Billboards for the Democrats

If you live in a state with hotly contested elections, your mail was full of wretchedly negative and misleading flyers last month. But, around here at least, we rarely see political billboards. When I did see one, it was this:

Billboard for conservatives.jpg

and it made me wonder why the Democrats hadn’t used billboards to get out simple positive messages about issues where there was great potential public support.

Here are some I made up, just quick mock-ups of a campaign for single-payer health care, but they give you the idea. If Obama had gotten people thinking along these lines, instead of ceding the issue to the Republicans, we might have a true universal health care system by now.

Health care for all means healthier kids billboard.jpg

“The United States provides health care to all senior citizens although children are the least expensive and most cost-effective group to cover.”

Single-payer health care for all means not losing your home to catastrophic health costs billboard.jpg

“Half of all respondents (49%) indicated that their foreclosure was caused in part by a medical problem, including illness or injuries (32%), unmanageable medical bills (23%), lost work due to a medical problem (27%), or caring for sick family members (14%). We also examined objective indicia of medical disruptions in the previous two years, including those respondents paying more than $2,000 of medical bills out of pocket (37%), those losing two or more weeks of work because of injury or illness (30%), those currently disabled and unable to work (8%), and those who used their home equity to pay medical bills (13%).

Altogether, seven in ten respondents (69%) reported at least one of these factors.” [from abstract of Christopher T. Robertson, Richard Egelhof, & Michael Hoke, “Get Sick, Get Out: The Medical Causes of Home Foreclosures” Health Matrix 18 (2008): 65-105.]

Billboardready to learn.jpg

Growing numbers of uninsured children have made it harder for educators to focus on classroom achievement without first addressing the medical needs of their students who lack health insurance or dental coverage. Instead of notifying parents when their children are ill, school officials increasingly must help find health care, arrange transportation for sick children and often advise beleaguered parents about the health consequences of their inaction. Schools that don’t accept the extra responsibility can lose those students to prolonged absences that jeopardize their academic advancement.“

And children who lack health insurance are unlikely to get help for conditions that interfere with learning, such as learning disabilities or vision and hearing problems.

Billboard “Single-payer health care for all…ask someone who already has it!”.jpg

An article about how people get happier as they get older, says it’s partly due to “resources that contribute to happiness, such as access to health care, Medicare and Medicaid”.

Billboard Single-payer health care for all…a healthier workforce”

Inadequately treated health problems result in lower productivity, greater absenteeism and turnover, and become more severe over time. Concern about losing job-related health insurance causes individuals to stay in jobs for which they are unsuited when they could be more productive and successful at other work (a situation called “job lock”).

Billboard, Universal Health Care means no more bake sales for kids with leukemia.jpg

It’s shameful to see contribution jars and raffles in local stores collecting for sick people who would otherwise be untreated. Mostly these are for kids, since we are all more sympathetic toward sick children, but there are also spaghetti feeds and various benefits put on for adults who have brain tumors or other acute and potentially fatal illnesses. And every year at this time brings those holiday campaigns in the newspaper, raising money for individuals or families, and often there’s a medical need there. One of the ones I remember was a local young man who’d lost a leg to bone cancer when he was 11; now he was working full time at a job (with no insurance) that was mostly standing, and since he was off his mother’s insurance he could not get a replacement for his outgrown prosthetic leg.

“It’s estimated that 9 million children are completely uninsured. But the new study says 11.5 million more kids end up without medical care for part of the year. And another 3 million can’t get a ride to the doctor. That’s more than 23 million children.” (2008 figures)

And finally,

Billboard Universal health care, it just amkes sense, and it’s the right thing to do

I don’t have a picture for this one. What I’d like it to be is not yet invented, some visual-mental device that reflects back to the viewer’s brain an image of him/herself, struck by a wasting disease well before the age of 65 when Medicare begins.

I do have a few more bits of information about the effects of not being insured. “Two large national studies of hospital admissions found that when the uninsured are admitted to a hospital, it is for a more serious mix of diseases and conditions, based on expected mortality, than the privately insured.…A study in California found that uninsured newborns with medical problems had significantly shorter stays (by 1.8-5.9 days) and received significantly less care (measured by total hospital charges) than privately insured newborns for several specific medical diagnoses. Another study found that the uninsured are at much greater risk of substandard hospital care due to negligence or poor quality: 40.3 percent of adverse events among the uninsured were due to negligence, compared to 20.3 percent for the privately insured who experienced adverse events.“ [source]

So the uninsured person, who is likely to be sicker when arriving at the hospital, is twice as likely to be the victim of negligent care during the stay. (Maybe it’s a mercy that the stay itself will be shorter than for the insured patient.) And the uninsured receive less treatment, whether for injury in a car accident, heart attack, or being born prematurely. More of them die, than insured people with the same conditions.

It’s a national disgrace and a drag on the economy; it’s contrary to our ideals and a terrible waste of the possibilities of human lives; it condemns many, from birth or before, to short and painful lives. It’s not open to compromise, Mr. President. You should have stood up for it and the issue should have been fully discussed before the people. If you think our attention spans are too short for extended discourse, you’re welcome to my billboard ideas.

Chronic pain—resources for patients

I haven’t written about chronic pain or fibromyalgia for many months, though I think about those subjects every day. A comment on one of my posts (Methadone and chronic pain: a personal account), raised the question of how a patient can help his family understand what he’s experiencing. Chronic pain can change a person in so many ways from facial expression to level of activity, interest in sex, mental acuity. For family, friends, and people at work, the changes can be frustrating, mysterious, threatening. What does this new behavior mean, who is this person, how long will it be like this? Why can’t s/he just live with that pain, why does it have to affect everything? Is s/he behaving like that because s/he doesn’t love me and the kids any more? Is it ever going to change back?

The person in pain is feeling a complex mix of emotions too, wanting to communicate and be close but embarrassed to admit how huge the effects of the pain really are, or to confess helplessness in the face of the pain. Will my spouse leave me, will my boss fire me, will I be thought crazy or weak, manipulative or a malingerer?

Patient
Can’t know how others feel about his or her pain and changes
Does know it has a negative effect, and may feel guilty about it
May feel helpless, resentful, guilty, frustrated, angry
Afraid to ask

Family and friends
Can’t know how patient feels physically or mentally
May feel helpless, resentful, guilty, frustrated, angry, abandoned
Afraid to ask

It’s the classic set-up for terrible misunderstandings and friction: intense emotions on each side, big stakes at risk (marriage, jobs, survival of relationships you’ve spent years building), and neither side knows what to say.

Then there’s dealing with the medical establishment, not easy for the person with chronic pain. Treating chronic pain is frustrating and unrewarding for physicians. The pain is invisible and resistant to treatment, progress is measured subjectively by the patient, misuse of pain medications is a serious risk, and perceived pain is affected by emotional and social factors outside a doctor’s comfort zone.

I’m choosing three parts of this huge subject to address now. First, ways to track your pain level and medications’ effects so that you can discuss them more clearly with others, including family and physician. Second, articles on families and chronic pain. Third, an annotated list of links to the major organizations concerned with pain, where more resources can be found.
My hope is that individuals can find tools here to help them get started with communicating better, understanding better. The tools are not the conversation, but they may be the foundation for it. To build on that foundation requires each of us to expose vulnerability, to admit how much other people mean to us, and to practice patience and compassion every day. And keep your sense of humor in good working order!

