Saturday, January 12, 2008
Prior entry about Jones' opinions: http://journals.aol.com/kmc528/Lifeasweknowit/entries/2008/01/05/blame-the-patient/1806
Tom Kindlon observes:
"... with so much evidence of things happening in people's bodies, I think money would be better spent with the premise that the people are actually diseased, not that they have forgotten what feeling healthy is like and actually think that they're ill when actually they're just misinterpreting normal symptoms, which is the way White has generally portrayed the interoception model for CFS to be."
I remember what healthy feels like, and it doesn't feel like this, or like anything I've felt like in the past 8 years.
Desperately trying to get back to feeling healthy is not something that's done by someone who is "enjoying the sick role and wants to perpetuate it" -- if that were truly the case, no CFS patient would ever want to see a doctor, would never ask for a prescription. They'd be content to stay home in bed making no effort to find a cure.
The misinterpretation comes in when a patient describes symptoms compatible with the flu (exhaustion, achy, lethargy, sleeping a lot, difficulty concentrating because you're sick) and a doctor concludes that this must be depression. A depression diagnosis REQUIRES an emotional component -- this is not an optional thing -- so if the patient isn't describing crying jags, feeling worthless, thoughts of suicide, etc., it can't be depression.
As Dr. Yunus says, it's not the patients who are disturbed, it's the doctors, because they misinterpret to make things say what they want them to say.
If "all tests are normal", that should prompt the doctor to look further for the cause of the symptoms; it should not prompt the doctor to call the patient a liar when she describes objective symptoms that can't be faked. The abnormalities in CFS will not show up on the basic blood tests, but they are very obvious when the doctor thinks outside the box and does advanced tests.
Erik undertook to check out references to Jones in Osler's Web. Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic by Hillary Johnson and provides the following quote to prove that this is not just some misperception by the patient.
"The Lie" Page 321
During the late 1970's and mid-1980's synthetic interleukin 2 -
alternatively known as T-cell growth factor because it promoted the
proliferation of T-cells--had ben touted as a magic bullet cancer
therapy. By the late 1980's, however, the drug was used only in the
most desperate cases because of its extraordinary toxicity. For many
cancer sufferers, the cure turned out to be worse than the disease.
In addition to "severe cognitive changes (with) evidence of cognitive
deterioration" and mood changes, researchers had noted decreased
energy, fatigue, anorexia, disorientation, chills, heart arrhythmias,
and even coma. "Many (patients) likened their symptoms to an
influenza-like syndrome," one group of researchers wrote. Spurred by two 1987 reports describing the toxic side effects of synthetic Il-2 in cancer patients, symptoms that wer remarkably similar to the symptoms of CFS,* Cheney had been measuring interleukin-2 levels in his adult patients in Charlotte. He wondered if CFS patients were suffering, in some part, from the effects of an exorbitant rush of the substance in response to whatever pathogen was causing their disease. A search of the literature revealed just four other disorders with such a marker: chronic progressive multiple sclerosis, tropical spastic paraparesis, T-cell lymphoma, and AIDS.
Cheney was particularly impressed by the fact that, like tropical spastic paraparesis, the latter two were definite retrovirus-caused maladies, and the first -- MS-- was a suspected retrovirus disease. Strikingly, the levels of interleukin-2 in most of Cheney's patients were higher than in people suffering from any of the four disease described in the literature -- and as much as fifty times higher than in healthy controls.
When in June 1988 the New England Journal of Medicine published a
letter about high interleukin-2 levels in multiple sclerosis
patients, Cheney began to wonder of his interleukin-2 findings
should be published as well. The MS researchers, after all, had used
the same test kit to assay for interleukin-2 that Cheney's lab used,
suggesting that the values between the two patient groups would have
a high degree of standardization. Cheney was impressed, too, that
the interleukin-2 levels in his adult CFS patients were higher than
the levels in the most severe MS cases.
"The average value for rapidly progressing MS is forty-two units of
interleukin-2 per millileter of serum," Cheney commented, "In our
patients, the average value is sixty, but our highest value is
sixteen hundred units per milliliter."
Cheney decided to conscript David Bell into his interleukin-2
research. The Charlotte doctor was curious to know whether children
with the disease displayed the same abnormality; he also wanted to
test patients from a second, geographically distinct location. Bell
was immediately amenable to Cheney's overture. The doctors decided
to select three categories of children: those who were severely ill
with CFS, children who were mildly ill, and healthy children. The
well children had normal levels of interleukin-2; children with mild
disease had levels ten times higher; children with severe disease had levels higher than any measure Cheney could find in the literature for AIDS, lymphoma, tropical spastic paraparesis, or multiple sclerosis.
Clearly, exorbitant interleukin levels are not psychosomatic -- they're related to four serious diseases which are recognized as "real diseases". But interleukin is not one of the things that is normally tested for in first-round blood tests.
And I can tell you from experience, when I had a blood test result that was more than five times normal, the doctor wanted to dismiss it as lab error until the re-test came in at six times normal. So, if you could persuade the doctor to order the test and the IL-2 level comes back as ten times normal or fifty times normal, you'll probably have the doctor making any excuse possible to not believe the result. In a medical culture where we've gotten away from diagnosing on the patient's description of symptoms and moved to diagnosing by blood test, even blood tests are not always believed when they are as far out of whack as they will be for someone who is seriously ill with CFS. Any possible excuse must be used to discredit the patient when the doctor doesn't want to see proof that the patient is truly ill.
