Saturday, February 28, 2009

Define "better"?

In the sense of "all better", back to where I was in 1987 before I got the virus, I'll probably never get to that point.  For one thing, because even healthy people my age can't do as much as they used to do 22 years ago.
 
But for a CFS patient coming out of relapse and heading for remission, it really is true "you're not getting older, you're getting better".

In 2001, a trip to the local farmers market sent me to bed for a full week.  I came home and couldn't even get the veggies as far as the fridge to put them away.  They rotted on the living room floor, where I'd first collapsed on the way in.
 
By 2006, I could generally go to the supermarket and put the cold stuff away before I collapsed, but then I'd be down the rest of the day.
 
Today, I still only got as far as putting the cold stuff away before I collapsed, but it only cost me 2 hours nap to feel like I could do something else today.  It's not going to be anything physical (like putting the canned goods away), but I am recharged enough to read some stuff for work.
 
If you'd asked me in December 2000, when my business partner counted 17 of 31 days that I said I couldn't do any work because of blinding headaches, I would have told you that going back to work full-time was impossible.  Never going to happen. 
 
The right combination of prescriptions, addressing what's really wrong (rather than treating "what the doctor knows how to fix", which isn't what I have), has gotten me to the point where "someday" returning to full-time work sounds realistic.  That point is still years away -- Dr. Murphree (www.DrRodger.com) told us that you need at least one year of recuperation for every year of deterioration -- and it's probably not going to be the active work I did as a paralegal, scurrying around downtown, lugging boxes of files and stacks of research books, up and down between my desk and the file cabinets 100 times a day.  But I do think I may be able to do full-time editing at home.
 
You have to look at the small steps and see how far you've come, rather than looking only at how far is left to go.  I may be normal retirement age by the time I get to that point, but I had never planned to retire at 65, anyway.  My father worked to age 80, and I'm sure I can do the same if doctors continue giving me the pills I know work, rather than things that have been proven useless.
 
 
 
 




 


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Another explanation of CFS

Can sustained arousal explain the Chronic Fatigue Syndrome?

Journal: Behav Brain Funct. 2009 Feb 23;5(1):10. [Epub ahead of print]

Authors: Wyller VB, Eriksen HR, Malterud K.

NLM Citation: PMID: 19236717


ABSTRACT:

We present an integrative model of disease mechanisms in the Chronic
Fatigue Syndrome (CFS), unifying empirical findings from different
research traditions. Based upon the Cognitive activation theory of
stress (CATS), we argue that new data on cardiovascular and
thermoregulatory regulation indicate a state of permanent arousal
responses - sustained arousal - in this condition. We suggest that
sustained arousal can originate from different precipitating factors
(infections, psychosocial challenges) interacting with predisposing
factors (genetic traits, personality) and learned expectancies
(classical and operant conditioning).

Furthermore, sustained arousal may explain documented alterations by
establishing vicious circles within immunology (Th2 (humoral) vs Th1
(cellular) predominance), endocrinology (attenuated HPA axis),
skeletal muscle function (attenuated cortical activation, increased
oxidative stress) and cognition (impaired memory and information processing).

Finally, we propose a causal link between sustained arousal and the
experience of fatigue. The model of sustained arousal embraces all
main findings concerning CFS disease mechanisms within one
theoretical framework.


[Note: This is an Open Access article, freely available at
http://www.behavioralandbrainfunctions.com/content/pdf/1744-9081-5-10.pdf  ]






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Friday, February 27, 2009

NIH Funding Increase

The NIH just got, courtesy of Arlen Spector, the greatest gift in its
history - a thirty percent increase in funding in one year. Eleanor Hanna,
the head (and sole employee!) of the ME/CFS research program there has for
years been saying that tight budgets are why funding levels for ME/CFS will
not increase. We'll soon get a chance to see if Dr. Hanna has been blowing
smoke all these years or not.
In Part I of NIH on the Clock - we take a look at the most important ME/CFS
research program on the planet.
http://aboutmecfs.org/blog/?p=6

--
Cort Johnson

Phoenix Rising  - An ME/CFS Website at Phoenix-cfs.org
 
 
 
 



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Thursday, February 26, 2009

Real Progress in CFS Research

Noted Scientist Reports Real Progress in ME/CFS Research

Reported February 23,2009

by Dan Moricoli for www.me-cfsCommunity.com and www.cfsknowledgeCenter.com

"A biomarker for ME/CFS may be less than two years away." According to Dr. Nancy Klimas one of the pre-eminent, research scientists in the world on ME/CFS (also known as chronic fatigue syndrome or myalgic encephalomyelitis).

"We are closing in on being able to identify the root causes of a disease which afflicts millions of people around the world. One that is poorly understood and treated by the medical community.  

Understand," she went on to say, the excitement rising in her voice, "that physicians practice, or at least strive to practice, evidence based medicine. The demands on a physician are so overwhelming that they are virtually forced to concentrate their efforts only on those medical conditions which can be clearly and objectively identified.

That is simply not yet the case with ME/CFS." She added with emphasis.

"Just think for a moment, what it would mean to the millions of sufferers of ME/CFS if any doctor could run a test which would clearly, indisputably identify the patient as having the disease, EVERYTHING CHANGES." Again, adding emphasis to her words as she spoke with great passion and concern.

"Drug companies will add untold millions in research in their rush to develop medicines to treat the disease. In short order, local physicians will finally be able to begin to identify, understand and treat their patients properly.. No longer will those afflicted be dismissed by the medical community and, all too often, by their own family and friends as having that 'yuppie thing'."

Dr. Klimas shifted in her chair and with the precision and determination of a research scientist in both her eyes and voice went on to say. "There are at least three, perhaps even seven, sub-groups of what we call ME/CFS that are currently under intense research focus. They may be thought of as three to seven different conditions with closely related symptoms. As we identify and conduct more focused research on each of the sub-groups even more bio-markers will be identified and treatments developed over time.

That we are on the brink of identifying biomarkers for at least a few of these subgroups is very exciting. Particularly if one considers all that will then come from what is now so close at hand" she added.

Dr. Klimas made these remarks to me in our conversation Friday, February 20th in her office at the University of Miami. I had asked to see Dr. Klimas to talk about current ME/CFS research initiatives so that I might update the patient community through the websites www.cfsKnowledgeCenter.com and www.me-cfsCommunity.com for which I write.

As an ME/CFS patient, and someone who, at least thinks of himself as being fairly active and somewhat knowledgeable in the ME/CFS community, I simply had no idea how close at hand treatment might prove to be for us. I was stunned.  Regaining my composure and with all the businesslike demeanor I could muster, I asked "What's next?"

"Money." She said simply.  "I would guess about $10 million over the next five years, maybe a little longer for clearly focused international research.  ME/CFS is world wide problem that afflicts at least 28,000,000 people, perhaps many more than that.

Japan and Spain both have great research underway in their very different national approaches to the disease. In the UK, Jonathan Kerr and others are also doing particularly noteworthy research.  Here in the United States, there is other fine work underway as well but we, too, have our own idiosyncrasies with respect to research funding and results evaluation.

The disease is so widespread, however, that while nationalized approaches are without question  valuable, a clearly focused international approach will clearly and dramatically speed up the process and the resulting benefits for those afflicted."

My meeting with Dr. Klimas, made it particularly clear, and deeply personal to me, why the newly introduced IACFS/ME Research Fund is so vitally important to those of us who suffer from this dreaded disease.

Interestingly, Dr.. Klimas who is the current president of the International Association for CFS/ME (IACFS/ME) did not mention the new fund once during the 90 minutes she spent with me. She was clearly not trying to "sell" me or anyone else on the fund. This was simply a deeply concerned and compassionate physician and research scientist speaking about that which she has devoted her life to.

If you are concerned about having a treatment for ME/CFS, let alone having access to a doctor who is willing to treat you, instead of dismissing your symptoms with a raise eyebrow, you owe it to yourself to add what you can to the IACFS/ME Research Fund. Whether it's $5 or $20 or $500 or more, please do it. Please do it now.

For more information about the IACFS/ME Research Fund
or to make a donation, click HERE.

