Saturday, May 10, 2008

An Oldie But Goodie

Dr. Daniel Malone, a rheumatologist on the staff of the University of Wisconsin Hospital and Clinics, discussed chronic fatigue syndrome and fibromyalgia syndrome at Spring Seminar '98 on March 21 at the University of Wisconsin Hospital.

Dr. Malone began his remarks by stating, "Of course, you can't treat a disease intelligently unless you understand it. In order to treat this disease, we have to try to figure out what could be causing it."

"I'm privileged to be privy to information that's pretty new as a result to having been invited to a couple of conferences over the past several years that have been held on the west coast. The point of these conferences was to bring together people who would have something to contribute to this subject. I'm going to share with you some of the new things that are going on." "The definitions of chronic fatigue syndrome and fibromyalgia syndrome differ. If you look at it in the political sense, it may not be advantageous to separate the two entities in terms of funding, foundations, etc. Clinically, the two conditions are probably more similar than they are different."

Dr. Malone then projected a slide that depicts symptoms of fibromyalgia. The definition of fibromyalgia is 'pain all over, without other explanation, that lasts 6 months or more, with 11 of 18 tender points that measure four kilograms or less in their pain threshold.' In chronic fatigue syndrome, the clinical definition is a little more detailed. It includes symptoms not included in the fibromyalgia description __ fever and immune dysfunction. Slide two is a continuation of the list of symptoms (see Table 1).

Table 1. Symptoms of Fibromyalgia

Cognitive dysfunction Dyslexia Short_term memory loss Trouble finding words Difficulty concentrating Difficulty calculating Tingling sensations in extremities Feelings of swelling in extremities Substance abuse/addictive OCD Shin pain Foot pain Low back pain Hand pain Poor endurance Poor stress tolerance Frequent/prolonged infections Hair loss Blurred vision Winter worsening of symptoms Achiness Cold intolerance Weight gain Irritable bowel/bladder Bruxism TMJ PMS Multiple chemical sensitivities Rashes (eczema, rosacea) Allergies Anorgasmia low/absent libido Food craving (sweet, DHO, salt) Migraines Non_restorative sleep Severe daytime somnolence Severe daytime fatigue Low motivation Depression Low self esteem

"There is a huge overlap between fibromyalgia and chronic fatigue syndrome in the sense that they so many of these clinical manifestations," continued Dr. Malone. "There are some differences. In my experience with about 300 patients, the main differences appear to be that chronic fatigue syndrome patients have fatigue as a more disabling or prominent symptom. They appear to have more immune dysfunction as evidenced by frequent infections, fever and swollen lymph nodes __ called lymph adenopathy in 'medicalese.' Other than that, the two conditions are quite similar. I look at this as one might look at diabetes. In diabetes, you have a wide variety of clinical manifestations. It's the same basic problem which is lack of control of blood sugar, but some patients have significant amounts of kidney disease; other patients have a significant amount of arterial blockages; other patients have nervous system problems with the peripheral nerves _ the nerves of the fingers and feet that aren't working properly. They're all called diabetics."

"You can look at this group of chronic fatigue syndrome and fibromyalgia patients, and I include post_traumatic stress disorder and Persian Gulf illness, because if you look at the symptoms from those other two illnesses you find the same list that I just showed you. (See Table 1) I look at these as basically a central nervous system disorder with different subsets. We don't understand what causes these subsets and why they differ. Until we know what the nature of the basic disorder is, we are not going to know the rationale behind the clinical separations."

Dr. Malone posed the question, "How do you make meaning of the 30 or 40different symptoms I showed you? There are symptoms that involve the gastrointestinal tract (GI tract), immunological_related symptoms, symptoms of psychiatric disease like depression, sexual malfunction, plenty of endocrine dysfunction. We are talking about basically every system in the body.

How do you conceptualize an illness that has so many manifestations? People have recognized this illness since the mid_ 1800s and have been biopsying muscles since the early 1900s and looking at the tissue under microscopes and haven't been able to find much wrong with the muscles. They've done nerve conduction velocity studies on the tingling nerves of such patients and find that the nerves conduct electricity just fine. They've biopsied bowels with fiberoptic instruments that can take little biopsies of the bowel wall of people who have irritable bowel syndrome, and they find no abnormalities. How do you justify disabling symptoms and not be able to see anything under the microscope?"

"I think that the problem is not in the peripheral organs; the problem is not in the bowel or the muscles or the peripheral nerves. The problem is in the control center. The metaphor I use is of a building, an Ameritech (telephone company) building. All of the wiring comes into the building where they have their computers and their switching controls. The wires go out to your house and my house where there's a telephone. If your telephone's not working, something's has malfunctioned at the control center. You can take the telephone apart and try to figure what's wrong, and what are you going to find? Nothing. You can look at the telephone wire and try to figure out if there's something wrong and you won't find anything wrong with the wire. You can go to each person's house and do the same thing. But you won't find anything because the problem is in the control center."

"If you invoke the problem in the control center of all these physical symptoms (of CFS and FMS) you could explain how it would all malfunction. What system contacts every other part of the body? The nervous system and the blood vessels. Which system is easier to study? The blood vessels __ you can biopsy those. Their function is to form a tube that carries a fluid. We have biopsied the blood vessels and have found no problem there. So that leaves the nervous system. And that is a problem because the nervous system's control center is not as accessible as the blood vessels are. Our nervous system's control center is the brain which is encased in a very impenetrable skull. Furthermore, it has all the functions of a three_story control center in a very small area, which means that everything is very compact. It's like trying to diagnose what's wrong with a computer chip by looking at it."

"We have an input plug and an output plug to our brain. If we do an MRI scan of that brain, what are we going to see? Nothing, most of the time. We have to go at the problem indirectly. Most researchers recognize that the problem with chronic fatigue syndrome and fibromyalgia is in the control center."

"In what part of the brain do these problems exist? We know that it's not the outer part. We all know that the brain has control over virtually every system. We think that the problem in CFS and FMS is in a dysfunction in one or more of the control centers. What I'm going to do is take an example of a manifestation and show you how we have come to think that one of the control centers is probably responsible."

