Update: Symptoms and Doctor Appointments

Where to start? I am so behind on chronicling my life. You’d think it would be a one-liner (“Stayed home this month again, felt crappy, tried to keep spirits up.”), but there are so many subtleties to symptoms that I keep meaning to mention and so many tiny tweaks to treatments. There are so many interesting articles and blog posts that I want to comment on here and so many reasons to be hopeful and frustrated at current medical endeavors. I’ve written 100 blogs in my head this year that I thought were important and interesting ~ maybe even entertaining ~ but they never made it to the page and I’ve forgotten much of what I wanted to say. So, today, just an update.

Symptoms

First, the good news: my throat hasn’t been very sore in a while (if I don’t talk too much); my pain (below the neck) is minimal (if I don’t move too much); my dizziness is better (if I don’t stand up too much); my mood is ok (if I don’t think too much); 🙂  Haha, writing that was actually cracking me up! But, seriously, the underlying perma-symptoms of ME are stable and predictable if I don’t change my life up too much: exhaustion, achiness, tremors, horrid skin, blurry vision, stiffness, and fluishness are all manageable and (my) normal. The reality is, I feel unwell all day every day. Sometimes it makes me feel like I’m okay, I’m going to be fine and sometimes it makes me feel like I don’t want to die, I’m scared, I can’t do this anymore. My most pressing concerns lately have been, of course, the headache, terrible sleep, horrific bloating and constipation, and my free fall into less and less mobility and activity with higher and higher heart rate. Also, my brain torpor frightens me to the point that I can’t talk about it.

Thankfully, my brain pain train morphed from the high-speed TGV** to a kiddy carnival choo-choo. It still comes chugging through my skull in the afternoons and after I stare at a screen for too long, but, for the past 4 days or so, it is not torturing me. I stopped taking my Chinese herbs for a week; I don’t know if that is what caused or helped my headache, but I started them again yesterday (back down to 1/day) and we’ll see what happens.

3 weeks ago, in a place of desperation and panic about my disappearing sleep and unrelenting headache, I rummaged in my “Drugs I Don’t Take Drawer” and found gabapentin. The first night I took about 50mg (half a pill) and immediately my sleep was better. I still woke up a lot and it was unrefreshing as ever, but I slept for 8-9 hours rather than 6. That slice of heaven lasted a little over a week and now I’m back to the same terrible sleep, exacerbated by a very rare Seattle heat wave with no air conditioning. I added melatonin and went up to 150mg of gabapentin, but no relief (unless the gabapentin is the reason my headache is a better). I was prescribed trazodone for sleep, but haven’t gotten the nerve up to take it yet. I had planned to increase my dose of gabapentin first and then add doxylamine succinate and then swap the doxylamine for trazodone, if needed. Maybe I should just swap the gabapentin for trazodone since, just like last year, the gabapentin has caused awful constipation.

Let’s talk about that a bit. Within 48 hours of my first dose, things just stopped moving. It’s reached critical mass. I take a stool softener, I put soluble fiber in my tea, I drink raspberry leaf tea (thanks to a tip from Jess over at My Journey Thru ME, who wrote a great post on IBS), I take 400mg of magnesium before bed and I have been taking Miralax every single night. I’m still in bad shape, very uncomfortable, and worried that this is more dangerous than it would be in a healthy person because of my gut dysbiosis. The Good Doctor said, “You have to keep things moving because your bowels are in bad shape.” I think I’ll actually have to stop gabapentin to get back to normal.

My scariest symptom lately is my inability to do any activity without my heart rate skyrocketing. I’ve been sitting on the bathroom floor, washing my cpap equipment every week for the last 8 months. It’s never been an issue. Yesterday, my heart rate kept revving up to 110+ bpm while I sat in that same position, doing the same slow, careful scrubbing I’ve always done. This keeps happening. Taking pictures in the garden, reaching up to pick berries, talking a little too animatedly, putting sun cream on, adjusting a blanket, petting the dogs… Normally, if I were sitting down, these activities wouldn’t cause problems. Now, even sitting or lying, I feel that telltale sign (which initially registers as breathlessness, not as tachycardia), look at my HR monitor and am surprised every time: Oh, what was I thinking jiggling my foot while talking at the same time? How dare I wash my hands so vigorously. I should know better!