And apparently Jones (and his colleagues at CDC) are in the camp of choosing to discredit both the patient and the blood test, when the blood test doesn't show what they expect to see.
Remember, this information about interleukin levels in CFS has been known for twenty years, and still hasn't penetrated Jones' closed mind as evidence of physical illness.
* * *
I wonder is a source of Jim Jones' lack of focus on finding the
ongoing physical disease process related to the fact that he thinks
GET (and CBT to do encourage people to do GET) and things like sleep
hygiene is all we need.
I could well imagine Prof. White going on and on about the successes
he supposedly has. I hope something can be done to stop the
influence of CBT/GET-pushers. Otherwise looks like the CDC is going
to waste millions each year. :-(
If a medical researcher thought we had an incurable disease, I'd think they would likely be more focused than Jim Jones.
Friday, January 11, 2008
This just came in from Steven in CA.
I am thinking this season about those with
Myalgic Encephalomyelitis/CFS whose lives were cut short
by a serious disease while governments & society continue
to turn a deaf ear regarding the suffering. After the poem
written as a Tribute to the Fallen, I made 4 short
talking points that relate to this subject.
Poem tribute to honor the Fallen:
this relentless river of disease
presses on and spills over the levees---
the lives of young and old vanish
and yet remain disregarded
when voices are lifted up,
they are muffled under the dark watercourse--
proof obscured from public notice,
covering over any trace---
no time to examine such trivial matters,
while the stricken
have no strength
to protest as they disappear in the dim waters,
yet the small branches tremble
with the song of the winter wren
trailing paths of light---
always remembered, certain of the unveiling
1. The Truth
Largely forgotten & marginalized by society even though
M. E./CFS is a serious life-threatening disease.
Proof of serious disease was evidenced in autopsies/
complications of 3 young people in their 20s with the disease:
Casey Fero (age 23)
On July 4, 2005, at the age of 23, Casey Fero died in his sleep.
In September, a Madison forensic pathologist determined that Casey
had Myocarditis, that is, viral infection of the heart muscle. In
addition, he had fibrosis which is scar tissue from past infections. Some medical
researchers suggest that there is a link between cardiac problems and
chronic fatigue syndrome (CFS).
Casey was diagnosed with CFS at age 9 and again at age
15. It caused him to feel weak, unable to think, and exhausted.
He was plagued with headaches, and had major sleep disorder
among a list of daily symptoms. Casey persevered and did not
want people to know his condition.
Early on, he knew that medical help was unavailable and furthermore,
he was met with disbelief in the school and in the doctor’s office.
As a lasting tribute to Casey, the Fero family, the Wisconsin
Chronic Fatigue Syndrome Association, Inc., and Mothers
against Myalgic Encephalomyelitis, Inc. (MAME)created
the first universal access blood and tissue bank for ME-CFS
Sophia Mirza (age 32)
The Inquest into the Death of Sophia Mirza
13th June 2006, the inquest into the death of Sophia Mirza was
held in Brighton Coroners Court, England.
The cause of death was stated as
'acute renal failure as a result of CFS'
Two pathologists could not agree which name to use -
CFS, ME or ME/CFS.
In the end it was stated that CFS is a modern word for ME.
This is why CFS was used on the death certificate.
The pathologist also said -
'ME describes inflammation of the spinal chord and muscles.
My work supports the inflammation theory. There was
inflammation in the basal root ganglia.'
Alison Hunter (age 19)
died in 1996 from complications
arising from ME/CFS which included seizures, paralysis,
gastrointestinal paresis and overwhelming infection resembling
Alison courageously fought ME/CFS for ten years
and was an unstinting advocate for young people.
Alison was the founding president of ME Young Adults (MEYA),
established in 1992 at Royal North Shore Hospital, Sydney.
(The Alison Hunter Memorial Foundation is a non-profit institution.
The Foundation works independently in a spirit of support and
cooperation with all researchers, institutions and ME/CFS societies
to advance scientific knowledge and medical care.)
Some of those with severe M. E. are mentioned in "Personal Stories"
in the M. E. Society website: http://www.cfids-cab.org/MESA/personal.html
and also at this The Invest in M. E. website:
Some of those who have died prematurely are remembered
in the "In Memoriam" section of the Forum published by the
National CFIDS Association or this part of their website:
MyalgicEncephalomyelitis is a disease causing pathology
to the brain and multiple organs and systems, and classified
as a disease of the nervous system by the World Health Organization.
(Recognized since 1969 within the section of neurologic diseases that
includes such diseases as encephalitis, meningitis, polioencephalitis,
multiple sclerosis, motor neurone, poliomyelitis, Parkinsons,
muscular dystrophy, cerebrovascular disease, demyelinating diseases,
Paraneoplastic encephalopathy, Toxic encephalopathy,
diseases often caused by viruses, bacteria or toxins).
M.E. is a serious disease of Central Nervous System, even though
largely unknown by the public or medical practitioners.
Dr. Melvin Ramsay's definition is the clearest for Myalgic
Encephalomyelitis and those diagnosed with CFS who have this disease:
The criteria in Dr. Ramsay's definition have been borne out in
later studies and are many times more solid than the CDC's criteria.
