formerly called Atypical Poliomyelitis until they found that it was caused by other enteroviruses and not polio enteroviruses?  Or that it is a very similar disease to Post-Polio Syndrome, a neurological disease placed correctly at the NINDS?  Why isn't Myalgic Encephalomyelitis placed correctly at the NINDS?
No, the CDC prefers to call it CFS, states there are no tests or treatments and hides it at the Office of Women's Health, adding further insult to all the males who suffer from M.E.

Multiple Sclerosis was called Hysterical Paralysis or Fakers Disease when they
did not know how to diagnose it and M.S. sufferers were not believed just as
we are not believed, but in the 1950s a diagnostic test was found and the
original name, described by a famous physician Charcot in 1860 was restored,
and now everyone knows how serious this disease is.  Most people think that we
are faking it too when they hear CFS.  It's almost the same story but the
major difference is that we had diagnostic tests including MRIs, viral and
immune tests, and M.E. experts saying it was Myalgic Encephalomyelitis back in
the 80s.  They knew what it was yet they ignored all the evidence, changed it
to CFS and created a new definition.

This is the critical point - there was no need to change the name at all.

The scientific evidence for inflammation keeps mounting up and proving that
the original name was right, so why aren't we simply discussing going back to
the historically and medically correct name?  Don't you think it is time that
all these questions and facts were discussed openly, and that patients and
M.E. experts from all over the world - not just a small group of American
experts - are rightly consulted about restoring Myalgic Encephalomyelitis and
ensuring that the CDC acts fairly and places M.E. at the NINDS?

It is the only fair thing to do, in a "fair campaign".

What is going to help us the most, another confusing name change or the truth
about Myalgic Encephalomyelitis, the diagnostic tests, the known viral and
toxin causation and the real possibility that researchers could have
discovered a treatment by now if they had adequate funding?  If only we hadn't
wasted the last 20 years on CFS and all those made-up fatigue definitions and
the useless studies on fatigue.  M.E. patients not only suffer severe illness
and pain, they have been unnecessarily traumatised with disbelief, neglect,
abuse, poverty, isolation, loss of family and friends.  This has to stop.

Please stop and think before you get caught up supporting this mess and then
you won't have to complain later on that another wrongful name change did not
change anything at all and that the psyches are still getting paid millions to
provide Character Breaking Treatment and Gratuitous Exercise Torture while
biomedical research is starved.  Stop the madness!  Speak up!  Don't let them
get another dollar that should go to urgently needed research and support!

John Anderson

Permission to repost

NREMS Distribution in CFS

Paradoxical Nrems Distribution in "Pure" Chronic Fatigue Patients A
Comparison With Sleep Apnea-Hypopnea Patients and Healthy Control Subjects

Journal: J of Chronic Fatigue Syndrome

Authors: Olivier Le Bon MD, PhD, Daniel Neu MD, Filomena Valente PhD,
Paul Linkowski MD, PhD

Objective: The chronic fatigue syndrome (CFS) is a debated clinical
entity, not presently associated with specific sleep abnormalities.
However, higher levels of deep sleep and/or lower levels of light
sleep have been reported in several all-night polysomnography studies
in CFS patients. This distribution of Non-Rapid Eye Movement Sleep
(NREMS) contrasts with what would be expected if sleep was
interrupted by microawakenings, such as in sleep apneas or periodic
limb movements, where more light sleep and less deep sleep are
commonly observed. This "paradoxical" distribution of NREMS could
represent a characteristic feature of chronic fatigue and deserved to
be investigated.

Methods: A retrospective comparison of the NREMS distribution was
performed between 28 "pure" Chronic Fatigue Syndrome patients
(without primary sleep or psychiatric disorders), 27 Apneic-Hypopneic
patients and 27 Healthy Controls.

Results: Data showed CFS patients to have a higher stage 4/stage 2 or
stage 4/light sleep ratios than the other two conditions.

Conclusion: This sleep pattern is closer to what is observed in cases of infections than to what is seen after sleep fragmentation by primary sleep or in psychiatric disorders. Such a particular sleep pattern could provide insights into the pathophysiology of fatigue.

Keywords: Chronic fatigue syndrome, polysomnography, fatigue, NREM distribution

CFS and Cortisol

Source: New York Times
Date:   January 29, 2008
Author: Eric Nagourney

Maladies: Hormone Levels and Chronic Fatigue
Attenuated Morning Salivary Cortisol Concentrations in a Population-based Study
of Persons with Chronic Fatigue Syndrome and Well Controls (The Journal of
Clinical Endocrinology and Metabolism)

Women who suffer from chronic fatigue syndrome may be starting the day at a
disadvantage. A new study finds that they wake up with lower levels of a hormone
that helps people deal with stress.

