Terrorism begins at home

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Hamas patrols beaches in Gaza to enforce conservative dress code

From today’s Guardian newspaper (UK) comes an article worth reading about the efforts of Hamas to “Islamize” the Gaza area of Palestine, where they are the elected government, by controlling dress and behavior–––especially of women, of course. Ownership must be maintained!

It began with a rash of unusually assertive police patrols. Armed Hamas officers stopped men from sitting shirtless on the beach, broke up groups of unmarried men and women, and ordered shopkeepers not to display lingerie on mannequins in their windows.

Then came an effort to force female lawyers to abide by a more conservative dress code, and intense pressure on parents to dress their daughters more conservatively for the new school term. Last week police began enforcing a new decree banning women from riding on motorbikes.

For the first time since Hamas won Palestinian parliamentary elections nearly four years ago, the group is trying to Islamise Gazan society. In public, Hamas leaders say they are merely encouraging a social moral code, and insist they are not trying to imitate the religious police who operate in some other rigid Islamic countries. But to many it feels like a new wave of enforcement in what is already a devoutly Muslim society.

Asmaa al-Ghoul, a writer and former journalist, was one of the first to run up against the new campaign. She spent an evening with a mixed group of friends in a beachside cafe in late June. After dark, she and another female friend went swimming wearing long trousers and T-shirts. Moments after leaving the water they found themselves confronted by a group of increasingly aggressive Hamas police officers. “Where is your father? Your husband?” one officer asked her. Ghoul, 27, was told her behaviour had not been respectable. Five of her male friends were beaten and detained for several hours….

Mostly the campaign focuses on what women wear. One startling poster decries the trend for young women to wear their headscarf along with tight jeans as a “satanic industry 100%”. It shows a red devil holding an image of a fashionable young woman and recommends a fuller, less glamorous head covering, counselling: “The right hijab is your way to heaven.”

Asked about his attitude to those few Gazan women who do not cover their hair, Abu Shaar said: “We tell them it is an essential element to being a Muslim. Wearing the headscarf is as essential as prayer.

If you think my comment about maintaining ownership goes too far, note the enquiry of the police officers, “Where is your father? Your husband?” and the beating of the male companions. Women must not be allowed out in public without their owners being present to control them. Men are responsible for the behavior of “their” women, their wives, daughters, sisters; if they do not exercise that control, they may be punished too, a powerful example to other men. The excuse for honor killings, of disobedient women, even women who have been raped, is that these “immoral” women bring upon the family dishonor which can only be washed clean with their blood.

Some women are resisting the increased Islamization in Gaza:

When the Hamas-appointed chief justice, Abdel-Raouf al-Halabi, ordered a new uniform for all lawyers, which for women meant a headscarf and a jilbab – a full-length robe – he had not counted on the temerity of the response. Nearly all of Gaza’s 150 female lawyers already wear headscarves, but they challenged the ruling on the grounds that it had no basis in law. The chief justice was forced to back down.

“It was absolutely illegal,” said Dina Abu Dagga, a lawyer who has covered her hair since she was at university in Cairo.

It was not the chief justice’s right to change the dress code, she said. Under Palestinian law, that power rested with the lawyers’ union.

“We’re not against the hijab. I wear it myself,” she said. “We’re against imposing it and restricting our freedoms. Today you impose the hijab, but tomorrow it will be something else.”

But, unlike the lawyers with their union, most women do not have a “place to stand” in order to resist safely.

We are obsessed with terrorism, since 9/11. But only when it is directed against a national government. When women are threatened, murdered, and repressed, that is terrorism too: the systematic use of terror especially as a means of coercion (Merriam-Webster). What is more political than the subjugation, by fear and violence, of one portion of a population?

As politicians well know, religion can provide the best justification for terroristic acts, since they are being performed at God’s behest. Once a behavior (like not wearing a headscarf, or wearing one that is too revealing) has been linked with the devil, anyone who fits the description is risking their mortal soul, and endangering the entire society by their example. As Barry Goldwater famously said, “Extremism in defense of virtue is no vice”. Or “If thine eye offend thee, pluck it out”; much easier if it is someone else’s eye, or even your own daughter. [image below from a painting by John Singer Sargent, A Spanish Woman.]

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If Babbage HAD built his “Difference Engine”

Here’s a funny comics-version, from 2D goggles. Actually it is about mathematician Ada Byron Lovelace (1815 – 1852), but we all know that women never get top billing!

The comic was made for “Ada Lovelace Day”, to promote a film (to be offered to local stations by PBS) about this remarkable woman, and the film-makers need our help:

letters of support from people who have been influenced in some way by Ada and who are willing to help publicise the film, be a part of the interactive website, perhaps show the film, or contribute in any other way.