Dr. Ramsay criteria include:
Dr. Melvin Ramsay, 1986 definition:
A syndrome initiated by a virus infection, commonly in the
form of a respiratory or gastrointestinal illness with significant
headache, malaise and dizziness sometimes accompanied by
lymphadenopathy or rash. Insidious or more dramatic onsets
following neurological, cardiac or endocrine disability are also
Characteristic features include:-
(1) A multisystem disease, primarily neurological with variable
involvement of liver, cardiac and skeletal muscle, lymphoid and
(2) Neurological disturbance - an unpredictable state of central
nervous system exhaustion following mental or physical exertion
which may be delayed and require several days for recovery; an
unique neuro-endocrine profile which differs from depression in
that the hypothalamic/pituitary/adrenal response to stress is deficient;
dysfunction of the autonomic and sensory nervous systems;
(3) Musculo-skeletal dysfunction in a proportion of patients
(related to sensory disturbance or to the late metabolic and
auto immune effects of infection)
(4) A characteristically chronic relapsing course
Dr. Byron Hyde also has a clear description:
Dr. Byron Hyde, a Canadian specialist in Myalgic Encephalomyelitis
offers this 2004 definition of Myalgic Encephalomyelitis: "Myalgic
Encephalomyelitis is a measurable, diffuse post-encephalitic illness.
The illness is characterized by (1) its acute onset, (2) the diffuse,
non-focal persisting nature of the encephalopathy, and (3) the
chronicity of the resulting symptoms. These symptoms consist
of the rapid exhaustion or loss of stamina of motor, sensory,
intellectual, and cognitive abilities. M.E. is of infectious/autoimmune
origin and less commonly, a toxic/autoimmune origin.
M.E. occurs in epidemics and sporadic cases."
Myalgic Encephalomyelitis starts with an inflammation of the
brain that occurs rather suddenly. This initial inflammation
usually results from an infectious/autoimmune process, but
it can also be caused by a toxic/autoimmune process. This
sudden, short-term inflammation is followed by a disorder
of the brain that continues over time. This chronic disorder of the
brain is not localized to a small part of the brain, but is spread out
over large regions of the brain, and it leads to chronic symptoms
that can involve essentially all the normal functions of the brain.
The primary injury in Myalgic Encephalomyelitis is the diffuse CNS
encephalopathy, the illness may cause or be associated with measurable
dysfunction in end organs and various body systems. The most
commonly injured end organs and systems are (1) the thyroid gland,
(2) the cardiovascular system and (3) the immune system. The CNS
dysfunctions are caused by widespread, measurable, diffuse
micro-vasculitis affecting normal cell operation and maintenance.
"The evidence would suggest that Myalgic Encephalomyelitis is
if caused primarily by a diverse group of viral infections that have
neurotropic characteristics and that appear to exert their influence
primarily on the CNS arterial bed."
2. The Strategy of Ongoing Coverup
CDC has stood intransigent in their desire to muddy the waters
with their CFS construct in 1988 denying epidemic outbreaks
of M. E. (see Osler's Web, by Hillary Johnson). The revised CDC
mantra includes CFS as "illness behavior" rather than a legitimate
disease. This prepares the ground for the ICD 10 coding for CFS
to be placed in the R53 category psychosomatic conditions.
Therefore, the strategy is 1. To ignore M. E.; 2. Make CFS
a problem of false perception of illness; 3. ICD code that falls
in line with the revised CDC mantra. Thus, further bury epidemic
outbreaks of M. E. in the US under faulty epidemiology work in 1980s
by a group of scientists that did not listen to the voices of Dr. Hyde
and others pointing to the clear markers of Myalgic Encephalomyelitis.
---Dr. Reeves' argument that we cannot return to the name &
criteria for M. E. because there have been numerous
scientific articles using CFS is a specious argument because CFS
was constructed on a false foundation and needs to return to the
original coding given the disease in 1969 by the World Health Org.
and solid diagnostic criteria available from Dr. Melvin Ramsay,
pioneer M. D. & researcher, as well as Dr. Byron Hyde,
recent researcher & M.D.
---Recently, Dr. William Reeves has written his wrongheaded
2005 empirical definition, which is carefully reviewed
by Dr. Leonard Jason because it inflated
prevalence rates: http://iacfs.net/p/1,544.html
One paragraph from the Dr. Jason study:
"Reeves et al. (2005) claims that the empirical definition identifies
people with CFS in a more precise manner than can occur in the more
traditional way. It is primarily the use of this new empirical case
definition that has lead to the increase in CFS prevalence rates in the
United States. In their use of the empirical case definition, several
changes occurred to what had been previously recommended by
an international expert committee (Reeves et al., 2003) of
for the case definition of Fukuda et al. (1994). First, rather than
excluding those with depressive disorder with melancholic features,
only those with a current condition were excluded as opposed to what
had been recommended. Of interest, of those 16 within the Reyes et al.
(2003) study who had been classified with CFS using the more
traditional methods, 6 had a past history of major depressive
disorder with melancholic features (Reeves et al., 2005); and it is
unclear how many of those 43 who were diagnosed using the empiric
case definition had past depressive disorder with melancholic features.