To that end, here’s an interruption, with a cartoon that nosleepingdogs has been saving for just the right occasion, and she hopes this is it. (Cartoon by Bizarro, reproduced without permission but with great appreciation.)

Bizarro,onNosleepingdogs.jpg

Making the invisible, visible

How can we pain patients help others understand what we’re feeling? Pain is invisible, it varies in type and intensity, and everyone has had some pain so they all think they know what chronic pain is like. Keeping a daily record, with numeric measurements, will give something concrete to point to, showing that you’ve had no pain-free days for the past month, or that your pain consistently increases under certain conditions. Such records are called pain diaries, journals, or logs, and they are a very useful aid in talking to doctors as well as to family members. They also give patients a way to know, and remember later, how this week’s pain compares to that of last week, or how this pain med compares to the one we used previously.

The heart of the pain log is a measurement scale for pain, like this one from the National Institutes of Health.

Numeric Rating Scale and use.jpg

At one end is “no pain”, at the other end “severe” pain, with the 10 at the end often described as the worst pain you can imagine. Record numeric pain ratings on your log form as often during the day as you think will be helpful. I’ve gathered several forms from various sites, which you can download or print directly. Because links change, I’m giving not only the original link to the site presenting the form, but also a link to a copy of the form hosted on my blog. The forms are free for personal use, I think none of these organizations will object, but not for any commercial purpose. Or, you can design your own form, and I include a sample that I made in a few minutes in a word processor.

Choose a form that lets you record the additional information that you think is important. Some include what meds you took and when, so you can compare that to changing pain level. Others have places to record levels of stress, quality of sleep, amount of exercise, and mood. I recommend photocopying or printing at least a month’s worth, and stapling them or putting them in a notebook. Be conscientious about this. It doesn’t take long to fill in the day’s information, and the value lies in writing it down at the time, and every day. Once a week won’t be much good, nor will it work to try and remember how you felt last week. Just do it, maybe when you brush your teeth at night, or after taking each medication, or after each meal.

Pain log templates

The thumbnails are just pictures, not links. View or download the forms with the links at the end of the description. All forms are in pdf format.

Here is the Daily Pain Diary Form from Partners Against Pain. It consists of 2 pages; one in graph format to record pain level and meds taken, the other with questions about breakthrough pain, sleep, side effects, other things you did to help relieve your pain, etc. Download or view this form from the original site, or from my blog files.

Daily_Pain_Diary.jpg

Next is the Pain Management Log, a simpler one-page form from Partners Against Pain. It records date, time, severity of pain, medicine or non-drug control method used, how severe the pain is one hour later, and activity at the time of pain. It can be used for a single day, or you can make entries for successive days on the same page. Download or view this form from the original site or from my blog files.

Pain Management Log from www.partnersagainstpain.com

The 8.5×11 Pain Log is a 2 page form, from the American Chronic Pain Society, unusual in that it uses cartoon-like symbols for levels of pain, exercise, stress, etc. Download or view this form from the original site or from my blog files.

8 5x11 Pain Log from the American Chronic Pain Society

The form pictured below is the one I made up quickly myself in a word processor, just as an example for those who want to design their own. One page. Download or view this form from my blog files.

Original pain form made on a word processor.

Next are two forms that are not for daily use but would be good to fill out before a visit to your doctor, as a sort of summary or review of a period of time. First, a 6-page questionnaire called Keeping Track of Your Care, from Partners Against Pain. (It seems to have been designed for cancer patients, but will serve other pain patients just as well.) In addition to summing up pain, meds taken, and that sort of thing, it also has a list of questions about the effect of the pain upon your life over the time period, and the usual drawing of a body front and back on which to indicate location of pain. The list of questions would be good to review before going to see your pain doctor each time, to be sure you bring up all your concerns.

This questionnaire also asks “What is your goal for relief?”, a great question to consider, and let your physician know what your goal is. It’s a good question for two reasons: one, you need to realize that zero pain may not be an achievable goal, and if it is not, what is your secondary goal? To continue working, to enjoy better relationships with your loved ones, to be able to be active for 6 hours a day before you have to stop, to get your pain from an 8 to a 3? Important issues to think about. And, second, it gives both you and your physician something defined to strive toward. Download or view this form from the original site or from my blog files.

Keeping Track of Your Care from http://www.partnersagainstpain.com/printouts/A7012PD2.pdf

Second, the 2-page Patient Comfort Assessment Guide, another from the Partners Against Pain organization.
Like the preceding template, this is not a daily record but the sort of thing that your pain doctor might have you fill out regarding your pain, meds taken and how much relief each gives on a numeric scale, side effects, and how pain has interfered with different aspects of your life in the past week, including mood, sleep, ability to concentrate, normal work, etc. Download or view this form from the original site or from my blog files.

Patient Comfort-Assessment Guide, another from the Partners Against Pain organization

How pain records help you talk to your doctor

Pain doctors have to have a way to decide upon, and justify, the medications they give you (or prescriptions for physical therapy, TENS units, referrals to nerve specialists, etc.). They can feel much more confident if you bring in a photocopy of your pain journal for them to keep in the file, with times, dates, and numeric ratings, than if you just come in and say “Doc, I need something stronger, this prescription just isn’t helping me.” If you feel your journal shows something in particular, go over the entries with your physician. Maybe your journal will show that what you need is medication for “breakthrough pain”, to be used occasionally as needed to keep the pain from getting the upper hand. Or maybe there will be a pattern telling the doctor something you’re not even aware of.

It is absolutely in your best interest to keep a pain journal, and keep it accurately. Don’t inflate what you are feeling. But—and here is another way pain records can help— do use them to show the doctor exactly how the uncontrolled pain is affecting your life. Restoring you to your previous level of functioning is the pain doctor’s aim, not making you feel good. That, I’m afraid, is up to you, perhaps with some help from anti-depressants or the like. But your doctor knows that people don’t feel good when they can’t do the normal things in their life because of pain, so improving function does, indirectly, also improve mood and enjoyment of life.

When my pain was at its worst, I began to think of my life as a sinking ship, from which everything nonessential was being thrown overboard. Anything I did just for enjoyment, over it went. The “have-to’s” of course were kept: working, commuting, taking a shower, shopping for food, and so on. Your pain journal can be the evidence of how much of your life has been “thrown overboard”, or become very difficult, because of pain (and the fatigue that goes with it). Choose a journal template that will help you record this, as well as levels of pain and how well meds or other methods work.

How pain records can help you

They can help you measure progress, or lack of it, over time. When you feel rotten all the time, the days can all blend together. Then you look back at your records and see that 6 months ago you couldn’t walk a block, or sit in the car for more than 15 minutes. Now both of those things have improved. “Wow! I’m making progress!” Give yourself a pat on the back, figure out what made the difference, and work on it some more. Or, no progress? backward movement? Then you know what you are doing is not working, and you and your doctor need to talk about this. And you’ve got the evidence on paper to show her or him, rather than just walking in and saying that you feel worse than ever.