Rosemarie says, “I need letters from people stating how important a film like Ada is and how they through their networks can help to publicize the film. It would be great if the women have organizations they work or belong to. If they are software developers or computer experts, this would be great. It would be best if they were Americans, as the NSF (National Science Foundation) is American.”

If you’re not American, letters would still be useful of course! The deadline is the end of October.

Please write to:

Rosemarie Reed
On the Road Productions International, Inc.
310 Greenwich Street, 21F
New York, NY 10013
Or email Rosemarie directly, rreed40148@aol.com.

After some thought, I decided to write a letter based on my experiences giving books to kids at the food pantry, and the unabated gender gap I see in kids’ interest in science and math. Sure, the older kids are computer users, but computers are fun personal devices; they still display an aversion to math and science, especially the non-biological sciences. A few boys get drawn in by technology, but I don’t see it in girls. [I have a small sample size, I admit, and it is a rural area.]

Who was Ada Lovelace?

Ada Byron Lovelace was the daughter of Lord Byron (his only legitimate child); she married a nobleman, and was part of the social whirl of that class, dancing and entertaining. [Photo below from Wikipedia]

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Wikipedia tells us that

During a nine-month period in 1842-43, Lovelace translated Italian mathematician Luigi Menabrea’s memoir on Babbage’s newest proposed machine, the Analytical Engine. With the article, she appended a set of notes. The notes are longer than the memoir itself and include (Section G), in complete detail, a method for calculating a sequence of Bernoulli numbers with the Engine, which would have run correctly had the Analytical Engine ever been built. Based on this work, Lovelace is now widely credited with being the first computer programmer and her method is recognised as the world’s first computer program.
However, biographers debate the extent of her original contributions. Dorothy Stein, author of Ada: A Life and a Legacy, contends that the programs were mostly written by Babbage himself. Babbage wrote the following on the subject, in his Passages from the Life of a Philosopher (1846):

I then suggested that she add some notes to Menabrea’s memoir, an idea which was immediately adopted. We discussed together the various illustrations that might be introduced: I suggested several but the selection was entirely her own. So also was the algebraic working out of the different problems, except, indeed, that relating to the numbers of Bernoulli, which I had offered to do to save Lady Lovelace the trouble. This she sent back to me for an amendment, having detected a grave mistake which I had made in the process.

The level of impact of Lovelace on Babbage’s engines is difficult to resolve due to Babbage’s tendency not to acknowledge (either orally or in writing) the influence of other people in his work. However, Lovelace was certainly one of the few people who fully understood Babbage’s ideas and created a program for the Analytical Engine, indeed there are numerous clues that she might also have suggested the usage of punched cards for Babbage’s second machine since her notes in Menabrea’s memoir suggest she deeply understood the Jaquard’s Loom as well as the Analytical Engine. Her prose also acknowledged some possibilities of the machine which Babbage never published, such as speculation that “the engine might compose elaborate and scientific pieces of music of any degree of complexity or extent”.

The Difference Engine becomes reality after 150 years

Babbage never built his mechanical computer, but the London Science Museum did make a working version. It was finished in 1991 for the 200th anniversary of Babbage’s birth.

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A view of “some of the number wheels and the sector gears between columns”

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Difference Engine model photos source.

Ada Lovelace, “The Right Honourable the Countess of Lovelace”, gave birth to three children (the firstborn was named Byron), and died at 37 of uterine cancer and being bled by her doctors.

Let’s support that film, with letters or emails to demonstrate demand for stations to show it! Here’s the email again, rreed40148@aol.com.

More about girls being turned off to math and science

Feminist Chemists cites a 2008 study by the American Mathematical Society:

In elementary school, girls do as well as or better in math than boys. In middle school, girls with an inclination for math begin to lose interest and fall behind, mostly due to peer pressure and societal expectations. Throughout middle and high school, social stigma and lack of appropriately challenging educational opportunities for the mathematically precocious becomes a hard reality in most American schools. Consequently, gifted girls, even more so than boys, often camouflage their mathematical talent to fit in well with their peers.

A study published in June by the National Academy of Sciences found

“It’s not an innate difference in math ability between males and females,” says Janet Mertz, a UW-Madison professor of oncology and one of the authors of the article that analyzes and summarizes recent data on math performance at all levels in the United States and internationally. “There are countries where the gender disparity in math performance doesn’t exist at either the average or gifted level. These tend to be the same countries that have the greatest gender equality.”

Gender bias and expectations are not the only thing we have to worry about. It’s not just girls––boys are losing interest too, according to the AMS research:

”The U.S. culture that is discouraging girls is also discouraging boys,” says Janet Mertz, a University of Wisconsin-Madison professor of oncology and the senior author of the study. “The situation is becoming urgent. The data show that a majority of the top young mathematicians in this country were not born here.”