The researchers, writing online in The Journal of Clinical Endocrinology and
Metabolism, said the low levels of the hormone, cortisol, might play a role in
the severe fatigue found in many patients with the syndrome.

The findings are based on a comparison of cortisol levels in about 700
volunteers, some with the syndrome and some without, who agreed to take saliva
samples when they woke up, a half-hour later and again a half-hour after that.

It has long been believed that cortisol levels play a role in the syndrome, but
for this study researchers focused on taking samples from a broad segment of the
general population. They also made a point of having the samples taken on a
normal workday, said Dr. William C. Reeves of the federal Centers for Disease
Control and Prevention, an author of the study.

The cortisol differences were not found in the men studied.

'We were surprised that the effect was limited to women,' Dr. Reeves said
in an e-mail message, 'and this may help to explain the higher prevalence of
C.F.S. in women.'

(c) 2008 New York Times


* * *

The question is, chicken and the egg, do we have low cortisol because we already have CFS, or do we have CFS because we already had low cortisol?  Given the number of patients who were Type A personalities handling stress quite well until they got a virus, I lean toward the virus causing some changes that result in lowered cortisol.

Nonetheless, objective proof that there's something physically wrong, and the test that my doctor refused to order when I asked for it.  Cortisol levels are off in opposite directions with CFS and depression, so if he'd ordered the test, there would have been incontrovertible proof that his depression diagnosis was wrong, proof that he did not want to see.

One Click Judicial Review Update

 One Click Judicial Review - The CFS/ME NICE Guidelines

As previously announced by One Click, we have now reached the target of £10,250 set us by the Legal Services Commission (

One Click would like to thank everybody from around the world who contributed. Please see Very Simply We Did It (  Please send no more donations to the fund.

We are expecting a decision from the LSC any day. The LSC is all too well aware of the urgency of this case and the fact that we have live proceedings afoot. We would like to thank the LSC for all the assistance provided with this case to date.

The One Click Group


Live Links highlighted in blue

What It Is: Judicial Review / CFS/ME NICE Guidelines
Who Will Conduct It: Saunders Solicitors LLP
Counsel Kate Marcus from Doughty Street Chambers
Why It's Necessary: One Click Legal Appeal

The CFS/ME NICE Guidelines have been produced by a process of documented unethical politicaland medical manipulation of due process

Monday, January 28, 2008

CFS vs. Rheumatoid Arthritis

Health-Related Quality of Life in Chronic Fatigue Syndrome versus
Rheumatoid Arthritis as Control Group

Journal: J of Chronic Fatigue Syndrome, Vol. 14, No. 2, 2007, pp.31-43

Authors: Montserrat Núñez PhD, Esther Núñez PhD, Jos Luis del Val MD,
Jos Manuel Fernández-Huerta, Cayetano Alegre MD, Maria Bonet MD,
Daniel Roig MD, Esther Gomez MD, Teresa Godas Sieso, Joaquim Fernández-Sol MD

The objectives of this study were

(1) evaluate health-related quality of life (HRQL) in patients with
chronic fatigue syndrome (CFS);

(2) to compare the HRQL of these patients with that of rheumatoid
arthritis (RA) patients and healthy Spanish reference population
values (RPV); and

(3) to identify the influence of sociodemographic and clinical
variables on HRQL in CFS patients.

We included 216 outpatients: 94 females/14 males (age 42.9 ± 9.9
years) with CFS and 94 females/14 males with RA (age 42.9 ± 9.9
years). We used a cross-sectional, observational design.
Sociodemographic data, comorbidities, pain (VAS) and global
functional status were determined. HRQL was measured by the SF-36 and
HAQ questionnaires.

CFS patients had worse scores than RA patients in all SF36 dimensions
except emotional
role (p < 0.01). Both CFS and RA patients had worse
scores in all SF36 dimensions than RPV. In CFS patients, pain
negatively influenced HRQL (p < 0.05) except for physical role,
social function and emotional role. Global functional status
negatively influenced HRQL (p < 0.05) except for bodily pain, general
health and mental health. Comorbidities worsened scores for physical
and social functions and mental health.

In conclusion, HRQL was worse in patients with CFS than in those with
RA. Both CFS and RA patients had worse HRQL compared with RPV.
Comorbidities, pain and global functional status influenced HRQL in
CFS patients. Standardised HRQL instruments are of value in
determining the quality of life in these patients.