What’s on paper can also help your family understand your situation, what you are going through. They may not need to look at the pages, but just being able to say that for the last month your pain level hasn’t been below 6 on a scale of 1 to 10, is a concrete representation of something otherwise invisible and hard to think about. “Dad hurts all the time” doesn’t have the same impact.

Articles for chronic pain patients and their families

My search for reading material I can recommend has just begun, it seems, since so far I’ve found only one article, and no books. I’m hard to please, apparently. I have no use for material that doesn’t adequately distinguish between addictive behavior, and the behavior of a pain patient who’s become habituated to opioids (see earlier post, Dr. House’s writers betray pain patients), or for intimations that people with chronic pain just need to think positive thoughts and get some exercise. (Though I won’t deny, both of those are good things! Both can make you feel a little better, too, but they are not cures for pain, and many people are in such pain that the advice is a mockery.)

Surviving a Loved One’s Chronic Pain. This article was written by a pain doctor as a handout to patients.

This handout was inspired by a patient of mine who came into my office and inquired what resources were available for the family members of patients with pain to help them understand what their loved ones were going through. He discussed how his wife was frequently angry at him for not doing more physically at home while she was at work and how she often yelled at him. He felt guilty about it, but felt he did as much as he could tolerate. I was embarrassed to admit that I did not know of any handouts explicitly directed at spouses, family members, and other loved ones. After doing some research on the Internet, I discovered several very helpful publications, specifically Julie Silver’s 2004 book, Chronic Pain and the Family: A New Guide (Harvard University Press) and the American Chronic Pain Association family manual, ACPA Family Manual: A Manual for Families of Persons with Pain, written by Penny Cowen (ACPA, 1998). I also found some helpful articles by Mark Grant, a psychologist in Australia, especially his “Ten Tips for Communicating With a Person Suffering From Chronic Pain,” which is available on his website, http://www.overcomingpain.com. Mark was kind enough to allow us to summarize his suggestions here. As well, one of us (Whitman) has a website to help patients cope with chronic pain, and occasionally discusses family issues on it (www.howtocopewithpain.org). Much of what is in this handout is taken from these sources.

What was striking, however, is how little material there was oriented toward the family compared to the massive amount of self-help material oriented to the patient with pain. In view of the profound effect the patient’s pain has on the family and the equally profound effect the family’s (and friends’) responses have on the patient with pain, I found this troubling. I also felt that while Silver’s book and the ACPA manual were very helpful, few family members would get them and fewer read through them. What was needed, I felt, was something brief and to the point. This is the result of that determination.

Surviving a Loved One’s Chronic Pain, four pages, available as a pdf from the original source, pain-topics-org, or from my blog files.

This article recommends another that I agree on, “Ten Tips for Communicating With a Person Suffering From Chronic Pain” available at overcomingpain.com or from my blog files.

Organizations concerned with pain

American Pain Society
a professional medical organization with some education functions. They do research on sub-topics in pain and also some advocacy.

Publications include:
Guides for Persons with Pain
Patient Guide: Managing Osteoarthritis Pain
Consumer Guide: Managing Rheumatoid Arthritis
Parent Guide: Managing Pain from Juvenile Chronic Arthritis
Guide for Adults with Cancer Pain
Guide for Adults with Fibromyalgia Syndrome Pain
The above are short pamphlets, 12-16 pp and are offered for sale in sets of 25 of one title, for medical. There is no version that can be read online as far as I could find.

American Pain Association

They say, “Pain has been ignored as a problem by the medical science and society for a long time. The fact that America still doesn’t have a National Institute of Pain indicates this lack of attention towards pain. Surprisingly, America does have a National Institute for Addiction. The primary efforts of the American Pain Association are directed towards education and research. We are also working in the area of developing expert consensus statements regarding pain issues.”

Seems to be mostly a professional organization, offering certification courses in pain, and basic and advanced courses in pain management for all medical personnel including nurses, physicians, pharmacists.

American Pain Association page summarizing new methods of pain relief, will give you some ideas to research or ask about.

American Chronic Pain Association

A previous organization, the National Pain Foundation, is merging with the ACPA.

The ACPA has some very good informational resources, including their Chronicle (archives here). For example, the Summer 2006 issue was devoted to nerve pain.

Partners Against Pain, source of many of the forms I’ve described above. They describe themselves as “a resource that serves patients, caregivers, and healthcare professionals to help alleviate unnecessary suffering by advancing standards of pain care through education and advocacy.” Advocacy is a major element of their work, but other material is available too. They publish a Resource Guide for People in Pain which contains some of the forms above, and others including checklists for doctor visits or the ER, as well as sections on other aspects of health that are good to review, like nutrition, stress, and exercise; it also has lists of organizations concerned with certain diseases or conditions, or professional fields, or patient support. I recommend skimming through it for what you need at the moment. Read or download it here.

American Pain Foundation

APF is an education & advocacy group, which actively works with the news media on conveying pain issues, and publishes a semi-annual Pain Research and Practice Update. The Summer 2010 issue is here.

They have a library of online materials which I haven’t explored yet, but it looks worth checking out. Here’s the directory:

Information Library

• Audio/Video Replays
• Chat Transcripts
• Pain Conditions
• Pain Topics
• Publications
• Q&A About Pain
• Top Ten Tips for Coping
• Webinar/Teleconference Replays

Pain Resource Information
• Financial Information & Assistance
• Finding Care
• Journals
• Pain Law & Ethics
• Pain Links 
• Pain Resource Locator

Programs & Campaigns
• Acute Pain Spotlight
• Back Pain Spotlight
• Breakthrough Cancer Pain Online Guide
• Cancer Pain Spotlight
• CareCentral for Caregivers
• End of Life Care Spotlight
• Exit Wounds – Military/Veterans Pain Initiative
• Fibromyalgia Spotlight
• Health Decision Making Online Guide
• Let’s Talk Pain
• Shingles & Post-Herpetic Neuralgia Spotlight
• Yoga for Chronic Pain & Disability

The vocabulary of pain

Pain and its treatment have a specialized vocabulary. I found some online glossaries that may be of interest in understanding exactly what is being talked about.

Chronic Pain Glossary of Terms
Pain management: Glossary of terms

American Pain Society Glossary of Pain Terminology

Algae poses threat to humans as well as animals

Health departments have been trying to inform swimmers and pet owners that they should avoid water with visible algae, since ingesting it can cause severe and sudden illness including convulsions or even death. In our state, three dogs died last year after swimming at a reservoir. One died before his owner could even get him to the car, another died on the way to the vet.

Now, a recent report in the ProMED health tracking network calls our attention to human risks that don’t involved either entering or drinking the algae-contaminated water.

One man, whose dog died after a swim in the lake, was hospitalized last week [week of 19 Jul 2010] after he gave the dog a bath. Within days, the 43-year-old man began having trouble walking and lost
feeling in his arms and feet.

“We weren’t swimming in the lake because it’s disgusting,” said the
victim’s wife, whose husband, is still having trouble with memory loss and fatigue. “Our dog was just covered in that sludge, and my husband washed him.” Washington Examiner, July 30, 2010.

According to one doctor treating the Ohio man, his neurological problems may be permanent. But he’s better off than his dog, who died despite having the algae washed off.

