Saturday, February 7, 2009

Chicken? Egg?

Evaluating obesity in fibromyalgia: neuroendocrine biomarkers,
symptoms, and functions.

Clin Rheumatol. 2009 Jan 27. [Epub ahead of print]

Okifuji A, Bradshaw DH, Olson C.

Pain Research and Management Center, Department of Anesthesiology,
University of Utah, 615 Arapeen Drive, Suite 200, Salt Lake City, UT,
84108, USA, <>
PMID: 19172342

The aim of this study was to investigate the associations between
obesity and fibromyalgia syndrome (FMS).

This study was conducted at the University of Utah Pain Management
and Research Center, Salt Lake City, Utah. Thirty-eight FMS patients
were included in this study. Neuroendocrine indices (catecholamines,
cortisol, C-reactive protein [CRP], and interleukin-6), symptom
measures (Fibromyalgia Impact Questionnaire), sleep indices
(Actigraph), and physical functioning (treadmill testing) were
measured. Body mass index (BMI) provided the primary indicator of obesity.

Approximately 50% of the patients were obese and an additional 21%
were overweight. Strong positive associations were found between BMI
and levels of IL-6 (r = 0.52) and epinephrine (r = 0.54), and
somewhat weaker associations with cortisol (r = 0.32) and CRP (r =
0.37). BMI was also related to maximal heart rate (r = 0.33) and
inversely related to distance walked (r = -0.41). BMI was associated
with disturbed sleep: total sleep time (r = -0.56) and sleep
efficiency (r = -0.44). No associations between self-reported
symptoms and BMI were found.

This study provides preliminary evidence suggesting that obesity
plays a role in FMS-related dysfunction.

* * *
At the time I had the virus that resulted in my CFS/FMS, I weighed about 125 pounds (below the acceptable minimum for my height).  As a result of virus-related changes to my metabolism, I gained weight, settling at a perfectly acceptable 140-ish.
As I started to slide into this relapse, my weight went up to about 155-160 (still acceptable for my height), although I had not changed my eating and exercise habits.  Then I became so debilitated that I couldn't exercise at all, and my weight went even higher. 
So, is it "obesity plays a role" in causing FMS, or is the real problem that FMS plays a role in causing obesity?

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Friday, February 6, 2009

ICD and Somatization

For some time now there have been concerns that functional psychiatrists and
indeed Action for ME were attempting to have Chronic Fatigue Syndrome,
Myalgic Encephalomyelitis and Post Viral Fatigue Syndrome reclassified out
of section G93.3 in the forthcoming ICD-11.

From the information I posted here, Action for ME has been passing monies
through it's accounts for a Somatoform Disorders Project and over £63,000
has been used with an apparent attempt to reclassify "CFS/ME" as a
functional somatoform mental health disorder.

At last years Royal Society of Medicine Conference, Professor Peter White
warned the audience against using the classifications of CFS/ME and PVFS in
ICD-10 and he stated that efforts were being made to sort this problem out.

Professor White stated that in his opinion "they (the problems with the
ICD-10) will be sorted out – God willing".

You can hear the audio from Professor White's RSM speech on the RSM website.
I have an audio clip of that quote if Professor White is in any doubt.

Thank goodness Senile Dementia has been recognised as a disease of the brain
and not as a behavioural disorder.

With both this comment and the recent finding of the Action for ME
Somatoform Disorder Project; enquiries have been made again with the World
Health Organisation in Geneva and I am posting a reply from Dr Robert Jakob.

Hopefully for the sake of long suffering patients who do not and never have
suffered from mental health disorders, this will be an end to the matter.


Stephen Ralph DCR(D) Retired.

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Hillary Johnson to Speak in London

Invest in ME - Conference News - January 2009

Invest in ME are pleased to present -

Dinner and Presentation: An Evening with Hillary Johnson
(author of Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic)

Hillary Johnson - the CDC Influence on ME/CFS Around the World - Thursday 28th May, London

Welcome to a pre-conference presentation and dinner with the author of Osler's Web - the book which clearly showed the extensive body of scientific evidence for the biological origins of Myalgic Encephalomyelitis (ME or ME/CFS) - [see IiME Newsletter October 2008 - ].