For more information about their work, click on IACFS/ME. To join the IACFS/ME, click HERE.

The 9th International IACFS/ME Research and Clinical Conference is scheduled for March 12-15, 2009 at the Peppermill Resort in Reno, Nevada. A patient conference is included in the program in which patients will hear directly from such noted scientists as Nancy Klimas, M.D., Dan Peterson, M.D., Anthony L. Komaroff, M.D., Fred Friedberg, Ph.D., Leonard Jason, Ph.D., Hirohito Kuratsune, M.D., Kenneth Friedman, Ph.D. and Gudrun Lange, Ph.D.  For a complete agenda click HERE.

For more information about the ME-CFSCommunity website, click HERE.

For more information about www.cfsKnowledgeCenter.com, click HERE.

The Blog Section at the ME-CFSCommunity website will have much more to say about Dr. Klimas as well as other experts and research scientists on ME/CFS in the coming weeks.





 


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White House Disability Contact

Kareem Dale - Special Assistant for Disability Policy to President Obama is
looking for any person with a disability who has gone back to work or been
rehired as a result of the economic recovery plan. For example, some company
starts hiring again as a result of money they are going to receive. He has
asked that we disseminate his request to our various communities. He said this
is important and time sensitive and will assist him in facilitating full
inclusion of disability.

Please forward and respond to Kareem Dale directly.

Kareem Dale kareemdale@sbcglobal.net  


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Wednesday, February 25, 2009

Feb 2009 Hummingbird's Guide Newsletter

Hello and welcome to the 'A Hummingbirds Guide to Myalgic Encephalomyelitis' e-newsletter for February 2009

I hope this newsletter finds you and yours doing as well as possible.

I have a few new things to tell you about this month.

-----

A new paper is available: M.E. vs MS: Similarities and differences

I am so excited that this important paper is finally completed.
 
It includes two charts, one comparing the substantial similarities between
M.E. and MS medically, and the other the vast differences between how they
are treated socially and politically.

Introduction:

"M.E. and MS are very similar diseases medically in many ways. However, for
reasons that have nothing to do with science, the two diseases are treated
very differently politically and socially. The contrast could not be more
stark. M.E. patients are treated terribly (and often abused terribly, even
unto death in some cases), yet there is no public outcry as there would be
if MS patients were treated in this same way.

Thus people with M.E. find themselves in the terrible position of actually
ENVYING people who have MS."


I hope this paper will be a useful advocacy tool for patients and families
of patients. It takes a different approach to explaining the facts of M.E.
than many other papers on the site (and elsewhere), and it is to be hoped
that perhaps it may have a higher chance of getting through to those readers
who are (for whatever reason) particularly welded to the
financially-motivated propaganda and myths surrounding M.E.

This paper is available in three different versions to suit different target
audiences. The standard version and the condensed version include
significant details from my own and other case studies.

The 'condensed and modified' version of the text has been modified to omit
all reference to individual case studies. (This more formal version may be
more suitable for distribution to doctors or to journalists etc.)

The fact that M.E. is so similar medically to a well-established neurological disease such as MS is compelling. Please redistribute this
paper widely to fellow patients, and others who you think can benefit from
this important information.

See: http://www.ahummingbirdsguide.com/mevsms.htm


-------

A new version of the video: 'Testing for ME' is available

Testing for M.E. version 2 features an alternate ending and vastly improved
sound quality.

See: www.youtube.com/watch?v=9RJL0a-GOZ4

To download audio or text versions of this video see:
http://www.ahummingbirdsguide.com/topicaudioandvideo.htm

------

Two new relevant books

1. Charcot's Bad Idea by Simon Overton

"This book charts the ways in which the ideas of a 19th Century neurologist
became enshrined in the thinking of modern neuropsychiatry. It looks at how
the diagnosis of hysteria and conversion disorder was revitalised by a group
of like-minded physicians under the terms of "functional weakness" and
"functional neurological deficit" in order to "develop constructive ways of
talking with patients". Overton claims this approach has fundamentally
failed and the often hilarious jibes he makes at some sectors of the medical
profession only highlight further the need for doctors to listen to their
patients."

Simon Overton is a fellow advocate that I communicate with regularly. He is
also someone that I consider a friend. Simon was kind enough to ask me to
write the forward for this book. An exscept from the forward text:

"Simon Overton is to be congratulated for creating such a timely,
intelligent and compelling book on this important topic. More uncompromising
educational efforts like this one must be produced if change is ever to
occur. The fox has been left in charge of the hen house for far too long
already. Knowledge is power."

I highly recommend this book. The chapter which deals with the case of Ean
Proctor in particular is a must-read for anyone involved in this field of
medicine. It's a little gem.

This book is available in a printed version and also as a digital download.
The book is dedicated to Dr Byron Hyde.

To read a larger extract from the forward text, and for purchasing
information, please see:
www.ahummingbirdsguide.com/indirectbooks.htm#334582559


2. Lost Voices - The stories of families living with myalgic
encephalomyelitis, from IiME

Comment from IiME:

Invest in ME are offering a new book - "Lost Voices - The stories of
families living with myalgic encephalomyelitis" - which we hope will help
healthcare professionals, media, ME Support groups and people with ME in
their quest to improve education and assist with publicising of the illness
myalgic encephalomyelitis (ME).

The name 'Lost Voices' refers both to the fact that people who are severely
ill with ME are generally not in a position to make themselves heard, and
also to the way that the  prejudiced denial of ME - as an 'aberrant belief'
rather than a devastating physical illness - has meant that often others are
incapable of actually hearing and seeing what is being said and shown - our
voices drop into a void.

The book is an A4 landscape size with a laminated card cover with pictures,
mostly in colour.

'Lost Voices' is primarily written by people affected by severe ME- whether
as sufferers, carers or families.

For more information see:
www.ahummingbirdsguide.com/excellentbooks.htm#334586896

(Note that I have not read or reviewed this book.)


-------

The M.E. advocacy group RiME has a new and updated website

See: www.rime.me.uk


-------

Appalled by CBT/GET and other abusive and inappropriate nonsense aimed at
M.E. patients? Help by sending your pic!

From ME sufferer Rene:

I know I am a pain but I think it is now more important than to show our
faces one way or another. Lets help Antoinette get the longest banner ever.

Let get as many faces of PWME together who are appalled by the NICE stance
on the one size fits all GET/CBT treatment of people

I am still willing to gather as many pics as I can to upload to BEBO where
Antoinette can pick them up. renethorpe@yahoo.co.uk  if the link hides it is
renethorpe(at) yahoo.co. uk just swap the (at) for the @ key. and dont
forget to tell me how many years you have  been ill

What about those with ME who made it into the court House.. Don't forget
Antoinette managed to get about 70 PWME with her. There would have only been
a few there without that banner.

Parents and carers can send in pics of their loved ones.. And don't forget
we cannot ignore those who have tragically passed away

LETS BE PREPARED NEXT TIME AND HAVE THE BANNER READY TO GO...

Smiling or unsmiling the choice is yours. ME affects may different types of
people. Those who can smile through the pain to those who are too ill to
smile. My husbands thought though on seeing a long row of only gloomy faces.
'' What do they all have in common.. mmm they all look miserable sods...must
be depression.' '

Just seen on another website The Autistic group are organising a demo for
their aware week and they are also asking for pics of those who cannot
attend.

Take care

Rene

--

Additional note from Jodi Bassett: The NICE Guidelines Judicial Review,
headed by Kevin Short and Douglas Fraser, is a UK initiative, but Rene tells
me photos are still welcome from all around the world (and that it isn't too
late even now to send them).

For those unaware of the facts of the NICE challenge, see:
http://www.nicemecourt.co.uk/

A fairly typical newspaper article (which is better than the usual standard
of M.E. reporting but of course still leaves much to be desired) on the
challenge is as follows: http://tinyurl.com/b5dxvo

Kevin Short commented recently:

"Whilst I cannot comment on the court proceedings prior to judgement I
would just like to say that the mistreatment of ICD-10-G93.3 ME
patients the world over has been and continues to be an absolute
disgrace. In the UK, NICE has singularly failed to produce anything
remotely resembling "clinically excellent" advice for doctors in its
Guideline 53. ME patients deserve nothing less than genuine science
based treatments and justice."