These individuals should have been excluded, and by including them,
the broadening of the case definition has the potential to bring into
the CFS category those with a primary psychiatric condition. More
importantly, there was little agreement between the empirical method
of classifying individuals with the more traditional method of comparing
whether an individual met the case definition on their critical
Rather than assuming that this might be a problem with the CFS
empirical case definition, they concluded that the more traditional
way of diagnosing patients was flawed. As an example of this
problem, one individual who was classified as being in remission for
CFS using the traditional method was diagnosed with current CFS
using the CDC’s empirical approach."
3. The Underbelly of Purpose for the Cover-up
Obviously, the desire from the economic point of view
is to keep people off of the disability programs & to direct patients
toward the psychotropic pharmacological solutions of Big Pharma.
"The numbers game in CFS and why there is no meaningful research
for treatment or cure" August 2007
4. The Response to the Injustice & Quagmire
M. E./CFS has not been able to get public square advocacy
that Multiple Sclerosis was able to garner where they were able to
change the name from Fakers Disease or Hysterics Paralysis
back to Multiple Sclerosis, the original name,
documented by the famous French neurologist
Jean-Martin Charcot in the 1860's. And then later in 1950,
through pressure by the MS Society on Congress,
they were able to get MS classified in the
area of Neurological Disorders in the NIH.
In the book, Courage: The Story of the Mighty Effort to End
that Devastating Effects of Multiple Sclerosis, which chronicles
the story of Sylvia Lawry, whose brother was an MS victim
and who built in the National Multiple Sclerosis Society
& who made it her lifetime mission to end
the suffering of people with MS. In the 1940s, when Sylvia
was looking for an answer, many patients were told they
were overworked or run down and simply needed to
make changes in their way of life.
Others were advised that the illness was psychosomatic
and that they should consult a psychiatrist.
The four main types of MS are defined based on the way the disease
progresses in an individual patient:
RRMS (Relapsing-Remitting MS), PPMS (Primary-Progressive MS),
PRMS (Progressive-Relapsing MS), SPMS (Secondary-Progressive MS)
MS is a highly individual disease, and it can be difficult to determine
which category a patient falls into. In addition to differences in
patterns of disease progression, different patients may experience
entirely different types of symptoms.
Exhaustion is a common symptom of MS, as it is for M. E.,
but it is an exhaustion originating in CNS dysfunction.
The Congressional Action which mentions this commonality with MS
is available at: http://www.co-cure.org/Congressional_Action07.htm
The fallen continue to drown and disappear in the dark river.
The unjust situations at CDC & NIH continue to dominate the landscape
and it seems continue to grow towards a psychosocial model for the
disease called CFS, piling up study after study to build their case
(e.g.Altered self in CFS, Psychoneuroendocrinology, Dr. James Jones
The model of a very similar disease, Multiple Sclerosis, shows a time
of public denigration and later a time of public vindication.
It's time for vindication of the clearly defined disease, Myalgic
Encephalomyelitis, which was given the name CFS as a diversion tactic. It's time to turn back to the truth about this disease.
We have the example of Norway's persistent work for the
recognition of M. E. (the Norwegian ME Association),
Also, we have champions such as Dr. Hooper & others in UK
& Dr. Jason and others in US. Other good work is being taken up
as mentioned above by the Wisconsin group in addition to PANDORA,
the Florida group helped by Marly Silverman http://pandoranet.info/
and the work in Nevada for the Whittmore Peterson Center. The
Vermont support group has also been active:
Dr. Kenneth Friedman has made useful suggestions
on better research methods by NIH incorporating
WHO or European Union methods:
The World Health Organization’s TDRP
(http://www.who.int/tdr/about/strategy/default.htm , contains
procedures more appropriate for waging a war on illness than the
procedures employed by the NIH.
The European Union’s method of funding research
their Framework Program (FP), utilizes procedures and
policies which would appear to stimulate CFS research more
than the methods used in the United States. The FP supports
Centers of Excellence whose purpose is to provide instruments
and resources, and coordination of research programs. The FP
also encourages “mobile” research scientists.
Whether greater visibility of CFS through
the CFIDS Association's alliance with the CDC is useful or not
becomes suspect because of recent inflated prevalence rates
as mentioned above which has been shown to favor a
psychosocial model by Dr. Reeves' 2005 empirical definition
which fails to exclude depressive disorder according the study
by Dr. Jason.
Another avenue of change is prayer for breaking down the
cover-up at CDC, the psychosocial model of the disease
and the resistance to the truth about Myalgic
For example, the World M. E. & FM Prayer & Meditation
Day occurs the first Monday of every month between 12 noon-12:30 p.m.
in whichever time zone you are in. It's a special time for people to
unite with the intention to focus on the well-being of those with M. E. and/
or FM. It is organized by Suzanne Olivante of Eastbourne, England--
* e-mail *email@example.com
* or visit the blog at http://time2link.livejournal.com
where details about the event/a basic guide to linking-in can be found
in the PROFILE and also links to useful websites.
* There is also a new community site called *ourtime2link*, which you
can access directly from the blog or go to
The fallen are drowning in the dark river and considered to be psychologically unstable and to blame for their own disease under the shadow of many studies coming from Dr. Reeves & the CDC
& recent American studies. The fall of normally healthy individuals after a serious infection-type onset is ignored or relegated to altered self perception, turning a serious disease into a somatic illness.