Invest in ME welcome Hillary Johnson with a special presentation of the way the US Centre for Disease Control has affected the way ME/CFS has been perceived, not just in America but around the world.

The evening will consist of presentation followed by dinner.
We expect great interest for this presentation and places are limited so we would advise an early booking.
In the first instance contact Invest in ME to reserve places by emailing us at this address -  

More details will be made available on the Invest in ME web site shortly.
For details of the 4th International ME/CFS Conference 2009 please visit the conference home page - [click here ]

4th  Invest in ME International ME/CFS Conference 2009
One Birdcage Walk, Westminster, London - 29th May 2009
Management, Treatments and the Latest Advances in Research into ME/CFS
Conference Home page     [ ]

Invest in ME
UK Registered Charity Nr. 1114035
Support ME Awareness - Invest in ME

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More from Tom K on definition of CFS

Exclusionary conditions or essential pathology?

John Mitchell jr   (23 January 2009)  Patient Support Advocate

One important criticism of the CDC CFS case definition as it stands is based
on the following sentences- "CFS is defined as persistent or relapsing
fatigue of at least 6-months' duration, that is not alleviated by rest, and
that causes substantial reduction in activities. The fatigue cannot be
explained by medical or psychiatric conditions and must be accompanied by at
least 4 of 8 case defining symptoms (unusual post exertional fatigue,
impaired memory or concentration, unrefreshing sleep, headaches, muscle
pain, joint pain, sore throat and tender cervical nodes)."

By including the misleading and out of context 'cannot be explained by
medical or psychiatric conditions', the authors set up a damaging catch-22
in regards to pathophysiology in CFS, being that if any underlying
pathophysiology is found then that patient is then excluded from further
. This makes sense if one understands that fatigue is a common symptom
of many illnesses and should not immediately be ascribed to CFS, however in
the context the author's use it, it ends up being as if pneumonia or Kaposis
Sarcoma were exclusionary conditions when studying AIDS, instead of
correctly being considered co-morbid conditions that are results of the
underlying disease process.

So although pnuemonia and Kaposis Sarcoma do happen in the population
without a person having AIDS, to exclude them from being co-morbid
conditions would be absolutely disasterous to AIDS patients; as many CFS
patients argue that excluding any thyroid involvement, elevated c-reactive protein, inflammatory disease, etc. is to them, especially when you consider that these are some of the very areas in which progress is being made by other groups studying CFS.[1,2]

1.Evidence of inflammatory immune signaling in chronic fatigue syndrome: A
pilot study of gene expression in peripheral blood. Aspler AL, Bolshin C,
Vernon SD, Broderick G. Behav Brain Funct. 2008

2.Neuroendocrine and immune network re-modeling in chronic fatigue syndrome:
An exploratory analysis. Fuite J, Vernon SD, Broderick G. Genomics. 2008 Sep

Competing interests



Another CFS study raises questions about the use of the RE subscale in a
definition of CFS

Tom Kindlon   (23 January 2009)  Irish ME/CFS Association - for Information,
Support & Research

Firstly, apologies for sounding like a broken record but the definition the
CDC proposes for CFS is an important issue - it tends to be the one adopted
by researchers around the world. The definition laid out in this paper
continues to be used in papers involving cohorts the CDC has gathered for
CFS population studies such as the papers using this cohort (which has been
analysed in numerous papers) as well as a later study in Georgia[1].

Fulcher (2000)[2] is another study which raises questions about the use of
the Role Emotional (RE) subscale of the SF-36 to select patients with CFS.
The study involved 66 patients with CFS without a current psychiatric
disorder, 30 healthy but sedentary controls, and 15 patients with a current
major depressive disorder. It found, amongst other things, that "the two
patient groups were significantly more incapacitated than the sedentary
controls on all SF-36 measures (p<0.001), except that the patients with CFS
were not significantly different in emotional or mental function." Also,
"the depressed subjects were significantly more incapacitated in emotional
and mental functioning than the patients with CFS
p<0.001)." These results
suggest that low scores on the emotional and mental functioning subscales of
the SF-36 do not seem to be an intrinsic part of CFS (if they're found, they
could be related to comorbid psychiatric issues). They also points out the
risks of using the RE subscale alone [especially given CFS shares some
characteristics with depression and so some people with depression (but not
CFS) could potentially score the required 25 points on the Symptom
Inventory] i.e. one could inadvertently include some people who have
depression but not CFS, as CFS patients

[1] Reeves WC, Jones JF, Maloney E, Heim C, Hoaglin DC, Boneva RS, Morrissey
M, Devlin R. Prevalence of chronic fatigue syndrome in metropolitan, urban,
and rural Georgia. Popul Health Metr. 2007 Jun 8;5:5.