"For the first example, let's take the GI tract. How can the intestines and the stomach be controlled by the brain? Anyone who has taken a test or given a talk and gotten nervous standing up in front of a group of people knows that the brain has control over the rest of the body. Some people get diarrhea or nausea or sweat before a performance. This is central nervous system emotion control of peripheral organs. That tells you right there that there has to be a connection. Of course, it works both ways. The spinal cord has plenty of signals coming down from the brain, but you have to remember that the brain can only do what it's told. It can only react to what's going on peripherally down in the organs. So there's also a traffic of information coming up. And that becomes very important when we talk about pain. Irritable bowel syndrome is a common complaint in fibromyalgia and pretty common in chronic fatigue syndrome. Therefore there is a control center that is very closely wired to the emotional system called the limbic system."

"In the brain, each of the thousands of functions is wired to each of the others. It involves, movement, sight, coordination, memory, etc. In chronic fatigue syndrome, fibromyalgia and chronic pain syndromes, many systems can be messed up. It could be that there is a problem in that particular system or that the input from several other systems is not correct. In any case, multiple systems are going to malfunction _ the GI tract, blood pressure control systems, temperature controls systems, weight control systems. That's the way most researchers are thinking about these illnesses, and that's the way they are approaching the study. Is there a single problem that has a ripple effect that affects everything else? Is there a set of problems that affect the control centers? Is it the cross talk? We have very limited knowledge about these questions at this point. In the future, as we get better neuroimaging techniques and better electrophysiological techniques, we can start to figure these things out."

Dr. Malone continued by posing the question, "Now, what about pain? Certainly,in fibromyalgia, pain is the overriding clinical manifestation. All incoming signals have to travel through the thalamus to the cortex of the brain, and one of the jobs of the thalamus is to act as a filter. It's thought that, in fibromyalgia, the thalamic filter is not working correctly. It is constantly being bombarded by sensory input, light touch input and temperature input, all the time,most of which is filtered out. But if I step on a tack while I am walking up here to talk to you, that becomes very important __ it is traveling with all the other information, but it is more important to my survival. The thalamus has to be able to push that up to my consciousness and say, 'Hey, you just stepped on a tack. Pull your foot away and react. 'The thalamus has to be able to send up that message and filter everything else out."

"In fibromyalgia, that filter isn't working, and it's not working to the degree that noxious stimuli get transmitted up to the cortex as being painful. It's not too difficult to understand how a person with fibromyalgia can have total_body pain without even being touched. I have patients where I can press on their shoulder muscle with one kilogram of pressure, and they have major pain. (Four kilograms of pressure is enough to turn your finger tip white when you press on a table.) In fact, this is pain. If you think it hurts, it hurts. In 97% of the female population of North America,one kilogram of pressure is not enough to cause pain, but in 3% of the population, who have fibromyalgia, one kilogram of pressure can cause pain. It's a central nervous system malfunction."

"All of these central control centers are in the same region of the brain. Why is depression so common in fibromyalgia and chronic fatigue syndrome? The limbic system is very close by and is closely wired to the sensory systems. Whatever parts of that central nervous system are not working correctly are going to cause clinical manifestations. Why is this so difficult for most of the medical community to accept than other necrologic diseases? Probably because the output is subjective. It is hard to measure. 'I'm fatigued.' 'I hurt.' How do you measure these? It's very easy to measure the neurological malfunction if you have Parkinson's Disease because it affects one of the motor control centers. The tremor can bemeasured. Fibromyalgia and chronic fatigue are also control center malfunctions, just a different one __a much more difficult one to measure."

"If you do an MRI on someone with Parkinson's Disease, do you know what you find? No abnormality. So when someone tells you that your head MRI is normal and there can't be anything wrong with you, that's nonsense. All that tells you is that the test we have used is not sensitive enough to detect an abnormality or is not the right test."

"Nerve cells talk to each other electrochemically. At the junction, called a synapse, there is set of electrochemical reactions that allows the current to go from one nerve cell to another nerve cell. That's how the whole nervous system works. Anything that disrupts this function could result in a malfunction of the circuit. It will appear normal microscopically and normal on the MRI. And since we can't stick probes into peoples' brain stems to measure current flow along these circuits, we have a poor way of evaluating the function other than to note what the output is."

"What are some of the things that have been found? The research really started in earnest when people realized that this must be a brain disease. So they started looking at the endocrine system. What are some of the hard evidences that have been found to mobilize these lesions or malfunctions to the brain stem? We know that in 2/3 of fibromyalgia patients (and I have no doubt that if we looked at CFS patients we would find a high percentage as well), have low growth hormone. Growth hormone is important for bone mineral density __ how much calcium you have in your bones. It has many other functions as well. It promotes muscle development; it protects against the development of coronary atherosclerosis. And growth hormone secretion is completely controlled by the central nervous system."

"We've studied a lot of endocrine hormones involved with the stress system. That involves cortisol and its control hormones. Again, what causes the secretion of cortisol, which actually comes from the adrenal gland, are signals from the pituitary gland. The pituitary gland gets its signals from the hypothalamus. The endocrine system has most of its control centers up in the central nervous system. We know that the secretion of cortisol, if you look at it over a whole day, isn't different from normal. But cortisol isn't secreted in a constant fashion. It goes up and down andhas close ties with circadian rhythms which are the biorhythms that govern sleep, wakefulness, menstrual cycles and many other things. So the nature of cortisol secretion has been found to be quite abnormal in patients with chronic fatigue syndrome and fibromyalgia."

"If you look at the makeup of this audience, you will see that it's four_or_five_ to_one, females to males. That's because there are that many more females than males who have the disease. Obviously, there must be some role of the sex hormones in this whole thing, which are controlled by the brain. The testes and ovaries that secrete these hormones are peripheral, and when you biopsy test them, there is nothing wrong with them. It's the control center that isn't working. This has all been shown to be true."