[NOTE: While Janet Mertz was one of the authors on each study, the PNAS and AMS studies are two different projects. The latter, published Oct. 10 in the Notices of the American Mathematical Society, was a comprehensive analysis of decades of data on students identified as having profound ability in math (Science News Oct. 13, 2008). The other study was published June 1, 2009 in the Proceedings of the National Academy. It looked at US and international data on students of all levels of ability, to answer three key questions: “Do gender differences in math performance exist in the general population? Do gender differences exist among the mathematically talented? Do females exist who possess profound mathematical talent? The answers, according to the Wisconsin researchers, are no, no and yes.” (Science News June 2, 2009).

You may remember the remarks of Lawrence Summers in 2005 (he was then President of Harvard, and is now an economic adviser to President Obama), to the effect that innate differences between men and women might be one reason fewer women succeed in science and math careers. These two studies would support the conclusion that if innate differences do influence women’s lack of success in these fields, the differences are not in mathematical ability. Maybe we should look at “innate differences” in aggressiveness and willingness to withstand unduly competitive or even hostile treatment from colleagues and superiors. Or at insecurity and discomfort, innate or not, which arise in male academics and administrators when females display ability, competence, and promise. A few decades ago women rarely appeared in symphony orchestras unless they played the harp; auditions behind screens changed that! Did our musical ability transform itself overnight? Probably not. ]

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[Photo from another good article on the AMS study]

Send an email for Ada and our kids, and consider how you yourself might interact with kids about math and science. Take a trip to the Science Museum if you are fortunate enough to live near one, read a book together, in general don’t act as if math and science are boring geek fare. Even if a lot of it is beyond you, as higher math seems to be beyond me, that doesn’t have to be true for the kids you know. Since I was in college, math has become much more important in biological sciences, ecology, even social sciences like history, so if I were a history major today I would probably need to take at least an introductory statistics class.

We all need to model a respect and interest for learning, to the kids around us. Kids start out as voracious learners: have you tried to learn another language lately? Hard, right? Babies do it, and young kids pick up second languages easily. They’re always learning, not just skills and processes but attitudes too, so let’s not convey bad attitudes about learning, reading, thinking!

Bad Science: Housework helps combat anxiety and depression

I’m a subscriber to New Scientist, the British weekly magazine of science news for the rest of us. I subscribed to Science for a while too, because it publishes researchers’ actual articles, but decided I’d rather have more numerous reports with less math. New Scientist contains short reports and a few longer articles as well as interviews, and a great feature at the end where people write in requesting explanations for odd observations (very British, I think, in the tradition of the journal Notes and Queries (1849 – present), or letters to the London Times from country parsons reporting the first sighting of a bird).

Anyway, though I still find NS interesting and valuable, I’ve begun to feel they are sometimes sacrificing science for snappy headlines. Here’s an example that is from a while ago, but quite illustrative.

Housework helps combat anxiety and depression

FEELING down? You might be able to dust away your distress. Just 20 minutes a week with the vacuum cleaner or mop is enough to help banish those blues, and sport works even better.
That’s the message from Mark Hamer and his colleagues at University College London, who wanted to find out what benefits arise from different types of physical activity. They examined data from questionnaires filled in by almost 20,000 Scottish people as part of the Scottish Health Surveys, carried out every few years. Some 3200 respondents reported suffering from anxiety or depression, but those who regularly wielded the mop or the tennis racket were least likely to suffer, the researchers report (British Journal of Sports Medicine, DOI: 10.1136/bjsm.2008.046243).

One 20-minute session of housework or walking reduced the risk of depression by up to 20 per cent. A sporting session worked better, reducing risk by a third or more. Failing housework or sport, says Hamer, try to find something physical to do. “Something – even for just 20 minutes a week – is better than nothing.”

––From issue 2652 of New Scientist magazine, 19 April 2008, page 4-5. Abstract of original available free, entire article requires fee to BJSM.

Why we shouldn’t believe this

In New Scientist’s brief bit, there’s absolutely no evidence for a causal relationship between exercising and being less depressed. It’s an example of the frequent, but quite false, assumption that because two things are associated, one causes the other. Other relationships are quite possible. Does physical activity really reduce depression and anxiety, or are the people who actually do housework or sports simply the ones who have less severe symptoms to start with? Or is there some other connexion altogether? Nothing in the New Scientist, or the article abstract, addresses that question. But it makes an eye-catching headline, to say that housework cures depression.

To investigate the question scientifically, it is necessary to take a large number of depressed people and randomly assign them to one of three groups: an exercise group, a control group given some other task like filling in a weekly questionnaire or reading about depression, and a third group who don’t get any new activity or other attention from the researchers. (Ideally those doing the testing and analysis don’t know which group is which.) Then, at the beginning and end of the study, measure psychological state using some accepted reliable tests and see what changes. Finally, use statistical analysis to see if the changes are significant or might be due to chance. [Even after that, other factors may make the apparent conclusions false: maybe the exercise was not enough to have an effect, or during the study the country went to war and everybody stayed depressed, or the social aspects of being in an exercise group had more effect than the actual jumping and sweating did.]