[2] Fulcher KY, White PD. Strength and physiological response to exercise in
patients with chronic fatigue syndrome. J Neurol Neurosurg Psychiatry. 2000

Competing interests

No competing interests


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What's wrong with the practice of medicine today

On "ER" last night, they were treating a demented elderly man, who turned out to be a retired ER doctor. In one moment of lucidity, he provides a diagnosis that turns out to be better than what they've come up with themselves.
There's the problem with medicine today. The young doctors are looking at inconclusive lab test results and he's looking at the patient. He saw the one thing that told him their lab tests were steering them in the wrong direction, that the patient actually had something very different.
Lab tests can sometimes be wrong or misleading. But listening to the patient will tell you plenty. In his book, Dr. Groopman illustrates that it was the doctor who let the patient tell her story from start to finish who finally spotted what all the previous doctors had missed. He collected all the information and reached the correct conclusion.
Every medical history I've given about this damned disease has started off "I had a 104-105 fever for several days in February 1987 and haven't felt right since." There is absolutely no way that can be mistaken for the onset of depression, yet, how many doctors have done just that and given CFS patients the wrong diagnosis?
The most prominent history of CFS, "Osler's Web", is named for a Canadian-born doctor, Sir William Osler MD, who believed the best medicine came from observing patients. He advocated listening to the patients, an art which has been lost over the past decades, as lab tests have been promoted as the be-all and end-all.
The problem is, there's not a test for every single virus out there, and not every patient is given every test under the sun. Dr. Starlanyl observes "Just because standard testing shows normal values does not always mean everything is fine. It may simply mean that the proper tests have not been run." In my case, the tests which were done were those that should have been normal in CFS (i.e., they prove I don't have diabetes, lupus, etc.), and those that should have been abnormal were refused when I requested them.
Let's go back to teaching medicine the way it used to be taught – where the doctor's skills in listening and observation were paramount and lab tests were used to confirm a diagnosis, not to make it.
We need to go back to practicing patient-based medicine, not numbers-based medicine. Test results can be wrong or misleading. Listening to the patient is more accurate.

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Tuesday, February 3, 2009

Doctors, Zebras, and Learning to Listen

[This article comes up in PubMed if one searches for "Chronic Fatigue
Syndrome".  However, it discusses three (pediatric) case studies who were
diagnosed with other conditions so it's main value is to flag differential
diagnoses, as the subtitle suggests ("Physicians often need to look beyond
the obvious diagnosis"). Tom]

Minn Med. 2008 Nov;91(11):38-40.

Fatigue, exercise intolerance, and weakness: lessons on herding zebras.

Fischer PR, Johnson JN, Brands CK.
Mayo Clinic, USA.  i.e.

Fatigue, Exercise Intolerance, and Weakness

Lessons on Herding Zebras

Physicians often need to look beyond the obvious diagnosis.

By Philip R. Fischer, M.D., Jonathan N. Johnson, M.D., and Chad K. Brands, M.D.

In real life, their obvious stripes make zebras easily distinguishable from horses. The animals behave differently, too. When excited, horses rear up on their hind legs. Agitated zebras, on the other hand, plant their front legs and kick their hind legs backwards. How do we distinguish zebras from horses in medicine? Sometimes it's by how patients look, and sometimes it's by how they act. Often, though, our diagnostic acumen is clouded by our myopic view of our own patient populations. We overconsider the conditions to which we're most accustomed, fail to consider a longer menu of disease processes in broader categories, and come to premature closure on a patient's case by reverting to a list of problems we've seen frequently or recently.