"What about sleep? If you take a rat, and you deprive a rat of sleep for a long time, the rat begins to lose its hair, get infected and behave in a very different fashion, and within several weeks, the rat is dead. That proves that sleep, in higher organisms, is a very important thing. Unless this brain of ours gets proper sleep, it malfunctions in a major way. It also tells you that bad things happen peripherally __ hair falls out, infections appear, etc. We have some understanding of what controls sleep. Most of the controls of sleep rhythms are in the central nervous system. Other areas of the brain open what is called, sleep gates. In normal people, sleep gates open between nine and midnight and about four in the afternoon, which explains why even people without CFS or FMS get a little sleepy at that time. People who take siestas are just succumbing to their biorhythms.""When you go to sleep, you go into stage 1 pretty quickly, and then stages 2, 3, 4 and REM, and then you come back up and spend some time in stage 3 or 4. Stages 3 and 4 are considered to be restorative phases of sleep __ very deep sleep. It's the lack of these two stages that appears to kill the rats. Fibromyalgia and CFS patients spend virtually no time in stage 3 or 4 sleep. They bounce up and down between stage 1 and 2 and REM and wakefulness. Every two hours, you wake up, and you can't get back to sleep. The biorhythms that control sleep are messed up. We don't have the chemical knowledge of how it's messed up." "The immune system is an area that is exploding in terms of its importance and its breadth of knowledge in the research community. There is an emerging of neuroimmunology founded on certain facts. There is clearly a connection between the central nervous system and the immune system. What's the evidence? First of all, certain neurotransmitters (chemical signals which allow current to flow between nerves) such as dopamine and seratonin have receptors on lymphocytes. There arc receptors for those neurotransmitters in lymph nodes and in the spleen. Those are immuno_competent organs __ organs that are very important in the immune system function. It is clear that interleukin_1, a cytokine, causes fever. When you get an infection, the immune cells get activated and start secreting all these different chemical messengers to elicit a body_ wide response, one of which is fever. Where is fever generated? In the central nervous system. That's just one of hundreds of examples of a cytokine that can act as a neurotransmitter."

"Do I see chronic fatigue syndrome or fibromyalgia as a static or dynamic disorder? Do we experience differing plateaus that change over the years? Certainly. I view it as a dynamic process in that symptoms wax and wane depending on a lot of factors __ stressors, the weather, menstrual cycles, etc. In some people, it gets worse with time, and in others it seems to plateau and remain about the sauce. Dr. Jay Goldstein tries one medicine after another to try to affect neurotransmitters. If one works, you stay with that one."

"What about weight gain? In the brain stem, there appears to be a set of weight control centers that, as a thermostat acts, they act. Everybody has a thermostat that governs how they handle calories. You can handle calories one of two ways. You can make heat or you can make fat. There appears to be a center in the brain that, probably chemically, affects what the balance is swinging toward __ heat or fat. Some of these chemicals are starting to be identified now. That's why phen_fen worked __ because it affected dopamine and seratonin. Along with improving fibromyalgia, it also had an effect on that weight control center that shifted it from fat toward heat. So, weight came tumbling off of people as fast as if they had not eaten at all. It wasn't necessarily related to appetite suppression. The average weight loss continued for about six months."


Dr. Daniel Malone is a rheumatologist at UW Madison. He spoke in May to the WI CFS Association. This article is from "Lifeline" the quarterly newsletter of the Wisconsin Chronic Fatigue Syndrome Association, Inc. Vol. 11, No.2 Summer 1998 pages 5_8.

Friday, May 9, 2008

Significance of Sleeping/Waking Brain

The significance of the sleeping-waking brain for the understanding
of widespread musculoskeletal pain and fatigue in fibromyalgia
syndrome and allied syndromes.

Joint Bone Spine. 2008 May 2 [Epub ahead of print]

Moldofsky H.

Faculty of Medicine, University of Toronto, Sleep Disorders Clinic of
the Centre for Sleep and Chronobiology, 340 College Street, Suite
580, Toronto, ON MST 3A9, Canada.

PMID: 18456536

The clinical focus of rheumatologists on the widespread pain and
numerous tender points in specific anatomic regions in their patients
who show no evidence for disease pathology has lead to the
characterization of such peripheral symptoms as a specific disorder
of the musculoskeletal system, now commonly known as fibromyalgia.

This rheumatologic diagnostic entity has resulted in relative
inattention to an understanding of their patients' common complaints
of unrefreshing sleep, chronic fatigue and psychological distress.
Experimental evidence from humans and animal studies indicate that
there is an inter-relationship of disturbances in the physiology of
the sleeping-waking brain with the widespread musculoskeletal pain,
chronic fatigue, and psychological distress in patients with hitherto
unexplained pain/fatigue illnesses, e.g., fibromyalgia and chronic
fatigue syndromes.

The emerging knowledge of the dysfunction of the nervous system in
such patients has lead to the study of novel medications that affect
neurotransmitter functions, e.g., pregabalin, serotonin/noradrenaline
compounds and sodium oxybate that are shown to improve many of the
symptoms of such patients.

* * *

A few years ago, someone on the East Coast was working on a theory that the brains of CFS patients, when awake, resemble those of normal people asleep, and that we just had to retrain their brains to wake up.  The therapy being used was playing video games.  I saved the $3000 for the therapy-training sessions and just played Tetris at home.

I can't say whether the difference is that I played Tetris or because I finally found something that helped me sleep better (it was all in the same time frame), but I will say that before I start work each day, I play a little Solitaire.  If the computer keeps telling me "you can't do that" (e.g., put a 7 on a 9), then I know immediately that I am not alert enough to work and I go rest another hour before I try again.  In my business, I have to be alert to much smaller mistakes than putting a 7 on a 9.

Thursday, May 8, 2008

Want more CFS research?

Want more CFS research?
Hold the directors of the NIH & CDC accountable for CFS funding
VLD Action Item #4
The National Institutes of Health (NIH) and Centers for Disease Control (CDC) have different, but equally important, missions to improve human health. Both agencies support CFS research, but funding has dropped in recent years. Ask NIH director Dr. Elias Zerhouni and CDC director Dr. Julie Gerberding to do more to understand, treat and control CFS.


Required text:
(this text will appear at the beginning of your message)
Did you know that, according to CDC, chronic fatigue syndrome (CFS) affects up to four million Americans and is as disabling as AIDS, MS and lung cancer? Did you know that this year alone, CFS will cost the US economy as much as the Bear, Stearns bailout ($25 billion), yet NIH spent more money researching hay fever?