No doubt such a study has been done, probably more than once; advising depressed people to get more exercise is a standard approach and insurance companies would love to fund the research to support it. Mark Hamer might have cited previous work in the full text of his article in the British Journal of Sports Medicine (which New Scientist should have read before writing their brief and provocative piece) but we readers have no way of knowing this.

In this particular case––the effect of exercise on individuals––researchers would have to be vigilant about the distortion of results due to participants dropping out or failing to comply with the activity levels. Even the method of choosing participants can affect reliability of results: if the depressed people are chosen from those who show up at clinics, their symptoms may be overall less severe than the symptoms of people too depressed even to go to a clinic.

A similar example: exercise and fibromyalgia

I have fibromyalgia, and some researchers have pronounced aerobic exercise to be beneficial for reducing the symptoms of this condition’s chronic pain and fatigue. Exercise is fundamentally a good thing, I agree. It distracts one from symptoms, adds an interest, may confer a feeling of control over one’s illness, strengthens muscles, promotes growth of new neurons in the brain, and can improve flexibility.

But. In moderate to severe cases of fibromyalgia, even mild exertion can cause greatly increased pain and exhaustion. Unlike the familiar “weekend athlete” reaction, the increased pain and fatigue may last a week or several weeks. This means that for some individuals the goal of walking briskly for a few blocks could take years to attain, since we are knocked back to the starting point when we overdo, or when something else in our lives like a cold or interrupted sleep aggravates our symptoms.

Some time ago I read a review article which gathered the results of a number of studies on exercise and fibromyalgia, and I noted that in some the dropout rate was high but wasn’t mentioned in interpreting the data. And then there are people, like myself, who would never enroll in an aerobic exercise program because we’ve “been there, done that” and it was painful and unproductive. If we’re not counted, and a high dropout rate is glossed over, then to whom do the results apply?

What can we say about exercise, then?

I am skeptical of the efficacy of exercise as a general one-size-fits-all prescription for fibromyalgia or depression. I would suggest the fibromyalgia studies really show that exercise appears to be helpful for those people able to endure it, but, while all patients should be encouraged to do appropriate activities as tolerated, there’s a need to be gradual and cautious. Some patients may never be able to attain exercise levels that make appreciable improvements to their symptoms, despite sincere efforts. (This doesn’t mean that exercise is without benefits to them, though. My level of physical activity doesn’t seem to help my pain, fatigue, or quality of sleep, but I’m much happier when I get out for a walk or a bit of gardening.) At an education class on fibromyalgia, I heard someone ask “How can I exercise when even walking around the house is too strenuous?” The reply was, “Can you get up and walk all the way around your kitchen table? Good. Start with that and work up.” Sensible advice, but actual improvement in symptoms may be a very long time in coming for that person.

For depressed people, exercise is unlikely to be harmful and may indeed help––I myself believe that it does––but there’s no evidence of that in the New Scientist account of Mark Hamer’s work.

I felt this was worth writing about for two reasons, one general and one particular. It’s a good example of how the media gives us accounts of scientific research without the details needed to evaluate them. And, invisible conditions like fibromyalgia and depression are different from most other health problems. They are regarded by many as non-ailments or personal weakness/malingering, so it is easy for “exercise may help” to become “quit complaining, pull up your socks and get on with it”. From there it’s a short step to “all these patients could feel better but they just won’t do the work necessary; they cling to their disease.”

And I have to admit that the example used, housework, was particularly galling to me. While there are people who can enjoy housework as a zen activity, or feel great satisfaction at making their floors and sinks shine, most of us (male or female) do not get much pleasure at all from it. Every time you do it, next day there it is again, dirty dishes, laundry piling up, dog hair floating across the floor. Truly, housework is never done. And, given that housework is still seen more as a woman’s responsibility than a man’s, and that women have a higher rate of depression than men, the “FEELING down? You might be able to dust away your distress” line seems offensively sexist and dismissive.

Fibromyalgia, a personal overview

Preface

This is the second long post I have written about fibromyalgia (fm); the first concerned my experience with methadone, chronic pain, and fm. Click on “fibromyalgia” in the subject list at right to find it. There will be more in this series. Inevitably there will be some overlap between them, some repetition.

At the end of this post I will include links to some sites I think are useful. Some provide summaries, for us non-scientists, to current research; others explain the disease, give hints on living with fm, and track new drugs.

I was diagnosed with fibromyalgia in 1992, although the symptoms began about 1984. In 1980 I suffered a disk injury which caused chronic pain and poor sleep from then on. I worked at a full-time job that was physically active and psychologically stressful. By the time the disk problem was resolved (1996), ending the muscle spasms, the chronic pain/sleep problem had developed into fm.