What is the lesson from this case? When we see patients with symptoms we don't understand, we should look for patterns, consult colleagues, and search the recent literature.

<snip description of second case>
What did we learn from this case? We must be careful to follow up on subtle clues when seeing complicated patients. Even a seemingly minor piece of the puzzle, in this case a few elevated blood pressure readings, might turn out to be important. Also, we must be careful not to jump over contradictory evidence to reach diagnostic conclusions too soon. Finally, it takes an interdisciplinary team to solve complex cases and treat complicated patients.
<snip description of third case>
This case reminds us that a thoughtful and thorough physical exam can sometimes reveal otherwise hidden diagnoses.
Distinguishing Stripes
Sometimes in our PDR Clinic, we feel as if we're wandering through a herd of zebras. Not all the "stripes" on the animals are the same, and not every animal in the herd is actually a zebra. Navigating through clinical complexities is difficult, and we're still learning how to best diagnose and manage our patients. We do know that we must attentively listen to patients, paying attention to all potentially relevant historical information. We must be meticulously careful not to neglect any physical exam findings, even those signs that may be only subtly abnormal. Just as proceduralists pause prior to initiating invasive interventions, we must pause to consider diagnostic possibilities before jumping to conclusions based on incomplete information. We must seek regular input from colleagues and scour the medical literature. And, we need to develop good doctor-patient relationships grounded in trust and compassion that enable our patients to engage with us in the diagnostic evaluation and management planning.
* * *
And there's the big problem -- as documented by Dr. Groopman, many times a misdiagnosis results from not listening to the patient.  My own medical records include a number of places where the doctor allowed his imagination to fill in the blank, and thus wrote down false information.  Then, using that false information, reached an erroneous conclusion.
Dr. Bell has noted that the exam abnormalities in CFS are subtle.  Someone who knows what to look for will note them as being abnormalities that fit the pattern; someone who doesn't know a lot about CFS will dismiss them as unimportant.
Similarly, at first, CFS patients were dismissed as having "every symptom under the sun", and therefore, not credible.  We had to be imagining things.  When a neurologist reviewed the long list of symptoms, he made the connection the generalists had missed -- every one of these symptoms was indicative of Central Nervous System dysfunction. 
Too much arrogance at the entry of the diagnostic maze results in the necessary specialists not being called in to make those connections, and patients with legitimate physical problems being erroneously classified as mentally ill.  I've been told I'll never work full-time again because doctors were so hellbent on treating depression that I did not have that they missed all the opportunities to test for things that would have shown them there was a physical problem to be addressed.  By the time someone treated one of the major symptoms, I had deteriorated too far to ever dig myself back out of the doctor-created hole I was in.
The doctor I dealt with had a "myopic view" in which a divorced woman was always depressed and could never have anything else wrong with her -- even if she told him that, while married, she had been diagnosed with a post-viral neurological illness, which obviously had nothing to do with her marital status.  His myopic view of women resulted in permanent disability, but thank God his ego is intact because he didn't have to ask a specialist for help.  (And refused to accept the information in specialist reports that were provided to him without him asking.)
See also

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American Experience: Polio

Tonight's PBS "American Experience" was about polio.  As some of you may know, there are theories floating around that CFS is a milder version of the polio virus -- the vaccine protects against the 3 worst strains, leaving 69 variants you can still catch.
We need to do the same type of PR they did.  They took a disease that attacked a small percentage of the population, and left an even smaller percentage permanently disabled, and turned it into a Major Crisis.  Over $1M in dimes was sent to FDR as the start of the March of Dimes; they had a slogan to the effect that no one was too poor to send a dime to help a child walk.
We need to do some serious PR ourselves.  If we can  get every American to send $1, that's $300M for research.  I think that's more than the total that's been spent in the last quarter-century, and should be enough to finally get us (at the very least) a vaccine, if not a cure.

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Monday, February 2, 2009

What do the Disabled want from Other People?


What People with Disabilities Hope for from Other People

Robert Ronald, SJ, Taiwan, ROC

Please don't notice only our disabilities. They are the first thing that you see, but they are not the most important thing there is to know about us. We hope that when you see us you will say to yourself, "Here's somebody like me, who may have some abilities, interests or aspirations similar to mine. I wonder if there is anything I can do to help keep the disability from standing in the way of their realizations."