Keywords: Chronic fatigue syndrome, quality of life, functional involvement


Sunday, January 27, 2008

Unexplained Illnesses are REAL

Unexplained illnesses may still be real
Sunday, January 27, 2008

Most of the patients who come to see Newark neurologist Benjamin
Natelson have seen many doctors before him. They tell a similar story.
Their diagnostic tests came back normal, and their doctors could not
explain their intense pain or fatigue. Often, they got a similar
message: It's all in their head.

Natelson, a professor of neuros at the University of Medicine
and Dentistry of New Jersey, specializes in treating patients other
physicians do not want to treat. His patients are stricken with
unexplained fatigue and pain. Some have chronic fatigue syndrome,
fibromyalgia or irritable bowel syndrome.

Natelson, the author of "Your Symptoms are Real: What To Do When Your
Doctor Says Nothing is Wrong," published by Wiley, treats patients
whose illnesses do not follow the usual rules of classical medicine.
Despite this, he says many of his patients are very sick. He spoke
last week with Carol Ann Campbell, The Star-Ledger's medical reporter.

Your book looks into what you describe as invisible illnesses. What's
an invisible illness? The way doctors are taught to diagnose illness
-- to look at the patient's appearance and find abnormal medical
tests -- does not hold up in these patients because they look well and
their tests are normal. So the doctor says, "Oh. This must be a

Do doctors really tell these patients that their
problems are all in their head? Are you kidding? Often. Somehow the
doctor turns things around in his head and, instead of offering help, blames the  patient for not feeling well. That's inappropriate and stigmatizing.
I tell patients that just because I can't figure it all
out doesn't mean that nothing is wrong with them.

What problems do
your patients have? About half are disabled and unable to work. Some
are too fatigued to do household chores. Some are in such pain they
walk around with cushions to sit on, or they use a cane, or they can't
get out of bed. Is there a link between chronic fatigue and breast
cancer? Twenty five percent of breast cancer survivors have severe
unexplained fatigue that could be labelled as CFS. This rate is enormous and suggests there is something about serious disease and/ or its
treatment that leads to long-lasting fatigue. Their fatigue is
invisible to their doctors, but it sure isn't to them.

Many of your
patients have fibromyalgia, described as a disorder characterized by
widespread pain and fatigue. The U.S. Food and Drug Administration re approved a new drug, Lyrica, by Pfizer Inc., to treat fibro. But some critics have argued that fibromyalgia is not a
disease. I don't want to argue whether it is a disease or not. That's
not the point. The point is that people are suffering, and there are
criteria for what that suffering is called. Andthere is a drug that
makes them better.

Do you prescribe Lyrica? This class of drugs has a
history of helping patients with pain. In my clinical judgment these
drugs can help. Having a drug for fibromyalgia will become a standard
of care, good for patients. Lyrica is already a part of my

Have you accepted any money from pharmaceutical
companies? The UMDNJ Pain and Fatigue Study Center (where Natelson is
co-director) has received funding from the NIH (U.S. National
Institutes of Health) and also funding for therapeutic trials from
Cephalon, Cyberonics and Jazz Pharmaceuticals. I have not personally
received any money from pharmaceutical companies.

What can you do for
your patients? Many other doctors obviously are not able to help them
get better. I believe there really is a path to wellness, outlined in
my book. The wellness plan consists of gentle physical conditioning,
coach and medication. We help fatigue patients learn ways to
reduce the fear of increasing activity. We focus on the positive, and
help patients learn to suffer less and improve the quality of their

In your book, you write about positive thinking. Isn't this
just another way of telling patients their problems are all in their
head? In any illness, whether it is multiple sclerosis or rheumatoid
arthritis, patients will feel worsewhen they get blue and down. Who
you are and how you feel about yourself and your illness impacts on
how you feel physically. If you can sweep away the negativity,
regardless of the diagnosis, the person will feel better. Several
studies looking at medications for patients with pain and fatigue show
a substantial placebo effect. What does that suggest to you? As a
clinician, it is fascinating. With some anti-depressants we see a 40
percent placebo effect and a 55 percent drug effect. Not a huge
difference. But in practice these drugs really work incredibly well.
The placebo effect will wane after a few months. The drug effects do

How do patients suffering from pain and fatigue feel when their
doctors suggest that there is nothing physically wrong with them? They
go away feeling worse. They feel stigmatized and angry. When that
happens to them more than once or twice they just say, "I'm not going
to see these doctors.
I'm going to figure this out myself." That's why
we have a $40 billion market in alternative medicines. The patients
are tired of being rejected.

