Wednesday, November 19, 2008

IACFS/ME Newsletter

IACFS/ME Newsletter

Volume 1, Issue 2 • November 2008


Leonard A. Jason, Ph.D.



Welcome to the second issue of the IACFS/ME Newsletter. As you know, the IACFS/ME now has a quarterly journal, which is called the Bulletin of IACFS/ME. If you would like to send a news article to our IACFS/ME Newsletter, or a research article to the Bulletin of IACFS/ME, send it to Greg, our business manager, at The most recent issue of our electronic Bulletin is at the following link, which is on our new website:
In this Fall issue of the Bulletin, you will find the following articles: "Evidence for T-helper 2 Shift and Association with Illness Parameters  in Chronic Fatigue Syndrome (CFS)" by Dr. Susan Torres-Harding and colleagues; "Fatigue in Myalgic Encephalomyelitis" by Dr. Ellen M Goudsmit, Dr. Bart Stouten, and Sandra Howes; "The Third IiME International ME/CFS Conference 2008" by Dr. Don Baken; and "A Little Bit of History" by Rosamund Vallings, MNZM, MB, BS.

In this issue of the Newsletter, you will learn of a most important activity of the membership committee. We are in the early stages of appointing people to the membership committee, who will represent countries from around the world. We will try to find student representatives for each country and can even appoint more than one person within a country. So, if you are interested in getting more involved in our IACFS/ME organization, be sure to read the attached article by Ken and Staci.

We are also happy to report that we received about 140 abstracts for our IACFS/ME conference, to be held in Reno, Nevada in March. More details about this conference are attached. The Planning committee has decided that we will entertain additional abstracts that might involve late breaking research news. So, if you were not able to submit an abstract, you will have one last chance to do this over the next few months. You will learn more about this last effort to send us an abstract in our next Newsletter.

We are now lining up a keynote speaker for the Reno conference, and that person's name will be announced in our next Newsletter. This conference will be our best yet, so be sure to register and attend. There will be workshops, a patient conference, papers on a variety of topics, posters, and a banquet.

If you have not yet joined our organization, be sure to do that, as the cost of membership is very reasonable and forms are attached that enable you to sign up.


Leonard Jason, Newsletter Editor


International Recruitment of IACFS/ME Members

IACFS/ME Biennial 2009 Conference - Reno, Nevada

Call for Award Nominations

Call for Student Abstracts!

Become a member! Click here to JOIN IACFS/ME


Cartesian Dualism in Understanding Illness

The Value of Cartesian Dualism in Understanding Illness.

A motor car engine is a relatively simple device. It is not subject to moods
or behaviours. When Basil Fawlty (John Cleese in Fawlty Towers) hilariously
berates his car for being obstreperous and thrashes it with a tree branch,
it is obvious that he is projecting onto the car and endowing it with a

Humans are highly attuned to behaviors in those around them. In evolutionary
terms success is dependent on such awareness. It is therefore not surprising
that behaviors should be projected onto automobiles and other non-thinking,
non-feeling objects. Thrashing a car for being 'naughty' might be going a
bit far, but is not inconceivable.

I've worked on many sick engines alongside talented mechanics. Sometimes it
took a great deal of work to discover the cause a dysfunction but we never
wasted time assuming the machine must be neurotic. Had we done so it would
have been a symptom of our own 'Fawlty' neuroticism
and might even have
indicated our need for some CBT.

If a device as simple as a car can go wrong then of course human bodies can
get sick. Deprive them of minute quantities of essential elements, subject
them to bacteria, viruses, parasites or expose them to toxic substances and
they will sometimes get very sick indeed. With such a complex organism
discovering the cause of the problem might not only be difficult, it could
be beyond the scope of present medical science.

It seems to me that some doctors are too ready to attribute illnesses to
psychological causes or claim that psychological factors are in some way
. People get illnesses and injuries, their body recovers and they
get on with their lives. Most people with M.E. have had experiences of
illness and injury that happened just that way and they expected M.E. to be
the same. I think this is illustrated by those whose debilitating symptoms
improve over time. They increase their activities accordingly to get as much
as possible from their lives.

In my opinion, attributing the ongoing disease in M.E. to 'maintaining
factors', 'illness beliefs' and 'secondary gains', makes as much sense as
thrashing a motor car with a tree branch.

So, who needs CBT?

Peter Kemp

* * *
It is not the patients who are disturbed, it is the physicians who are psychologically disturbed because they ignore the data, and whatever data there is, they manipulate it to say what they want it to say. -- Muhammed B. Yunus,  M.D.

Countess of Mar and Wessely

From Suzy Chapman
May be reposted

*...."People who know
absolutely that they are
right are very dangerous....*


*....I am greatly saddened that there is so much
hostility to the NICE Guidelines and, specifically, to

Countess of Mar, Letter to Paul Davis, RiME,
13 November 2008


Lord Hansard: 22 January 2004
Myalgic Encephalomyelitis debate  

1.39 p.m.

The Countess of Mar rose to ask Her Majesty's
Government whether they subscribe to the World
Health Organisation international classification of
diseases for myalgic encephalomyelitis (ME) under
ICD 10.G93.3 - neurological disorders.

The noble Countess said: My Lords, first, I must
declare my interest as patron of a number of
charities that represent people with myalgic


22 Jan 2004 : Column 1181

Since his arrival on the scene in 1987, Wessely has
repeatedly and persistently played down, dismissed,
trivialised or ignored most of the significant
international biomedical evidence of organic
pathology found in ME because it does not fit his
psychiatric model of the disorder
, for which he claims
to have developed a more intensive form of the
psychiatric intervention known as cognitive behaviour
therapy (CBT).

That consists of using intensive, mind-altering
techniques to convince patients that they do not
suffer from a physical illness
. It also includes forced
regimes of graded exercise to be supervised by a
Wessely school-trained psychotherapist aimed at
getting patients back to fitness.

Wessely school psychiatrists are about to receive
11.1 million, including 2.6 million from the Medical
Research Council, in an attempt to strengthen the

22 Jan 2004 : Column 1182

weak evidence that his regime actually works for
those with ME. Among his 53, largely undeclared,
interests it should be noted that he is a member of
the supervisory board of a company, PRISMA, that is
supplying such rehabilitation programmes as CBT to
the NHS for those with ME, even though such
regimes have been widely shown, at their best, to be
of limited and short-lasting benefit and, more
importantly, at their worst, to be
actively harmful to
those with the disorder.

The constant theme running through the Wessely
School's published papers is that ME does not exist,
that CFS is a psychiatric disorder and that the factors
that play an important role in the perpetuation of the
disorder include female gender, too much focus on
normal bodily sensations, discrete personality traits,
avoidance behaviour, learned helplessness, faulty
thought processes, lack of motivation, secondary
gain, inadequate coping strategies, interpersonal
conditioning and contagious sociological hysteria.

Wessely states that patients belong to,

"....a cult recruited from the environmental

and that those with ME,

"feel no guilt about their condition: sufferers from
mysterious illnesses that lie outside conventional
medical practice no longer consider themselves to be
oppressed by spirits and demons but by mystery
gases, toxins and viruses".

Wessely has made numerous statements about the
non-existence of the disorder that can only be
described as savagely cruel to the ME community. For
example, he refers to ME as a *myth*. He believes
that it,

"....should not be dignified by [its] own formal
        case definition and body of research...."

He asserts that symptoms found in ME,

"....have no anatomical or physiological basis....",

and that "muscle weakness is simulated". He
advises that, to the majority of professionals, ME

"....are indeed all in the mind...."

I can provide corroborative evidence of all those

Neither the fact that they may be wrong nor the well
documented errors of psychiatrists in the past who
authoritatively misdiagnosed Parkinson's disease,
multiple sclerosis, epilepsy, diabetes and
thyrotoxicosis as mental disorders before medical
science revealed their true aetiology, seem to have
occurred to the Wessely school.