Steven Du Pre
Website for National Alliance for Myalgic Encephalomyelitis:
Date: January 10, 2008
Author: Lisah Henry
Friend to chronically fatigued patients
For once it is the doctor and not her patients feeling overwhelmed. That was
the reaction Dr Rosamund Vallings, who was appointed a Member of the New
Zealand Order of Merit (MNZM) for services to people with chronic fatigue
'It has been a little overwhelming,' the Clevedon resident told the Times
between patients at her Ridge Rd practice. She is New Zealand's leading
specialist on chronic fatigue syndrome; an interest peaked back in the early
1960s while working in her native-England.
'I was working in a hospital in London and we saw it quite a bit among the
staff at another nearby hospital - who became chronically ill. 'It became
known as Royal Free disease, in reference to the hospital where these people
In 1966 came to New Zealand and set up her general practice in Bucklands Beach
before setting up in Howick several years later. In 1973 she was a
co-researcher into the condition also known as Myalgic Encephalopathy (ME) at
the Department of Rheumatology at the University of Auckland.
'During and after the research I kept in touch with some of the participants
as their doctor. I also established an education and support group where
people could go to learn more about their condition and how to manage it.'
CFS, ME or Tapanui Flu - are all common names for the condition and Dr
Vallings says it is a lot more common that people think.
'It's thankfully a lot more recognised today too, among the general public,
but more importantly among the medical community.'
Dr Vallings can take a fair share of the credit for that greater recognition,
as she travels extensively attending conferences, giving lectures,
participating in research, and producing comprehensive information for
patients and doctors.
'I recently had an article published in NZ Doctor and write and maintain the
management guidelines for doctors.'
She has published and presented papers at many international conferences and
was elected to the editorial board of the US Journal of Chronic Fatigue
Syndrome in 2001. Dr Vallings says CFS is a real medical condition that can strike at the most healthiest of people.
'You often find very busy people or very sporty people who have had a virus of some sort and then not had time to recover properly can be susceptible the condition. We're not talking about being a little tired. This condition, as the name suggests, is chronic and can be life altering to those with it and
ongoing for years.'
As the only GP few specialising in the area, she is in constant demand with
patients from throughout New Zealand and even some overseas. She has been
medical advisor to the Associated New Zealand Myalgic Encephalopathy Society
(ANZMES) since 1980 and was president for seven years.
In hearing of the honour, Whatakane ME sufferer Steve Napier said: 'Dr
Valling's very sound and practical advice allow me to continue working through
my illness. Without her help I would have had to close my business down.'
(c) 2008 New Zealand Times
The British Psychological Society has criticised the recommendations outlined in NICE guidelines for Chronic Fatigue Syndrome (CFS), ahead of judicial review.
The Society feels that the three therapies recommended by NICE in its guidelines (published in August 2007) do not recognise the multifaceted nature of CFS and the different ways in which individuals respond to this illness.
The Society is reiterating its comments in light of a judicial review which is expected to be submitted to court on Thursday 22 November by the One Click Health Advocacy Pressure Group. Although the Society has had no contact with this group, and is no way aligned to it, the Society has independently submitted its own concerns about the guidelines and feels they should be revisited.
Dr Ellen Goudsmit, who helped draft the Society’s response, said: "NICE has offered three treatments in its guidelines that limit psychologists to a comparatively inflexible regime which we feel is not appropriate for many patients with CFS.
"We believe psychologists have more to offer people with CFS and are disappointed that NICE rejected the alternative treatments we suggested, despite the fact that they were based on sound scientific evidence, including randomized controlled trials."
The Society wrote to NICE in August 2007 to voice concerns over:
- activity management, a way for people to manage their symptoms by learning to analyse and plan activities so that they can achieve more at home, at work and at leisure.
- graded exercise therapy (GET), which plans increases in activity or exercise, working towards goals that are important for the person with CFS/ME.
- The model of cognitive behavioural therapy (CBT) being recommended.
Dr Martin Crawshaw, Chair of the Society’s Professional Practice Board, added: "Activity management is untested and there is no advice for those who cannot increase activity levels, while advocating CBT and GET limits a flexible approach. In some cases all some patients need is a brief period of counselling, support and information about a practice called pacing - the aim of which is to balance rest and activity to avoid making fatigue and other symptoms worse.
"If psychology is to take over the majority of the work regarding the management of CFS patients then we need to be able to use our judgement."
* * *
For the British Psychological Society to say that psychology is not the cure for CFS is a step in the right direction. It's a sign that not all psychologists side with Straus/Wessely/Reeves in their quest to wipe out all reference to the initial virus reported by patients and (using the similarity in names between CFS, chronic fatigue, and Fatigue Syndrome to advantage) to convince people that this is purely a psychological problem.
In fact, many CFS patients report that years and years of psychotherapy did not help them at all. Repeated research has confirmed that anti-depressants are useless. Yet, there is still the misguided quest to classify CFS as a psychological, not neurological, condition, which benefits the pocketbooks of psychiatrists who provide those decades of useless therapy, but does nothing to help the patient: talking about it will not cure a virus.
Thursday, January 10, 2008
MaryS, God bless her, makes an attempt to attend every CFS Advisory Committee in DC and to speak for those of us who live too far away and can't be there.