The algae are in the “blue-green algae” family, and are actually not algae but photosynthesizing bacteria, called cyanobacteria. Blooms, or overgrowths, in bodies of water (fresh or saltwater) are encouraged by temperature change and increases in nutrients, often from agricultural runoff into the water. The cyanobacteria, like some algae, make toxins harmful to fish and mammals. Humans have been aware of this mostly through being poisoned by eating shellfish, which concentrate the toxins. The familiar warnings about “red tides” and issuance of “shellfish advisories” result from these conditions.

While it has been known that skin contact with toxic algae could produce illness in humans, the severe results from relatively small exposure—simply washing an algae-slimed dog—seem to be worse than expected.

The lake in Ohio is Grand Lake St. Marys; it’s the largest inland lake in the state by area, but is extremely shallow, with an average depth of only 5 to 7 feet. This shallow lake warms up more, and doesn’t dilute the runoff of agricultural fertilizer and livestock waste as much as if it held more water. Recent algae blooms have killed so many catfish that crews were shovelling up the dead fish. With the lake surrounded by warning signs, the area’s $160 million tourism industry has declined, and a boat race that draws about 30,000 people in late August each year has been cancelled.

Some algae are harmless, but there are many different algae or bacteria that can produce dangerous levels of toxins when they bloom. Some are more harmful than others but it’s foolish to take chances: keep yourself, and children and pets, well away from any water that has a visible algae presence. This can be greenish, reddish, or other colors. Or it can appear as just cloudiness or discoloration in the water, as foam or scum floating on top, as mats on the bottom, or actual filaments or pellets. And don’t let kids or pets wander to areas of a river, stream, or lake that you have not closely checked.

Algae by rocks.jpg

Source.

An Ohio factsheet sums up the methods of exposure, and known symptoms:

Skin contact: Contact with the skin may cause rashes, hives, or skin blisters (especially on the lips and under swimsuits).

Breathing of water droplets: Breathing aerosolizing (suspended water droplets-mist) from the lake water-related recreational activities and/or lawn irrigation can cause runny eyes and noses, a sore throat, asthma-like symptoms, or allergic reactions.

Swallowing water: Swallowing HAB-contaminated water can cause:
◦ Acute (immediate), severe diarrhea and vomiting
◦ Liver toxicity (abnormal liver function, abdominal pain, diarrhea and vomiting)
◦ Kidney toxicity
◦ Neurotoxicity (weakness, salivation, tingly fingers, numbness, dizziness, difficulties breathing, death)   Source.

Splashing of water in eyes, or inhaling droplets of contaminated water, can get the toxin into your system. One of the toxins from cyanobacteria, Saxitoxin is “reportedly one of the most toxic, non-protein substances known. It is known that the LD50 (median lethal dose) in mice is 8 micrograms/kilogram. Based on
a human weighing approx. 70 kg (154 lb), a lethal dose would be a
single dose of 0.2 mg.” [Source, ProMED report.]

How much is two-tenths of a milligram? There are a thousand milligrams in a gram, and a dime or a paper clip each weigh about 1 gram. So an amount of toxin weighing the same as two ten-thousandths of a paper clip may be lethal.

Algae,feet in water.jpg

Source.

These “Harmful Algal Blooms” can occur in large or small bodies of water; often, but not always, they are in areas where the waterflow is slow (near shore) or nonexistent (stagnant). Small pools or puddles separate from the main body of water can contain algal growth. Even in tiny amounts the toxins can have devastating and sudden effects of humans or animals.

Eating fish or shellfish from contaminated waters is dangerous too. Cooking does NOT render toxins safe.

Algal blooms can be very transient, appearing and disappearing in a matter of days to weeks. If you spot a possible instance and there are no warning signs, it may not have been found yet. Stay away from the water and call your local or state health department so they can track outbreaks, and put up signs.

For the state of Oregon, current advisories can be found online here. The HAB team can be reached by email at Hab.health@state.or.us, by phone: 971-673-0440; Toll Free: 877-290-6767; or by fax: 971-673-0457. Other states should have similar programs; your city or county health department ought to be able to tell you more.

Why are these toxic algae blooms becoming more common?

The short answer is, better growing conditions for algae. They thrive in warm water, and temperatures are going up. Nutrients (nitrogen and phosphorus) from human activities pour into streams, lakes, rivers, and the ocean, and act like Miracle-Gro for the algae. Sources include runoff from fields treated with fertilizer or manure, spraying partially treated sewage sludge, sewage overflows, and runoff from pastures.

What can be done?

Rising temperatures, that’s a big one. Let’s just look at eutrophication or over-nutrification of water, since that’s something where local efforts can have relatively immediate local effects. Obviously, better treatment of sewage (including livestock waste) and reduced use of fertilizers (in agriculture, on golf courses, in parks, and in our own personal yards) are important steps to work on. On July 1st, 16 states will begin enforcing laws that require dishwasher detergents to be almost phosphate-free. That’s a small but significant improvement; the legislator who introduced the bill into the Pennsylvania legislature estimated that 7% to 12% of the phosphorus entering sewage plants came from automatic dishwashing detergents. New guidelines from the federal Clean Water Act to reduce nitrogen and phosphorus have provided more impetus to these particular efforts.

Not so obvious steps:

At least one study found that use of organic fertilizers led to less nitrogen runoff than use of chemical fertilizers.

Remediation of areas where nitrogen is stored in soil, from decades of deposition by one means or another, is possible but expensive and slow.

And years of research is showing us, surprise surprise, that intact aquatic communities slow the trickle-down of nutrient pollution (from, say, creeks to streams to rivers to a lake) and seem to enable a body of water to better resist eutrophication. Dr. David Schindler (Professor of Biological Sciences, University of Alberta) has studied the problem for decades including 37 years of work on Lake 227, a small pristine lake in the Experimental Lakes region of northern Ontario. He says, for example, that overexploitation of piscivorous (fish-eating) fish seems to increase the effects of eutrophication. (His earlier work energized the campaign to reduce phosphorus pollution.)

A study along the Georgia coast suggests that tidal marsh soils protect aquatic ecosystems from eutrophication, caused by the accumulation of nutrients. And they sequester large amounts of carbon, helping us slow down climate change. I would expect similar results with regard to freshwater wetlands and marshes. When I was a zookeeper I worked with mechanical incubators for bird eggs, none of which was as reliable as one of those “bird-brained” hens of whatever species. We are told that the appropriate native herbivores—bison, wildebeest, and so on—produce more meat per acre and do less damage than introduced species like cattle. And now we’re coming around to seeing that oldmothernature is better at water purification than we are, if we leave existing systems intact (but we never do).

Salt Marsh.jpg

Salt Marsh near Dartmouth, Nova Scotia; more good photos of this marsh here.

Does fibromyalgia “get better” with age? (Alert: Whining ahead)

I’ve encountered this statement a few times since being diagnosed with fibromyalgia in 1992. Finally, at age 63, I think I’m qualified to offer an opinion upon it:

No, unlike a fine wine or a teething puppy, fibromyalgia does not get better with age.

It might seem that way, because some things that do change with age may lessen one’s concern about symptoms, or even ameliorate them.