I can’t help thinking it is a direct result of deconditioning. It could be a direct result of illness ~ I know this is common is so many of us ~ but, the less I move, the less I’m able to move and that scares the shit out of me. So, every day I wonder: Should I push myself to “exercise” more so my body maintains some strength and life force? Or is that exactly what got me here and I should do less, less, less? This is one of the many contradictory evils of this disease: The less activity you are able to do, the more you panic and want to try doing more.

Medical professionals

I’ve had a some new appointments in the past few months:

1. An amazingly wonderful physical therapist whom I have been seeing each week. He is not really a PT; I don’t know the name for what he does. I lie on his plinth (I learned this name when I said to him, “That pain made me come off the bed. Sorry ~ ‘table’.” And he said, “Actually, ‘plinth’.”) and he finds the rotten-apple spots in my muscles and then eliminates them by restoring the circulation with magic fingers. I don’t have to move and there is very little energy expenditure (besides our tendency to talk nonstop about music, movies, books, and food. We never talk about my illness except for the initial update on my current problem areas. I probably chat more “normally” to him than anyone else in my life and always leave smiling ~ that, in itself, is worth every penny and drop of ATP). This treatment is the number one first time I have had a very obvious FIX to a problem. He worked on my lower spine pain and coccyx burning and, that evening, IT WAS GONE. And it stayed gone! He’s a magic man.

2. Stupidly, obtusely, naively, I went to see a cardiologist about my BP and HR issues, plus the fact that bowel rumbling triggers a sort of vasovagal heart flutter and lung tightening. I’m sure most of you people with ME know what’s coming. This doctor said, “I see a lot of you girls with low blood pressure and syncope problems and you all have one thing in common: low body weight. You need to gain some weight. Eat more protein and salt. I know everyone is concerned about being thin and looking good, but it’ll help. Start walking more and lifting 5 or 10lb weights and come back in 6 months.”

As carefully and stoically and graciously as I could, I said, “I am 5 foot tall. This is the heaviest I have been since college. [Here he interjected: “Right. And I bet you feel better.”] No, I don’t feel better, you moron. If I gain weight, it’ll just be fat because I can’t move very much. I don’t care what I look like because I’m just trying not to die I don’t ever get dressed or leave the house, you condescending bastard. I can’t imagine using 10lb weights because I wouldn’t be able to leave the bed for weeks can barely lift my arms, but I’ll try increasing my steps. See you never.” He’d be happy to know that I have since gained another 5lbs from the gabapentin and, shockingly, I don’t feel any different except I am even more uncomfortable in my body than I was last month (and, no, Dr. Iseealotofyougirls, I don’t mean uncomfortable with how I look, I mean it is not comfortable to lose most of your muscle tone and gain 12lbs of fat in its place!)

3. The saga of the oral appliance (OA) for sleep apnea. Here’s the wrap up: I saw the orthodontist in April, waited over a month before being told I had to see a sleep specialist again for insurance to approve the OA, and then waited over ANOTHER month before being called in to fit the OA (a 2 hour appointment!). I slept with it in for 5 hours and woke up in extreme pain. Yes, it had the obvious repercussions, such as temporarily changing my bite and making my TMJ sore, but the big problem was pain stabbing into my top and bottom right canines. It felt like they had been drilled into without anesthetic. So, back to the orthodontist for another fitting, which ended in a decision to send the appliance back to the lab for tweaking. Milo’s Law: if it can go wrong, it will go wrong for me. It’ll be another 3 weeks before it comes back from the lab.

4. On a good note, after I saw my GP, she sent me a letter saying she was shocked by my decline and panicked to find something to help me and sorry the medical community is failing me and honored that I allowed her to take this journey with me. I wish I could reprint the letter here because it could restore some faith in medical professionals, but I want to be respectful of her privacy. She is leaving for her annual 2-month break, but is seeing me next week on her last day and is willing to run some new tests (finally!). I’ve researched nonstop for the last month, trying to decide what tests to request, but I’ve ended up more confused than when I started. I need to email her tomorrow with my list. If anyone has any advice, please let me know. I can always talk to her about additional tests at the appointment. Here are my thoughts:

  • Mycoplasma tests
  • Cytokine profile
  • NK cell function test
  • Hormones (ACTH, LH, HGH, testosterone, insulin like growth factor(?))
  • RNase L Panel
  • Immunoglobulin
  • Lactic acid
  • folate
  • DHEA sulphate
  • Heavy metals
  • Amino Acid
  • IgG (?)
  • potassium, copper and …?