------

That's it for this month.

All the best, as always, in your ongoing battle with M.E. or your loved
one's battle with M.E., until next month,


Jodi Bassett
--
A Hummingbirds Guide to Myalgic Encephalomyelitis:
www.ahummingbirdsguide.com

All of these children, and the medical and scientific community as
well, could benefit if funds were dedicated for the complete and
integrated physical and technological examination of these M.E.
victims. I call them victims since I believe the medical community as a
whole have abandoned them, both children and adults. Lack of progress
in developing both scientific and medical understanding and treatment
protocols are what I believe to be the result of medical and
psychiatric arrogance. Dr Byron Hyde MD 2006

"What all this amounts to is that we have lost any semblance indeed any
pretence of pursuing scientific inquiry (into) what is true. This is almost
classic in its near-phobic avoidance of considering anything that could
possibly be construed as speaking the truth." Margaret Williams on M.E.

My suspicion is that until we accept that the disease that we have is M.E.we
will continue to be victimized and manipulated. How long will the deception
and fraud continue before the public calls for accountability and
prosecutions for fraud ? Cesar Quintero

The CFS definitions were written in such a manner that CFS becomes like a
desert mirage: The closer you approach, the faster it disappears and the
more problematic it becomes. Dr Byron Hyde MD 2003

-----------

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Exercise and CFS -- New Proof of Disability

"Cracking the Foundations - The Pacific Fatigue Lab and Chronic fatigue
Syndrome (ME/CFS)" Phoenix Rising: An ME/CFS/FM Newsletter (Jan 09) by Cort
Johnson
http://aboutmecfs.org/News/PRJan09Pacific.aspx

Could a small lab in the Central Valley of California shake the CFS research
field with a quake of epic proportions? Change how the disease is viewed?
How it's defined? Legitimize the disease once and for all? It's possible
that given enough resources the Pacific Fatigue Lab at the University of the
Pacific in Stockton, California may do all of these.

Run by three exercise physiologists, Dr. Christopher. Snell (Ph.D), Dr.
MarkVan Ness (Ph.D) and Staci Stevens (M.A.), a former grad student and now
a researcher with chronic fatigue syndrome (ME/CFS), the lab focuses on a
very basic and still very misunderstood aspect of CFS – why patients have so
much trouble with exercise.

Staci Stevens, the founding Executive Director of the Pacific Fatigue Lab
explained. "Many researchers look at ME/CFS patients when they're at rest-
at baseline. But as any ME/CFS patient knows, the real problems occur when
their systems are under stress due to too much activity. We're taking a
close look the physiology of CFS patients as they undertake the most
stressful activity of all – exercise."

Since oxygen plays a key role in energy production, exercise physiologists
use oxygen consumption during exercise to tell how much energy a person's
body is capable of producing. Having people pedal a stationary bicycle until
they can pedal no more tells researchers how much air their lungs can take
in (Ventilation Max) and therefore how much oxygen they use to produce
energy (VO2 Max) at their peak level of effort. Since oxygen plays a key
role in the energy production process this test effectively tells
researchers how much energy is being produced.

Given the fatigue and post-exertional problems often noted in ME/CFS one
would think aerobic exercise tests would have played a key role in
legitimizing this disease, but instead they've given rise to further
skepticism. The ability of many patients to pass them has added to confusion
about a disease characterized by the word fatigue. How could CFS patients be
so fatigued if they're able to generate normal amounts of energy?

A New Approach - The Pacific Fatigue Lab researchers realized, however, that
while researchers may have been asking the right questions they were asking
them in the wrong way.
Many ME/CFS patients can, after all, get through a
single 'workout' or a single day or single afternoon at work okay only to
'crash' afterwords. Until now, though, no one's taken a close look at the
ME/CFS patient's ability to produce energy when they're in a crash – an odd
oversight in a disease whose symptoms are so tied to activity. (Indeed,
study after study is showing that many variables which test out normal or
near normal when ME/CFS patients are at rest are abnormal when their systems
are put under stress).
With the Pacific Fatigue Lab doing a new exercise
testing regime, two exercise tests two days in a row and other tests (now
known as the Stevens' Protocol) they've given the post-exertional problems
ME/CFS patients have reported for so many years a
chance to show up – and they have.

Their results are both profound and disturbing. About half of the ME/CFS
patients they've tested do, in fact, 'fail' or significantly under perform
in the first single exercise test – they cannot generate normal amounts of
energy even when they're 'rested'. It's the rest of the patients that are so
intriguing, though. When you give these patients a second test a day later
many of them will fail as well--and fail spectacularly.

The amount of impairment the Lab see's can be astonishing - some patients suffer as much as a 50% drop in their ability to produce energy the next day. Ms. Stevens spoke of a twenty-something man whose next day exercise
tests were worse that those of a normal 85 year old. In a hospital setting his cardiopulmonary exercise profile would suggest he had heart failure.

Revolutionary Findings - According to modern medical science this shouldn't
occur. For decades researchers have shown that human beings, under virtually
all conditions and in a variety of disease states, can take an exercise test
to exhaustion, recover and return the next day and score the same the next
day. It doesn't matter if she/he has heart failure or end-stage kidney
disease – again and again researchers have shown that the human body – even
in extremely poor health - has an amazing ability to quickly return to a
baseline level of energy. That is until now.

But it's not just that chronic fatigue syndrome (ME/CFS) patients are
failing these tests, it's also the unique way they're failing them that's
raising eyebrows. Decades of research have shown if you a take a female of W
age and have her do X amount of exercise at Y heart rate she will exhibit Z
levels of oxygen consumption. Researchers have believed these algorithms are
set in stone but they're not holding up in chronic fatigue syndrome (ME/CFS)
patients. That they're not suggests that something has gone awry in the
basic physiological processes the body uses to produce energy in this
disease.

Even after 20 years in the field Staci Stevens' excitement was palpable. The
implications of her findings are profound not just for ME/CFS patients but
for the field of exercise physiology. She said "We are charting waters that
have never been charted before. It's an exciting time to be involved in CFS
research!"

The lab's findings are so unusual that their peers sometimes can't believe
what they're hearing. Since decades of research have indicated there's no
need to do repeat exercise tests, they are simply not done. Until recently
the Pacific Fatigue Lab may be the only lab in the world that regularly does
them. I asked Staci Stevens how her colleagues across the country were
reacting to this data – were they excited? She said some of them say, "It's
just not possible, they think we must have imputed the data wrong but others
are enthralled". She said one colleague on the east coast who's doing the
tests said that after 30 years in the field, "I'd never seen anything like
this".

A Quick Road To Legitimacy? - Their findings undermine long held beliefs not
only about chronic fatigue syndrome (ME/CFS) but about exercise physiology
as well. Overturning paradigms is not easy but the Pacific Fatigue Lab has
an ace in the hole in this regard. Many ME/CFS researchers and patients have
looked to the future for technological breakthroughs that will legitimize
the disease once and for all. The new technologies coming to bear on ME/CFS
are exciting but new technologies take time, sometimes long periods of time,
to be assimilated and accepted.

There's nothing new, however, about the technology the Lab is using; in fact
it's boringly well established. The aerobic exercise tests they do form an
essential part of every cardiologist's and pulmonologist's tool kit. Once
the Pacific Fatigue Lab's test results are replicated and make it into the
broader research community acceptance should come relatively quickly. In
fact if one were to chart the quickest road to legitimacy for this disease
it would very much look like the path the Pacific Fatigue Lab has embarked
on - charting gross abnormalities in well accepted, well established tests.
If the Pacific Fatigue Lab's findings hold up, the news couldn't be better
for chronic fatigue syndrome (ME/CFS) patients.