As we grow older, we expect to have memory lapses, aches and pains, and reduced energy and strength. The person with fibromyalgia has a head start on all of these, believe me! But with advancing years, these symptoms seem a bit less unreasonable—or perhaps I should say unseasonable—even though I am still more tired, forgetful, etc., than an otherwise healthy person of my age ought to be.

Starting several years ago other people about my age began assuring me that my symptoms were “normal” for this stage of life, they had them too. Their intentions were benign, but I don’t like to hear this; not because I am clinging to the distinction of my disease, being “sick” but not “old”, but because I feel that the impairments of fm have been different. [It also echoes the remarks so familiar to people with fm or cfs or other chronic conditions, “Oh, you’re really tired/achy? Yes, I’ve had that too, just get some extra rest, you’ll feel better.”]

I was 35 when an injury caused the continuous pain and disturbed sleep that gradually turned into fibromyalgia by age 40 or so. During that time I went from having an unusually good memory, to the reverse. What did I do yesterday? Did I eat lunch today? What did I do this morning? Often I can’t answer such questions without some sort of reminder. Sometimes even with a reminder I have no recollection whatsoever of very recent events, and everything beyond a few days ago is gone or vague. Some days I grope for words—for a particular word, or to be able to put my thoughts into words at all. For a person who used to remember where on the page a certain passage of a book was to be found, or the details of bibliographic citations years after checking them, this sudden decline was, and remains, a severe assault upon my sense of who I am. And rightly or wrongly I think the daze that so frequently envelops me is not typical for a 63-year-old. Maybe at 85 I’ll feel it is age-appropriate. Until then, dammit, I’ll feel ticked off and robbed. Join the club, eh?

Still, inevitably over time one grows less sensitive to diminished abilities, and the limitations are less at odds with one’s lowered expectations.

As for symptoms seeming to decrease with age, I think this is a result of getting better at coping and self-pacing. I’ve learned to avoid things that aggravate the fm, such as late nights, loud or crowded places, being on my feet too long, and overexertion (whether it be in duration or in type of activity). I’m less of a perfectionist, I have a combination of medication and mental techniques to help me get to sleep most nights, and I feel okay about saying “I need to go lie down and rest for a while”. It’s following the naval maxim of “maintain a steady strain”.

The danger with all of this—lowered expectations, avoidance of stressors—is that it becomes a downward spiral. And age provides a reassuring excuse. Of course I’m doing less than I did last year, I’m getting older.

I keep pushing myself mentally, with challenging reading and dogged efforts to learn new things. Even though most of what I read today will be gone from my mind tomorrow, I tell myself that the effort may keep the neural connexions from deteriorating as we know they do with lack of use. Blogging has become a good motivator, encouraging me to do some writing, and follow research interests to produce and finish short pieces.

Physical exertion is harder because the pain and fatigue always increase, sometimes severely. When I was working a fairly physical job, I came up with this description for how I felt when I got up in the morning: “as if I’d been forced to run up a mountain, and then kicked and rolled all the way back down”. The chronic fatigue and pain in muscles and joints have been dialed back now that I’m not on my feet all day lifting, bending, carrying, etc., but they’re still there. I’m struggling to stay on a program of walking about 45 minutes every other day, motivated by a recent blood-test result that was in the pre-diabetic range. Some days I don’t want to expend a big part of the day’s energy for walking, or I feel worse than usual. There are no rewards of feeling noticeably better, but if I take the dog and my camera I will enjoy the walk itself.

Being off of methadone has made a big difference mentally and physically. It’s been two years last month, and I think I’m still improving. I couldn’t have walked for 45 minutes before that. Drugs that don’t help just weigh you down, and methadone does a lot more harm than most. (earlier post about getting off methadone)

So, in some ways I really am feeling better. But it’s not due to aging.

Thistles,GrazingAmong.jpg

Note for logophiliacs

After I put the word “whining” in the header, I encountered what would have been a good alternative if it weren’t quite so obscure. It has such appropriate associated meanings. I may whine and twine, but I’m trying not to dwine.

Twining
A minor lexicographical result of the devastating floods in Cumbria last week has been the appearance in at least two UK national newspapers of the dialect word twine, to complain or whine (“Cumbrians are a unique breed. They say what they see. They are hands-on people. They will twine and moan but then they will just get on with it.” — Metro, 23 November). It was at one time widely known throughout Scotland and the north of England. By way of another of its senses, to be fretful, ailing or sickly, it may be connected with dwine, another dialect word, to pine or waste away, which is from an ancient Scandinavian source. from Michael Quinion’s World Wide Words, # 667, 28 November 2009.

Photo by author.

Total knee replacement surgery, the second time around: learn from our experience

Nearly three years ago my husband had Total Knee Replacement (TKR) surgery. It’s drastic and major surgery, which people usually only choose when the pain from osteoarthritis becomes intolerable. And, it was not done properly so that last month it had to be re-done! Perhaps our experience can be useful to others.

Why do knees need to be replaced?

Generally because of pain and restricted motion caused by loss of cartilage (which cushions and separates the bony parts of a joint) and growth of bony “spurs”. This is labelled osteoarthritis. Other causes, like trauma, rheumatoid arthritis, and infection, account for a minority of the 300,000+ TKRs each year in the US.

As to what causes osteoarthritis, that is less understood than previously thought, when it was all blamed on “wear and tear”. The knee is the largest joint in the body, and bears the complete weight of the body at each step we take, so it is indeed subject to lots of “wear and tear”. Common-sense risk factors include types of high-stress activity in work or sports, injury, obesity, infection, stiffness from lack of activity, and age (since cartilage becomes more brittle with age). However, not all elderly people develop arthritis and some who do have no significant pain. This is why I said above that knees need to be replaced, not because of osteoarthritis, but because of pain and reduced range of motion.

The biologic factors leading to the deterioration of cartilage in osteoarthritis are not entirely understood. Many experts believe that osteoarthritis results from a genetic susceptibility that causes some biologic response to injuries to the joint, which in turn leads to progressive deterioration of cartilage. In addition, the ability to make repairs becomes progressively limited as cartilage cells age.

Although osteoarthritis generally accompanies aging, osteoarthritic cartilage is chemically different from normal aged cartilage. As chondrocytes (the cells that make up cartilage) age, they lose their ability to make repairs and produce more cartilage. This process may play an important role in the development and progression of osteoarthritis. [Emphasis mine. Source: www.healthcentral.com ]

What’s involved in Total Knee Replacement surgery?

The x-rays below, from the site of a prosthetics manufacturer,

kneeXraysB&F.jpg

show views of a knee before and after surgery. On the left, cartilage loss has caused bone-on-bone contact: very painful. Bone spurs or bits of broken bone floating around can also cause pain in the deteriorated joint. On the right, an artificial knee joint (prosthesis) is in place. (These are not x-rays of the same knee; in fact, looks to me like one’s a left leg and the other is a right leg.)