Please don't exaggerate our disabilities or suppose we're all alike. People have shouted at me as though I were also deaf and talked to me like a child as though I had never grown up. Or, because I'm in a wheelchair like their grandfather who just died, they think they know all about me. We hope that you will think when you see us, "Here is somebody who has something interesting to say if I will stop and listen. And something interesting to do if I'll give him or her the chance."

Please don't think of us only as people who cannot do things. We are just people who cannot do some things the regular way. I cannot walk from here to there, but with a good wheelchair I can still go from here to there. A blind person cannot see the words in a book, but with Braille can read the book. We hope that when you see us you will not say to yourself, "How sad that this person can't do the things I like to do or go the places I like to go or work where I do." We hope you will think instead, "Too bad about the limitations, but no matter. What kind of training or special equipment or ramps are needed, so that he or she can also do the things I like to do or go the places I like to go or work where I work?"

Please don't deny our disabilities or treat them lightly. They are something very real to us with serious, permanent effects on our lives. We hope that you too will acknowledge the difficulties we face and pitch in to help us remove the barriers and problems. If we are discouraged, encourage us not by distracting us to think of something else but by showing us practical ways of coping.

Please feel with us our grief and anger and frustration. Often the best way of handling such feelings is to get them out in the open where they can dissipate. Don't take as personal insult or rejection what we might say or do in your presence on such occasions. Instead of just telling us to shut up or to cool it, show us you understand and empathize with our point of view. But if we persist in bemoaning our losses, make your encouragement practical. Point out to us all the things we can do. Help us find a goal for our lives that appeals to us and which we can attain even with our disabilities. Then as our friend show us how to reach that goal.

Please don't think that we are all inferior and depressed and would rather stay with our own kind. Sometimes this is true, but if we manifest fear or hesitation or distrust or believe that we cannot do a lot of things, it is usually the result of bitter experience. Some people stare at us, avoid us, laugh at us, pity us, overprotect us. Everywhere we meet barriers. We have learned inferiority from being relegated to inferior status. What we hope for from you, therefore, is positive regard and feedback. We will more readily learn to value ourselves the more we experience you valuing us, accepting us as friends and associates, and providing us opportunities for participation, self-expression, growing and giving.

Please don't pity us. Disclosing horror or sadness at our situation only makes us feel worse. We need solutions not commiseration. Show us you believe these obstacles can be overcome. Show confidence that we can still lead wonderful, full lives. Don't deny the hard work or the difficulties that lie ahead of us, just help us move forward.

Please don't be afraid to notice our disabilities or ask questions, but do it right. Curiosity is not always bad, since asking each other questions is one of the best ways that friends have of getting to know each other. So look at us, ask all the questions you want, but just don't treat us like animals in a zoo without feelings. It is degrading when people pay all their attention to our wheelchairs, caring nothing about ' When you look and speak, do so in a way that shows respect for us as persons and interest in us as potential friends. And don't forget to give us a chance to know something about you, too.

Please don't make decisions for us or tell us what we should do. What we are and wish to do should not be defined by our disabilities but by the nature of our particular abilities, interests, aptitudes and ambitions. we may need your suggestions and advice for which we will be grateful. We may even need to be cautioned if we want to bite off more than we can chew, but remember, it is the size of my mouth and not yours that determines how much I can chew.

Please offer us help if you see that we need it. Please ask first whether the assistance is wanted; then ask how the help should be given. Do it as inconspicuously as possible. You may want the whole world to see that you are doing your good deed for the day, but we would rather no one noticed that we could not do things for ourselves.

Please be patient with us and fair. We people with disabilities are not perfect, nor always on our best behavior. In this, unfortunately, we are all too normal. Like everyone else, we are sometimes in the dumps and sometimes on cloud nine; sometimes lazy, demanding help we really don't need; sometimes stubborn, refusing even the assistance we do need; sometimes friendly, sometimes hostile; sometimes placid, sometimes angry. We do not ask you to ignore our faults. We should be accountable for our actions like everyone else. But at least show us as much tolerance for our short-comings as you show your other friends and colleagues for theirs.