Don't we need tests and criteria to
diagnose illness? There is no blood test for schizophrenia. No X-ray.
There is no test for migraine headaches. There are many illnesses that
do not fit into the classical diagnostic algorithm taught in med
school. Some doctors just don't know how to deal with pain and
fatigue. Their eyes just glaze over.

Copyright 2008  The Star Ledger
Copyright 2008 All Rights Reserved.

* * *

This is the story told by most CFS patients: the doctor turned things around in his mind until it made sense to him.

One of my doctors desperately wanted to diagnose depression.  So, he turned around the report that I lost my job due to increasing symptoms, until it fit what he wanted to hear: that I developed symptoms only after becoming depressed over losing my job.  It's not what I told him, but it's what made sense to him.

When inappropriate medication didn't help, and made me feel worse, he again turned things around in his head to fit his prejudice.  The problem wasn't that he gave me the wrong pills for what ailed me, but that I "didn't want to get better".

To this day, he will not admit that he made a mistake in diagnosing depression.  He will not admit that my previous specialist diagnosis of CFS was accurate.  He still puts all the blame for both the original illness and his inability to cure it squarely on me, "nothing you said made sense."  Yet, when I say the same things to a doctor who knows about CFS, it is instantly clear that I have CFS because I'm a textbook case: I had a virus and never again felt right.  What really didn't make sense was the doctor's insistence that he knew better than I did what my symptoms were, and that he knew better than the specialists what my diagnosis should be.

There's a reason for symptoms.  If it's not instantly apparent, the doctors need to look deeper to find it, and not put the blame on the patient.  As Dr. Natelson says, that's inappropriate.  The symptoms for depression are not the same as the symptoms of CFS; yes, they both include fatigue and cognitive problems related to fatigue, but that's where it ends -- CFS patients will report fever, rash, severe digestive problems, excruciating pain, being light-headed, feeling worse after exercise...  It doesn't take much intelligence to figure out that if depressives feel energized after exercise and CFS patients get worse, that you're not dealing with the same condition, but it's amazing how many doctors don't even know that much about CFS: they hear "fatigue" and don't need to look further, because they think fatigue always means depression.  It doesn't.

If you've tried several different anti-depressants and the patient still isn't getting better, then it's time to think outside the box and look for something other than depression.  The best doctors will do that.  The average doctor will doggedly keep going down the same wrong road until the patient gives up on him and goes home to treat herself.

Then, when the patient says that she's fed up with doctors and doesn't trust them any more, that, too, is blamed on the patient and not on the doctors who proved to her that doctors don't know everything.

International Symposium on CFS

*Reporter Note** : *

-          ME is used where ME/CFS is meant.

-          Prof. Dr. Evengard (Sweden) and Prof. Dr. Montagnier (France)
were scheduled to appear, but cancelled at the last moment.

*1.      **Introduction:  Prof. Dr. Maes (Belgium) : Organizer *
Dr. Maes emphasizes that the research of the last years clearly shows that
ME is a biological - or more precisely - an immunological illness.
From the
lectures below, it will become clear that sufficient proof has been found
for this statement, and that viral/bacterial infections, "leaky gut
syndrome" and stress all play a role in possible causation. There are also
clear hereditary factors.

*2. Foreword: Mrs. Inge Vervotte,  Minister of Families/Public Health and
Welfare *

The number of patients with chronic illnesses in Belgium and elsewhere in
the world has increased dramatically and the WHO's prognosis in this area is
bleak. The basis of current Belgian health policy is insufficient because it
mainly focuses on the individual needs of patients and not enough on quality
of life as a whole. The minister wants to incorporate the latter into her
new policy proposal. The minister clearly underlines that in ME quality of
life and human dignity are in danger and that basic medical care is
therefore insufficient.
ME-patients need a reliable healthcare system that adapts to patient needs
and that understands the important role played by their surroundings. The
core ideas in the policy with relation to ME will be: good flow of
information, motivation and support for patients, learning self-management
techniques and especially increased dialogue. The minister also underlined
the importance of a fast diagnosis for ME and the role general practitioners
must play in this. Finally, she recognized the importance of scientific
research; however she did not go into this further.

*3. Dr. Lucille Capuron: (France/USA): Department of Psychiatry & Behavioral
Medicine: Inflammation, fatigue and depression *
Dr. Capuron focused on the influence of cytokines (signaling compounds that
allow one cell to communicate with another) in ME and depression.