Redefining Chronic Fatigue Syndrome (ME/CFS) – The Pacific Fatigue Lab's
results should also clarify one of the key questions concerning the disease:
whether researchers have been mixing apples and oranges in their studies.
For decades researchers have worried that the disease's vague definition
allows people with different illnesses to participate in research studies.
The most pressing question concerns whether 'post-exertional malaise' (PEM),
which signifies dramatically worsening symptoms after physical or mental
exertion, uniquely identifies this disorder or is simply one symptom among
many.

One side, lead by the producers of the Canadian Consensus Definition of
ME/CFS, believes that post-exertional malaise (PEM) is a hallmark symptom
that reflects unique physiological processes. They believe that allowing
people without this problem to participate in chronic fatigue syndrome
(ME/CFS) studies may have greatly hampered efforts to understand this
disease.

The other side, exemplified in the Center for Disease Control's (CDC)
empirical definition of 2005, believes that post-exertional malaise (PEM) is
one of many symptoms present in the disease. They argue that the most
important feature of the disease is unexplained degrees of 'unwellness' that
interfere significantly with people's work, personal, social, etc.
activities. They believe some different process is at work.

The Pacific Fatigue Lab's results suggest that the Canadian Consensus group
is correct; during either the first or second exercise test a large subset
of patients demonstrates significant physiological abnormalities in their
ability to produce energy. Another subset of patients does not. The Lab's
findings suggest that these two groups should be separated in research
studies.

Ms. Stevens could not say, however, how big the PEM subset is. The Lab has
derived most of its data from three groups of patients – research subjects
in the test/ re-test studies, those attempting to get disability and
participants in the Ampligen trials. Many of the people they screen do
exhibit PEM on the exercise tests but others do not. It will take
statistically rigorous studies to determine how prevalent the
post-exertional malaise group is.

Demonstrating that this subset does exist and can be differentiated by
standard physiological tests would go a long way toward breaking up the CFS
label, revamping the definition of the disease, focusing researchers in on
key abnormalities, and, of course, creating a new name.

Answering the subset question would be tremendously valuable but the Stevens'
Protocol could also have an enormous impact on another very bread and butter
issue: disability.

A Comprehensive Disability Evaluation – CDC studies indicate that the
average annual financial costs of CFS (@$25,000/year) impose an economic
burden that many families cannot sustain for long. Getting disability can be
the difference between absolute poverty and at least a minimum amount of
financial comfort and medical attention. Without clear diagnostic or
functional tests, however, getting disability has been a challenge.

Chronic fatigue syndrome (ME/CFS) patients don't win their disability cases
because they have ME/CFS, they win when they can demonstrate they cannot
function well enough to work. Fortunately, measuring functioning is what the
Pacific Fatigue Lab is all about. The simplicity of the exercise tests is
their grace; patients who cannot produce sufficient amounts of energy cannot
be expected to function – it's as simple as that. Aerobic exercise tests
have the added advantage of a long history; they've been used to demonstrate
disability in heart patients and others for decades.
The Steven's Protocol
has the potential to produce a clarity that has been strikingly missing in
this arena.

The Pacific Fatigue Lab offers perhaps the most extensive disability
evaluation in the country. The exercise tests don't take long – 8-10 minutes
with a slow windup period. – and they can have brutal after-effects– but, if
successful, they are time well spent. (The Pacific Fatigue Lab will not
allow severely disabled patients or those with moderate to high
cardiovascular risk to take the tests. If the first test shows disability
the next test is not needed).

They're not cheap, but even at $2,000 a pop, they present a good value for
those who can afford it.
(Single exercise tests typically run from
$800-$1200 at a hospital. Some insurance companies will reimburse for the
testing though billing insurance is the responsibility of the client). The
Stevens' Protocol 8-12 minute aerobic exercise tests, resting pulmonary
function tests measuring lung function, bioelectrical impedance exams
measuring hydration, acoustic nasal rhinometry measuring sympathetic nervous
system functioning, reaction time testing evaluating cognitive processing
time, and a seven page written evaluation. Not every patient who does the
disability evaluation gets a diagnosis of 'disabled,' but for those who do
it can be financial lifesaver.

The Stevens' Protocol has the potential to rewrite the disability rules for
ME/CFS. The CFIDS Association of America has already asked the Social
Security Administration to take them into account but they're behind the
game; the Fatigue Lab has already notched its first of several wins in the
long term disability field. In fact, their first win holds a place of honor
in a frame on the wall of their office.

Education - With all the many ramifications of the Lab's work, it's the day
to day process of educating students about ME/CFS that may be the most
fulfilling for Staci. She, Dr. VanNess and Dr. Snell all incorporate their
latest findings into their classes; 'Here is a normal exercise stress test'
they say and 'here is a CFS patient's' test. The students are enthralled and
they should be; they are being exposed to cutting edge data that the
textbooks say shouldn't be happening.
It's exciting to be a young (or old)
student on the cusp of research that has the possibility of overturning
accepted paradigms. Ms. Stevens laughed and said "They love working with CFS
patients. They're always asking to see the results on the last patient".

When these students leave the University of the Pacific they'll be
ambassadors for this disease and spread the word about the unusual findings
.
Currently the PFL has four graduate students and a handful of undergraduates
working with them.

They also provide hope for a field that is not attracting many new faces. In
fact, the lack of young researchers may be the biggest long-term problem the
research field faces. The researchers that got engaged in the field when it
was new and not subject to so much controversy will be retiring in the not
so distant future. Ms. Stevens lamented the lack of young faces at the
Symposium on Viruses in CFS in Baltimore in May, 2008.

The chronic fatigue syndrome (ME/CFS) research world is catching onto the
implications of the Pacific Fatigue Lab's work. A repeat exercise study by
Ellie Stein in Canada recently opened and one is reportedly underway in
Europe. Ms. Stevens readily acknowledged that replicating results has been
difficult in ME/CFS, but she's confident that their results will hold up.
She's done 1,000's of single cardiopulmonary exercise tests on chronic
fatigue syndrome (ME/CFS) over the years and close to a hundred with the
Stevens' Protocol at the Pacific Fatigue Lab. Whether in Stockton, Stanford,
Incline Village or Ithaca, New York they see the same general pattern again
and again, a unique metabolic dysfunction that characterizes and objectifies
the most mystifying symptom in the disease, post exertional malaise.

(Research, education, treatment…does this sound familiar? Advocates have
been asking for the federal government to produce Centers of Excellence that
combine research, treatment and education. The Pacific Fatigue Lab is a COE
in miniature. )

Opportunity – The Pacific Fatigue Lab is a remarkable accomplishment – a
testament to one grad student's persistence – and a small coterie of
advisors and mentors who made her passion their own. University affiliated
chronic fatigue syndrome facilities are almost non-existent. Aside from the
Whittemore-Peterson Neuro-Immune Institute in Reno, Nevada (which won't open
its doors on the university campus for another two years) there may be no
other University sponsored Chronic Fatigue Syndrome lab in the country.
Special thanks must go to the Sport Sciences Department Chair Dr.
Christopher Snell and to the University of the Pacific for having the vision
to recognize the opportunity the Lab presents and backing it despite of the
controversy still surrounding this disease.

The opportunities the Lab presents for this disease are staggering. Yet the
contrast between the opportunity present and the resources available is a
little heartbreaking.

The Pacific Fatigue Lab is entirely volunteer run by three people who are
trying to analyze their data, get grants and publish on their off-time.
Somehow, they've managed to create a beautiful lab but they're still missing
key ingredients. Their papers have mostly been published in less well known
journals, they don't have a website to get the word out, and they don't have
a strong funding base. Indeed the theme of overworked (and unpaid)
researchers trying to make do on a shoestring is a constant one in the
ME/CFS research community.

I asked Staci Stevens about doing heart rate variability (HRV) studies.
Given their ability to provide data on how the autonomic nervous system is
functioning –which appears to be a key player in the disease – HRV studies
seem like a perfect fit for the lab. She said 'I'd love to do HRV but we don't
have the funding'. Staci noted that "This doesn't need to be rocket science.
We could go a long way just by focusing on some simple areas that the
research community has basically ignored" One gets the idea that there are
many things the Pacific Fatigue Lab could do to advance the science of
ME/CFS if they just had a bit more money.