Here are some views of prostheses. To install them, the ends of the two long-bones of the leg, tibia and femur, are sawed off (removing “usually between 2 and 12 mm” according to one source) and the artificial joint is affixed with cement, screws, etc. The work involved in removing bone and attaching the prosthesis involves considerable force and power tools. Note that the knee-cap, as well as muscles and ligaments, must be carefully moved aside to install the prosthesis. [Picture sources: 1, 2, 3 ]

KneeProsthesis1.jpg

knee-bone&prosthesis.jpg

knee-implant1.jpg

There are many patented designs for artificial knee joints, and these illustrations are for general example only. Surgeons have their preferred models; many were developed by orthopedic surgeons, and those surgeons tend to prefer the ones they have an interest in. Choice of prosthesis isn’t something the patient can weigh in on, we don’t know enough, but you may want to find out if your surgeon has a financial interest in the one he is going to use; if so, perhaps a second opinion would be valuable on the pros and cons of various types as applied to your individual case. Most insurance will pay for a second opinion for major surgery.

Research continues for better, longer-lasting designs and breakthroughs are regularly announced with fanfare––but some don’t fulfill their original promise, as with teflon-lined joints which wore away much faster in practice than lab tests had predicted. You will have to rely on the experience of your surgeon.

You can see photos of the stages of knee surgery (not for the faint-hearted) here, on a prosthesis company ‘s site.

Our experience

Surgery #1, 2006

Now, back to my husband’s case. Dan had knee pain for years that ruled out unnecessary walking, as in hiking or walking for enjoyment, and interfered with sleep. There was bone on bone contact and perhaps bone spurs or growths from osteoarthritis. In August 2006 he underwent total knee replacement surgery by an established older orthopedist in our area. Afterwards, the surgeon came out to me in the waiting room and told me that the operation had taken half again as long as planned because they had “run into something unexpected”. Later, when we knew more, that remark would have much more significance to us. The “something unexpected” was apparently the result of a broken leg at age ten, that had caused greater reliance on the other leg (the one that received the TKR).

The surgery was brutal, with terrible bruising all over the leg, and post-op pain and swelling were severe. From the beginning, the prosthesis felt loose and insecure, sometimes the knee buckled, and after the post-surgical pain subsided, he was still in pain sufficient to make walking difficult. At each visit with the surgeon Dan raised these issues and was told to exercise more, and that it would get better with time. Two years on, that hadn’t happened, and the surgeon then agreed that the knee was a bit loose and offered to go back in and “put a shim in it”.

At some point after the 2006 operation, when it became apparent that it had been unsuccessful, I began to research the subject. Immediately I found that it’s common practice now to use Magnetic Resonance Imaging before TKR, rather than merely relying on x-rays. MRIs provide an exact and minutely detailed three-dimensional picture of the joint. The data can be used to make a 3-D visualization that can be rotated. This way the surgeon knows exactly what to expect; the prosthesis is customized, if necessary, beforehand; the surgery is generally shorter and the incision may even be smaller. (Other advances, such as computer-assisted orientation systems to guide the surgeon in positioning the prosthesis during surgery, may also be used.) Nothing like this was done in Dan’s case, and we didn’t know to ask about it. We know now that the original surgeon does have access to an MRI, in the hospital across the street from his office, and used it to look at Dan’s hip after the bad artificial knee began to cause a lot of pain in his hip, back, and other knee. But he didn’t use it for the knee needing replacement.

Surgery #2, 2009

Finally, after the remark about putting in a “shim”, we began to look for another surgeon. I searched online for someone who used MRIs and computerized techniques for joint replacement and who was experienced in what I learned is called “revision” (re-do) of TKRs. (Some surgeons, including the only other ones in our area, won’t touch someone else’s failures.) I found a surgeon who met these qualifications, about 4 hours drive from where we live, and we went to see him. The first thing he did was to get a full-leg digital x-ray, which surgeon #1 had never done. He showed us the x-ray, and used software to examine the precise alignment of the prosthesis. It was 7.5° out of alignment. In effect, his lower leg-bone had been detached and then put back on at a different angle from the upper leg. For over two years the first surgeon had taken no steps to examine the results of his surgery, other than feeling the knee.

We liked what we saw here, added to what we already knew about Surgeon #2’s experience, and proceeded with the preparations for a revision.

In late May Dan went through the revision surgery. Pry off the old, shave off a little more bone, affix the new.

When the surgeon met with me afterward in the waiting room, he had troubling things to report but they weren’t about what had just taken place. He told me that the prosthesis he had removed was badly installed. He actually used the word “sloppy”––and you know how rare it is for doctors to criticize one another’s work! The lower part was out of alignment both front-to-back and side-to-side; the upper part was supposed to be stabilized by the bone growing into it on all sides, but this had not taken place (he remarked that he did not use this model because sufficient bone regrowth often failed to occur). So this artificial joint had been loose and seriously mis-aligned, with every step stressing both parts of the prosthesis, the ends of the bones, the muscles/ligaments/tendons, and the other joints involved in walking (back, hip, other knee). It was clear, said the surgeon, that this had been causing Dan considerable pain, and he felt confident that the new prosthesis was going to be a great improvement.

Today is post-op day 19, and there is no comparison between the two post-op experiences. The day after the surgery they got Dan on his feet, and the first time he put his weight on the new knee he said that it felt more solid than the old one ever had. The next day he was walking the hall, slowly, and walking without hip pain for the first time in ten years. Bruising of the leg is minimal, the incision is shorter, and pain is less. The first time he was using fentanyl patches, very heavy opioid painkiller, and was still in too much pain. This time it is Tylenol-3 every 4 hours, and ultram (tramodol) occasionally when needed.

The incision is closed with superglue, covered with crossways lengths of what looks like strapping tape: no staples to distort the skin and then have to be removed. He was able to take a short shower on post-op day 5. Last time the first shower was not permitted nearly so soon and he was in so much pain he had to sit down on a plastic bench in the shower. This time, he was easily able to stand and feel secure. He’s in pain, but not nearly as much as last time, and the solidity of the knee makes it possible for him to get around the house carefully but confidently, only occasionally using his walking stick for stability (and to keep the dogs from bumping him).

Like the first time, the anesthesia was a spinal block (not general anesthesia) but the new surgeon added a femoral nerve block. As I understand it, the spinal keeps pain messages from reaching the brain during surgery; the femoral block keeps the nerves immediately affected by the surgery from registering pain which gets the nerves excited even though the brain doesn’t hear about it. It’s supposed to lessen post-op pain and it certainly seems to do that, especially for the first 24-36 hours.

There is swelling, but it’s not bad unless he keeps his leg bent too long while sitting; last time he was still mostly in bed for at least 2 weeks, and the swelling was severe from above the knee to the foot. Perhaps this is related to another difference in surgical procedure: this time a drain was placed near the incision with a receptacle attached which had to be periodically emptied of fluid, partly blood. Before the drain was removed, 1200 cc of fluid had been collected. The first surgeon did not place such a drain, the leg continued very swollen, and at the two-week check-up the surgeon had to use a syringe to remove at least 200 cc from the still very swollen knee. Doing this is risky because in raises the risk of infection, which would be a dire complication.

At this point the future looks very good for this new knee, and we are talking about being able to get out and hike with our dogs again. I still have limited energy (fibromyalgia) but more than I used to, since getting off of methadone which I took for pain.