It is certain that it, and it alone, is right.
As the
world-renowned psychologist, Dr Dorothy Rowe,
pointed out:

"...People who know absolutely that they are
      right are very dangerous...."


*The Countess of Mar is Patron of ME Research UK,
The Young ME Sufferers Trust, BRAME, The 25% ME

Suzy Chapman

* * *
It is obvious from Wessely's assessment of the situation ("female gender, too much focus on normal bodily sensations, discrete personality traits, avoidance behaviour, learned helplessness, faulty thought processes, lack of motivation, secondary gain, inadequate coping strategies, interpersonal conditioning and contagious sociological hysteria") that he's a man with a low opinion of women.  Pretty much everything in his statement is something that's been said in the past to oppress and devalue women.
One wonders, if he had been presented only with the 30% of patients who are men, would he have reached the same conclusion?
This attitude is pervasive in the history of CFS.  In the early days, Dr. Carol Jessop sent some of her severely ill patients to a renowned virologist.  He returned every one of them with an unwarranted psych diagnosis.  Then she sent a male patient who was nowhere near as sick as the women, and he came back with the diagnosis that he had a virus for which there was not yet a test.
As is typical in the experience of many patients, female doctors take female patients more seriously than male doctors, who, like Wessely, tend to blame everything on "female gender", female "personality traits", and female "hysteria".  I initially had my symptoms blamed on "you want to be a housewife" by a doctor who could not imagine that any woman would choose to work after she landed a husband.  To his mind, that virus was a red herring, the real onset of my symptoms was several months later was when I said "I do".

Tuesday, November 18, 2008

More on Correspondence with Dr. Gerberding

    The correspondence with CDC Director, Dr. Gerberding
took place before the recent discussion on the suitability of
Myalgic Encephalopathy as a substitute name to replace
Myalgic Encephalomyelitis.

    It is my thought at present that we need to continue
the traditional historical name & classification,
Myalgic Encephalomyelitis--neurological coding (G93.3),
in order to maintain the historical integrity of the criteria
& definitions already in place from Dr. Ramsey, Dr. Dowsett,
& Dr. Hyde.  The 2003 Canadian Consensus Criteria
for M. E./CFS would only be a possible candidate
for a rapid transition back to the original name, Myalgic
Encephalomyelitis, & use of criteria by Drs. Ramsey,
Dowsett & Hyde.

    This corrects the following proposed action listed
in the previously posted correspondence:
"4.  Australia has adopted the Canadian Clinical Case
Definition for their country along with the name,
Myalgic Encephalopathy/CFS.  This would be an
excellent & efficient example for us to follow."

     Included below is the letter that I wrote to Senator Feinstein
demonstrating that the response from Dr. Gerberding
did not in any way address my concerns about the
lack of recognition of a serious neurological disease,
Myalgic Encephalomyelitis.

Steven Du Pre
Poetry website:
"By words the mind is winged."  Aristophanes
Website for National Alliance for Myalgic Encephalomyelitis:


Letter to Senator Feinstein demonstrating that Dr. Gerberding
had not really addressed the concerns in my letter and
countering her flawed arguments against recognition of
Myalgic Encephalomyelitis has a serious neurological disease.
Also, I had asked that Dr. Gerberding view the DVD
presentation of "Engaging with M. E." by Dr. Malcolm Hooper.

The Honorable Dianne Feinstein
One Post Street , Suite 2450
San Francisco, CA 94104

Re: Response received from Dr. Julie Gerberding, CDC Director,
Department of Health & Human Services

Senator Feinstein:

            We very much appreciate your follow-up on the letter that
we sent to Dr. Gerberding. We received from you her response to our
letter.  She did not adequately address the concerns regarding the
classification of the neuroimmune disease, Myalgic Encephalomyelitis/
Chronic Fatigue Syndrome (M. E./CFS), as a neurological disease,
which the CDC failed to report in their initial findings of the
disease, thinking they had found a totally new "syndrome" when
actually it was only another outbreak of Myalgic Encephalomyelitis,
which had been in the World Health Organization International
Classification of Diseases since 1969, long before the CDC came up
with their 1988 name, definition and criteria.  In other words, Dr.
Gerberding does not address the failings of the CDC in the name,
definition and criteria, which has caused a lot of suffering by
patients and a lack of gold-standard targeted research because the
name, definition and criteria are inadequate reference points for the
disease.  The disease already had a descriptive name, definition and
criteria in place that should have been used.

            Our other major point was that the 2003 Canadian
Consensus Criteria which is an excellent instrument for clinical
diagnosis and published by a team of experts in the disease, has been
ignored by the CDC.  It could be used to correct an unjust situation,
and it has been tested and shown superior to the CDC 1994 criteria in
the following study by an expert researcher: The recent study by Dr.
Leonard Jason ["Comparing the Fukuda et al. Criteria and the Canadian
Case Definition for Chronic Fatigue Syndrome," J of Chronic Fatigue
Syndrome, Vol. 12 Issue 1, pp. 37-52, 2004] revealed that the
Canadian Case Definition is a far superior tool in the clinical
setting for diagnostic purposes. This is desperately needed, as many
patients are not diagnosed for years or over a decade due to lack of
competent clinical criteria, leading to tragic severe progression of
the disease.

            Jason cogently comments in the study that much of the
inability of research studies to reach consistent results is due to
the failure to work on research-based subsets under M.E./CFS, as well
as the inherent problems of heterogeneity caused by the CDC 1994
Fukuda criteria.  Fatigue, as commonly understood, is not the central
feature of the illness, but rather it's the relapsing and progression
of a number of specific neurological, circulatory, immune,
musculoskeletal- weakness like symptoms not contained in the CDC 1994
definition, all of which are described under the Canadian Clinical
Working Case Definition for M. E./CFS.

        Dr. Gerberding states that she has shared our previous letter
with the CFS Research Program at the CDC.  We would like a written
response from that CFS Research Program or from Dr. Gerberding
herself regarding the above-mentioned issues which remain on the
table. This disease affects approximately one million Americans and
millions more around the world - many of whom eventually die of
end-organ failure after years of bedridden or homebound suffering,
quite frankly due to neglect from the CDC.   We would also like to
know to whom we can send a DVD entitled "Engaging with Myalgic
Encephalomyelitis," a lecture given by Dr. Malcolm Hooper which
details the substantive reasons for the neurological classification
in the disease, M. E./CFS (ICD-9 323.9; ICD-10 G93.3).  This is a
one-hour DVD, which includes explanatory slides.


Steven Du Pre, Representing Capital Area CFIDS/M.E. Assoc.
&  Sacramento Valley CFIDS/M.E. Assoc.

Encl: Testimony Re: death of young person with M. E./CFS

This testimony was given to the CFSAC (The Chronic Fatigue Syndrome
Advisory Committee of the U.S.
Department of Health and Human Services) on Monday, September 12, 2005.
By Dr. Mary Schweitzer (who suffers from the neuroimmune disease,
Myalgic Encephalomyelitis/CFS)
On July 4, 2005, sometime between 2:30 am when his mother kissed him
good night, and 6:30 am when his father came downstairs, Casey Fero
died in his sleep. His heart simply stopped.
Casey Fero was 23.

Casey was a charming, friendly kid with blue-green eyes. He was first
diagnosed with CFS at the age of 9, then again at 15. He was plagued
by headaches, cognitive difficulties, muscle weakness, and exhaustion.
In addition to the symptoms of a serious illness, he had to endure
doctors who did not "believe" he was "really" sick, and teachers who
saw in him only a shirker.
By the end of his short life, however, he
was happy. He had just completed two years of community college and
was looking forward to beginning courses at the University of
Wisconsin. He had acquired a summer job. He had many friends, who
came to his home for days after he slipped away to mourn the loss
together. The family and Wisconsin CFS Association will honor Casey
with a blood and tissue bank for CFS/M.E. victims. We will pass the
flyer around at the end of this talk.