Read her testimonies (plural) at http://www.cfids-me.org/marys/
"What can you do? Write, FAX, telephone, and/or email your Congressional representatives and NIH secretary Donna Shalala to request that the meeting be postponed until a true state of the science, balanced, collection of experts from all fields of medical expertise can participate. Call family and friends and ask that they do the same. Write CNN, ABC, NBC, CBS, FOX; your local media outlets; popular columnists; Oprah Winfrey. Washington-area PWC's should write to the Washington Post requesting a good investigative reporter be assigned to find out why Stephen Straus has been permitted to exercise such control over government spending on this disease, given his clear bias toward psychological causation (hypochondria) and overt disdain for the research of others. Ask why NIH has been permitted to completely ignore the research experts appointed to the Congressionally-chartered CFSCC. Ask whether our representative government has finally been replaced by a government of barricaded autocratic bureaucrats. And if you live outside the United States, ask your nation's government to lodge a formal protest against this travesty of justice."
Some of those suggestions are outdated (e.g., Straus died a few months ago), but writing letters to media is always a good idea. You can quote Mary on this "The bulk of published peer reviewed research on CFS today occurs not in psychiatry, but in the fields of neurology, cardiology, immunology, endocrinology, and biochemistry - as a quick search of Medline will confirm."
There's also the question, deserving of an investigative reporter, of why, after a government audit required reimbursing the CFS research budget millions of dollars, CFS research money was again misused. (Pat Fero keeps track of where our research money is going.)
Please send your responses directly to Margaret Baird at uncmom59@AOL.COM
I have been asked by Congressman Howard Coble's office to send a paper outlining all of our and other medical condiditons impacted adversely by the Energy Act's incandescent light ban as of 2012. They are going to send it to the Energy Committee. They requested my paper contain input from the disability community. This includes persons with photosensitive epilepsy, ADHD, autism spectrum disorders, lupus, migraines as well as the CFIDS/MCS related complex partial non-clonic seizures I have after about 4-5 minutes in the lighting.
Journal articles, physician comments, website URLs, patient and support group names and experiences would all be helpful to making our case. Whatever you can do would be helpful.
Margaret Holt Baird
* * *
The CFL manufacturers are claiming that they have fixed all the problems, and patients say they haven't. So, be sure to specify if you've used the newer CFLs so the manufacturers won't try to argue that you're discussing problems that have been corrected.
As noted above, please send your comments to Margaret -- leaving them only as comments to this blog won't get them to her.
You needn't write pages and pages, even a single sentence that "After a few minutes under CFLs, I get [list symptoms]" will suffice.
If you know of research studies, doctor comments, etc., please send them along to Margaret.
My take on the situation is that I'm all for conserving energy, but I will not save a few bucks on electricity at the cost of my health. Force me to use CFLs at home and I won't be able to work even the few hours I work now.
Exercise in warm water decreases pain and improves cognitive function
in middle-aged women with fibromyalgia.
Clin Exp Rheumatol. 2007 Nov-Dec;25(6):823-30.
Munguía-Izquierdo D, Legaz-Arrese A.
Section of Physical Education and Sports, University Pablo de Olavide, Seville.
OBJECTIVES: To compare the cognitive function performance in patients
with fibromyalgia (FM) with respect healthy controls and to evaluate
the short-term efficacy of exercise therapy in a warm, chest-high
pool on pain and cognitive function in women with FM.
METHODS: Sixty middle-aged women with FM were randomly assigned to
either an exercise training group (n = 35) to perform 3 sessions per
week of aquatic training (32 degrees C) including mobility, aerobic,
strengthening, and relaxation exercises for 16 weeks, or a control
group (n = 25). Twenty-five healthy women matched for age, weight,
body mass index, and educational and physical activity levels were
recruited. Pain was assessed in patients using a syringe calibrated
like a pressure dolorimeter, and a visual analog scale. The severity
of FM was evaluated using the Fibromyalgia Impact Questionnaire.
Cognitive function was measured in healthy individuals and patients
using several standardized neuropsychological tests. All patients
were measured at baseline and post-treatment.
RESULTS: At baseline, the healthy group evidenced cognitive
performance that was significantly superior to the group of patients
with FM in all of the neuropsychological tests. The exercise group
significantly improved their pain threshold, tender point count,
self-reported pain, severity of FM, and cognitive function, while in
the control group the differences were not significant.
CONCLUSION: An exercise therapy three times per week for 16 weeks in
a warm-water pool is an adequate treatment to decrease the pain and
severity of FM well as to improve cognitive function in previously
unfit women with FM and heightened painful symptomatology.
Effects of yoga and the addition of tui na in patients with fibromyalgia.
J Altern Complement Med. 2007 Dec;13(10):1107-14.
da Silva GD, Lorenzi-Filho G, Lage LV.
Pulmonary Division, Faculty of Medicine, University of São Paulo, São
NLM Citation: PMID: 18166122
Objectives: This study aimed to verify whether techniques of yoga
with and without the addition of Tui Na might improve pain and the
negative impact of fibromyalgia (FMS) on patients' daily life.
Design: Forty (40) FMS women were randomized into two groups,
Relaxing Yoga (RY) and Relaxing Yoga plus Touch (RYT), for eight
weekly sessions of stretching, breathing, and relaxing yogic
techniques. RYT patients were further submitted to manipulative
techniques of Tui Na.