My life has been affected by CFS and I appreciate the studies supported by NIH & CDC that have documented it to be a complex and debilitating illness that affects the brain and multiple body systems. However, the magnitude of CFS warrants that more be done.
Editable text:
(edit or add your own text)

Wednesday, May 7, 2008

More on CFS and Prior Activity Levels 

A case control study of premorbid and currently reported physical activity
levels in chronic fatigue syndrome
Wayne R Smith , Peter D White  and Dedra Buchwald
BMC Psychiatry 2006, 6:53

Accumulating evidence that CFS patients were actually more active on average
than controls before becoming ill

Tom Kindlon   (14 April 2008)

The main finding in this study is that "patients with chronic, unexplained
fatigue rated themselves as more active before their illness (p < 0.001)"
and that "these differences remained significant for the subset of patients
who met strict criteria for chronic fatigue syndrome or fibromyalgia"[1].

The authors then spend a lot of time speculating
about whether this could
have been an "overestimation of previous activity" and giving the "altered
perception" hypothesis.

Given that they only had self-report data to go on, it is interesting to
read a recent prospective population study on the illness[2]. It followed
4779 people from birth for the first 53 years of their lives. At age 53, 34
reported a diagnosis of CFS. Amongst other things, it found that "increased levels of exercise throughout childhood and early adult life and a lower body mass index were associated with an increased risk of later CFS." As it was a prospective study, there was no issue of recall bias. It also wasn't
simply self-rated, as it also involved reporting by a teacher at age 13.
Also they used the subject's BMI index - patients who went on to have CFS at
age 53 had a (statisically significant) lower BMI than those who did not go
on to develop CFS at ages 36 and 43 (before they had CFS). The authors say
this "this may provide some indirect but objective evidence of increased
levels of activity at these ages, especially as this difference had resolved
by the age of 53 years" (when the people with CFS were no longer more

In the current study[1], the authors say "the only prospective cohort study
of risk factors for CFS found that sedentary behavior at 10 years of age
doubled the risk of self-reported CFS in adulthood"[3]. I thought I would
give more information on that finding as it only related to a small
percentage of the "CFS/ME" patients and doesn't show that on average
patients were more inactive: in response to the question, about the amount
of sport played in spare time at 10 years, 16% of the people who ever had
CFS/ME by age 30 were in the "never or hardly ever" category compared to 8%
in the people who didn't go on to have CFS/ME (so 8% more than expected -
but it still meant that 84% in the "sometimes" and "often" categories).
However the authors of the study[3] didn't combine this data in some way
with a question on sports played within school: for the category "Played >2
hours/week of sport at school at 10 years", 52% of those who ever had CFS/ME
by age 30 were in this category compared to 44% of those who never had
CFS/ME by age 30. The unadjusted OR for this at 1.4 nearly reached
statistically significance (95% confidence intervals: 0.9 to 2.2). Some sort
of combination of the two pieces of data would have been preferable - a
person's body doesn't distinguish between activity done within schools hours
and in their spare time.

In the current study[1], the authors point out that their "findings are congruent with those of 3 retrospective studies reporting that CFS patients
perceived themselves as more active before their illness began than healthy controls"[4-6]. They also that "the high levels of physical activity reported by patients have been corroborated by their spouses, partners, or parents."[7]

With all this evidence from various sources about pre-morbid levels,
researchers perhaps need to start showing more evidence before they will
convince many of us of any speculative theories about CFS patients
misperceiving how much activity and exercise they used to do.

[1] Smith WR, White PD, Buchwald D: A case control study of premorbid and
currently reported physical activity levels in chronic fatigue syndrome. BMC
Psychiatry 2006, 6:53.

[2] Harvey SB, Wadsworth M, Wessely S, Hotopf M: Etiology of Chronic Fatigue
Syndrome: Testing Popular Hypotheses Using a National Birth Cohort Study.
Psychosom Med. 2008 Mar 31

[3] Viner R, Hotopf M: Childhood predictors of self reported chronic fatigue
syndrome/myalgic encephalomyelitis in adults: national birth cohort study.
BMJ 2004, 329:941.

[4] Riley MS, O'Brien CJ, McCluskey DR, Bell NP, Nicholls DP: Aerobic work
capacity in patients with chronic fatigue syndrome. BMJ 1990, 301:953-6.

[5] Van Houdenhove B, Onghena P, Neerinckx E, Hellin J: Does high
"action-proneness" make people more vulnerable to chronic fatigue syndrome?
A controlled psychometric study. J Psychosom Res 1995, 39:633-40.

[6] MacDonald KL, Osterholm MT, LeDell KH, White KE, Schenck CH, Chao CC,
Persing DH, Johnson RC, Barker JM, Peterson PK: A case-control study to
assess possible triggers and cofactors in chronic fatigue syndrome. Am J Med
1996, 100:548-54.

[7] Van Houdenhove B, Neerinckx E, Onghena P, Lysens R, Vertommnen H:
Premorbid "overactive" lifestyle in chronic fatigue syndrome and
fibromyalgia: an etiological relationship or proof of good citizenship? J
Psychosom Res 2001, 51:571-6.

* * *

Another one disproving the theory that CFS is another word for "lifelong couch potato".

Doctors have argued with me that I don't want to exercise because "you don't want to ruin your hair and make-up" or because "women don't like to sweat".  They have no clue that I have a history of dancing many hours a week, playing softball, winning volleyball championships; they just assume that women don't like exercise, and that that is why I am telling them that I can *not* exercise.  They haven't read the studies showing that aerobic exercise makes CFS worse; they'd rather spend the time coming up with ridiculous, discriminatory, prejudiced excuses based on what women were societally-constrained to in the 1800s, not what modern women enjoy doing.

Hillary Johnson observes "Many doctors have tried to find a causal link between CFS and personality traits that, in the case of any other illness, would be considered exemplary: blaming patients for having had a strong work ethic (calling them "overachievers") or exercising regularly (being "too driven")." 

Erik Johnson (no relation to Hillary) has often commented that doctors like to play Opposite Day: if you disprove their theory that you're too lazy to work by saying you regularly worked 60 hours a week, or their theory that you don't want to exercise by saying you used to run marathons, they'll suddenly come up with a new theory that you drove yourself to sickness by overdoing, without acknowledging that this completely contradicts everything they've said to that point about your "obvious inherent laziness".