[The flyer was posted to Co-Cure yesterday, and can be found at .] In his mother's words, "Casey
had bull dog determination. In his mind, he had overcome all illness
and if he just worked harder he could do anything.... Interesting,
how he died so well, with so much enthusiasm to live." Most people in
this room are acquainted with Casey's mother, Pat Fero, President of
the Wisconsin CFS Association; Pat testified before this Committee
about a year and a half ago. You may also have met his father, Bruce,
and his older sister, Mikol Susan, when the Wisconsin group hosted
the October meetings of the American Association for Chronic Fatigue Syndrome.

Pat has had CFS since before Casey was born. She and Bruce sought
diagnosis and treatment for Casey, but as he passed into adulthood,
he no longer had a doctor of his own. Even at the University of
Wisconsin, there were no doctors who "believed in" the disease or,
for that matter, really believed Casey was sick. Casey carved his own
therapy out of over-the-counter and mail-order supplements such as
powdered whey protein and Co-Q-10.
Seeing the supplements, the coroner originally told Pat that this
would be their first "steroid" death. Even in death, the first
response was that it could not be CFS, because CFS is not a serious disease.
Last Thursday, September 8, Pat received the coroner's report. The
University of Wisconsin forensic pathologist found that:

**Casey died of myocarditis that is, his heart was infected with disease. There was inflammation, and the tissue was full of viral infection. Casey also had old fibrosis, indicating that the viral infection was not of a new onset.

**The pathologist was "shocked" at this finding.
Casey Fero died of Chronic Fatigue Syndrome.
Specialists on NMH said they knew of no cases where someone died from
that condition or had there been reason to suspect carditis was
involved in NMH.
Using an ultra-sensitive type of electrocardiogram, Dr. A. Martin
Lerner of Wayne State Univ. has found evidence that EBV &
cytomegaloviruses in CFS patients has caused heart damage.
I do not
know whether this research has been replicated, but under the
circumstances, it takes on a new importance.
There is evidence that HHV-6 can infect the heart. Other possible
culprits include Lyme Disease, mycoplasma, and Chlamydia.

PERCEPTIONS (or "oh, that's different!")

On a number of occasions, I've been taunted and bullied about thinking that I'm disabled by CFS.
Then I give them my whole list of ailments, and suddenly the perception changes – those are "real"!  I can't be faking those.  Some of them would be disabling in their own right.
From head-to-toe:
history of fainting dating back to age 5 (which makes it illegal for me to drive)
severe insomnia
blinding sinus headaches with documented infections
resultant eustachian tube blockage/tinnitus/sporadic hearing loss
bad vision: I haven't been able to see the big E for decades, and now am not joking when I say "what chart on what wall?" (thankfully, still correctable to 20/20, but long-since legally blind without glasses)
problems with depth perception (which would make it hazardous to drive if I weren't already illegal due to fainting spells)
shoulder damage from athletic injury and family history of shoulder bursitis
three fractured vertebrae in upper back
nasal and food allergies
chronic bronchitis dating back to childhood
bilateral wrist tendinitis and arthritis in both hands from years of overusing my hands
mild nerve damage in one hand/arm due to second and third degree burns
bad back at waist level due to athletic injury
arthritis in hip due to years of unnatural gait caused by...
post-traumatic arthritis in knee after athletic injury ...
which has also caused ankle pain from adjusting the way I balance
occasional pain in the other hip/leg/ankle/foot from a foot injury 
Hearing that I've been in near-constant pain since I was a teenager from that knee injury is so much more convincing than that I've been in near-constant pain from fibromyalgia for almost 10 years; they can argue with fibro being a figment of my imagination, but not the huge scar on my knee, or the doctors who have now started saying things like "how on earth do you walk on what's left of that knee?  It should be impossible!"
From my perspective, I can and did work through those problems for many years, and the real reason I'm disabled is the lack of stamina resulting from the CFS.  Maybe I would have gotten my Disability benefits long ago if I'd listed the reason as "arthritis"?  I'm sure doctors would've taken my complaints of pain keeping me awake more seriously if I had left out the CFS diagnosis and told them only about the arthritis; maybe I would've gotten pain pills years before I did, but some doctors didn't even feel it necessary to perform a full physical exam once they heard "CFS"!
For years, while living in the snow zone, I muscled my way up and down stairs using my biceps more than my locked knee all winter.  I didn't consider that "disabling" (just a PITA), so I certainly don't consider it "disabling" now that the knee doesn't lock up in winter.  Yet, apparently, that's a more convincing reason for me to avoid stairs than the neurological dizziness/balance disorder from CFS that makes stairs even more treacherous (can't catch yourself on the railing if you've lost consciousness), and if I started using a cane/crutch for that knee, I'd easily qualify for benefits because I use a mobility aid, but with the bad wrists/shoulders, I'm trying to avoid further damaging them and intend to struggle to walk unaided for as long as possible.

YouTube Documentaries: Art of Corina Duyn, "Fit to Fly"

I previously posted information on the documentary, "Fit to Fly: The Art of
Corina Duyn" i.e.
when the Irish ME/CFS Association (Irish ME/CFS Support Group as it was
then) helped launch it around ME Awareness Week, 2004.

I'm pleased to say that it is now available to watch for free on YouTube.

Corina has also produced a book, "Hatched" (which I also previously
highlighted).  Further details are on her website, .  A documentary was produced to accompany this
book.  It can be also be seen on YouTube.

I'm appending details below from Corina's YouTube channel.

Tom Kindlon



Fit to Fly DVD Part I and II

In 1998 artist Corina Duyn was diagnosed with the debilitating illness M.E.
The condition affected her personal and working life. Her body of work "Fit
to Fly" is a visual diary of her journey throughout this experience. In this
documentary the artist talks openly about her growth over the past years and
how her journey has informed her art making.
Filmed and edited by David Belgey 2003

The Flight Path Documentary, created by Katie Lincoln, accompanies Corina's
book Hatched, published in 2006.
Name: Corina

Artist and writer

Country: Ireland


In 1998 artist Corina Duyn was diagnosed with the debilitating illness M.E.
The condition affected her personal and working life. Her body of work "Fit
to Fly" is a visual diary of her journey throughout this experience. In this
documentary the artist talks openly about her growth over the past years and
how her journey has informed her art making. See also part II


Part II of "Fit to Fly" the art of Corina ...


The "Flight Path" documentary accompanies Artist and Writer Corina Duyn's
Book Hatched, published in 2006. The book and DVD follow the journey made
through the illness ME and the production of the book.

Media Coverage of Dr. Leonard Jason

Dr. Jason has recently been receiving some very good press coverage due to a
newly published book and grant on recovery homes.

The attached ad ran in the Chicago Tribune on  Nov 10th and will also run on
WBBM and WFMT radio (11-17 & 11-26) and the Chicago edition of the Wall Street
Journal (11-12 & 11-19).

While not specifically on CFS, it is mentioned as an area of study. As a
prominent CFS researcher, it is helpful to be getting this type of recognition
and media attention.
Dr. Jason has published a book called Rescued Lives 
It tells the story of about 10,000 people in the US who have founded Oxford
House, a network of over 1,200 recovery homes. Each is independently rented and
all self-governed. People can live in these houses indefinitely  for  about $100
per week. 

All profits from the sale of the books will be given to provide scholarship
money for graduate school.

Congratulations to Dr. Jason on this accomplishment. No doubt that many lives have been saved by these programs. This demonstrates the importance of community and what can be accomplished when government programs and services are not available. It should be possible to do something similar for people with ME.

Jill McLaughlin
IACFS/ME Membership Committee

Exercise no magic cure for Heart Failure

* * *
 [Note: This may be of interest given the cardiac insufficiency
hypothesis of ME/CFS.]

Exercise no magic cure for heart failure patients

     * AP foreign, Sunday November 16 2008


AP Medical Writer - NEW ORLEANS (AP) - Exercise can do a lot of good
for most people, but it apparently isn't much help to those with
heart failure, the fastest-growing heart problem in the United States.