For disability (but really don’t want to do):

  • Neuropsychological Testing
  • VO2 Max (although it would be a 1-day stress test done by somebody who doesn’t know about ME)
  • tilt table test

 

Daily gratitude:
I am grateful for the few friends I have.
I am grateful for the few hours I sleep.
I am grateful for the little energy I have.
I am grateful for the still life I lead.

** I’m sure there are faster trains now, but, back in the 90s, I took the TGV all over Europe and its speed made a lasting impression. I still say “tay gjay vay”, pronouncing the letters in French, which is how I learned it.

Good Morning, Heartache

What happens when a healthy person has an air purifier in their bedroom that begins to rock ever-so-slightly in the night? What about when they have a bit of a leak from their cpap? What about when the temperature in the bedroom goes up to 75 degrees? What about when the dog stretches and his nails graze the wall? What about when a line of sunlight creeps under the black-out blinds? What about when someone dares to take a step two floors below their bedroom? Probably nothing. Probably, they keep sleeping soundly. If they wake, they probably go back to sleep fairly quickly. It probably doesn’t even register.

What happens when a person with M.E. experiences these things?

This:

Zeo graph from 1am-9am showing constant "wake" (top of graph).

Zeo graph from 1am-9am showing constant “wake” (top of graph).

 

What happens when a healthy person only gets 2 hours of broken sleep? They are very, very tired.

What happens when a person with M.E. experiences this?

Heart racing, difficulty breathing, muscle pain, extreme stiffness, dizziness, reemergence of migraine, very blurry vision, difficulty forming coherent sentences, loss of appetite, inability to get out of bed, panic. And that’s only in the beginning of the day.

 

Stop haunting me now
Can’t shake you, no how…
Good morning, heartache, sit down.

All Aboard the Brain Pain Train!

It’s been about a month since I wrote a decent update. I’ve been trying to keep my readers entertained with short posts, NY Times articles, and reblogs of others’ writing because I have been in a sorry state ~ mostly because of crippling headaches. I think I’ve said it before: bad headaches are, to me, the number one most evil and debilitating symptom of this disease. I’ve written about them before here and here and here. Don’t get me wrong, PEM is by far the most disabling and cruel aspect of ME (I will write a rant about this one day), but, it is somewhat controllable… Muscle pain can be beyond everything you’ve ever imagined… I’m sure vertigo, if bad enough, would be as incapacitating as these headaches… The complete loss of life force when your mitochondria simply can’t keep up with the energy needs of your organs is more handicapping and terrifying… But, none of those, in my experience, blot out existence like the headaches.

Not only do the headaches affect me, but my family has to tip-toe around, talking softly, closing doors carefully, opening soda cans outside, watching tv with headphones, jumping up to distract the dogs when they bark. One of my neighbours had their hardwood floors sanded and varnished during the last few weeks and I stayed inside with doors and windows closed, griping about the fumes tearing at my brain. Another neighbour seems to have purchased the loudest weed-whacker available and insists on using it on the patch of grass closest to wherever I happen to be sitting, whether it’s in the front or the back of our garden. I texted my husband (who was nearby, but I can’t yell out with this headache and I always try not to get up needlessly because of ME): “There is a $100 bill in my bag. Please, please go give it to whathisname and bribe him to stop that noise. When I get better, I’ll do his yard work for the rest of my life. Can you die from noise?” My husband reminded me that we have the loudest dog on the planet and, so far, nobody has given us any grief. So, I kept the $100 (a birthday gift) and turned my attention to being grateful I don’t live next to the airport or a nightclub or a war.

headache

The headaches alternate between throbbing aches and all-encompassing migraines with blinding auras. They are always accompanied by extreme noise and light sensitivity and never able to be touched by medications. On a day like today, I am able to function, but, as the hours progress, I become more and more grumpy, silent, and still. My body tenses, brow furrows, and I stop being able to communicate. On middling days, I move very carefully, I can try to interact wearing earplugs and sunglasses, staying well away from phone and computer screens. And, on the worst days, I can’t leave bed, I can’t speak or see very well, I have ice packs on my neck and eyes, I pant, I sweat, I moan.

This current journey into headache hell started 22 days ago. The worst of it was a few weeks ago and caused me to stop taking all drugs and supplements in an effort to abort the pain. The multicolored, zigzag aura disappeared and the headache lifted enough to function, but, even today, it’s still a doozy. It is the first thing I noticed before opening my eyes this morning. Ugh, headache is still here.