Still, I'd rather be accused of driving myself to exhaustion than accused of being too lazy to work.  I'm a Type A personality and the former is closer to the truth than the latter.  I go to work when I'm sick -- even when I started my own business and no longer had a supervisor standing over me, it was not uncommon for me to be working with a heating pad wrapped around my spasming back or an ice pack on my forehead because I had a 101 fever, and a deadline that could not be moved. 

It's just the way I was raised, and I don't consider being called an "overachiever" or a "workaholic" to be nearly as big an insult as "lazy".  Unfortunately, no one acknowledges the amount of work that I accomplish DESPITE my symptoms, they only see the fact that I don't work a 5-day/40-hour week. 

Starting your own business when no one will hire you because you're too disabled for ADA-mandated accommodations is not proof of laziness; it's proof I'm a Type A.  Starting a second business when the first one isn't bringing in enough money isn't proof of laziness; it's proof I'm a Type A.  Continuing to work even after Disability benefits kick in is another sign that you're not lazy; you're too Type A to even consider quitting, because you like working too much to ever give it up.  But the denialists will find some way of misconstruing all these things, like assuming that because I can work 6-10 hours a week lying down in bed, I'm perfectly capable of working 40 hours a week sitting at a desk in an office.  Or, at the very least, 40 hours a week at home.

Even in my personal life, there are people who cannot understand why, if I can knit for their grandkids, I can't clean my house.  They can't (or won't) get their heads around it that there's a big difference in the physical exertion of sitting and knitting versus carrying laundry, climbing stairs, scrubbing, reaching, etc.  And they really don't like it that my response is to argue with them that they don't know what they're talking about, rather than to get up off the couch and Tasmanian-devil-like clean the whole house in 15 minutes.

I do as much as I can without making myself sicker.  If it makes me sicker, I won't do it.  That goes for cleaning, that goes for misguided doctors telling me to "exercise your way back to health", that goes for eating vegetarian and falling below *my* body's minimum protein requirements (which are higher than healthy people's).

I have to keep myself healthy enough to stay out of the hospital.  If that means not doing something that other people consider mandatory, oh well.  I answer to the needs of my body, not to any other person.  It's a lesson learned the hard way, from running myself down trying to meet someone else's expectations. 

The question will always be there: if I had taken a few days sick leave in January 2000, would I still be in relapse in 2008?  More than a few people think that if I had put my health ahead of my job, I could've turned it around and not gone into relapse in the first place.  But I didn't, and there's your evidence that one thing I'm not afflicted with is laziness.  (Although I know a lot of people who would have quit working and applied for Disability with far less impairment than I had the last several years that I was working and doing very little else because I had to spend my non-working hours resting up in order to work the next day.)

Two more studies on Fibromyalgia

Anandamide and neutrophil function in patients with fibromyalgia.

Psychoneuroendocrinology. 2008 Apr 4 [Epub ahead of print]

Kaufmann I, Schelling G, Eisner C, Richter HP, Krauseneck T, Vogeser
M, Hauer D, Campolongo P, Chouker A, Beyer A, Thiel M.

Clinic of Anaesthesiology, Klinikum Großhadern,
Ludwig-Maximilians-University, Marchioninistrasse 15, 81366 Munich, Germany.

PMID: 18395993

Fibromyalgia (FM) is a common stress-related painful disorder. There
is considerable evidence of neuroimmunologic alterations in FM which
may be the consequence of chronic stress and pain or causally
involved in the development of this disorder. The endocannabinoid
system has been shown to play a pivotal role in mammalian
nociception, is activated under stressful conditions and can be an
important signaling pathway for immune modulation. The
endocannabinoid system could therefore be involved in the complex
pathophysiology of FM.

We tested this hypothesis by evaluating the effects of stress
hormones and the endocannabinoid anandamide on neutrophil function in
patients with FM. We determined plasma levels of catecholamines,
cortisol and anandamide in 22 patients with primary FM and 22 age-
and sex-matched healthy controls. Neutrophil function was
characterized by measuring the hydrogen peroxide (H(2)O(2)) release
(oxidative stress) and the ingestion capabilities of neutrophils
(microbicidal function).

FM patients had significantly higher norepinephrine and anandamide
plasma levels. Neutrophils of FM patients showed an elevated
spontaneous H(2)O(2) production. The ability of neutrophils to adhere
was negatively correlated with serum cortisol levels. Adhesion and
phagocytosis capabilities of neutrophils correlated positively with
anandamide plasma levels.

In conclusion, patients with FM might benefit from pharmacologic
manipulation of endocannabinoid signaling which should be tested in
controlled studies.


Illness experience in fibromyalgia syndrome: A metasynthesis of
qualitative studies.

Soc Sci Med. 2008 Apr 17 [Epub ahead of print]

Sim J, Madden S.

Primary Care Musculoskeletal Research Centre, Keele University,
Keele, Staffordshire ST5 5BG, United Kingdom.

PMID: 18423826

There is growing interest in synthesizing qualitative research.
Despite certain philosophical and methodological difficulties, such
syntheses are potentially useful in enriching the insights of
empirical qualitative work in a particular area. This paper reports
an interpretive review of research into the subjective experience of
fibromyalgia syndrome (FMS), utilizing principles of metasynthesis.

Twenty-three separate studies were identified. Each study was
evaluated using methodological criteria to provide a context for
interpretation of substantive findings. Principal findings were
extracted and synthesized under four broad categories: experience of
symptoms, search for diagnosis, legitimacy, and coping.

Our findings re-emphasised the point that pain in FMS is ambiguous
and invisible, raising questions of credibility and legitimacy.
People with a diagnosis of FMS appear to frame the experience of
symptoms within the biomedical model, where FMS is viewed as an
organic entity potentially identifiable through biomedical tests. The
subjective meaning and perceived legitimacy of the diagnostic label
appear to be important factors in the subjective experience of FMS.
Coping strategies adopted can be subsumed under Mannerkorpi, K.,
Kroksmark, T., Ekdahl, C. [1999. How patients with fibromyalgia
experience their symptoms in everyday life. Physiotherapy Research
International, 4(2), 110-122.] notions of 'struggling', 'adapting',
'in despair' and 'giving up'. Most studies had at least one
identified methodological shortcoming,
though it is not
straightforward to identify the significance of such shortcomings.