Outcome measure: Outcome measures comprised the Fibromyalgia Impact
Questionnaire (FIQ), pain threshold at the 18 FMS tender points, and
a verbal graduation of pain assessed before treatment and on the
followup. The visual analog scale (VAS) for pain was assessed before
and after each session and on the follow-up.
Results: Seventeen (17) RYT and 16 RY patients completed the study.
Both RY and RYT groups showed improvement in the FIQ and VAS scores,
which decreased on all sessions. The RYT group showed lower VAS and
verbal scores for pain on the eighth session, but this difference was
not maintained on the follow-up. Conversely, RY VAS and verbal scores
were significantly lower just on the follow-up.
Conclusions: These study results showed that yogic techniques are
valid therapeutic methods for FMS. Touch addition yielded greater
improvement during the treatment. Over time, however, RY patients
reported less pain than RYT. These results suggest that a passive
therapy may possibly decrease control over FMS symptoms.
Wednesday, January 9, 2008
"Mrs. Muñoz-Furlong said that she and doctors on her medical board do not believe that genetically modified foods cause food allergies because most children with allergies react to specific foods, like eggs or milk."
Personally, I react to two specific foods, and it does not matter whether homegrown, storebought, or organically grown and guaranteed not to be genetically modified. This started before genetically modified food was commonplace. I used to have a mild reaction but post-CFS it's gotten more severe (not into the life-threatening category ... yet).
However, anyone who thinks they may have CFS should be aware that some food allergies can cause fatigue. I know of several people diagnosed with CFS who actually had celiac disease -- when they eliminated wheat/gluten from their diets, they were instantly "cured".
Although some of the information in the 1988 Stoff/Pellegrino CFS book is outdated, I still recommend getting a copy of it (Amazon has several listings for hardback and paperback versions; currently, the most copies are available at http://www.amazon.com/Chronic-Fatigue-Syndrome-Jesse-Stoff/dp/0394569563/ref=sr_1_5?ie=UTF8&s=books&qid=1199877832&sr=1-5 )
That book has several versions of elimination diets that can help you determine whether what you're eating makes you worse (or, like the people with celiac disease misdiagnosed as CFS, whether what you're eating is actually the cause of all your problems).
I am fortunate to live in California where fresh produce is available year-round; I don't have to rely on processed food full of chemicals in winter. After trying each of the elimination diets in the book, I concluded that my only food allergies were the ones I already knew about, and that what I ate did not drastically affect my health (except when I went vegetarian and didn't get enough protein because I'm allergic to soy; a nice steak helps me immensely!).
But, if you have been misdiagnosed with CFS when you actually have a food allergy, an elimination diet will help you identify the real problem and save you a lot of misery.
10 foods are responsible for over 90% of food allergies. Eliminate all 10 from your diet for a couple weeks, add them back one at a time, one every few days, and see if you have a reaction when you add one back. If the foods that make you react are corn, soy and/or wheat, you'll have to become very diligent about reading food labels, because one or the other seems to be in just about every processed food. High fructose corn syrup is in your can of soda, so for the time you are on the elimination diet, you're best off to drink only bottled water and herb tea.
The top ten are milk (dairy of all sorts including yogurt, cheese and butter), eggs, nuts, soy, wheat, fish/shellfish, onions, corn, yeast, and citrus (some sources also include tomatoes and white potatoes). MSG is also a common allergen, so if you eat a lot of Chinese food, you'll want to stay away from that for a couple weeks to see if that helps.
Tags: CFS, fatigue, celiac disease, food allergy, soy, wheat, gluten, genetically modified food, corn, dairy, milk, peanuts, protein, processed food
Tuesday, January 8, 2008
Journal: Curr Rheumatol Rep. 2007 Dec;9(6):482-7.
Authors: Klimas NG, Koneru AO.
Affiliation: University of Miami Miller School of Medicine, 1201 NW
16th Street, VA Medical Center, 200 BMRC, 6th Floor, Miami, FL 33125,
NLM Citation: PMID: 18177602
Investigations into the underlying cause of chronic fatigue syndrome
have advanced the field considerably in the past year. Gene
microarray data have led to a better understanding of pathogenesis.
Recent research has evaluated genetic signatures, described biologic
subgroups, and suggested potential targeted treatments.
Acute viral infection studies found that initial infection severity was the single best predictor of persistent fatigue. Genomic studies
showed that persistent cases express Epstein Barr virus-specific
genes and demonstrate abnormalities of mitochondrial function.
Studies of immune dysfunction extended observations of natural killer cytotoxic cell dysfunction of the cytotoxic T cell through quantitative evaluation of intracellular perforins and granzymes.
Other research has focused on a subgroup of patients with reactivated viral infection.
These advances should result in targeted therapies that impact immune function, hypothalamic-pituitary-adrenal axis regulation, and persistent viral reactivation.
[Look back through the archives for the original information received from One Click, or go to their website.]
One Click is challenging the NICE Guidelines for treating CFS in Britain's High Court.