The pieces I am posting here about fm are based solely on my experience, observation, and reading.

Five million patients with no treatment or cure

It’s hard to imagine today, but as recently as the late 1800’s there were still big blank spots on the map of the world, places unexplored save by their inhabitants who kept their knowledge to themselves.

Fibromyalgia is a big blank spot on the map of 21st century medicine. Its inhabitants comprise about 5% of the women over 18 in the United States and 0.5% of the men (data from 1995 study, see note 1). Since there are about 150,000,000 women in the US, and about 86% are 20 or older (this was the closest I could come, quickly, to the number of “women over 18”), then 86% x 150,000,000 = 129,000,000 and 4% x 129,000,000 = 5,160,000 women in the US with fm. For men (who may be under-diagnosed for various gender-based reasons such as stoicism or physician bias toward fm as a women’s disease), one-half of one percent = 645,000. Fibromyalgia is also diagnosed in those under 18, although they are not covered in these statistics. Studies indicate similar prevalence in other countries although there is a wide variance in results (from under 1% to over 10%) due perhaps to varying protocols and definitions, and the small size of some studies.

When I say there are no treatments, perhaps I should explain that. There are treatments that provide some relief of some symptoms for some patients. It is worth seeking out what works for you but don’t go broke doing it. I know of no medical treatment that works significantly for all pwfm. Remember that every drug has side effects; they vary from individual to individual, and what may be intolerable to one person is an acceptable trade-off to another. I tried Lyrica, the first drug approved specifically for fibromyalgia, and had two problems with it: by the time it began to lessen the pain, it was too sedating; and it caused unacceptable weight gain. Also, being a new drug, it was quite expensive. I hope others have better luck with it.

Current research is very promising as far as symptomatic relief and sleep improvement. Check out the sites listed at the end once in a while to keep up on things.

There is no cure. Beware of anyone making such claims. When you read of Jane Doe who has had a complete recovery with Dr. Quack’s treatment, remember: it may be she never had fm, or had only a very mild case, or is suffering from self-delusions (as in faith healing), or maybe (gasp!) she does not even exist.

What are the symptoms?

The official diagnostic symptoms are widespread musculoskeletal pain, severe fatigue, and disturbed sleep, in the absence of another provable explanation (see note 2).

This is a typical description of the condition itself:

Fibromyalgia (FM) is a chronic pain disorder characterized by widespread musculoskeletal aches, pain and stiffness, soft tissue tenderness, general fatigue, and sleep disturbances. The most common sites of pain include the neck, back, shoulders, pelvic girdle, and hands, but any body part can be affected. Fibromyalgia patients experience a range of symptoms of varying intensities that wax and wane over time. [National Fibromyalgia Association]

Here’s a list of common symptoms that are considered part of fm:

Severe fatigue

Poor sleep

Stiffness

Poor memory

Headaches

Restless legs

Irritable bowel

Overactive bladder

Depression

Exercise intolerance

Low back pain

Numbness and tingling

Painful periods

Muscle spasms

Jaw pain [TMJ]

Excessive tenderness

Sensitivity to bright lights

Sensitivity to loud noise

Sensitivity to perfumes

Sensitivity to weather changes

Excessive anxiety

Poor balance

Cognitive difficulties are very common: poor concentration, lack of memory, inability to locate everyday words when speaking, general confusion.

The group of pwfm is extremely varied. Some individuals have severe fm, others have milder cases. Some can work, others can’t. And any one person feels better and worse, sometimes in response to exertion or stress or the weather, sometimes due to no discernible cause. In addition, there are other very serious conditions sometimes found along with fm, such as lupus–but there’s no evidence that fm causes these other conditions.

Fibromyalgia and sleep

Sleep, for those with fibromyalgia, is officially described as “non-restorative”. This word feels inhuman and bloodless but it is accurate. People with fibromyalgia (hereafter pwfm) commonly describe their state upon awakening in the morning, as something like “feeling as if I’ve been hit by a Mack truck.” Before I heard this, before I was diagnosed, I used to say I felt as if I had been forced to run up a mountain all night and then kicked and rolled all the way back down.

The lack of restorative sleep, stage 4 sleep, may in itself be sufficient to cause the other primary symptoms which patients report: never-ending fatigue, of course, as well as overall muscular pain in which a pat can feel like a slap, inability to concentrate or remember, confusion.

Early on, a researcher (H. Moldovsky, 1995) reproduced the major symptoms of fibromyalgia in healthy young volunteers–males, as I recall–simply by depriving them of sleep. Parents of colicky infants could have probably saved him the trouble of performing the study. Having the sleep/fm connexion established, however, has not led to any substantial advances in treatment, let alone cure or prevention. No one can figure out exactly why we begin to sink into stage 4 sleep, and then are pushed back up into other less deep levels of sleep.