We conclude that there is scope for further research into the
subjective experience of FMS, and into the methodology of
metasynthesis, especially in relation to methodological appraisal.

Intracellular Dysfunctions

Another bit of research proving that CFS is physical, not psychological:

Unravelling intracellular immune dysfunctions in chronic fatigue
syndrome: interactions between protein kinase R activity, RNase L
cleavage and elastase activity, and their clinical relevance.

Journal: In Vivo. 2008 Jan-Feb;22(1):115-21.

Author: Meeus M, Nijs J, McGregor N, Meeusen R, De Schutter G,
Truijen S, Frémont M, Van Hoof E, De Meirleir K.

Affiliation: Department of Human Physiology, Faculty of Physical
Education and Physiotherapy, Vrije Universiteit Brussel, Belgium.

NLM Citation: PMID: 18396793

This study examined possible interactions between immunological
abnormalities and symptoms in CFS.

Sixteen CFS patients filled in a battery of questionnaires,
evaluating daily functioning, and underwent venous blood sampling, in
order to analyse immunological abnormalities.

Ribonuclease (RNase) L cleavage was associated with RNase L activity
(rs=0.570; p=0.021), protein kinase R (PKR) (rs=0.716; p=0.002) and
elastase activity (rs=0.500; p=0.049). RNase L activity was related
to elastase (rs=0.547; p=0.028) and PKR activity (rs=0.625; p=0.010).
RNase L activity (rs=0.535; p=0.033), elastase activity (rs=0.585;
p=0.017) and RNase L cleavage (rs=0.521; p=0.038) correlated with
daily functioning.

This study suggests that in CFS patients an increase in elastase
activity and subsequent RNase L cleavage is accompanied by increased
activity of both the PKR and RNase L enzymes. RNase L and elastase
activity are related to daily functioning, thus evidence supporting
the clinical importance of these immune dysfunctions in CFS patients was provided.

ME Patient Sues for Discrimination

Thanks to Annette, for telling us about this.  We wouldn't always know
without such faithful "Newshounds" keeping us up to date, either because a
story is not online but only in the local paper, or people assume that we
will know already, or someone will already have told us. So, please join our
pack of Newshounds and tell us anything you think we should know about
and/or reply to.

This is in response to a story about Julie Pine, an ME sufferer who has
brought a case for unfair dismissal against her former employers. It
appeared, first in the London Evening Standard, 8 April 2008 but is also in
the Daily Telegraph, 9 April 2008.

The links are below my signature.

I think there will be more coverage, whatever the outcome. If anyone can
manage a reply, the e-mail addresses are:

London Evening Standard
Daily Telegraph

One idea for a theme is how ME is switched to CFS to make it easier for
employers, insurance companies and tougher for wronged employees but the
more ideas/experience the better, to raise awareness.


*London Evening Standard Letters*.

While Julie Pine waits for the outcome of her appeal for unfair dismissal
against Cinven Ltd, a leading investment company in the buyout market (*ME
sufferer 'sacked for her illness' sues firm for £100,000, London Evening
Standard, 8 April 2008*), a similar case is pending in the Supreme Court in
Canada (Honda v. Keays).

The few such cases which receive publicity are a tiny fraction of the true
magnitude of those affected. This is because, if the sick employee doesn't
make it easy for their employer to "let them go", simply by being too ill to
attend and drift from Statutory Sick Pay on to disability benefit, a
campaign of bullying by both management and fellow workers is successful
behind closed doors and they "resign" or "step down", without further
entitlement. If it enters anyone's head to bring a case of unfair dismissal,
they are usually talked out of it by friends, or warned by lawyers that it
may go worse for them.

It doesn't end there. Having been hounded out of work on to subsistence benefits, they are now routinely disbelieved, ridiculed and bullied here too. Periodically, an attempt is made to hound them back into any sort of work, regardless of its suitability or level of pay, the chances of which,
of course, become increasingly rare, due to the reduced number of
opportunities and increased number of years older and out of work. The
alternatives to benefits - charity, black economy, crime and suicide -
sometimes become preferred options.

One wonders if there is any other species on Earth which treats its
chronically ill members quite so badly.

Yours sincerely
Dr John H Greensmith
ME Free For All. org'sacked+for+her+illness'+sues+firm+for+%C2%A3100,000/

ME sufferer 'sacked for her illness' sues firm for £100,000
Benedict Moore-Bridger
London Evening Standard

A City worker with ME is suing a private equity fund for more than £100,000
after she was fired for being disabled, an industrial tribunal heard.

Julie Pine, a database administrator for Cinven Limited - which recently
bought Bupa's hospitals and assets for £1.44 billion - claims she was
hounded out of her £30,000-a-year job because of her chronic fatigue

The 31-year-old said senior PA Melanie Price embarked on a whispering
campaign by closely monitoring Miss Pine's absences, describing her as a
"malingerer" and discussing her illness openly in the office.

Now house-bound with the condition, Miss Pine told Kingsway Employment
Tribunal via video link that her inability to come into the office led to
spiteful comments between colleagues, including an email which said: "Tell
her to die."

As a result of Mrs Price's harassment, Cinven Limited - which has a minimum
investment criterion of ¤500 million - "orchestrated" her redundancy after
she went on long-term sick leave because it "did not want to be saddled with
a sick employee," she claimed.

The tribunal heard that after Miss Pine developed symptoms including
lethargy and exhaustion in January 2006, she asked if she could work from
home, accessing the company database remotely.

But Mrs Price complained to HR manager Andrew Broomfield, insisted on being
kept up to date on Miss Pine's absences, and gossiped about them in the
office, the tribunal heard.

Miss Pine, who lives in Suffolk, said she was "extremely upset, distressed
and humiliated" by Mrs Price's " malicious" treatment.

She said: "I believe that Mrs Price embarked on a deliberate campaign to
blacken my name, and sow seeds of suspicion and distrust about my illness
and absences in the mind of my employer and other members of staff.