But there's only so much money and so much time in the day. The Pacific
Fatigue Lab has been able to produce what it has through two private grants
from the CFIDS Association of America and from funds it gathers from doing
its comprehensive disability studies and firefighter fitness testing on the
side. Currently the Lab's researchers are focused on analyzing the results
from the Stanford Montoya Valcyte study and the data from their latest
repeat exercise study plus a new study, all while they're teaching full
loads.

The Next Level - One wonders what these researchers could achieve if they
had more time and money to focus on a subject that they're obviously so
passionate about.

I asked Staci how much money would it take to move the Lab to next level?
She said 'For sixty thousand dollars we could hire a Ph.D in exercise
physiology to write grants, run the studies and write up the data. There are
plenty of people who would love to get a job to do that". Hiring a full time
clinical testing supervisor who could take over the grunt work of data input
would allow them to focus more on the big picture. Monetarily speaking this
is chicken feed in the medical world; they're not far at all from creating a
lab that could start turning out study after study.

Ms. Stevens was reluctant to delve into the thorny issue of federal
financing for CFS research but it was clear that she felt that whatever
semblance of a spigot that had once been turned on has been mostly turned
off. The loss of the Cooperative Research Centers at the NIH in 2002 was a
severe blow. The Pacific Fatigue Lab's efforts to get an NIH grant failed.
When I asked if the Centers for Disease Control had shown an interest in her
work she said 'Interest and funding are two different matters and they are
struggling with funding as well.' One would think that somewhere in a
community of 1,000,000 patients a way could be found to assist them in their
work.

Advocacy - When the federal system fails to assist people in need one must
turn to advocates to put pressure on the government. Ms. Stevens agreed that
advocacy was critical but noted that the problems with exhaustion chronic
fatigue syndrome (ME/CFS) patients faced made them ill-equipped for
advocacy. Still she noted that when she served on the federal advisory
committee for CFS (CFSAC) they typically had less than 5 patients show up
for the meetings – and they tended to be the same five patients - not a
strong signal to the government to move on these issues.

The Future - The Pacific Fatigue Lab is creating a body of work that has the
potential to revolutionize the medical community's understanding of this
disease. The possibilities are impressive; legitimize ME/CFS, rewrite the
disease's disability rules, create viable subsets, focus the attention of
the research community on the post-exertional period to determine how this
disease is defined and guide both non-pharmacological and pharmacological
treatment to improve quality of life for patients.

How well it will be able to achieve these goals will in good part depend on
the resources it has and how well it can get the word out about its
findings. Indeed the Lab is still mostly a secret in the ME/CFS community.
Ms. Stevens said that as they've been accumulating data and analyzing it
that "We've been kind of underground" but she also felt it was about time
for them to come out. Chronic fatigue syndrome (ME/CFS) patients can only
hope they come out in a big way indeed.

Pacific Fatigue Lab at the University of the Pacific: 3601 Pacific Avenue,
Stockton, CA 95211; (209) 946-7649. email: sstevens@pacific.edu

Contribute to the Pacific Fatigue Lab through the Workwell Foundation; a
non-profit foundation created by Staci Stevens to advance research into
chronic fatigue syndrome (ME/CFS). Phone: (209)599-7194. email:
staci@workwellfoundation.org







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Tuesday, February 24, 2009

Money, money, money....

 
 
It's been pointed out by several columnists lately that Republicans are in favor of payments to people they know, it's the general notion of "entitlements" paid to people they don't know that they object to.  I see it in my own friends.  One of my dearest friends is a dyed-in-the-wool conservative, and is absolutely livid that 8½ years after applying for Disability, I still have not received one cent of government assistance.  She knows me, she knows I'm a hard worker, she knows I'm not defrauding the system, and firmly believes that I should get the money I need.  It's the other millions of applicants, the people she can't put a face to, who she thinks shouldn't get any money.
 
Well, "entitlements" are real people.  People like me who need that help to put a roof over their head and food on the table.  They're elderly, severely ill, disabled, and children who live in poverty through no fault of their own.  Reduce spending on entitlements, and you're going to cause innocent people to suffer.  There's a great myth that if you pull government funding, friends and family will help out, churches will provide free housing, or people will go back to work.  Let me tell you, that's not true.  I get no government benefits, and the reaction of my friends has been that I'm the government's responsibility; they pay taxes so that the government will take care of me, so they don't have to. No church has come through with any help of any sort – I've asked myself and friends have asked on my behalf, with no success.
 
Take away the help that people need to live independently, and those who are old enough and sick enough will move into nursing homes, which will cost the taxpayers many times more than these people are getting currently.  Those who aren't sick enough to require a nursing home will wind up homeless, and eventually get sick enough from living outdoors that they land in the hospital at taxpayer expense.
 
Several years ago, Connecticut spent over a million dollars trying to root out able-bodied people who were collecting disability, and found six in the entire state.  It will probably take 15 years to recoup the money they spent to find that half-dozen fakers.  Because the simple fact is, you can't survive on what entitlements pay, so unless you have an employed spouse to make up the difference, you're not going to take Disability unless there's no possible way for you to work.  A friend who's a medically-retired nurse gets about $650/month.  Could you live on that?  Wouldn't you rather work a minimum wage job and have nearly twice as much money?
 
Last year, some elected officials tried living on the amount allotted per person for food stamps and found it absolutely impossible.  Even eating cheap (read: non-nutritious) food, they occasionally had to go hungry.  Food stamps are a helping hand for those in need, but not a desirable way to live.  If there's no food closet in your area, or you don't have a car to get the big box of food home, or you're too sick to manage both a trip to the grocery and a trip to the food bank, then all you have is your food stamps.  I don't have a car, and cab fare to/from the food closet basically would have negated the savings on the food I'd be given, not to mention that I have food allergies, and there's no guarantee that what's in the box would be things I can eat.
 
Since I needed some income to pay my bills while waiting for my Disability to be approved, I started my own business.  I got not one cent of government money for that, either.  About 20 years earlier, I'd tried to get an SBA loan and was told that I had to put up half the money myself, plus put up collateral for what I wanted to borrow – at that time, I didn't have the type of collateral they wanted, so I capitalized that business on my MasterCard.  This time, I didn't even waste the time filling out the loan paperwork, I went straight to pulling out my own plastic.  If I had already been approved for Disability benefits, I might have been able to get some help from VocRehab, but until I'm officially decreed to be disabled, I'm closed out of that, I'm closed out of In-Home Support Services, I'm closed out of every single program I've been told might help me.
 
Needless to say, I take great exception to those who accuse me of taking taxpayer money – in the past 8½  years, I've paid far more in taxes than I've gotten back in benefits, because I have gotten precisely ZERO in government money since my Unemployment ran out in Summer 2000.  (And, yes, I was legitimately collecting Unemployment because I was, in accordance with the requirements of the program, looking for a job.  I firmly believed that I could work part-time, right up until I started my own business and determined that I could not actually work as many hours as I thought I could.  It is the nature of my disability that exertion makes you sicker; when I'm not working, I feel relatively well, but after a few days of working, it becomes apparent that I can't sustain the effort without landing back in bed.)
 
Some years, the taxes I paid totalled more than my income.  Think about that the next time you're grousing about the check you have to write to the tax man!
 
Balancing the budget on the back of society's neediest members is something that should never be done.  Most people who are homeless are not there by choice; they're living out in the elements because the money they need to put a roof over their heads isn't coming in.  By the grace of God, I don't have to pay rent, so my housing costs me only property taxes and insurance; it's not "free", but it's a lot more affordable than friends who have to pay for an apartment.  A friend who had been living in subsidized housing was left a house by her father, but has found that the cost of taxes/insurance/maintenance on an old house is far more than she was paying for her subsidized apartment, and she's going to have to sell it and get back on the list for subsidized housing; the help that she needs to keep the house simply hasn't been forthcoming from any charitable organization.
 