Lessons learned

The parts of our experience that I think may be useful to everybody facing joint replacement surgery are these:

Research and ask questions. Get a second opinion.
This is major surgery which will shape your everyday life for the next decade or more. Revisions are to be avoided: not only because of pain and expense, but each surgery removes a little more bone. Don’t be afraid of getting a second opinion, even if your orthopedic surgeon seems great. Believe me, if your orthopedist were going in for brain or heart surgery, he or she would ask around, not just take the first name in the phone book! Insurance generally covers second opinions for major surgery.

Educate yourself about the surgery in general: what can go wrong, and why? what are the different methods?

In choosing a surgeon, standard advice is to find someone who has done this particular surgery a lot and does it regularly. That’s good advice, but incomplete. Our first surgeon had lots of experience and he performs knee replacements regularly. But based on results and what we’ve learned since, this fellow has not kept up with new methods: MRI’s, femoral nerve blocks, post-surgical drains, etc.

Of course nothing is better just because it is new. Some things provide an advantage even the layperson can evaluate, such as the use of MRI’s to see exactly what the joint and surrounding bone look like, so that the operation can be planned using that information. There’s no real downside for the patient in providing better information to the person doing the cutting and sawing. As for the high-tech implantable prostheses used in TKR, there’s always something new coming out, which may or may not be better. You can at least ask a surgeon how long he has been using the device he intends to implant into your body, what the failure rate is, and when and why it fails. Does it fail to be stabilized by bone growth, or do components or surfaces wear out? Does it loosen in 2 – 5 years, for whatever reason? Do particles get ground off and act like grit in a bearing?

Read up on the subject and you’ll get an idea of what to ask. Take notes on your reading and your concerns, and bring them with you; then take notes on what the doctor says. Have someone else come along to help by writing things down, reminding you of questions, and in general giving you moral support. The doctor is the expert, but your body is what’s at risk; don’t be timid about asking. In my mind, a doctor who won’t answer my questions fully, as fully as I want, doesn’t get my business.

Also ask what to expect after the surgery. Surgeon #1 kept stringing us along, telling us that things would get much better. Now we hear from others that isn’t really true, that you “know” right away. And indeed the bad job felt loose from Day 1 and never changed; the recent revision felt solid from Day 1. Certainly, telling us for 2 years that there would still be improvement, was unrealistic (charitable interpretation) and dishonest (blunt interpretation).

More information on Total Knee Replacement

There’s an encyclopedia-style summary of the procedure, risks, failures, etc. here that looked good to me, and another page on this site deals with TKR revisions (re-doing the TKR).
Wikipedia also has good information.

How to reduce the chances that you’ll need knee replacement surgery

It’s no fun, really. And you’ll get stopped by airport security for a special check, every time.

Knee_Replacement2.jpg

Photo from Wikimedia Commons.

Here’s the advice from the National Institutes of Health––

How Can People Prevent Knee Problems?

Some knee problems, such as those resulting from an accident, cannot be foreseen or prevented. However, people can prevent many knee problems by following these suggestions:

Before exercising or participating in sports, warm up by walking or riding a stationary bicycle, then do stretches. Stretching the muscles in the front of the thigh (quadriceps) and back of the thigh (hamstrings) reduces tension on the tendons and relieves pressure on the knee during activity.

Strengthen the leg muscles by doing specific exercises (for example, by walking up stairs or hills or by riding a stationary bicycle). A supervised workout with weights is another way to strengthen the leg muscles that support the knee.

Avoid sudden changes in the intensity of exercise. Increase the force or duration of activity gradually.

Wear shoes that fit properly and are in good condition. This will help maintain balance and leg alignment when walking or running. Flat feet or overpronated feet (feet that roll inward) can cause knee problems. People can often reduce some of these problems by wearing special shoe inserts (orthotics).

Maintain a healthy weight to reduce stress on the knee. Obesity increases the risk of osteoarthritis of the knee.

What Types of Exercise Are Best for People With Knee Problems?

Ideally, everyone should get three types of exercise regularly:

Range-of-motion exercises to help maintain normal joint movement and relieve stiffness.

Strengthening exercises to help keep or increase muscle strength. Keeping muscles strong with exercises – such as walking up stairs, doing leg lifts or dips, or riding a stationary bicycle – helps support and protect the knee.

Aerobic or endurance exercises to improve function of the heart and circulation and to help control weight. Weight control can be important to people who have arthritis because extra weight puts pressure on many joints. Some studies show that aerobic exercise can reduce inflammation in some joints.

If you already have knee problems, your doctor or physical therapist can help with a plan of exercise that will help the knee(s) without increasing the risk of injury or further damage. As a general rule, you should choose gentle exercises such as swimming, aquatic exercise, or walking rather than jarring exercises such as jogging or high-impact aerobics.

So there it is, same old thing: exercise and lose weight. If you really really do not want a titanium and plastic knee, losing weight is probably the best thing you can do. “Data from the first National Health and Nutrition Examination Survey (HANES I) indicated that obese women had nearly 4 times the risk of knee osteoarthritis as compared with non-obese women; for obese men, the risk was nearly 5 times greater.” Moreover, if you already have knee pain, losing even ten pounds can significantly reduce both pain and the ongoing deterioration of the knee. Being only 10 pounds overweight increases the force on the knee by 30-60 pounds with each step. You don’t need to reach your ideal weight; any reduction will help. And maybe that will be encouragement enough to keep going, slowly, losing weight and feeling better. (Thorough discussion of weight loss and osteoarthritis, here.)

“Infectious” vs. “contagious”

Just because we’re all hearing about H1N1 flu, and these terms are being used a lot, here’s the difference:

Infectious

1. A disease capable of being transmitted from person to person, with or without actual contact.
2. Syn: infective
3. Denoting a disease due to the action of a microorganism.

Contagious

Relating to contagion; communicable or transmissible by contact with the sick or their fresh secretions or excretions.
[from Stedman’s online Medical Dictionary]

Anthrax, for example, is infectious but not contagious. It is caused by a microorganism, the bacterium Bacillus anthracis, but it’s not “communicable or transmissible by contact with the sick or their fresh secretions or excretions”. People most often get anthrax from contact with infected hides or other animal products, and from soil where the hardy spores of the bacterium can remain for decades after being deposited by infected animals. [Such spore formation is known in only a few bacteria.]

There’s some confusion inherent in these terms because it seems that the “contact with the sick or their fresh secretions or excretions” part only applies to sick humans. You might get rabies from breathing in droplets of the saliva of an infected animal, but that is not considered to be contagion. As near as I can tell, anyway. So, since a human being with rabies doesn’t infect others, the disease is considered non-contagious.

An important factor in any contagious disease is how easily it is transmitted from one person to another. You can’t get HIV from touching the skin of an infected person, but influenza and the common cold can be transmitted that way. Shake hands with someone who just sneezed into his or her hand, and the bacteria are on your hand; when you touch your mouth, nose or eyes, the microorganisms can enter your system. TB is contagious, as is leprosy, but they are not transmitted by brief casual contact.

Right now the question about H1N1 flu is, how contagious is it? And then, how fatal is it? Influenzas mutate rapidly so the virus which seems to have originated in Mexico may be changing to something different as it spreads. Hence the reluctance of medical officials to make predictions about what is in store for the world with this disease.