The study, the largest ever of exercise in patients whose hearts
don't pump enough blood, left many doctors disappointed
. Results were
reported Tuesday at an American Heart Association conference.

Although there were some encouraging trends and clear benefits for
certain people, exercise failed to deliver on the main goal --
keeping people out of the hospital and improving their survival rates.

"It's a shame," said Dr. Harlan Krumholz, a quality-of-care
researcher at Yale University who had no role in the study. "Exercise
is not that magic elixir that we had hoped," at least for these patients.

About 5 million Americans have heart failure. It kills more than
300,000 of them and accounts for a million hospitalizations each
year. Those numbers are expected to grow as the nation's population gets

The condition occurs when the heart muscle weakens over time and can
no longer pump effectively. Fluid can back up into the lungs, leaving
people gurgling and gasping for breath as they struggle to climb
stairs or walk around the block.

Exercise has long been known to help prevent the clogged arteries
that develop in heart disease and to help heart attack patients
recover. But smaller, previous studies have made conflicting findings
about whether it helps heart failure patients or even is safe for them.

Doctors had hoped that exercise would prove as effective as drugs for
these patients, sparing them the cost and potential side effects.

The study involved 2,231 people with moderate heart failure in the
United States, Canada and Europe. It was led by Dr. Christopher
O'Connor at Duke University.

All of the patients were getting optimal medical care, with more than
90 percent on an ideal mix of medicines. Those who needed them also
had implanted heart devices to maintain good rhythm.

They were randomly placed in two groups -- one given usual care and
the other usual care plus an exercise training program. Exercisers
were given 36 supervised training sessions lasting half an hour three
times a week. After 18 such sessions, they were given a treadmill or
an exercise bike to use at home, for five 40-minute sessions each week.

Three months into the study, only half were exercising at least three
times a week for 40 minutes. After one year, only one-fourth were
exercising five times a week.

The fact so few stuck with the exercise program made it difficult to
show a positive result
, O'Connor said.

There were 796 deaths or hospitalizations among those getting usual
care and 759 in the exercise group -- a statistical draw.

However, after doctors adjusted for factors like how long people were
able to tolerate exercise, how badly damaged their hearts were and
rates of depression, they did find a modest but significant benefit
for exercise.

"It's disappointing," said Dr. Robert Eckel, a former heart
association president and an exercise specialist at the University of
Colorado at Denver. "You cannot make strong conclusions about subgroups."

Insurers now do not pay for exercise training for people with heart
failure, and "this study is not going to help" convince them to
start, Eckel said.

"We all would have liked to see a huge benefit to exercise," said Dr.
Lawton Cooper, medical officer at the National Heart, Lung and Blood
Institute, which paid for the study.

Still, for most people, "it is worth your while," Cooper said. "We
know there are all kinds of benefits of exercise."

Among them: quality-of-life improvements, said Dr. Ann Bolger, a
heart failure specialist at the University of California in San Francisco.

"Just the fact that it's safe is a huge deal," she said. "Patients
want to be in control and to be active," and this shows them they can.

One study participant -- Lise Coleman, 44, of Fayetteville, N.C. --
said exercise dramatically improved her life.

"When I first started in the program, I was a pitiful thing. By the
time I finished -- you know how they time you when you walk around
the track -- I was the fastest walker," she said.

Doctors in the study gave her an exercise bike, which she still rides
sometimes more than once a day. Her husband also bought her a
treadmill, and she bought an elliptical trainer.

"I love it. When you have heart failure, your mind wants to do more
than your body is able
," she said. "I can do more than I used to."
* * *
I would loooove to do more than I do -- "the spirit is willing, but the flesh is weak". 
As I was going into relapse, I tried to maintain my normal exercise routine, and it left me exhausted -- long before the excuse "deconditioning" would have applied.  After several weeks of rest, when I started to feel a little better, I tried to return to my normal exercise routine and my symptoms increased again.
It was not till I read the Cheney article referenced above that I realized just what my body was telling me.  Lerner and others have also found viral heart damage in CFS.  When you start to consider yourself a cardiac patient, your mindset changes; I no longer felt the need to "prove" to people that I wasn't too lazy to do my own housework -- no one would fault a heart patient for hiring a cleaning lady.  In fact, a lot of people would scold her for overdoing if she didn't!
Perhaps this research will stop doctors from thinking that exercise is a cure-all.  I've had doctors turn it around in their mind till it made sense to them that I got sick because I stopped exercising and therefore, I'd feel better if I re-started.  Nice try, but that doesn't exactly resemble my report that I stopped exercising because exercise made me feel sicker; when walking to work leaves you too exhausted to do any work, it doesn't bode well for exercising your way back to health unless and until the health problem causing the exhaustion is being properly treated.
A lot of my quirky symptoms (racing heart, feeling I'm not getting any oxygen, etc.) were explained by the CFS cardiac research. 
Then a cardiologist who was supposed to administer the tests in the Cheney article (which he clearly hadn't read, although I mailed it to him a couple weeks before my appointment, suitably highlighted) instead gave me a treadmill test (a definite no-no for CFS patients).  He was puzzled why I was gasping for breath and on the verge of collapse, and my heart rate still wouldn't go into the target zone; the literature he hadn't read would have answered that: CFS acts as a governor on the heart to prevent it going into overdrive and causing further damage.  As he left the room, he commented "we know the reason for your shortness of breath is not your heart" (we already knew that problem was  asthma!), and I realized he hadn't read a darn thing in my file.  He had no idea what he was supposed to be testing for, and didn't even know that I have asthma.  (Another reason I shouldn't have been given a treadmill test; there's a way to test the same things with an injection and the patient sitting in a chair.)  


Assessment of Work Capability

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>>>> 15 November 2008  <<<<
Editorship :
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Official Journal of the
Irish Medical Organisation

IMJ Online Paper

Assessment of Fibromyalgia & Chronic
Fatigue Syndrome: A New Protocol
Designed to Determine Work Capability
– Chronic Pain Abilities Determination

M Kelly, R Gagne, JD Newman, C Olney, C Gualtieri,
D Trail

Dr Michael Kelly – with his characteristic energy and
enthusiasm – played a significant part in bringing
this paper to fruition.

Sadly, he passed away shortly before publication,
and we, his fellow co-authors, dedicate the paper to
his memory.


The objective was to design a protocol to assess
work ability in people suffering ill-defined painful and
disabling disorders,
the outstanding prototype of
which is fibromyalgia/chronic fatigue syndrome
(FM/CSF).Following an extensive literature search,
the most appropriate components of current methods
of assessment of physical and cognitive abilities
were incorporated into the protocol, occasionally with
appropriate modification to suit the specific
requirements of the individual. The initial part of the
assessment consists of a standard history taking,
principally focusing on the patient's self-reported
physical and cognitive abilities and disabilities, as
well as the completion of established pain and
fatigue scales, and relevant disability
questionnaires. Following this, physical and cognitive
abilities are objectively assessed on two separate
occasions, utilizing computerized hand-held
dynamometers, inclinometers, algometers, and force
dynamometers. Specific work simulation tests using
the industrial standards Methods-Time-Measurement
testing are availed of, as is aerobic testing using the
Canadian Aerobic Fitness Test (CAFT).