It is clear that cytokine activity is elevated in ME-patients as there is a
cytokine overproduction of  interleukin 1 and 6 and interferon alpha. The
consequence of this activity and the associated inflammation processes
offers an explanation for the general flu-like feeling and the disturbed
activity of the HPA-axis and adrenal glands. This indirectly brings about
changes in the mechanism that is responsible for sugar metabolism and the
quantity and functioning of a number of regulating hormones such as ACTH,
dopamine, CRH, cortical and tryptophan. Healthy rats given cytokines or
better yet substances which increases the cytokine activity, display
sickness behavior. The same result occurs when cytokines are administered to
cancer patients; they then suffer from fatigue or depression. The same
mechanism is found in part in depression (primary or secondary) but also in
other illnesses such as cancer and cardiovascular disorders.

In other words, the changes in the immune system (immune
depression/inflammation processes) which have been caused by the raised
cytokine activity, can cause a ME-like or a depression-like syndrome and
this can be seen in both healthy and ill non-ME patients! Moreover, the
"depression" which is diagnosed in some ME-patients is actually a
consequence of this disturbed mechanism.
It is clear that the inflammation processes alone is sufficient for a
"fatigue syndrome" with its many symptoms.

*     4. Prof. Dr. Benjamin Natelson: (USA): The Pathophysiology of CFS. *

The research of Dr. Natelson and associates focuses primarily on the
classification of subgroups, potential differences between ME and
Fibromyalgia, brain deviations and neurological deviations.

Much research was done to classify ME-patients into subgroups to reduce the
large mixture in this population in hope of aiding the study of causation.

Another research field focuses on the possible differences between ME and
Fibromyalgia (FM) and if the disorders are at all the same. Research shows
that 43% of women with ME also have FM; in ME serotonin levels are raised,
while  in FM they are reduced, therefore ME must be different from FM
according to Dr. Natelson.

From MRI scans and neurological research, it becomes clear that there are
abnormalities in the brain which offer an affirmation of reported diminished
cognitive functions in patients: the ability to think, to remember, etc.
And finally, research into the spinal cord fluid from a group of ME-patients
shows many abnormalities. No less than 30% of the examined patients had
abnormal values. Thus, inflammation process was clearly determined by the
increase in proteins and white blood cells.

*5. Prof. Dr. Kenny the Meirleir: Belgium: Immune disorders in ME/CFS *

*Reporter note: *Even for the doctors present Dr. De Meirleir's complex
recitation was hard to follow as it was given at an accelerated tempo in
order to make time for the two following participants - who had not
previously been announced.  I have therefore tried to explain the most
critical information in an understandable language myself and added a lot of
other valuable information - that was not specifically mentioned at this
conference – but could be of interest to most ME-patients.**

Prof. Dr. De Meirleir spoke of the many immunological problems (PKR,
RNase-L,..) that are found  in the blood of ME-patients and of the many
consequences of these impairments.
Two important enzyme systems - RNase-L and PKR - which play a key role in
the natural immune responses of the body, have been clearly disturbed: they
have been started but do never stop.

*A) RNase-L enzyme deficiency *

The enzyme RNase-L plays an important role in maintaining the normal defense
mechanism of viral, as well as bacterial, infections. If someone is infected
with a virus, interferon (a messenger substance) is activated and ensures
that RNase-L shoots into action. RNase-L then acts like a scissor and cuts
viruses into pieces and renders them harmless. The purpose of this is to
prevent the infection from spreading to the rest of the body and in this way
protects the body from viruses.  The infected cell will be forced to destroy
itself and in this way keeps the viruses from multiplying further.

From research it has become clear that in ME-patients RNase-L is split into
a number of pieces. One piece of it -* the low Molecular
Weight*-*LMW-*causes a lot of damage in the body, with the result that
the genetic
material RNA ensures in an uncontrolled manner is demolished. Not only the
genetic material of the virus infected cell, but also the hereditary
material of normal cells is destroyed.  Very simply explained, the
activation ofthis enzyme ensures that not only the proteins of the virus
are demolished, but also to a lesser degree human proteins. Because of this,
a large portion of normal immune cells are seriously damaged because they
commit suicide. This process is called *apoptosis.*

* *

*This causes the immune system to be weakened. The impact of this is that:*

** Opportunistic infections, such as Mycoplasma and Chlamydia*, which
normally have no chance in healthy people, are able to develop. Mycoplasmas
are very small microorganisms without cell walls. Because there are no cell
walls, they can easily penetrate other cells. When the immune system has
become much less efficient because of increased apoptosis - as is the case
with ME - they are free to multiply and cause extensive damage. Chlamydia is
frequently contagions in ME-patients. Chlamydia Pneumonia is the most common
form and can give sinus infections but also causes infections of the airways
of patients whose immune systems are functioning inadequately.

* A *reduced resistance to cancer can also arise*.