Our seniors and disabled deserve enough help to live in comfort, with an adequate supply of nutritious food, not calling a slice of day-old bread "lunch", with the heat turned down to 55 so they can afford to pay the gas bill.  Don't deprive us so that bankers can get billions in bail-outs, which they use for bonuses and travel.  Think of the outcry if any industry seeking a bail-out was told to reduce all employee paychecks to the amount that elderly and disabled people receive.  Yet, as the innocent victims of illness or accident or simple fact-of-life aging, we're expected to scrape by well below the poverty level and be immensely grateful for the pittance we receive.
 
I've often been criticized for daring to speak out against the system, instead of thanking the taxpayers for the help they give me.  So, here it is, with my deepest emotion, Thanks For Nothing.  Because nothing is what I've received from the government this past 8½ years.





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Monday, February 23, 2009

Illness Intrusiveness

The following study has now been published and is available online.



Journal of Health Psychology, Vol. 14, No. 2, 215-221 (2009)
DOI: 10.1177/1359105308100205



Illness Intrusiveness in Myalgic Encephalomyelitis
An Exploratory Study
E.M. Goudsmit

University of East London, UK
B. Stouten
S. Howes
This study assessed the relationship between illness intrusiveness, symptoms, disability and depression in patients with myalgic encephalomyelitis (ME). Participants were 16 patients with ME and eight patients with ME plus co-morbid disorders. The patients with co-morbid disorders reported greater illness intrusiveness than the patients with ME alone, but there were no differences between the groups on the other variables. Significant correlations were found between illness intrusiveness on the one hand, and fatigue, cognitive dysfunction, disability and depression, on the other. We conclude that ME is a disabling illness, which has a major impact on various life domains.



http://hpq.sagepub.com/cgi/content/abstract/14/2/215?etoc




NB. This is one of several studies which focuses on ME (Ramsay-defined). The results indicate that ME is one of the most disabling conditions for which we have normative data. The combined sample, i.e. those with and without comorbid disorders, are the most disabled group.





Ellen Goudsmit
----------------------------------------------------------------------

Ellen M. Goudsmit PhD CPsychol AFBPsS

Chartered Health Psychologist


For information on ME and CFS, see:
http://freespace.virgin.net/david.axford/melist.htm  




 


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Sunday, February 22, 2009

Lifestyle of PWC and Effect on Impairment

Source: Journal of Human Nutrition and Dietetics
        The Official Journal of The British Dietetic Association
        Preprint
Date:   February 13, 2009
URL:    http://www.ingentaconnect.com/content/bsc/jhnd
        http://www3.interscience.wiley.com/journal/117979034/toc


The lifestyle of patients with chronic fatigue syndrome and the effect on
fatigue and functional impairments
-------------------------------------------------------------------------
M. M. Goedendorp(+,*), H. Knoop(*), G.M. Schippers(**) & G. Bleijenberg(*)
*  Expert Centre for Chronic Fatigue, Radboud University Nijmegen Medical
   Centre, Nijmegen
** Amsterdam Institute for Addiction Research (AIAR) Academic Medical Centre,
   University of Amsterdam, Department of Psychiatry and Addiction,
   Amsterdam, The Netherlands
*  Correspondence: Martine Margaretha Goedendorp, Expert Centre for Chronic
   Fatigue, Radboud University Nijmegen Medical Centre, PO Box 9101, 6500 HB
   Nijmegen, The Netherlands. Tel.: +31 24 3610048. Fax: +31 24 3610041
   E-mail: m.goedendorp@nkcv.umcn.nl


Abstract

Background
Little is known about the lifestyle of patients with chronic fatigue syndrome
(CFS) and its influence on symptoms of CFS. The present study aimed to
investigate the lifestyle of patients with CFS, and to assess whether
lifestyle factors are related to fatigue and functional impairments.

Methods
Two hundred and forty-seven patients fulfilling the Center for Disease
Control criteria for CFS were included. Validated questionnaires were used to
collect data on lifestyle factors, smoking, intake of alcohol, fat, fibres,
fruit and vegetables, body mass index (BMI), fatigue severity and functional
impairments.

Results
Of the CFS patients, 23% smoked, 32% had an unhealthy BMI, and none had an
unhealthy alcohol intake. A majority had an unhealthy food intake: 70% had
unhealthy fat, fruit and vegetable intake, and 95% had unhealthy fibre
intake. Compared with the general Dutch population, significantly fewer CFS
patients were overweight.
Significantly more female CFS patients abstained
from alcohol, and fewer male CFS patients smoked. Unhealthy lifestyle factors
were not significantly associated with fatigue severity or functional
impairments.

Conclusions
CFS patients tend to lead a healthier lifestyle compared to the general Dutch
population.
However, no relationship was found between lifestyle factors and
fatigue severity and functional impairments in CFS.

Keywords: alcohol; chronic fatigue syndrome; food intake; functional
impairments; smoking.


Introduction

It is generally known that lifestyle factors are important risk factors for
several diseases, such as cancer, heart disease and diabetes; however, many
people still continue to lead unhealthy lifestyles. For example, only half of
the adult general Dutch population meet the norm for exercise (Hildebrandt et
al., 2004) and many have an unhealthy eating pattern (TNO Voeding, 1998,
2004; Voedingscentrum, 1998; Hulshof et al., 2004).

Only sparse information is available about the influence of lifestyle factors
on fatigue. In a study among Israeli industrial employees, no involvement in
sport activities and chronic use of medication were found to be the most
powerful predictors of fatigue. In addition, people who smoked 10 or more
cigarettes a day were more fatigued (Kristal-Boneh et al., 1996). Another
study investigating the working population showed that lowest levels of
physical activity, being overweight and alcohol abstinence were related to
more severe fatigue. An association between smoking and fatigue was found
only in women (Bultmann et al., 2002). Lifestyle was also studied in a
sample of patients in the late course of polio. The results obtained showed
that physically active patients were less fatigued, but no other lifestyle
factors correlated with fatigue (Rekand et al., 2004).

To summarize, in all three studies described above, low physical activity was
associated with fatigue. However, associations between fatigue and other
lifestyle factors, such as weight, alcohol consumption and smoking, were
inconsistent.

When studying fatigue, a distinction should be made between acute fatigue and
chronic fatigue. In patients with chronic fatigue syndrome (CFS), fatigue is
not the result of constant exertion and is not alleviated by rest. CFS is
characterized by somatically unexplained severe fatigue, lasting for at least
6 months and leading to substantially impaired functioning. According to the
US Center for Disease Control (CDC) criteria for CFS, four out of eight
accompanying symptoms must be present: muscle pain, multi-joint pain,
headaches, sore throat, tender lymph nodes, unrefreshing sleep,
post-exertional malaise, and memory and concentration problems (Fukuda et
al., 1994; Reeves et al., 2003). Although the cause of CFS is still unknown,
it is useful to distinguish precipitating factors and perpetuating factors of
CFS. Somatic and psychological stressors can precipitate CFS. An operation,
an infection or the loss of a loved one can trigger symptoms of CFS (Knoop,
2008). Psychological processes appear to be the main factors in perpetuating
CFS (Suraway et al., 1995; Vercoulen et al., 1998; Prins et al., 2006).

Most CFS patients are physically less active. Low physical activity is also
identified as a perpetuating factor for fatigue and functional impairments
(Vercoulen et al., 1998). Although physical activity is usually regarded as a
lifestyle factor, it is probably more helpful to regard low physical activity
as an inherent and central feature of CFS, rather than a lifestyle factor.

Little is known about lifestyle factors of CFS patients, other than physical
activity. Two studies investigated dietary intake and deficiencies in small
samples of CFS patients, but conflicting results were obtained. The results
of one study did not reveal consistent patterns of deficiency or excess, in
dietary intake and nutrient concentrations of CFS patients compared to
control subjects (Grant et al., 1996). However, another study found that the
dietary intake of CFS patients was significantly lower than both the
recommended intake and the dietary intake of a comparable segment of the
population (Smith & Cohen, 1998).