Objective computerised neuro-cognitive testing are
also utilised as an integral component of the
. All results are then subject to specific
computerized analysis and compared to normative
and standardised work-based databases. The
designed system produces reliable, consistent and
reproducible results. It also proves capable of
detecting any inconsistencies in patient input and
results, in addition to being independent of any
possible assessor bias. A new protocol has been
designed to determine the working capability of
individuals who suffer from various chronic disabling
conditions, and represents a significant step forward
in a difficult but rapidly expanding area of medical


Chronic painful or debilitating disorders such as
Fibromyalgia (FM) and Chronic Fatigue Syndrome
(CFS) are a common cause of work disability1,2.
There are no pathological, radiological, or laboratory
findings that establish diagnosis or degree of
disability. This study is not structured to confirm or
refute diagnosis but rather to assess ability to work
as the individual variation in degree of disability
between FM/CFS sufferers is so great. Traditional and
even newer physical and psychological assessments
used to detect degree of disability in other disease
states, have severe limitations when applied to
Therefore improvement in quality and
reliability of work assessments is a matter of great
importance. Also necessary are more objective
testings, in so far as can be achieved. These tests
need to be reliable and reproducible. Furthermore
they must be independent of patient variability of
effort that is often not taken into account in such
settings. At the very least, inconsistency of patient
reliability must be readily detectable. Assessments
should further be free of examiner subjectivity, a
factor again which is not taken into account, and
could explain the reason for very large discrepancies
noted between the most eminent of doctors. Whilst
there might be little difference in medical opinion
with regard to diagnosis, there is often a substantial
disparity in opinion on work capacity.

To overcome these issues, many doctors use
traditional Functional Capacity Evaluations (FCE) to
assist them in their assessment of work capacity.
The traditional FCE is however more suited to assess
ability/disability in the better recognized diseases
such as arthritis or discogenic spinal disease. There
are however a number of important concerns with
using the FCE in more ill defined disorders such as
FM and CFS, or indeed other chronic pain states. The
traditional FCE does not consider the 'good day/bad
day' phenomenon, which this group of patients
frequently complain of. Conclusions are drawn on the
basis of a single assessment which may be on a
good or bad day. The traditional FCE does not
address sustained work capacity over an eight-hour
day in spite of the fact that easy fatigability is a
common symptom. Pain levels are not monitored pre-
and post-exercise to document the effects of
exertion on the patient. Evaluations often do not
include exercise capacity testing which is often a
problem for FM/CFS patients and has an important
role in determining cardiovascular endurance and
abnormal fatigue. Testing of reproducible physical
activities to the limit of endurance and
comfort are not performed. Cognitive tests are not
part of the current FCE protocols.


It is important to bear in mind that this protocol is
designed for assessment of work capacity. The
physical and cognitive components of the
assessment are performed on two separate days,
with an intervening rest day. An integral part of the
system is the inclusion of a new software programme
that assesses the acquired functional data. In
addition to assessing physical capacity it can detect
any inconsistency or failure of effort on the part of
the patient (whether it be conscious or
subconscious). The results of the tests are then
compared to well established and peer reviewed
normative3,4,5 and work referenced databases.6,7,8
The new protocol has four sections. Firstly, a clinical
history is taken with specific regard to describing
symptoms, aggravating and alleviating factors that
might affect work capacity, and activities of daily
living. Note is made of past and current treatments
as well as their efficacy and side-effects. At review
after a 24-hour rest period, any alteration in
symptoms is documented. Secondly, as the
assessment is one of work ability, specific, validated
scales and questionnaires play an important role in
the qualification and quantification of pain,
discomfort, and fatigue, which are common in such

Well established scales and questionnaires are
therefore used, which include the Fibromyalgia
Impact Questionnaire (FIQ); the Chalder Fatigue
Scale, to measure the affects of CFS on a patient
over the multi day period in an effort to qualify
fatigue patterns; the Visual Analogue Scale (VAS) to
measure pain prior to, during, and post-assessment;
and the Beck Depression Inventory. All responses are
collated and scored by the protocol software. The
FIQ and VAS are repeated on day two of the
assessment. Thirdly, a number of physical tests are
carried out, which include, grip and pinch strength
testing, using a computerized hand-held
dynamometer; a range of spinal movements are
tested, using computerized inclinometers; tender
point assessment is measured using a computerized
algometeri9-12 (three control sites are tested to
ensure reliability); static strength testing13-15 is
undertaken using a computerized force dynamometer
for strength determination; specific work simulation
tests are performed using the industrial standards
Methods-Time-Measurement (MTM) tests, which
allow for the extrapolation of test data to work
ability over an average 8-hour work day; and aerobic
testing using the six minute walk test16, and/or the
Canadian Aerobic Fitness Test (CAFT).

These physical tests are performed on both day one
and two of the assessment. Finally, as cognitive
impairment can be a symptom of FM/CFS and often
includes poor concentration, poor memory, learning
difficulties, "brain fog", and poor problem solving
capabilities17, the CNS Vital Signs assessment
(CNSVS)18 which comprise a number of well
researched and reliable computerized tests of
neuro-cognitive function is undertaken.
battery of tests is designed to take less than 30
minutes on each test day, and contains five specific
elements which are, visual memory testing (VMT) for
immediate and delayed memory recall; symbol digit
coding (SDC) for visual perception and complex
attention ability; the stroop test (ST) for reaction
time and information processing; shifting attention
test (SAT) for ability to shift from one instruction to
another; and the continuous performance test (CPT)
for sustained attention and reaction time. These
cognitive tests are repeated on day two of the


The protocol is designed such that strength and
range of movement are measured and compared to
abilities estimated over an average eight hour work
day. It can identify those who have cognitive and
physical impairment and assess its degree, and
further identify those who consciously or
subconsciously exaggerate their disability. This
protocol utilises an extensive combination of valid
and reliable physical and cognitive testing. It is
performed over a two day period, with a rest day in
between. This is just one of the features that will
prove more acceptable to both patients and their
doctors. Furthermore, it both incorporates testing
over a period of time and takes into account the
effect work may have on the patient's symptoms.
The fact that the results of testing are compared to
both normative and work referenced databases
should further clarify matters and be a major help to
doctors who assess work capacity in such patients.
Following testing and analysis of the computerized
results for range of movement, strength, specific
work activity simulation, aerobic endurance, cognitive
capacity, fatigue measures, and pain levels
, it is
possible to extrapolate and compare the patient's
performed abilities against their required job
demands, providing an informed objective conclusion
as to their return to work capabilities.

Both the physical and cognitive computerized tests
will also provide information on the reliability of
effort demonstrated by the individual throughout the
two days of testing.

This protocol is designed only to assess work ability
and does not in any way supplant the role of medical
practitioners or replace medical assessment. FM and
CSF are examples of disorders without standard
medical tests to confirm or refute their presence or
absence in any given individual. While there are
diagnostic criteria laid down, they are neither
sensitive nor specific, with many authorities
questioning their usefulness in clinical practice. It is
not surprising therefore, that assessment of
disability in such patients is very difficult. This novel
protocol should be of value to patients, their doctors
and also to independent medical examiners. The
protocol is the first to effectively incorporate
systems which address all the main areas of concern
expressed by specialists about current disability
assessments in people with FM/CSF in particular, and
more generally concerning many ill-defined chronic
pain syndromes. In addressing all concerns, great
care was taken in the design of the protocol to
eliminate as much subjectivity as possible on the
part of the examiner and patient alike. The new
methodology will provide the necessary factual
evidence required to support the medical opinion.
This protocol should represent a significant forward
step in assessment of work ability in a very difficult
area of medical practice.


1. Wolfe F. Fibromyalgia Syndrome: A Consensus
Report on Fibromyalgia and Disability. J Rheumatol
1996; 23:534-9.

2. McCain GA, Cameron R, Kennedy JC. The problem
of long term disability payments and litigation in
primary FMS. J Rheumatol 1989; 16 (suppl 19):

3. Mathiowetz, V et al. Grip and Pinch Strength:
Normative Data for Adults. Arch Pys Med Rehab
1985; Vol. 66: 69-72.

4. Mayer TG et al. Progressive Iso-inertial Lifting
Evaluation: A Standardized Protocol and Normative
Database. Spine 1998; Vol 13: 993-997.