**Viral infections,* such as the* human herpes viruses (HHV),* are
frequently found in a portion of  ME-patients. Herpes viruses occur when the
immune reaction is suppressed and there is chronic immune dysfunction. In
turn, a constant viral infection can ensure that the enzymes PKR and RNase-L
are over stimulated, with all impact for the body.

*Another consequence of the presence of abnormal RNase-L enzyme is the
disturbance of the ion transport.* An example of this is the ionenfluxen:  no
normal transport can take place of the ions by the cell partition. This is
responsible for a number of the specific symptoms of ME: large fluctuations
in blood sugar, modified pain sensations, increased sensitivity to toxic
substances (abnormal evacuation of chemical substances mainly mercury and
nickel), etc.
* *B) Disturbed PKR*

A second important antiviral defense mechanism is PKR. PKR is also a protein
that is activated by viral infection. It will ensure that a number of
substances is released which will encourage the spontaneous cell death of a
virus-infected cell.  Moreover it also starts inflammation processes in the
body which reduce the infection and afterwards ensure the disposal of it
from the body.

Part of the ME-population - and this in contrast to patients with MS - PKR
shows a continuously higher activity level. This leads to an early
destruction of the cells responsible for the defense and to a badly
functioning immune system, with for example, an increase of
*C) Disturbed NO-concentrations *

NO (Nitric Oxide) is a substance which is produced by the white blood cells.
Under normal circumstances NO is important for regulating certain
physiological responses. In ME-patients the NO-value often has been raised.
Raised concentrations of NO during a long time are toxic for the cells and
disturb the immune responses. A number of typical symptoms result: headache,
myalgia, low blood pressure.
*D) Disturbed Elastase *
Elastase is a substance which cuts RNase-L in pieces and in this way
disorganizes the RNase-L-system. Elastase however also acts on the
connective tissues. If there is an overload in the body - as is often the
case with ME - the connective tissue is split up. This could play a role in
back and joint pain because the joints have insufficient support to keep
them in place. The abnormal high activity of the enzyme elastase keeps in
every way a link with the incapacity of patients to carry out physical
activity. The performance during the bicycle test is partly determined by
the activity of elastase.

*E) Deviation in number and activity in **NK-cells*
One of the most occurring problems in the immune system of ME-patients is
the strongly reduced Natural Killer cell-activity. NK-cells are immune cells
which ensure the first defense against abnormal cells in the body (damaged
cells, cancer cells, infected cells). ME-patients frequently have a reduced
number of NK-cells and the NK-cells activity has often been strongly reduced
so that these cells are less able to carry out their function (reduced

*F) Raised actine levels*

Actine is a protein that ensures the physical structure of the cell is
maintained and that cells can move properly. It is of critical importance
for immune cells to search for invaders so that these can be destroyed. In
the immune cells of ME-patients however actine is demolished or split up by
other enzymes (proteases). More actine in blood indicates elevated cell
* *Some additional elements from the statement of Dr. De Meirleir:*
- Roughly three groups of ME can be distinguished: those with an MS-like
syndrome, those with a mild rheumatic like syndrome and those with a
syndrome with low cortisol levels and many symptoms.

- A clear difference to MS is the raised PKR activity (that is reduced in

- Not only the immune system has been damaged but also other systems, like
the hormonal system.
- Gene research in ME : Shows that there is a clear difference between
patients which became gradually or suddenly ill. Especially the genes
related to the immune system are different (in comparison with healthy
people): there is clearly an activation of genes which are related to immune

*6. Mr. Marc Van Impe: (Belgium) : Freelance journalist and
ME-Lobbyist: Problems
surrounding ME in Belgium and elsewhere *

Marc van Impe has been a lobbyist for ME for many years. He also maintains
contact with top officials in politics and the insurance world.  Mr. Van
Impe discusses the problems surrounding RIZIV, health insurance funding and
reference centers.

The Belgian government recently released a report evaluating the
ME-reference-centers. Note : This report was posted through Co-Cure in
English and French. The report was completely negative concerning the
functioning of the centers and the achieved goals. Less than 6% of
ME-patients appeared to respond well to the offered combination of Cognitive
Behavior Therapy and Graded Exercise Therapy. For your information: 6% is
the usual result expected to be generated by the "placebo effect".  Thus,
the result of the treatment offered by the centers is effectively zero.