Although there is a lack of knowledge about the dietary intake of CFS
patients, there is evidence that they change their lifestyle after the onset
of CFS. Woolley et al. (2004) found that 38% reduced their alcohol intake
and 27% stopped drinking alcohol altogether.
The most common reasons were
increased tiredness after drinking, increased nausea, exacerbated hangover
and sleep disturbance. In addition, the majority of CFS patients used 100-
200% of the recommended dietary allowance for vitamin/mineral supplements,
whereas the control subjects only used 40%
(Grant et al., 1996). However,
a controlled study showed that using supplements did not reduce fatigue
severity or disabilities in CFS
(Brouwers et al., 2002).

The first aim of the present study was to investigate the lifestyle of CFS
patients. The occurrence of an unhealthy lifestyle of CFS patients was
investigated by assessing the intake of alcohol, fat, fruits, vegetables and
fibres, and the percentage of patients who smoke. Where possible, the results
are compared with the data from the general population.

As some of the aforementioned studies showed, a considerable number of CFS
patients adapt their lifestyle. For example, CFS patients reduce their
alcohol intake because they experience increased tiredness after drinking
(Woolley et al., 2004). We expect that CFS patients switch to a healthier
lifestyle as a way to cope with symptoms and to influence symptoms
positively. Therefore, second, we tested the hypothesis that CFS patients
having an unhealthy lifestyle report more fatigue and functional impairments
compared to CFS patients with a healthy lifestyle.


Materials and methods

Patients

Patients were diagnosed at the outpatient clinic of the department of
internal medicine at the Radboud University Nijmegen Medical Centre and
referred for cognitive behavioural therapy (CBT) for CFS. Before diagnosis,
patients were asked to provide written informed consent for their data to be
used in scientific research. The data described in the present study were
collected from CFS patients who were going to start CBT as part of the normal
clinical routine. Therefore, the study did not fall under The Medical
Research Involving Human Subjects Act. All 247 participating patients met the
CDC criteria for CFS (Fukuda et al., 1994; Reeves et al., 2003) and were
severely fatigued and functionally impaired. Being severely fatigued was
operationalized as scoring 35 or higher on the subscale fatigue of the
Checklist Individual Strength (CIS) and being severely functionally impaired
was operationalized as scoring higher than 700 on the Sickness Impact Profile
(SIP) (Vercoulen et al., 1994).


Questionnaires

Participants completed the questionnaires before they started CBT. Lifestyle
was assessed with the lifestyle questionnaire previously used by Emmen et al.
(2006), which is composed of a subset of questionnaires. Three questions were
asked about smoking and daily smoking. Smoking, whether daily or not daily,
was defined as unhealthy. Alcohol use was assessed with four questions about
the amount and frequency of alcohol use. The number of alcohol units per day
was calculated using these questions. Female patients drinking more than two
alcohol units a day and male patients drinking more than three alcohol units
a day were defined as having an unhealthy alcohol intake (Jackson &
Beaglehole, 1995). Eating habits were assessed with three questionnaires;
the fat test, the fruit and vegetable test, and the fibre test (van Vugt,
1999; van Vugt & Knoppert, 1999). Higher scores on these tests indicated a
higher intake. Cut-off points described by van Vugt (1999) were used to
define unhealthy eating habits. The fat test is a 14-item questionnaire that
measures total and saturated fat intake. Scores in the range 13-60 and a
score of 22 or higher were defined as indicating an unhealthy fat intake. The
fruit and vegetable test is a six-item questionnaire, with scores in the
range 4-20. A score of 15 or lower was defined as indicating an unhealthy
fruit and vegetable intake. The fibre test is an eight-item questionnaire
with scores in the range 0-8. Patients scoring seven or lower on the fibre
test were defined as having an unhealthy lifestyle on the factor fibre intake
(van Vugt, 1999). Participants were asked about their weight and height. With
these questions, the body mass index (BMI) was calculated (BMI = kg/m^2).
Patients being overweight, and diagnosed as having a BMI higher than 25, were
defined as having an unhealthy lifestyle on the factor BMI. Patients having a
BMI in the range 18.5-25 were defined as having a healthy lifestyle on the
factor BMI (National Institutes of Health, 1998). As BMI was not recorded
from the start of the study, the BMI was available for only 81 patients.

Fatigue severity was assessed using the subscale fatigue of the CIS. The
subscale consists of eight items scored on a seven-point Likert scale. Scores
were in the range 8-56, with higher scores indicating a higher fatigue
severity. The CIS is a reliable and validated instrument (Vercoulen et al.,
1994, 1999; Stulemeijer et al., 2005).

Functional impairments were assessed by the total score on the SIP (Bergner
et al., 1981; Jacobs et al., 1990). The SIP contains eight subscales;
alertness behaviour, sleep/rest, homemaking, leisure activities, work,
mobility, social interactions and ambulation. The subscales are added to a
weighted total score in the range 0-5799, with higher scores indicating more
functional impairments.


Statistical analysis

The percentage of CFS patients having an unhealthy lifestyle was compared
with the general Dutch population using a chi-squared test for independent
samples. Data about lifestyle factors of the general Dutch population were
collected by Statistics Netherlands. A comparison between CFS patients and
the general Dutch population was made for the lifestyle factors smoking,
weight and alcohol intake, as the same method was used to collect data.
Lifestyle factors were tested separately for both sexes because the Health
Council of the Netherlands (2002) made a distinction on the basis of gender
for dietary reference intakes and most patients in our sample were female.
The age distribution of the general Dutch population was different from the
age distribution in the CFS sample. A majority (65%) of the CFS sample was
aged 18-45 years, whereas 27% of the general Dutch population was aged 20-40
years (Statistics Netherlands, 2006). Therefore, lifestyle factors were
tested separately for the two age groups.

CFS patients having an unhealthy lifestyle were compared with patients with a
healthy lifestyle. The differences between the two groups with respect to
the CIS and the SIP scores were tested using a t-test. Because the difference
was tested for five different lifestyle factors, a Bonferroni correction was
used to avoid a type I error (Field, 2005). Thus, a P<0.01 (0.05/5) was
considered statistically significant. Data were analysed using spss for
Windows, version 12 (SPSS Inc., Chicago, IL, USA).


Results

Of the 247 patients, 177 (72%) were female. The mean (SD) age of the sample
was 39 (11.0) years (range 18-65 years) and 24% of the patients had higher
education (higher vocational education or university). The number of CFS
patients who had an unhealthy lifestyle is shown in Table 1. To put these
data into perspective, the lifestyle of factors smoking, weight and alcohol
abstinence in CFS patients were compared with the general Dutch population
and are shown in Table 2. Because only one CFS patient had an unhealthy
alcohol intake, a comparison was made on alcohol abstinence. In the group
aged 18-45 years, significantly fewer CFS patients were overweight compared
to the general Dutch population, both in males and females. In addition,
significantly more female CFS patients abstained from alcohol and fewer male
CFS patients smoked compared to the general Dutch population. No significant
differences were found with respect to fatigue severity or functional
impairments between CFS patients with a healthy and an unhealthy lifestyle
(Table 3). In addition, no differences in fatigue severity (P=0.525) or
functional impairments (P=0.055) were found between patients having none or
one unhealthy lifestyle factor and patients having two or more unhealthy
lifestyle factors.


Discussion

To gain more insight into the lifestyle of CFS patients, the main aim of the
present study was to investigate how many CFS patients lead an unhealthy
lifestyle according to generally accepted norms and to compare these data
with the general Dutch population where possible.

The results obtained showed that approximately one in four CFS patients
smoked, and almost one-third had an unhealthy BMI. A notable finding was that
only one of the CFS patients had an unhealthy alcohol intake. It should be
noted that excessive alcohol consumption is an exclusion criteria for CFS
(Fukuda et al., 1994), introducing a bias in this comparison. Nevertheless,
the low alcohol intake of CFS patients is in line with the earlier study
conducted by Woolley et al. (2004). The eating habits of CFS patients showed
a rather unhealthy lifestyle pattern. Only 5% had a healthy fibre intake and
approximately 70% had an unhealthy lifestyle with respect to fat, fruit and
vegetable intake. However, the eating habits of the general Dutch population
also showed an unhealthy pattern
(TNO Voeding, 1998, 2004; Voedingscentrum,
1998; Hildebrandt et al., 2004; Hulshof et al., 2004).