Without exception (as far as I know) pharmaceutical sleep aids do not promote a normal level of the stage 4 sleep (deep, slow-wave, non-REM sleep) which pwfm lack. It is certainly preferable to be unconscious in bed at night, instead of up reading in the living room for 4 or 5 hours. But sleep aided by pills doesn’t provide the rested feeling of a normal night’s sleep.

It is important not to oversimplify the association of disturbed sleep with fm. By which I mean, thinking that if only we could fix the sleep somehow, everything else would fall into place. Here are my reasons:

a) sleep may be the proximate cause of most or all of the symptoms, but it in turn may be at the end of a long chain of other things that have gone wrong, a cascade of causes.

b) Sleep, as a process, is very complicated and powerful: not only are there various stages or depths of sleep, but it interacts profoundly with the endocrine system. I won’t even add any other points of interaction with sleep, because once the endocrine system enters into the discussion as far as I can tell it is like 6 degrees of separation: now everything is connected with everything else, AND (unlike 6 degrees of separation) interacting and modifying everything else. Like a room full of kindergartners racing around all hyped up on sugary cupcakes, each one affects all the others as well as the total state of chaos. If we tie all the kindergartners to their chairs, have we ‘fixed’ this situation? If we achieve or impose ‘normal’ structures of sleep, have we ‘fixed’ fibromyalgia? There may be abnormalities in the sleep processes of pwfm that we can’t even detect, at a biochemical level. That said, obviously pwfm would be lining up in the snow to get the first tickets for that experimental ‘normal’ sleep!

PWFM: Our bodies are working differently

Many detailed studies have found specific physiological/biochemical ways in which pwfm vary from the norm: a substance that helps carry pain messages is found in abnormally high levels in their cerebro-spinal fluid; their threshold for pain is lower than that of other people; they suffer from a sleep disorder in which stage 4 sleep (most restorative stage of sleep) is continually disrupted; high levels of a nitric oxide-producing enzyme were documented by one research team to help explain why patients have exercise intolerance; excessive levels of oxidative chemicals that irritate the tissues (perhaps causing some of the constant overall pain) were found in the connective tissues in the tiny space between the muscle fibers; neurotransmitter disorders exist (serotonin and/or dopamine); atypical brain activity occurs in response to pain and other stimuli; and on and on. (For a partial list of such findings see this page on the excellent Fibromyalgia Network site.)

But, surprisingly, with all this detailed knowledge we seem no closer to real treatment or (in my dreams!) a cure. Is any of these abnormalities the “cause” of fm? For most, it doesn’t seem likely; filtering out the excess pain transmitter (Substance P ) from my cerebrospinal fluid, in some science fiction method not yet discovered, probably would not work. Whatever is causing my body to make or accumulate extra Substance P would just restore what it sees as my “norm”. Looking at this large and varied collection of anomalies, one may be the prime mover, and the rest secondary. Or, it is quite possible that we’ve not even glimpsed the “first domino” yet.

As far as I know, none of these differences from the norm are likely to become part of the process of diagnosing fm. Most are invasive and expensive, and not all of these variances would be found in all fm patients. Their value lies in directing further research, and in reassuring us that there is a physical basis for what we experience.

There does appear to be some genetic predisposition to fibromyalgia: diagnosis in mother/daughter, sister/sister, etc., is more common than is statistically likely. Now that genetic analysis has been made so much faster, research is going on to find out genes that may be associated with fm. A great development, but don’t hold your breath waiting for it to help you. Individual cases of fm vary greatly in severity and symptom profile, so this seems like it will be a complicated puzzle to solve even when/if gene differences are found.

Psychological aspects of fm

Pwfm, like many other chronic disease sufferers, are sometimes treated dismissively by doctors and friends/acquaintances. The disease is unfamiliar, non-fatal, rarely puts anyone in the hospital, and invisible as far as gross physical signs. “But you don’t look sick!” we hear, and I suppose it is meant to be encouraging but it comes across as suspicion of malingering, or at least denial of how crappy we really do feel.

Speak of a heart attack, rheumatoid arthtritis, diabetes, blindness, and you’ll rarely be greeted with “Oh, yes, I had that last week, I know just how you feel, but you’ll be fine with a good night’s sleep!” But fatigue, poor memory, achy body–everyone’s experienced this, and so they think they really do understand what we, and others with invisible chronic conditions, are enduring. And their understanding is generally based on experience which was mild, like the slight dulling of memory we all experience with age; or on something which improved quickly, like pain from over-exertion. I think it is better to say little about it, in most cases. Let your family know why your abilities are not the same as they were, and ask for their help, but otherwise keep your mentions minimal.

If you must raise the subject at your job, to ask for change to part-time work, or some other adjustment at work (provide seating for you, use plastic wheelbarrows instead of steel-binned ones, provide more varied work) choose your time and place, and be prepared with a letter from your doctor about your limits as to lifting, standing, etc. Present the supervisor with solutions enabling you to continue, don’t present yourself as a problem for the supervisor to solve. He/she has one easy way to do that! [Being quite unable to work is a different situation, one which I will talk about in a future post.]