"I believe that Mrs Price created a situation whereby I was perceived as a
malingerer and actively encouraged Cinven Limited to dismiss me.

"It is also clear that she wielded considerable influence over management.
Cinven Limited orchestrated the redundancy situation to provide a cloak of
legitimacy to dismiss me."

Mrs Price says her interest in Miss Pine's absences was out of concern for
her well-being.

Miss Pine signed off on long-term sick leave on 23 August 2006, and told
Cinven Limited she had been diagnosed with ME the following month. She was
formally dismissed on New Year's Eve that year. No other positions were
offered and an appeal was dismissed by the company.

She said: "I do not believe that I would have been dismissed on the grounds
of redundancy had I been able-bodied and not had any time off work due to
sickness, as my work record was unblemished and I was good at my job."

Mr Broomfield told the tribunal that the redundancy was not related to Miss
Pine's condition, but to the reduction in the amount of work available.

He said: "The position was redundant as far as we were concerned and the
disability, whilst unfortunate for Julie, had no real effect on the job
disappearing." Cinven Limited and Melanie Price deny unfair dismissal,
disability discrimination, harassment and victimisation on the grounds of

The hearing is due to end on Friday.


City worker with ME 'treated like malingerer'
Daily Telegraph


A City worker suffering from ME is suing a private equity fund for more than
£100,000 after a senior colleague allegedly gave the impression that she was
a "malingerer" and helped orchestrate her redundancy

Julie Pine, 31, developed chronic fatigue syndrome while working for Cinven
Ltd, a leader in the "European large buyout market" which recently bought
BUPA's hospitals and assets for £1.44 billion.

She claims that a senior PA, Melanie Price, embarked on a campaign against
her by monitoring her absences and discussing her illness openly in the

Miss Pine, who is now housebound, told a London employment tribunal via a
video link yesterday that Cinven made her redundant after she went on
long-term sick leave because it "did not want to be saddled with a sick

The tribunal heard that Miss Pine, who earned £30,000 a year as a database
administrator, began suffering symptoms including lethargy and exhaustion in
January 2006 and asked if she could work from home.

Mrs Price drew attention to her absences by sending an email to HR manager
Andrew Broomfield which said: "Just out of curiosity, how many days sick and
how many days compassionate leave has Julie taken since she joined?"

Miss Pine, of Leavenheath, Suffolk, said of Mrs Price: "It is apparent from
her emails to colleagues and the level of monitoring of my absences that she
was intent on creating the impression that I was a troublesome employee and
a malingerer."

Mrs Price claims she was only concerned for her colleague's well-being. In a
statement, Cinven strenuously denied the allegations, saying: "Filing an
employment claim does not automatically mean the allegations within it are
true or have merit. We are entirely confident that the tribunal will see
this claim for what it is."

Cinven Ltd and Mrs Price deny unfair dismissal, disability discrimination,
harassment and victimisation on the grounds of disability. The hearing,
which is due to end on Friday, continues.

Copyright of Telegraph Media Group Limited

* * *

Atleast she was allowed to work from home.  I proposed to a number of employers that I could do everything from home except answer the office doorbell and was told this was not acceptable.  Invariably, I was asked "how would we know you're working as many hours as we're paying you for?" -- the State Disability judge observed "because either the work is done or it isn't", but the employers themselves couldn't figure that out.  (Or didn't want to figure that out, because they didn't want a disabled employee.)

Patients are routinely let go for using the health insurance (which employers believe will increase the premiums) or for taking too many sick days or, conversely, for not taking sick days and trying to work through it, which allows their employer to see for a fact that they are sick and not "malingering".  Damned if you do and damned if you don't. 

The best way to avoid being discriminated against is to not become disabled.  Unfortunately, the only way I could've avoided becoming disabled would have required being a wacko germophobe who refused to come out of my nice germ-free apartment during flu season. 

I wasn't engaging in any risky behavior, I didn't become disabled from skydiving or anonymous sex or doing drugs -- I caught the virus doing things that everyone does every day: leaving my apartment to go to work and grocery shopping.  If someone coughs right in your face, there's not much you can do to avoid catching their germs: CFS isn't a lifestyle disease, it's a virus that's passed through casual contact.  No one else I know was sick that week, or developed CFS, which means that I got the virus from someone I don't know, perhaps someone who touched a door or something in the store shortly before I did.

In other words, the detractors and denialists are just as likely as anyone else to wake up one day and find that they have become CFS patients.  (See "Disease makes Dubious Doctor a Believer" ) 

Book about CFS Sufferer

Moderator's note: Posted on behalf of Sabine Speisser. If you want to reply to
her, please reply to her directly at . Thank you.

Hi there,

I just thought I would let you know that I have finally managed to publish my
collage book "The artful correspondence of Frederic and Kate".

One of the characters suffers from CFS

The book has been dedicated to my family, cfs sufferers and their carers.

A page at the back links to co-cure and cfs resources on the book website.

I have originally been thinking about avenues of donating a portion proceeds
to research, however it would probably not amount to much with a
self-published book. Hence I am looking at a model, whereby the book can be
made available for fundraising purposes (at wholesale price & postage/delivery
cost).  Any group could set their own promotional retail price. Any thoughts
on this would be much appreciated.  Anyone interested should contact me for
further discussion.

The book is currently available online at Amazon and Barnes & Noble.

One mouse character in the book suffers from cfs. Showcasing her predicament,
I am aiming at awareness of the illness in a wider community and am only
touching on the subject. This book arose from my creative pursuits while
resting and recuperating from daily chores. It is a 116 pg full colour mailart
project. It was never meant as a commercial project, however a good friend
suggested otherwise .

I am working on the second book, where I  intend to "dig" a little deeper into
the illness. I would love community help in developing the character's
condition further. I'm sure many sufferers have tales to tell and will be able
to inspire me with memorable anecdotes, which I can translate to animal

I am happy if I can do my little bit for the cause, even if it may be only to
inspire others to be creative in some way to ease the pain.

Kind regards
Sabine Spiesser

New direction for CDC?