The results of the present study revealed a small difference between CFS patients and the general Dutch population, with the former group leading a healthier lifestyle. Our study showed that significantly more female CFS
patients abstained from alcohol, fewer male CFS patients smoked and less CFS
patients were overweight. The results concerning weight need to be
interpreted with caution because CFS patients with a BMI lower than 18.5 and
higher than 40 do not meet the criteria for CFS (Fukuda et al., 1994).

The hypothesis that CFS patients with an unhealthy lifestyle are more
fatigued and have more functional impairments compared to CFS patients with a
healthy having an unhealthy eating pattern was not associated with fatigue
severity or functional impairments in CFS. These results do not support the
need for specific lifestyle interventions
for the CFS symptomatology, as also
confirmed by Hobday et al. (2008).

The limitations of this research must be acknowledged. First, the study is
limited in that it comprises a selected sample. Data were collected from CFS
patients visiting a specialized clinic and therefore generalization to all
CFS patients might not be appropriate (Euba et al., 1996). Generalization to
other populations is also not advisable because lifestyle is partly
culturally determined. Another limitation is that lifestyle factors were
assessed using self-report questionnaires. It is not known whether data from
questionnaires reveal reliable data about the actual use of alcohol (van
Laar, 2005). Questionnaires might reveal a different lifestyle pattern
compared to other methods, such as diaries or lists of groceries. However,
this probably applies to CFS patients and people without CFS. The final
limitation is the reliance on cross-sectional data and therefore any claims
regarding causality cannot be made.

To put the results in a broader perspective, it would be interesting to
determine whether an unhealthy lifestyle is important in the onset of CFS.
For example, there are indications that low physical activity in childhood
increases the risk of experiencing CFS in adult life (Viner & Hotopf, 2004;
White, 2004). The direction of the causality could, however, also be the
other way around. CFS patients could change their lifestyle after the onset of CFS, as indicated in earlier studies (Grant et al., 1996; Woolley et al., 2004). CFS patients might choose to change their lifestyle, but they might also be forced to change their lifestyle. For example, someone who lives alone might be too exhausted to cook.


Acknowledgments

We thank all the patients who participated and everyone else who contributed
to the study.


Conflict of interests, source of funding and authorship

The authors declare that they have no conflict of interests.
No funding is declared.
MMG carried out design of the study, analysis and interpretation of data,
drafting of the paper, reviewed its content and approved final version of
the paper. HK carried out the design of the study as well as the
interpretation of data. GMS carried out the interpretation of data. GB
conceived the study and carried out the interpretation of data. All authors
critically reviewed the manuscript and approved the final version submitted
for publication.


Tables

Table 1. The percentage of chronic fatigue syndrome patients
         with an unhealthy lifestyle factor
----------------------------------------------------------
Lifestyle factors             Percentage of patients with
                              an unhealthy lifestyle % (n)
----------------------------------------------------------
Smoking                       23.0 ( 56)^*
Alcohol intake                 0.4   (1)
Fat intake                    68.8 (170)
Fruit and vegetable intake    72.9 (180)
Fibre intake                  95.1 (235)
Body mass index               32.1  (26)
----------------------------------------------------------
^* Data from four patients were missing with respect to
   smoking.


Table 2. Lifestyle factors of chronic fatigue syndrome [atients compared to the Dutch population.
-------------------------------------------------------------------------------------------------------------------------
Age   Sample     Smoking              Alcohol abstinence   Healthy weight       Overweight           Obese
(years)                                                    BMI 18.5=<25         BMI 25=<30           BMI=<30
                 -------------------- -------------------- -------------------- -------------------- --------------------
                 % (n)          P     % (n)          P     % (n)          P     % (n)          P     % (n)          P
-------------------------------------------------------------------------------------------------------------------------
Female                                              ______                                     _____
18-44 CFS        26.7 (32/120)  0.184 35.5 (43/121) <0.001 78.6 (33/42)   0.024 11.9 (5/42)    0.003  9.5 (4/42)    -*
      Dutch      30.6 (424/1384)      20.1 (278/1384)      63.8 (882/1384)      32.8 (454/1384)       9.7 (134/1384)
      Population
45-65 CFS        20.0 (11/55)   0.074 17.9 (10/56)   0.360 46.7 (7/15)    0.352 46.7 (7/15)    0.480  6.7 (1/15)    -*
      Dutch      28.1 (484/1722)      19.9 (342/1722)      51.6 (889/1722)      47.3 (815/1722)      13.9 (239/1722)-*
      Population
-------------------------------------------------------------------------------------------------------------------------
Male                            _____                                                          _____
18-44 CFS        20.5 (8/39)    0.008 25.0 (10/40)   -*    72.0 (13/18)   0.052 16.7 (3/18)    0.007 11.1 (2/18)    -*
      Dutch      39.5 (539/1356)       9.6 (130/1356)      52.9 (718/1356)      45.9 (622/1356)       7.5 (102//1356)
      Population
45-65 CFS        17.2 (5/29)    0.023 13.3 (4/30)    -*    33.3 (2/6)     -*    66.7 (4/6)     -*     0 (0/6)       -*
      Dutch      34.9 (589/1688)       8.2 (138/1688)      39.7 (670/1688)      59.9 (1011/1688)     13.2 (223/1688)
      Population
-------------------------------------------------------------------------------------------------------------------------
Overscore, P<0.01 was considered statistically significant.
* These differences were too small to test.
BMI, body mass index, CFS chronic fatigue syndrome


Table 3. Mean scores on the CIS-fatigue and SIP-8 of chronic fatigue syndrome patients with an unhealthy or a
         healthy lifestyle and the results of t-tests
----------------------------------------------------------------------------------------------------------------
Lifestyle factors   CIS-fatigue Mean (SD)                          SIP-8 Mean (SD)
                    ---------------------------------------------  ---------------------------------------------
                    Unhealthy   Healthy      t       d.f.   P      Unhealthy   Healthy      t       d.f.   P
----------------------------------------------------------------------------------------------------------------
Smoking             50.0 (5.1)  49.2 (5.3)  -0.974   93.6   0.333  1564 (554)  1537 (529)  -0.326   87.2   0.745
Alcohol intake      40.0 (-)    49.4 (5.2)   -        -     -      1195 (-)    1539 (535)   -        -     -
Fat intake          49.1 (5.4)  49.9 (5.0)   1.124  159     0.263  1510 (520)  1601 (563)   1.212  137     0.228
Fruit and vegetable 49.5 (5.1)  49.1 (5.7)  -0.505  108     0.615  1506 (524)  1625 (556)   1.527  112     0.130
  intake
Fibre intake        49.3 (5.3)  51.4 (4.6)   1.560   12.5   0.144  1526 (536)  1773 (444)   1.862   12.7   0.086
BMI                 47.7 (5.1)  50.2 (5.0)   2.118   48.3   0.039  1520 (519)  1565 (579)   0.352   54.4   0.726
----------------------------------------------------------------------------------------------------------------
BMI, body mass index; CIS, Checklist Individual Strength; SIP, Sickness Impact Profile.


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--------
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* * *
 
Speaking strictly for myself, when I am in remission, I buy a lot of fresh fruit/veggies from the Farmers Market and exercise daily.  When I go into relapse, I physically cannot do that; exercising or getting to the Farmers Market has been known to send me to bed for days.  Obviously, if I'm stuck in bed recuperating from the trip to the Farmers Market, I'm not in the kitchen preparing those fresh fruits and veggies -- I'm eating non-perishable items, like PopTarts and cereal bars, that need no refrigeration, cooking or utensils.
 
That's not a "choice", it's a necessity.  The alternative to eating preservative-laden snacks is not eating at all.
 
Whether in relapse or remission, I don't drink coffee, don't smoke, don't use illegal drugs, and rarely consume either fast food or alcohol.  Lifestyle was not a cause of the initial virus, and it has not been a cause of any relapse; every time I have relapsed, I've declined while eating properly and exercising, and have continued eating properly and exercising until I physically could not continue. 
 
 
 
 
 


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