5. Guides to the Evaluation of Permanent Impairment
American Medical Association; 4th ed: 112-135.

6. Prabhu, V. & Baker, M. (Eds). Industrial
Engineering: Techniques for Improving Operations

7. Long. Revised Handbook for Analyzing Jobs 1991
Washington, D.C.; U.S. Government Printing Office,
McGraw Hill. 1991.

8. Maynard, H.B., Stegemerten, G.J. & Schwab, J.L.
(1948). Methodstime Measurement. New York:
McGraw-Hill. 1948.

9. Okifuji A, Turk DC, Sinclair JD, Starz TW, Marcus
DA. A Standardized Manual Tender Point Survey.
Development and Determination of a Threshold Point
for the Identification of Positive Tender Points in
Fibromyalgia Syndrome. J Rheumatol 1997; 24:2.

10. Pekka, J. Reliability, Validity, Reproducibility of
Algometry in Diagnosis of Active and Latent Tender
Spots and Trigger Points DOI:
10.1300/J094v06n01_05 Copyright Year: 1998: 61 -

11. Pekka J. Algometry in Evaluation of Trigger Points
and Referred Pain. DOI: 10.1300/J094v06n01_04
Copyright Year: 1998: 47 - 60.

12. Russell IJ. The Reliability of Algometry in the
Assessment of Patients with Fibromyalgia Syndrome.
Muscle Pain Syndromes and Fibromyalgia: Pressure
Algometry for Quantification of Diagnosis and
Treatment Outcome. Journal of Musculoskeletal Pain
1998; Vol. 6.

13. Chaffin, DB. Pre-employment Strength Testing:
An Updated Position. Journal of Occupational
Medicine 1978; Vol. 20.

14. Badges D. Work Practices Guide to Manual
Lifting, NIOSH.

15. Chaffin, D. Ergonomics Guides: Ergonomics Guide
for the Assessment of Human Static Strength.
American Industrial Hygiene Association Journal July

16. Pankoff BA et al. Reliability of the 6 Minute Walk
Test in people with Fibromyalgia. Arthritis Rheum
2000; 13: 291—5.

17. Hudson JL, Pope HG. The Concept of Affective
Spectrum Disorders. Mallieres Clin Rheumatol 1994;
8: 839-856.

18. Gualtieri, CT & Johnson, LG, Reliability and
Validity of a Computerized Neurocognitive Test
Battery, CNS Vital Signs. Archives of Clinical
Neuropsychology 2006; 21: 623-643.

Authors' details for correspondence' (i.e., Name,
Address, Email, etc.)

JD Newman
FormHealth Ltd., 51 Colney Hatch Ave,.
London N10 1LJ, UK

No References

© Copyright 2004 - 2005 Irish Medical Journal

* * *
And therein lies the problem: I can do almost anything once.  According to the Jamar Dynamometer test, I have grip strength of 50+ pounds.  What it doesn't tell you is that after I've been using my hands for 8 hours straight (typing, stitching, whatever), I may not be able to lift a cup without using two hands.
I've been evaluated for about an hour at a time, and I can usually function for an hour on the adrenaline rush of exam pressure.  I can also schedule my naps around the exam.  What no one has ever done is evaluate me over 8 hours.  My testimony that I could work for a maximum of 2 hours and then had to nap for 2 hours was never substantiated by testing.  It was extrapolated from my ability to function for one hour that I could function for 8 hours, which is not the case.  In fact, if they were to sit me at a desk and tell me to do something for 8 hours, I'd probably pass out from sitting upright that long, or fall asleep at the desk, or, if I was typing, start dropping things as my hands reach the point of paralytic muscle weakness.
And, the fact that I "could" get to work on Monday does not prove that I could get to work on Tuesday; the last time I tried an office job, the exertion of commuting the first day made the second day very difficult; the third day I was in bed till the very last minute I could leave the house to get to work on time and fell on the couch the instant I walked in the door, and stayed in bed the next two days trying to recuperate.  Eligibility for disability benefits is based on the inability to "sustain employment", i.e., if you work 8 hours Monday and then have to stay in bed till the following Monday, working Monday doesn't prove you're employable.  You've got to be able to show up reliably, 5 days a week.
Here's a Work Feasibility Evaluation that I got from a VocRehab expert:
Feasibility Evaluation Checklist Program in Occupational Therapy Washington University School of Medicine  Section 1 - PRODUCTIVITY Quantity - amount of dependable work output Quality - quality of dependable work output Attendance - reporting to work on assigned days Workplace Tolerance - remaining in the workplace for the assigned duration Timeliness - Reporting to work and returning from breaks on time Work Task Instructability - ability to perceive, understand, and follow work instructions Work Task Memory - ability to remember instructions, procedures and rules Concentration - ability to focus attention on assigned tasks  Section 2 - Safety  Adherence to rules Use of proper body mechanics  Workplace safety: auditory, visual, tactile, balance Use of protective behavior  Section 3 - Interpersonal behavior Accept direction from a supervisor Adjust to different supervisory styles Follow through with accepted directions response to fellow workers response to change general worker attitude
If you can't do those things successfully (and most CFS/fibro patients are going to have a lot of trouble with Section 1), then VocRehab is not going to think you can work.  Unfortunately, what VocRehab says and what the judge thinks are sometimes two very different things.


CFS Medical School Scholarship

VT CFIDS Association Establishes Medical Scholarship Fund
Rik Carlson (left) President of the Vermont CFIDS Association (Chronic
Fatigue Immune Dysfunction Syndrome) received a check for the establishment
of a medical student scholarship at the University of Vermont Medical
School. The check was presented by Dr. Kenneth J. Friedman (right) of
Pawlet, VT on behalf of P.A.N.D.O.R.A. (Patient Alliance for
Neuroendocrineimmune Disorders and Organization for Research and Advocacy).
Dr. Friedman serves on the Executive Board of Directors as Secretary and is
also Chairman of the Public Policy Committee of P.A.N.D.O.R.A.

The award to the Vermont CFIDS Association was made in recognition of Dr.
Friedman's leadership and efforts to enhance Chronic Fatigue Syndrome (CFS)
education in the State of Vermont. This award was made also to honor his
contribution, commitment, and accomplishments on behalf of the national
community. The scholarship is modeled after the program he created currently
running in all three of New Jersey's medical schools. Since most medical
schools do not include CFS in their medical school curriculum, the
scholarship program supplements medical student education so that physicians
in training can obtain knowledge about this illness.

The CFS medical student scholarship program will be operational in the
Spring of 2009 and will encourage medical students to research Chronic
Fatigue Syndrome during the summer between their first and second years of
medical school. The student who writes the best essay, as determined by an
evaluation committee, wins the scholarship.

Dr. Friedman: "The medical student scholarship program is designed to
supplement rather than compete with the medical school curriculum. By
encouraging students to learn about CFS in the one summer that they are not
involved in classes, we encourage a productive use of their time.
P.A.N.D.O.R.A. will expand its award program to other states soon."

The Vermont CFIDS Association is one of only three organizations selected
nationally and was hand picked by P.A.N.D.O.R.A. for its outstanding efforts
in educating the public, passing legislation to allocate monies for a
physicians' diagnosis and treatment manual for Chronic Fatigue Syndrome and
helping direct those afflicted to the best resources for coping with and
treating the symptoms of their illness.

CFS or CFIDS is estimated to debilitate between 1 and 4 million Americans,
and creates an estimated $9 billion annual loss to the American economy.
(Centers for Disease Control and Prevention (CDC). It strikes men, women and
children of all races and social backgrounds. It is life long and a cure
remains elusive due to its complexity. Among its main symptoms are "bone
crushing" fatigue not alleviated by rest, cognitive impairment, "flu-like"
symptoms with or without debilitating muscle pain, long-term respiratory
infections, gastrointestinal disorders, and other progressive neurological
impairments leading to disability and the destruction of family life.

The 5 year grant will be disbursed as follows: $1,050 for the first year of
the award, $1,050 for the second year, $750 for the third year, $500 for the
fourth year and $250 for the fifth year of the award. The intent of the
gradually diminishing awards in subsequent years is to encourage the Vermont
CFIDS Association to identify donors and benefactors who will sponsor the
program in future years to ensure the program will remain successful.

The Vermont CFIDS Association is proud to be the first organization to be
selected for this national scholarship award program.