The February edition of Phoenix Rising is now available. In this
edition (with a new format) we take a close look at an important
event: the first theory paper on CFS by a senior Center For Disease
Control researcher that I'm aware of. This paper suggests the CDC,
for the first time, is confident enough about what they know about
CFS to take a stab at explaining it. Given the CDC's clout in the
small ME/CFS research world this paper is worth looking at closely.

We also take advantage of the Dr. Reeve's testimony during the last
CFS Federal Advisory Committee Meeting to take a broad look at the
most prominent CFS research program in existence.

The newsletter can be read at

While you're there subscribe to the most up to date, active CFS
newsletter found.

We'll roll into the big month of May with Dr. Friedman's three part
interview; in Part I, Dr. Friedman, a past CFSAC member bluntly talks
about the federal response to ME/CFS; in Part II he focuses on the
research situation in CFS, in Part III: he talks about our progress
in advocacy and what needs to be done.

On CFS's 'Birthday' - International Awareness Day  - on May 12th
we'll have a special interview with the man who created that day, Tom
Hennessey, the founder of RESCIND.

Happy reading!!


Tuesday, May 6, 2008

REMINDER -- Letters to Elected Officials

For some years now, we've been sending letters to our elected officials, to arrive around CFS/Fibro Awareness Day, May 12.

At the very least, please write to your two Senators and your Congressional representative; if you can afford more stamps, start at the White House and work your way down to your City/County Council.

A one-page letter should do it -- who were you before, who are you as a result of the disease, how long did it take for a correct diagnosis, how does it affect your life, the difficulties you had getting people to believe you and your Disability benefits (or that you still haven't received them even after years of waiting), and then the zinger, that this affects a million Americans, $24B a year in lost productivity, so when is the government going to invest enough in research to get us back to work and paying taxes on that $24B?  If you're a friend or caregiver, talk about your loved one, how it hurts you to see this once-vibrant person bedridden or in a wheelchair, "Mary used to run marathons and now can barely manage ten steps from bed to bathroom without collapsing", "Jim used to lift weights, 300 pounds was nothing, and last week I had to spoon-feed him because he didn't have enough strength to lift the food to his mouth".

The point is to have a sudden "blip on the radar" as for one week there are all these letters coming in about CFS/fibro.  Elected officials do keep track of what issues are generating a lot of mail and they pay attention to those.  If we can go from the usual 0-1 letter a week up to 12 or 20, it will be noticed.

Sunday, May 4, 2008

The Sophia Mirza Archives

Permission to Repost

The Sophia Mirza Archive, compiled by her mother, Criona Wilson.

The life and early death of a severely affected ME patient.

Hospital doctors have a wry saying that "physicians bury their mistakes - psychiatrists lock theirs up". In a sense, Sophia Mirza defied both of these options. Her forced detention within a mental hospital was reversed within weeks. And although she died as a consequence, her voice lives on. She still bears witness against those who persecuted her.

That her voice can still be heard is due to her mother Criona Wilson who,
uniquely, has published her daughter's confidential medical case notes
online. With visionary foresight, Sophia tape-recorded crucial interviews
between herself and her doctors, and the transcripts form part of the
archive. Sophia was lucid, rational and defiant to the last.

ME patients are unfortunate with their doctors. While most other patient groups have a trusting relationship with the medical profession, far too often ME patients complain of neglect, abuse, misdiagnosis and stigma. Our
patients have a visceral dislike of the psychiatric construct of ME, and for
good reason. Besides the disadvantages of misdiagnosis, it forces them into
a clinical environment where the validity of their opinions is routinely
delegitimized, where their right to give informed consent is often not
respected, and where in some cases they may be subjected to involuntary
These are fears which lurk in the minds of all ME patients. For
Sophia Mirza they became a nightmare reality.

This online archive provides a compelling narrative of Sophia's last years.
But it is a painful and frightening experience to read her case notes. For
this is the kind of tragedy that has the potential to affect many other
patients, and from which many of us have escaped only by good luck. The
narrative has the quality of a real life drama documentary, and hopefully
will raise awareness among an audience beyond the confines of the ME patient
community. There are close up factual portraits of patient and family, the
psychiatrist, the GP and the social worker. The ineptitude of the NHS in
respect of ME degrades many patients. But the nature of the disease inflicts
its own humiliations on patients and family. The grim reality of life for
the severely affected is described here in unsparing detail. It required
considerable moral courage for Criona to publish this archive unedited.

It is possible for good to come out of tragedy. Sally Clark, Trupti Patel
and Angela Cannings suffered miscarriages of justices: but now it is much
more difficult to falsely accuse bereaved young mothers of Munchausen's by
Proxy. Sally Clark and Sophia Mirza were both martyrs, literally, to medical failure at institutional level. But Sally Clark's case fatally undermined
"Meadow's Law". Hopefully Sophia's tragedy will have the same effect on
"Wessely's Law".

Horace Reid, 1 May 2008.


Downloading the files.

Sophia's case notes were first posted online by her mother on 28 April 2008

With Criona's permission, I have downloaded the files and collected them in
easy to read pdf format.

Criona arranged the documents in four sections.

1. The red section gives a chronological list of 213 documents from Sophia's
medical records. A large and representative selection are published online.

2. The blue section contains Social Services documentation, including the
warrant to search for and remove Sophia, and the report from the independent
investigating officer.

3. The purple section contains correspondence with the Attorney General's

4. The fourth section, (also red) contains Criona's correspondence with the
GMC in respect of six doctors.

For ease of downloading I have divided them as follows.

1. Sophia's medical records:

MirzaGMC1 (7.5MB),

MirzaGMC2 (6.8MB),

MirzaGMC3 (7.4MB),

MirzaGMC4 (5.9MB),

2. Social Services:

MirzaSS1 (5.5MB),

MirzaSS2 (4.3MB),

MirzaSS3 (7.4MB),

3. Attorney General's Office:

SophiaLeg1 (5.8MB),

SophiaLeg2 (5.5MB),

4. GMC Correspondence:

MirzaDrs (6.4MB),

Note: you can get a copy of the original Adobe Acrobat Readerfor Windows,
Mac or Linux here ...

For a more compact Windows pdf reader with a small file size use the Foxit
Reader here ...