Another problem that was mentioned is that of the health insurance funders
and the RIZIV. They want to push ME in Belgium into the psychiatric corner,
as it is in some other European countries. This has to do with the
hospitalization and income insurance which they do not want to pay. However,
independent court cases are generally won. RIZIV and CM are supporters of
Cognitive Behavior Therapy (CBT). This CBT, which has existed for decades,
was taken out of the old box by the psychiatrists. They wanted to find a new
"consuming market" for the therapy. The proof from the centers that this
therapy produces few positive results reinforces what people in the ME-world
have been saying for a long time: That as a supportive therapy CBT can
sometimes be useful, as is the case in other illnesses, but no one has been
healed by learning how to deal better with their illness. In the world of
insurers ME is too often taken off as a "non objectification disorder" and
one speaks too easy about "illness benefit". Also the problem of the bad
information flow and the large shortage of good informed experts in courts
was briefly raised.
Finally Marc Van Impe underlined that the large discord which exists in
Belgium has an important negative impact. It appears that this is abused by,
for instance RIZIV, insurance companies and politicians for the conservation
of a status quo. It will be very important in the future to get everyone on
one line to increase battle strength also. The key to success will be
cooperation on all fronts.

*7. Mevr. Annette Whittemore: The Whittemore-Peterson Institute for
Neuro-Immune Disease: (USA): A new hopeful international project*

Mrs. Whittemore was the "surprise act" of the day with a new hopeful
international project. Together with Prof. Dr. Dan Peterson and Prof. Dr. De
Meirleir, she has founded a unique ME/CFS research centre in Reno, Nevada,
USA. Mr. and Mrs. Whittemore have been personally involved for many years in
the ME-business and are important lobbyists in the USA/Nevada.

The newly erected ME-centre will be integrated with the oncology research
department on the campus of the University of Nevada Center for Molecular
Medicine. With the cooperation between these three large entities they hope
to achieve better and faster results. Besides research they also want to
give support to patients and provide training for medical professionals.  The
first objective is to stimulate ME-research so that there will be more
answers about biomarkers and treatment. They also hope to get more
governmental support with this ME-centre worldwide and to improve the
reaction speed of governmental agencies.

The centre is unique in its kind. It is the first institute for
neuro-immunological illnesses (such as ME) with a three-part target and at
university level (credibility). Moreover a structured cooperation will be
created between doctors in general and between foreign searchers in
particular. They also try, in a continuous way, to get subsidization for the
fundamental scientific research in ME.
Completion of this new international ME-centre is expected by 2009.

*8. Dr. M. Brack: France: Antioxidants and oxidative stress*
Both Dr. Brack and Dr. Maes consider oxidative stress OS an important factor
in ME.

*Note of reporter: *

Oxidative stress OS - the shaping of free radicals - is a normal biological
process and necessary for normal bodily functioning. Free radicals arise
more easily under the influence of poison, medicines, strong sunlight, air
clogging, radiation, cigarette smoke etc... OS steps on when the delicate
pro/antioxidant balance is disturbed (pro-oxidant status). When this process
happens accelerated - and therefore too much OS or free radicals form in the
body - sicknesses or health problems can arise. Thus Oxidative stress would
play a role in a lot of illnesses: cardiovascular disorders, metabolism -
and infectious diseases (e.g. AIDS), neurodegenerative illnesses (MS,
Parkinson), accelerated ageing and cancer. OS can damage fats, proteins,
organs and even DNA. From research becomes clear that because of the modern
living conditions there are more free radicals and oxidative processes in
the human body than ever before.

This process of OS can be positively influenced (slowed down) by taking
enough antioxidants from food or in the form of supplements. Antioxidant -
literally "against oxygen" – prevents the harmful free radicals to cause
damage by catching them and for this reason they are called free radical
catchers. Simply expressed the antioxidants reduce wear which is caused by
OS. The most important antioxidants are vitamin C and E and the minerals
selenium and zinc. Vegetables and fruit are rich in antioxidants and must
therefore be eaten sufficiently. However research show that vegetables and
fruits contain much less antioxidants then ever before. The reasons may have
to do with : too fast growing methods, in sere growing (too little
sunlight), pesticides abuse, preservation, too fast preparation (cook
Oxidative Stress to the mitochondrial (the cell's energy factory) plays an
important role in fatigue complaints like ME and Fibromyalgia. Chronic
infections – as occur in many ME-patients - can exhaust the
antioxidant-defense mechanisms which also increases OS. Research shows that
the most important intracellular antioxidant, glutathione, is greatly
reduced or exhausted in most ME- patients.

*Statement Dr. Brack*

The statement of Dr. Brack sufficiently dealt with the correct combination
and dose of antioxidants. He indicated that taking supplements is not to be
recommended without medical advice and that the incorrect use of
antioxidants can in itself cause OS. Nutrients work in synergy with each
other, and for this reason it is bad and even dangerous to take separate
supplements. Vitamin E research showed already the potential harm when taken
without real shortage. Dr. Brack suggests every patients to start with a
general lab status of antioxidants and work then in more detail on the
shortages that result from this. He suggests to start first with a general
complex and add later on the extra nutrients (antioxidants) that are needed
according to the tests.