Depression is not uncommon among pwfm and this has been used against us, as proof that it is all in our heads, perhaps even some sort of not-quite-conscious choice to be sick in order to get disability or attention. Anyone who could step into the world we experience, for a week or so, would see how untenable this idea is.

Before I was diagnosed, when I thought it was just stress, or even lack of exercise, I was forced to go through a process that I likened to throwing everything possible overboard off a sinking ship. In terms of one’s life, this means everything except job and necessary life-maintenance. Nothing fun–you’re way too tired to take in a movie, do some baking, play with kids or dogs, have fun with your dearest one. Concentration and memory decline sharply, further limiting one’s activities.

I already worked a fairly physical job but thinking I needed more exercise I got a puppy so I would have to walk and be active more. How did this work? Well, I was able to train her to take off my socks at night when I got home after work and took off my boots. She’d pull them off and then hand them to me, saving me two painful bending actions. [I could have asked my dear husband to do this, and he would have done so willingly, but I resisted things that would have made me feel more damaged than I already felt.] But the more exercise part was not helpful. Still, she was a lovely dog and worth all the extra exercise.

Anyway, depression seems like a very normal reaction for someone who has thrown overboard nearly all the enjoyable parts of life, is exhausted and in pain all the time, and has no hope for improvement (as you do after a terrible bout of the flu, which brings a similar exhaustion though not the overall pain).

If I’ve just lost my entire beloved family in a car crash, nobody except a reporter is going to ask me how I feel; anybody with a heart knows how I must feel and accepts it as entirely normal. This is depressive feeling arising from circumstances. Fortunately, our minds have ways to lessen, over time, the depression that results from the losses common to human life. Deep sadness and regret remain, but feeling a paralyzing loss of life’s significance, of its savor, gradually lessens with the passing of months or years for most people.

However, humans haven’t evolved ways to mute the depression from ongoing life-robbing conditions. Being a quadraplegic, being in a concentration camp, having severe diseases such as lupus, PTSD, or rheumatoid arthritis, these are a daily assault on the core of one’s being and one’s desire to live. Naturally, people get depressed, whether they try to hide it or not. [Please note that I am not setting up any comparisons of suffering here! I’m not saying x is like y or a is worse than b.)

There is considerable research to support the assertion that depression does not precede, and therefore perhaps cause, fibromyalgia: for instance, pwfm are no more likely than others to have been depressed prior to having the symptoms of fm; the degree of depression has no quantitative relation to the degree of pain; and chronic pain sufferers as a group, regardless of cause of pain, have a high rate of depression. I cite only one study (see note 3) but there are others.

A few practical recommendations

Another reason that depression and fibromyalgia have gotten connected in the minds of doctors is that, early on, it was found that certain anti-depressants seemed to relieve some of the pain of fm. Sometimes they do help, sometimes not. Maybe it’s placebo effect, maybe not. If you are offered anti-depressants for the relief of symptoms other than depression, be sure to discuss with the doctor what happens if this doesn’t provide relief, or if the side-effects (often weight gain is a potential side effect, and that makes you more tired) are intolerable. Make another appointment for evaluation of the treatment.

You must find a doctor who will work with you long-term, not one who writes a prescription and then feels his/her duty is done. Accept that fm, more than most conditions, demands that the patient take a very active role. A well-read fm patient is often more familiar with the disease and available treatments than her doctor is. That has been my experience and I have heard/read it from many others.

Find a doctor who can accept new information from a patient; bring in articles from medical or fm journals (not just news reports); and be diplomatic but firm if you really want to try something (or really don’t want to try something the doctor is pressing upon you). Learn from your doctor, ask questions. Educate yourself, learn coping mechanisms, stay away from anything that claims to “cure” this condition. When a cure arrives, believe me, we’ll all hear about it from many authoritative sources, not just from a TV report or the individual champions of a new herb or drug!

And as with any chronic condition, it is extremely useful to keep some sort of a daily journal: doctors and insurance companies really like record-keeping, and it will help you understand, for example, whether a given treatment is not helping or if the problem is that you had house-guests one week and worked overtime the next. No long entries needed, better two lines every day than two pages once a week. Rate your pain, your feeling of ‘functionality’, and your fatigue, from 1-10 (average for the day); note unusual events that could affect how you feel; note any variations in sleep such as getting to bed late, extra trouble sleeping, too painful to sleep. Okay, maybe that makes 3 lines, but if you can make yourself do it you will find it invaluable in dealing with your doctor, with any possible disability situation, and even with your fibromyalgia: it will give you a small feeling of control in that you can look for connexions, for cause and effect, for trends.