About P.A.N.D.O.R.A.:



Letter from Peter White

I'm appending a letter from Peter Denton White (PDW) in latest ME Essential

I've never written a letter to an ME publication up to now but I think I
will be doing so now.

I would encourage others to do likewise. People within the ME Assocation
may feel they have to give him a reply. That doesn't mean we now can't
reply to what he's written.

Three ideas that came quickly to mind for me:

- Peter White may think "CFS/ME is heterogeneous" but he doesn't say he
thinks the treatment is homogeneous.  Given he clearly support Graded Exercise Therapy
(GET) for some, that means GET (or related rehab strategies) for all and
little else. He made the point about homogeneous treatment at the RSM:
Quote from his abstract:
"The likelihood is that CFS is heterogeneous, a conceptual change that is
already helping to elucidate pathophysiology, while it is still useful to
regard CFS as homogeneous when considering treatment."

- Some quotes from the Barts submission on the draft NICE guidelines.  i.e.
Peter White is the Clinical Champion (joint lead) for the service.  I think
they are from the "other side" - they're not from "my side" anyway.

- PDW's claim at the RSM that the more symptoms, the higher the risk of
I showed the major flaw in the study he quoted in a post at:  i.e.
"Challenging the argument (from Peter White (and others?)) that: having more
symptoms in a definition isn't a good method of defining CFS (and hence in
particular the Canadian criteria are bad)

I will probably only be able to use one or two of these in any reply I send
so others can feel free to use the suggestions. There are almost certainly
lots of other ways to reply. The greater the variety perhaps the more
letters they will publish. They won't want to publish anything libellous I
imagine but that doesn't mean one can't challenge Peter White.

Peter White may feel he's got the last word; I don't think that should be
the case at all. I hope to take the opportunity he has "given us" to
challenge it. I encourage others to do likewise. Perhaps Peter White needs a
bit of "aversion therapy" to tone down his confidence a bit i.e. some
critical letters of what he says.  He and some other people with similar
view get too much of an "easy ride" in my view.

The MEA are happy to receive letters from non-members on the subject - here
is a quick message that was posted in reply to a similar message to this on
a list.  They weren't thinking of me as I'm a member

~~~~~start of MEA message~~~~~
We are more than happy to consider well written, non libellous
letters from non members!

All we ask is that people follow our general guidance (set out
below) - especially the need to keep them short (350 words max) and
to the point.
~~~~~end of message~~~~~~~~~~

The E-mail address is:  that's meessential @

I want medicine to offer me more than rehab strategies.  I think Peter White
and people of a similar view are in effect blocking me and others accessing
other treatments (and tests) medicine can offer us [as well as blocking me
getting other supports out there (as can be seen from the Barts comments
references above) (except with regard to disability aids if I were to pay
the full cost myself)].  I think we need to take a stand.

Tom Kindlon


Professor White on our coverage of his keynote lecture at the RSM

Dr Charles Shepherd reviewed what I presented at the recent Royal Society
of Medicine confer-ence on chronic fatigue syndrome in your July edition of
ME Essen-tial.

I was intrigued to read two things in particular. Most importantly the
piece was titled "We take a trip to see what arguments were put up by the
other side". Although some people believe there are two sides in
understanding CFS/ME, this view is not supported even by reading Dr
Shepherd's account of what I said and comparing it with the account on the
previous two pages of the Invest in ME conference held around the same time.

As just one example, both Dr Jonathan Kerr and I believe that CFS/ME is is
heterogeneous, as in deed does Dr Lenny Jason, the first speaker at that
conference. As is often the case in both science and medicine, speakers at
both conferences will have had more to agree about than disagree; such as
CFS/ME exists and is probably heterogeneous. Does it help advance
understanding to speak in polarised terms of opposing camps of "them and
us"? Or is it better to simply judge the evidence in its own right?

My second point is that, although Dr Shepherd does a reasonable job in
summarising what I said, it will be more accurate for readers to see for
themselves that, for instance, my first important slide (number 6) was all
about myalgic encephalomyelitis (G93.3) and not neurasthenia.

Professor PD White


Your Letters

We welcome your letters and emails for publication.

$ Comments are welcome on articles in the current issue of ME Essential. Or
you can open up a completely new topic.

. We prefer short letters (up to 350 words) that cover one or two topics but
are willing to consider longer letters on more complex issues.

. Please make it clear if you are happy to have your name and location
included. If not, we are willing to say 'Name and address supplied'. Email
letters are noted as (Name), by email'
- your email address will not be listed unless specifically requested.
. We reserve the right to edit letters for brevity. If a
significant editorial change is required, this will be
checked with the writer.
. (Copied from last newsletter) For publication in the
October issue, please make sure we have your letter by the beginning of
Write to: ME Essential.
60 Broadgate, Weston,
Spalding, Lincs PE12 6HY.


PANDORA CFS Knowledge Center

P.A.N.D.O.R.A. -  Patient Alliance for Neuroendocrineimmune Disorders
Organization for Research and Advocacy, Inc.

P.A.N.D.O.R.A. Introduces and Welcomes to our
worldwide community!

Coral Gables, Florida - 11/12/2008

For some months now,  Dr. Ken Friedman , one of our distinguished directors
of our executive board and I have been actively collaborating with
cfsKnowledgeCenter, Inc. a newly formed Florida Not for Profit organization,
as members of its Board of Advisors.

The mission of this rapidly evolving project,  is
to build a worldwide, use-collaborative Internet CFS/ME/CFIDS Community of
those of us who are either afflicted with CSE/ME/CFIDS, or are otherwise
affected by it.

The project will also produce a series of seminars around the country
featuring active dialogue between the audience and world renown experts on
the disease. The first of the seminars will be held Saturday, December 13,
2008 in West Palm Beach, Florida.

The featured speaker will be Dr. Benjamin Natelson, of the Pain & Fatigue
Study Center in New York City who will present a unique program of
patient-physician interaction.  Dr. Natelson is an expert in both CFS and
fibromyalgia.This will be an event which I am sure all of us will find
informative and stimulating on our respective paths towards wellness.

For ongoing updates & information about this patient- physician interactive
educational event please go to or email
here. ( , that's events )

The Internet initiative seeks to build:
.    A cfsCommunity we can turn to for information and guidance on fighting
the disease which has so drastically impacted our lives.
.    A cfsCommunity where we can share our stories and knowledge with those
who really understand what it means to struggle with CFS/ME.
.    A cfsCommunity where we can identify those doctors, and other
practitioners and services, who understand CFS/ME and are able to help us
alleviate its symptoms and associated problems.
.    A cfsCommunity which will keep us up to date on local, as well as
worldwide, CFS/ME  organizations, services and events.
.    A user-collaborative cfsCommunity website whose structure and
development each of us can help guide.

As you know, there are a number of websites, our included in which varying
amounts of this information is available to varying degrees of success.
Frankly, that is precisely the problem.
.    There is no one source which has all of the information we need, let
alone one which keeps it current and up to date.
.    Nor is there a place where we can freely exchange information, and
stories (in both video and written formats).
.    Nor is there a place with a global reach and which is easily found even
by those who are unaware of its existence but nonetheless searching for
information on, and local resources for CFS/ME.

Ken and I would like to encourage you to visit .
We invite you to join the community which it seeks to create, and share your
knowledge and experiences. You can even create your own webpage on the site
(a brand new feature that has just been added to the site).We also invite
you to keep checking back to the site regularly to as enhancements to the
innovative website are being introduced weekly.


The driving force behind cfsKnowledgeCenter is a semi-retired executive, Dan
Moricoli (pictured on the right).  Dan, who is a search marketing expert,
has been afflicted with CFS/ME/CFIDS since May, 2006. He is bringing his
expertise in Internet marketing to this much needed initiative. He has a
number of innovative ideas in mind for the new website which is still in its
most formative stages.

We encourage you to provide Dan and his team with YOUR feedback on the
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Comments on Reeves' Workshop

Permission to repost.