*9. Prof. Dr. Maes: (Belgium-USA): ME*: *An inflammatory disorder with an
excess of oxidative stress*

External and internal stressors (stress, infections) cause changes in Nf-kB.
Nf-kB is a substance in the cells which is an important medium bug of OS and
inflammation processes.  The increase of Nf-kB in ME explains the many
symptoms and could have an important impact on the increase in
OS/inflammation processes which can result in a leaking bowel (Leaky Gut).
Other causes of a leaking bowel are: use of pain-killers and antibiotics,
operations, food allergies, stress. The OS causes damage to mitochondria,
fats and proteins and acts - with the inflammation responses - that there
are auto-immunoreactions. Note: A large part of the ME-patients have these
auto immunoreactions. Each pathogenic germ which penetrates the body is
normally attacked by the body's defense mechanism and cleared in this way.
In autoimmune diseases the defense wrongly attacks an organ/cells from the
own body. That response is started by an underlying sickness process.
OS might also play a role in ME. This becomes clear from the shortages of a
number of essential antioxidants such as carnitine, DHEA and zinc. In Dr.
Maes' view this might be an important cause for ME. In his ME-treatment
omega-3 acids plays an important role. Omega-3 have inflammation inhibitor
properties and reduces raised prostaglandin (type hormones) and cytokine
activity in ME. A shortage of omega-3 is able to play a role in a number of
disorders other than ME. Note: In our Western society/diet the proportion
between Omega 3 and 6 is extremely disturbed with a surplus of Omega 6 and a
shortage of Omega 3. This is due to changing diet habits.

*10 Dr. Jonathan Kerr: UK: Genomics and proteomics of ME *

The British researcher who now receives the most attention is Dr. Johnathan
Kerr (London). He leads the largest study to the genetic basis of ME - a new
branch in ME-research. Dr. Kerr is also part of the international research
group of the Whittemore-Peterson Institute (USA).

As could be expected, a lot of defects were found in the genes of
ME-patients. The divergent gene activity relates for a large part to the
immune system and to a lesser degree to the mitochondria. The gene research
found no less than 78 genes which were hyperactive; only a few were
hypoactive. Moreover these deviations appear to lead to
overproduction/stimulation/low production of certain proteins (see research
Dr. De Meirleir).
Future research will have to determine which genes are specific for ME and
which are not. The research of Dr. Kerr is also important because it could
produce markers which can improve the diagnosis of the disorder. These
markers are expected in one or two years - the soonest. Dr. Kerr also
briefly mentioned the role of viral infections in ME (see statement Dr.
Capuron). Viral infections can increase the amount of cytokines - also in
the brain -and stimulate the immune system. Several viruses are found in ME:
acute viruses (EBV, enteroviruses, Mycoplasmas), chronic viruses and
reactive viruses (herpes viruses).

"Hope4All has translated this article which was posted (in Dutch) on
different ME-Fora in Belgium and the Netherlands by mid 2007' .

Teaching Doctors to Diagnose CFS

The Effectiveness of Early Educational Intervention in Improving
Future Physicians' Attitudes Regarding CFS/FM

Journal: J of Chronic Fatigue Syndrome, Vol. 14, No. 2, 2007, pp. 25-30

Authors: Tony V. Lu MD, Susan R. Torres-Harding PhD, Leonard A Jason PhD

Objective: To assess the effects of an early educational intervention
program's ability to alter the perceptions and attitudes of future
physicians regarding chronic fatigue syndrome/fibromyalgia (CFS/FM),
improve their understanding and acceptance of these diseases, make
them feel more comfortable in diagnosing and treating patients.

Method: Third-year medical students were surveyed before and after an
educational intervention program. The three questions posed to the
students in the survey were:

(1) How comfortable do you feel you are in diagnosing and treating
patients with CFS /FM?,

(2) Do you consider CFS/FM legitimate illnesses?, and

(3) Do you want to treat patients with CFS/FM?

Results: The educational intervention program helped about half of
the future physicians feel comfortable in diagnosing and treating
patients with CFS/FM and improved by over 25% their willingness to
treat patients with CFS.

Conclusion: An educational intervention program appeared to improve
future physicians' understanding and appreciation of CFS/FM, made
them feel more comfortable diagnosing and treating these diseases,
and increased their willingness to treat patients with CFS/FM.