Please don't tell us how wonderful we are because we smile so bravely or try so hard. In the first place, we already know it, having been told so a million times before. In the second place, this is actually rather discouraging. Here we are just trying to do the ordinary things every one else does all the time and someone gushes over us as if it were something extraordinary. This tells us the person really thinks our disabilities are awful and our capabilities low. Yes, we do have to try harder. Yes, we do deserve credit for the extra efforts we have to make, but we would much rather have you pitch in and help us reach the rest of our goals than just applaud what we have already achieved.

Please don't tell us we are already doing enough or to stop trying so hard. It makes some people uncomfortable to see us struggling with our wheelchairs or assistive devices or they want us to accept our disabled lot quietly, graciously submitting to the status of being served instead of trying to serve. Perhaps some of us have reached the limits of our capabilities or are content to maintain our present positions, but the decision when to stop should be ours, not yours. Many of us still have abilities and inner resources we want to develop and use, even if it is going to be difficult. Disability does not take away our right to pursue the full development of our potentials. Instead of preparing us a comfortable place to rest at the bottom of the stairs, we would rather you help us find a way to get up the stairs to where the action is.



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Marriage and Disability

Three-quarters of marriages affected by chronic illness end in divorce; the percentage is even higher when it's the wife who is ill. 
Here's some food for thought for those who are married or are thinking of getting married:

Joyce Ann Tepley's Marriage Axioms Involving a Partner with Post-Polio

1. No matter how hidden, polio is the third entity in the marriage.

2. The non-disabled partner must be able to identify with disability.

3. The effects of polio cannot be integrated into a marriage if the experience of polio is not integrated in the polio survivor.

4. It's not just the physical effects of polio that adds extra stress on a marriage. It's how the partners deal with the emotional and mental effects.

5. Disability tends to exaggerate all the ordinary issues of marriage.

6. When post-polio syndrome enters a marriage, "for better or for worse, in sickness and in health" must be dealt with sooner rather than later.

7. The partner with polio will most likely be an over-achiever.

8. When post-polio syndrome enters a marriage, the partner with polio must begin to do less and, consequently, the non-disabled partner must begin to do more.

9. For a healthy marriage, the non-disabled partner must have a degree of unselfishness and the disabled partner must have a degree of ego strength.

10. A good marriage is based on monotony (routine) and familiarity with occasional change. Too much change, too quickly makes the relationship unstable




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Sunday, February 1, 2009

Stomach Virus a Culprit in Chronic Fatigue Syndrome


"This is sort of a new beginning. Now we can have development of antiviral drugs," said the elder Chia, an infectious disease specialist in private practice in Torrance, Calif. "We don't have anything for these poor people, although we've tried a number of things. Now we can study how these viruses behave and how we can kill them."

Several different viruses, including Epstein-Barr virus, cytomegalovirus and parvovirus have been implicated, along with enteroviruses. There are more than 70 different types of enteroviruses that can affect the central nervous system, heart and muscles, all of which is consistent with the symptoms of CFS.

It was, however, difficult to find definitive proof of the viruses' presence. "That's how we judge a disease, if it causes organ damage or death, then it's a real disease," Chia said. "But if it doesn't show up, it doesn't mean it's not there."

"We realized this wasn't the way to look at it. The assumption we made about CFS that we have to find the virus in their blood is totally wrong, so we started looking for the viruses in tissue, meat."

A team of European investigators had found enteroviruses in the brain, muscle and heart of a CFS patient who had committed suicide. But brain and heart biopsies are virtually impossible to perform in living people.

Chia started looking in the viruses' "area of replication," meaning the stomach. The viruses are resistant to stomach acids.

"People were busy looking in the bloodstream, but he looked in the gut. He looked in the right compartment and, lo and behold, he found the viruses," she said. "It depends where you look, what you see."

* * *

Mine was definitely a stomach virus -- we thought I had the flu because I spent so much time in the bathroom.

It wasn't until much later that someone enlightened us that with the flu, your temperature rarely goes over 101; at 104-105, it was definitely a virus, and a bad one.


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