An early warning system for health threats: the invaluable work of ProMED

ProMED Mail is one of the most important information resources on the net, and most of us have never heard of it. It’s an email list which describes itself as a “global electronic reporting system for outbreaks of infectious diseases and acute exposures to toxins that affect human health, including those in animals and in plants grown for food or animal feed”.

Unlike the official clearinghouses run by WHO and CDC, ProMED is, in its own words, “open to all sources” and its reports are freely available to us all. ProMED was first to raise concern about the aggressive respiratory disease spreading in China in 2003, which became known as SARS. Before the Chinese authorities had permitted their officials to report the disease to WHO, Catherine Strommen, an elementary school teacher in Fremont, California, spotted a post in an international teachers’ chat room from a concerned teacher in China describing “an illness that started like a cold, but killed its victims in days”.

Alarmed, Strommen emailed an old neighbor and friend, Stephen Cunnion, M.D., a retired Navy physician and epidemiologist who now lived in Maryland. A practical, no-nonsense man, Cunnion started searching the web. With no success, he tried a new tack—sending an email to ProMED-mail, a global electronic reporting system for outbreaks of emerging infections and toxins. After quoting Strommen’s missive, he asked: “Does anyone know anything about this problem?”

The tiny ProMED staff conducted its own web search. It, too, came up empty-handed. On February 10, it sent out to tens of thousands of subscribers a posting headed: “PNEUMONIA – CHINA (GUANGDONG): RFI,” or Request for Information.

Thus did the world first learn of SARS, the new and deadly infection that would kill 774 people and infect 8,000 in 27 countries.

From an article by Madeline Drexler in The Journal of Life Sciences.

H1N1 Reports (Swine-avian-human Influenza A)

To keep up on H1N1 flu [I agree with the pig farmers, “swine flu” sounds like your big risk is getting it from pigs and pork, not human sneezes and handshakes] check the ProMED main page. While all the media is now frothing over with “news” about this disease, some of it sounds as reliable as alien abduction accounts. ProMED is timely and scientifically accurate but understandable by non-biologists. It includes valuable, and interesting, commentary on reports and questions: “this has been reported, but here’s what we don’t know, or here are local factors that must be considered in evaluating it”.

What ProMED does

ProMED is a program of the International Society for Infectious Diseases which began in 1994. It does not simply print whatever comes in—this is an extremely well-moderated list. A group of specialists checks and filters the reports, seeks more information from local sources and other experts, and provides judicious commentary. This group also “scans newspapers, the internet, health department and government alerts, and other information sources for inklings that an infectious disease, perhaps not yet reported widely, is threatening animal, plant and/or human health.”

I think I first signed up to receive the digests back when “mad cow disease” was emerging, and have since used ProMED to follow diseases such as anthrax and Ebola.
A topic of interest to me recently concerns outbreaks of measles and mumps in Western nations due to falling rates of vaccination. And as a former zookeeper I keep up on diseases of wildlife and zoo animals, including the fungal disease threatening whole populations of wild bats in the Eastern US. ProMED also covers plant diseases (mostly of crops).

All of this, infectious diseases of humans, wildlife, and crops, is of greatly increased urgency because climate change, global transport, and destruction of wild areas all lead to the spread of familiar diseases to new locales and the emergence of “new” diseases previously only found in remote wild areas. With regard to contaminants and toxins, governments are unable to deal with this effectively due to the political power of corporations and lack f oversight in producing countries. ProMED can’t make your food and furniture non-toxic, but it can sound alarms that might otherwise be silenced.References to a topic’s prior appearances on the list are attached to current reports, and archives are easy to access. Editions in French, Portuguese, Russian and Spanish are now available.

“Each posting is limited to 25 KB bandwidth—to ensure that it slips through an old-fashioned dial-up modem in the most remote areas of the world (where new infectious threats tend to smolder). ‘We use technology that was state-of-the-art in 1994. We use email—plain-text email at that. We don’t use fancy fonts,’ Madoff says. ‘The power of the Internet is its ubiquity and speed; it’s not necessarily in all the neat things you can do.’ [from Drexler’s article cited above]

You can subscribe here.

Toxins and contaminants

ProMED also collects, evaluates, and disseminates reports of health problems related to toxins and contamination of food and medicines. These can be quite unusual. For example, the case of the toxic leather sofas in Britain:

toxicsofaleg.jpg

Photo: Effect on leg of reaction to toxic chemical contained in sofas. From BBC.

A judge [in the UK] is expected to order several retailers to pay millions of
pounds to people who suffered burns and rashes from faulty leather
sofas….

More than 1600 people claim to have been affected by the problem. Tens
of thousands more people could have burns not yet traced to sofas.
The High Street stores, along with 11 others, may have to pay more
than 10 million pounds [USD 14.3 million] in compensation and legal
costs, the shoppers’ lawyers say. They claim that makes it “the
largest group compensation claim ever seen in British Courts.”

The sofas, which were manufactured in China, were packed with sachets
of an anti-mould chemical called dimethyl fumarate to stop them from
going moldy during storage in humid conditions.

Commonly known as DMF, the toxic, fine white powder has been used by
some manufacturers to protect leather goods like furniture and shoes
from mold. Even very small amounts can be harmful.

One sofa customer, who is well aware of the health problems caused by
her purchase, is a customer who bought a leather sofa suite from
Argos in April 2007. Almost a year later, she started to notice a
rash developing on her arms and legs. After a few weeks, her skin
started flaking off. She says the irritation was so bad, she was off
work for 2 months. This customer was seen by more than a dozen
doctors, who couldn’t work out what was causing the rash.

She said: “It was very, very painful; I couldn’t sleep at night; I
couldn’t walk about; I couldn’t drive; every time I did walk about,
the skin would fall off, and I would leave a trail of it, therefore,
I couldn’t go to work.”

Reliable histories of outbreaks/events

ProMED doesn’t just present breaking news and requests for additional reports; it frequently publishes very useful summaries of what’s been learned, and what action governmental agencies have taken. For example, “Melamine contaminated food products – Worldwide ex China” and “Prion disease Update 2009 (01)” (Mad Cow Disease and its human infectious disease, the fatal “variant Creutzfeldt-Jakob disease”.

Supporting ProMED

Believe it or not, ProMED is supported by individuals, with not a penny of funding from any government. That means they are independent (remember the movie Jaws, where the city council wants to suppress news of the shark attacks?) and fast to react. They sift a lot of news from all sorts of sources, put out calls for more information, and disseminate news in a responsible way.

If the work of this group seems like something you’d like to support, here’s your chance. They’re having a brief Spring fundraising campaign. To quote their email,

Your gift funds quick information every day – The economical, low-tech computer programs we use enable us to speed ProMED to your mailboxes, to post it online where anyone can find it, , and to provide the administrative services (accounting, office space, cell phone connections, etc.) required to support a small, agile worldwide enterprise.

ProMED-mail reaches over 50,000 public health officials, students, journalists, agricultural specialists, infectious disease professionals and others around the globe. Because it is free, subscribers in more than 187 countries have an equal opportunity to know when a disease outbreak occurs — and can spring into action when necessary to prevent or minimize its spread.

If the Spring campaign is past, here’s the main donations page.