Monday, January 7, 2008
*William Carter et al., "Chronic Enterovirus Infection in Patients with Postviral Fatigue Syndrome," Lancet 1 (8578) (Jan. 23, 1988): 146-50
Not for the first time [1-2], a CDC-funded research team produces a paper on
CFS which has a title which mentions a lack of an association with a
It would be good if some of the CDC's (not inconsiderable) CFS research
budget could be used to investigate enteroviruses in CFS. Earlier this year
a study involving enteroviruses resulted in much excitement in the media
on the subject. It found, in a sample of CFS patients who had
gastrointestinal symptoms, that 135/165 (82%) biopsies stained positive for
VP1 within parietal cells, whereas 7/34 (20%) of the controls stained
positive (p=<0.001). Earlier studies have demonstrated circulating antigen
of enterovirus, raised antibody titres and viral RNA in the blood and muscle
biopsy specimens of patients with CFS[4-8]. John Chia does recognize that
other infections could be playing a part in some CFS cases but enteroviruses
are by far the most common infection he is finding in his clinic in
 Gelman JH, Unger ER, Mawle AC, Nisenbaum R, Reeves WC: Chronic fatigue
syndrome is not associated with expression of endogenous retroviral p15E.
Molec Diagnosis 2000, 5:155-156.
 Vernon SD, Shukla S, Reeves WC: Absence of Mycoplasma species DNA in
chronic fatigue syndrome. J Med Microbiol 2003, 52:1027-1028.
 Jones JF, Kulkarni PS, Butera ST, Reeves WC: GB virus-C--a virus without
a disease: we cannot give it chronic fatigue syndrome. Jones JF, Kulkarni
PS, Butera ST, Reeves WC. BMC Infect Dis 2005, 5:78
 Yousef GE, Mann GF, Smith DF, et al: Chronic enterovirus infection in
patients with postviral fatigue syndrome. Lancet 1988;1:146-7.
 Cunningham L, Bowles NE, Lane RJM, et al: Persistence of enteroviral RNA
in chronic fatigue syndrome is associated with abnormal production of equal
amounts of positive and negative strands of enteroviral RNA. J Gen Virol
 Galbraith DN, Nairn C, Clements GB: Phylogenetic analysis of short
enteroviral sequences from patients with chronic fatigue syndrome. J Gen
 Lane RJ, Soteriou BA, Zhang H, et al: Enterovirus related metabolic
myopathy: a postviral fatigue syndrome. J Neurol Neurosurg Psychiatry
 Douche-Aourik F, Berlier W, Fe´asson L, et al: Detection of enterovirus
to human skeletal muscle from patients with chronic inflammatory muscle
disease or fibromyalgia and healthy subjects. J Med Virol 2003;71:540-7.
 Chia JK, Chia A: Diverse etiologies for the chronic fatigue syndrome.
Clin Infect Dis 2003;36:671-2.
Assistant Chairperson, Irish ME/CFS Association - for Information, Support &
Research (Unpaid position)
[I don't like the way the CDC have been using such "outspoken" titles to
their research papers so sent this in to "GB virus-C – a virus without a
disease: We cannot give it chronic fatigue syndrome". There could of course
be disadvantages to them looking at enteroviruses if they didn't do it
properly and claimed there was none there. Of course if they were to use the
"empirical" definition which covers 2.54% of adults aged 18 to 59, they're
not going to find much of anything. :-( But I don't like them giving the
impression that there's no evidence out there for infections playing a part
in at least some cases. Tom]
* * *
My CFS started with an enterovirus (stomach virus), i.e., repeated bathroom visits.
Laura Hillenbrand's started with what was diagnosed as "food poisoning", which looks a lot like a stomach virus.
Dr. Bruno thinks CFS is an enterovirus. He notes that there are six dozen known enteroviruses related to polio, but the polio vaccine protects against only three of them.
As Tom notes, there has already been some research that has found enteroviruses in many people with CFS. But where's the follow-up research?
Unless, as has been suggested before by CFS researchers, "CDC doesn't want to find anything." Finding an as-yet-unknown virus in CFS would require them to admit their previous statements about it being caused by "depression" and "stress" and general emotional-basket-case-ery were wrong. It's been pointed out by several activists that the CDC website's information on CFS says "these tests are unnecessary" ... "these tests" being the ones that are known to produce abnormal results in patients with CFS. Clearly, they not only don't want to find anything themselves, they don't want anyone else to find proof that CFSpatients are really, biologically sick.
Which brings us back to the original reason for changing the name Myalgic Encephalomyelitis to CFS:
Based on documents received via a FOIA request, "Hillary J. Johnson, author of Osler's Web, commented that the name "Chronic Fatigue Syndrome" was selected "by a small group of politically motivated and/or poorly informed scientists and doctors who were vastly more concerned about costs to insurance companies and the Social Security Administration than about public health. Their deliberate intention – based on the correspondence they exchanged over a period of months – was to obfuscate the nature of the disease by placing it in the realm of the psychiatric rather than the organic."
Most moderate-to-severe CFS patients have been denied Disability benefits. (40% of CFS patients studied by a Chicago group were completely disabled by the disease. Nearly all of these said they had been denied Social Security benefits.) If half a million or more people were to get those tests, objective proof that they are not faking, and re-apply for SSDI with the new evidence, the cost to the system would be immense. (At this writing, they owe me $100,000 in back benefits if/when my claim is approved. Multiply that by hundreds of thousands of other patients, and the cost would be staggering. No wonder they don't want to pay benefits for decades to CFS patients! It isn't that we don't deserve benefits, but that paying 25-30-35 years of benefits to a million patients would cost a bundle.)