True clichés

Don’t give up. Your ailment is not your life. Don’t let it consume you.

Every person on this planet lives his/her life within some sort of limitations: intellect, means, education, health, social strictures or upheaval, and so on. If fm is one of your limitations, take it on. (The other choice is…?) Be flexible and smart and keep fine-tuning what makes you feel better (or less bad). Seek out the joys of life. Be as active as you can be physically and mentally, and don’t become self-absorbed. When you have a really bad day remember it won’t last forever (you may want to write this on the wall).

Notes

1.Wolfe, F et al. Prevalence of characteristics of fibromyalgia in the general population. Arthritis and Rheumatism 38:19-28, 1995.

2. The formal diagnostic criteria, established in 1990 by the American College of Rheumatology, are:

1. A history of widespread pain in all four quadrants of the body for a minimum duration of three months.

2. Pain in at least 11 of 18 designated tender points when the doctor applies four kilograms of pressure.

3. Giesecke T, Gracely RH, Williams DA, et al. The relationship between depression, clinical pain, and experimental pain in a chronic pain cohort. Arthritis Rheum 2005; 52:1577-1584

Links

The Fibromyalgia Research Blog

The Fibromalgia Information Foundation Information is provided by clinicians and researchers at Oregon Health & Science University in Portland, Oregon, USA and invited specialists from other locations. OHSU has an excellent clinic and research effort dedicated to fm (based on my personal experience).

The Fibromyalgia Network Also publishes the quarterly Fibromyalgia Network Journal; I recommend it. You can sample articles online to see if it is for you. Try to get your public library to add it.

The American Fibromyalgia Syndrome Association, Inc. (directly funds research)

The National Fibromyalgia Association

RomanMetalwork.jpg

Adornment to a Roman legionary’s horse harness; copper alloy with glass mosaic. First century AD? Source.

Feminism from the ground up, resoled

(A follow-up to my post of Sept. 29.)

No kidding, I’m on the Metropolitan Museum mailing list and this is their latest to me:

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7 miniature women’s shoes for Christmas tree ornaments, a mere $125. As before, I direct your attention to the shape of the shoe compared to the natural (I called it “roughly square-ended”) shape of the human foot.

Women are brainwashed into wearing shoes that cripple them and won’t allow them to walk––think Chinese foot-binding––and this footwear is glorified as religious ornamentation and signs of high status. We are offered, in both high and everyday fashion, clothing that restricts movement (at least we’re temporarily without the corsets that caused, really did cause, the fainting so common to that era), and makeup that escalates into clownishness, and oh the hell with it why go on.

Feminism, from the ground up

Progress toward equal rights for women. Toward women being human beings first, broads/gals/chattels not at all.

How do we measure it? Women’s earnings as a percentage of men’s have soared over the past 56 years, from 63.9% to 77.8%! [This is for year-round, full-time work, figures from U.S. Women’s Bureau and the National Committee on Pay Equity.] In another 56 years we’ll reach just over 90% at that rate. Or participation in Congress? 91 women serve in the 110th Congress: 75 in the House (55 Democrats and 20 Republicans) and 16 in the Senate (11 Democrats and 5 Republicans). Actually the 110th started out with 94 women but 3 died, frail creatures that we are. And that is a new record! 94 out of 535, or 17.5%.

Okay, all these statistics are depressing and boring. How about something easier? I’ve got it! As long as I open the newspaper and the big sale at, say, Macy’s, is selling shoes that all look like this

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then I know we are not doing well.

That imposing black number bottom left, the lady paratrooper model, has a heel four and one-half inches high. A third of a foot. Gives the girl soldier that added height that commands respect, and she can also rip the enemy’s throat out with a heel swing, or maybe just step on his toe and butt-stroke him with her rifle stock. She’ll be a career soldier, too, because after wearing shoes with 4.5 inch heels for 4 years, she will no longer be able to wear anything else.

The little silver pump bottom right may not add so much height to its wearer, only three inches or so, but everyone should give her a lot of respect for the suffering she smilingly endures, jamming a roughly square-ended human foot into a leather funnel as pointy-ended as an icing-squirter, for eight to ten hours a day.

And every single one of these designs sings out the same paeans to femininity with which Western poets have garlanded us for centuries: our grace and beauty, our delicacy, our nurturing tenderness, our oh so many gentle virtues…

The real religion of the world comes from women much more than from men – from mothers most of all, who carry the key of our souls in their bosoms. ~Oliver Wendell Holmes

The Woman-Soul leadeth us
Upward and on!
– Johann Wolfgang Von Goethe

Lead on, women, but ditch the fetishistic footwear, eh?

[All ugly shoes shown are trademarked by their manufacturers who are completely responsible for such triumphs of function and design. As a trade-off for not having permission to use the photos, I won’t embarrass the companies by identifying the brands depicted. Seems fair to me.]