Thanks to Tom Kindlon for providing a link to Dr William Reeves workshop on
CFS at:

I admit that commenting on parts of only the condensed form of the workshop
(the visual presentation), may omit information that could be explanatory,
such as Dr Reeves commentary.

Page 71
'Management of CFS
Don't blow them off and attribute everything to CFS
People with CFS can develop medical & psychiatric diseases'

It may be due to economy of words but the remark gives me the impression
that if not for the risk of developing a (real?) disease it would be
acceptable to dismiss a person with CFS.

Reeves et al (2005), observed:

'Finally, our findings highlight the importance of continued
evaluation of persons with CFS.... Not all new symptoms
or worsening of severity should be attributed to CFS
a priori. Thirty-two (13%) of the study participants had
serious medical or psychiatric diseases diagnosed for the
first time during this study
and another 18 (7%) were
newly discovered to have melancholic depression,...
Those 49 subjects had been repeatedly evaluated
during the Wichita surveillance study and had no prior
evidence of such conditions.'

Reeves appears to be aware of a risk that a CFS patient can develop a new
illness that could be overlooked, presumably because the patient has a CFS
label.  Would the warning be required if CFS was a 'real' illness and
patients were taken seriously?

Another remark on page 66:

'About half the people with symptoms of
CFS have a serious underlying medical or
psychiatric condition'

This appears to be an alert to the risk of misdiagnosing an underlying
'serious' condition as CFS.  50% of people with these symptoms will have 'a
serious underlying medical or psychiatric condition', the other 50% will
have CFS.

A person with symptoms of CFS having a serious underlying condition is
different to a person with CFS developing a new disease.

The prior includes the risk that the patient could then be misdiagnosed with
CFS.  The latter has the risk that the new disease could be overlooked
because of the CFS diagnosis.  Both situations present a potential

If an underlying or new condition could be exclusionary for diagnosis with
CFS, would this condition or its discovery effectively 'cure' a patient of
CFS by disqualification?

If not, then does it follow that a patient can have CFS and an exclusionary
illness at the same time?

I imagine there must be a protocol for what happens when a person with CFS
is found to have an exclusionary illness and I'd be grateful if someone
could explain.  I realize they would no longer be eligible to participate in
research into CFS, but what is their official diagnosis?

On page 30, Dr Reeves asks:

'But, is it real?'

(If the question were, 'are patients really ill?', my answer would be,

But as to the question, 'is it [CFS] real?', my answer would be, 'No'.  I
think CFS is either misdiagnosis on a grand scale and/or an impractical
construct.  Any attempt to describe, research, diagnose or treat within such
a construct is going to encounter problems.

Dr Reeves has remarked that CFS is very heterogeneous and Dr Reeves, the
Fukuda group and others have remarked on the need for sub-grouping.  This is
work that some are doing and I hope will result in definitions, diagnoses,
testing and treatments for real, definable illnesses.

I get the impression that Dr Reeves is trying to be convincing about CFS but
who is he trying to convince?  I speculate that for some skeptics the only
thing that will be convincing to them is strong scientific evidence - a
prerequisite for acheiving this is likely to be proper sub-grouping so that
evidence is purified/amplified.

A fair number of researchers have furnished medical science with evidence of
measureable abnormalities in some of their CFS participants, e.g. excessive
lactic acid following exercise.  Discovering the causes of these seems an
obvious way forward but may require great commitment from researchers.  In
the first place it might require ignoring a CFS diagnosis which amounts to;
'you have symptoms x,y,z and we don't know what is causing them.'  When CFS
is viewed as an unacceptable 'get-out' diagnosis then perhaps the boundaries
of knowledge will be pushed to discover the real cause of a patient's

For example, a recent article by Miklossy et al (2008) provides strong
evidence that borrelia burgdorferi, the bacteria that causes Lyme disease,
can persist in protective cystic forms in different parts of the body
including the brain; and may induce cellular dysfunction and apoptosis.
What other bacterias or viruses or even helminthic parasites might persist

I accept that it is necessary for patients and doctors to have a term they
can use now, but I think CFS should be viewed only as an unsatisfactory
interim diagnosis, until each patient is diagnosed with the real cause of
their symptoms and disabilities.  I think research is the way to achieve

Doing something practical to help patients and their doctors with workshops
about CFS is surely worthwhile but until CFS is deconstructed into properly
definable illnesses, there will never be a solution to the problem of
diagnosis and management of unknown multiple disparate illnesses under an
umbrella term.

Best Wishes,
Peter Kemp

Miklossy Judith, Sandor Kasas, Anne D Zurn, Sherman McCall,
Sheng Yu1 and Patrick L McGeer. (2008). Persisting atypical and cystic forms
of Borrelia burgdorferi and local inflammation in Lyme neuroborreliosis.

Reeves, William C, Dieter Wagner, Rosane Nisenbaum, James F Jones, Brian
Gurbaxani, Laura Solomon, Dimitris A Papanicolaou, Elizabeth R Unger,
Suzanne D Vernon, Christine Heim. (2005). Chronic Fatigue Syndrome - A
clinically empirical approach to its definition and study. [online].

* * *
One of the most-serious problems CFS patients face is doctors who assume that everything is related to their CFS.  My doctors apparently had x-ray vision, because with a family history of colon cancer, they kept insisting that my symptoms were from the CFS, couldn't be cancer, even though they were the same symptoms that got my father diagnosed with cancer.  When I finally got to the gastroenterologist and explained why it had taken years after the symptoms started before I was able to get a referral to have them checked out, he muttered "I hope I find something so you can sue them for all they're worth".
And, unfortunately, a patient dying or a malpractice suit is the only way that some doctors will learn that CFS does not confer full immunity to every other medical condition.  New symptoms "may" be caused by CFS, but need to be checked out in the same way that you'd check out the same symptoms in a healthy patient.  Only when a colonoscopy reveals no physical reason for the problem should the doctor conclude it's caused by the CFS.


Monday, November 17, 2008

Holiday Pot Luck Suggestion

At this time of year, many support groups have holiday pot lucks.
A lot of us have allergies (mine are onion and soy).  Obviously, I stay away from the things that I expect to contain one or the other, like spaghetti sauce or any casserole labelled "Vegan".  But I have found one or the other smuggled into every pot luck dish imaginable; I swear one of these days some creative cook is going to find a way to hide onions in her chocolate cake.
Could people please include an index card with their pot luck offering listing the ingredients? 
Or perhaps the group leader could google up a list of the Top 10 Food Allergies (I know onion, soy, dairy, wheat, but I'm not sure of the other 6) and create a checklist for people to fill out on arrival and tape to their serving dish.  Maybe also indicate sugar/sugar-free/aspartame for those who are diabetic or sensitive to artificial sweeteners?
I'd really hate for the party to be ruined by a bunch of us writhing on the floor, clutching our abdomens, praying to die because someone put something in the casserole that we weren't expecting.  (As happened when a friend decided to "prove" that I couldn't tell the difference between the real thing and a soyburger ... she fooled my tastebuds, but within 20 minutes, I knew exactly what she fed me, and she saw for herself that this wasn't just some excuse because I didn't want to give up steak.)
Feel free to circulate this to any organization you belong to that has pot lucks.


David Bell resigns from the IACFS/ME

It is sad to report that the Fall 2008 IACFS/ME Bulletin will be Dr. David Bell's last issue as Editor, and he will be leaving the Board. He has served in a most important position, as the IACFS/ME Bulletin has grown significantly over the past few years.

Dr. Bell has been a mainstay in the community and has been the champion of children and families who are struggling with this illness. He has been on the forefront of research, presenting at conferences worldwide, has served as Chair of the CFSAC (HHS - Chronic Fatigue Syndrome Advisory Committee) and has been  a dedicated patient advocate.

His presence will be greatly missed by the scientific as well as patient community.

Jill McLaughlin
IACFS/ME Membership Committee