I had quite a few theories. It started with my period, so I thought it was hormonal, but has continued too long. I started Nasonex about a week before the headache came, so I stopped that (and won’t try it again now that it is “tainted” in my mind), but I’m still suffering 2 weeks later. I thought it was from stopping Pantanase nasal spray after using it daily for a year, so I started that again. I thought it was from the new bottle of Chinese herbs (which looked and smelled vastly different from the previous bottle), but I stopped taking them for 4 days with no respite from the pain. I thought it was from overdoing it in general, so I rested a bit more ~ to no effect. I thought it was due to my chronically messed-up neck, so I used my traction device, my tens unit, tiger balm, hot pads, cold packs etc. Nothing. From sitting in the sun? No, it’s still here on cold days. From being on the computer? No, it’s still here on days that I’ve mostly avoided the computer. All the strawberries I’ve been eating lately? No, I haven’t eaten any in over a week. I refuse to believe there is no reason. I don’t want to take prophylactic migraine drugs. I just want it to go away. So I can continue to enjoy my exhausted, stiff, achy, fluey, brain-fog-filled summer days.

I have a lot of other stuff to report on, but it’ll have to wait. Apparently, it was far more important for me to get some company on this brain pain train. Thanks for joining me!

What She Said…

Sarah over at Dead Men Don’t Snore wrote the following excellent post. I thought I’d share:

The Importance of Names

The illness I have is known by many names: Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Low Natural Killer Cell Disease and Post Viral Fatigue Syndrome (PVFS) to name but a few. In the UK, the terms ME and CFS are widely considered synonymous while in the United States the term ME is rarely used at all.

It is often said that a rose by any other name would smell as sweet, so when I first heard of a campaign to abolish the term CFS I assumed this was simply dislike of the word ‘fatigue’ which is by no means the predominant symptom of ME. Although I disliked the name CFS as much as anyone I couldn’t help but wonder if it really mattered; surely my symptoms would remain the same regardless what name they were given. The more I learn about the issue however, the more convinced I become that names really are important.

In 1969, Myalgic Encephalomyelitis was formally recognised by the World Health Organisation (WHO) as a neurological disease. The diagnostic criteria required certain neurological features and specifically excluded psychiatric explanations for a patients symptoms. At the time, research carried out by prominent physicians in the field was highly regarded.

In 1970, McEvedy and Beard published articles in the British Medical Journal dismissing outbreaks of ME as mass hysteria due to the predominance of female patients; the same argument once used to dismiss Multiple Sclerosis. Ignoring physical abnormalities found in more than two hundred patients at the Royal Free Hospital, they planted the first seed of doubt in the minds of some clinicians.

The name ME was used throughout the commonwealth, but the illness remained unnamed in the States until 1988 when a cluster of outbreaks and subsequent insurance claims prompted the Centers for Disease Control to introduce the name Chronic Fatigue Syndrome. Three ME specialists present at the meeting refused to sign the new working case definition with its focus on fatigue as it bore so little resemblance to neurological ME. The new name was a gift to medical-insurance companies as it implied the illness was nothing more than perpetual tiredness, a symptom so vague that insurance claims could be easily denied.

Since the 1990s the name CFS has gradually superseded ME in the UK. Many doctors reject the term Encephalomyelitis (meaning inflammation of the brain/spinal cord) even though evidence of such inflammation has been found in patients with ME.

In 2001 it was discovered that CFS/ME had been wrongly reclassified as psychiatric in a UK adaptation of a WHO publication regarding mental health disorders. Despite confirmation from the WHO that this was a mistake, the NICE guidelines continue to offer an almost entirely psychiatric approach to treating the disease.

The psychiatric lobby in the UK ignore well-documented evidence of brain lesions, reduced blood volume and cellular, immunological and cardiovascular abnormalities to insist that ME is simply deconditioning, exercise avoidance and false illness beliefs. Specialist testing (SPECT scans, mitochondrial analysis and tilt-table testing) to confirm physical abnormalities is rarely available on the NHS as doctors cannot justify the expense of tests that don’t lead to any subsequent treatment.

Prominent psychiatrist, Sir Simon Wessely, claims that ME can be successfully treated with Graded Exercise and Cognitive Behavioural therapies (GET/CBT). The government, while failing to fund biomedical research, has spent millions of pounds funding the PACE trials to test this theory. Full data from these trials remains unpublished despite widespread calls for its release.

The selection criteria for PACE excluded the severely affected and those with neurological symptoms but included patients with other conditions such as fibromyalgia or psychiatric disorders. This means few if any of the participants met the criteria for ME, yet the results are being treated as universally applicable. Claims of Wessely’s ‘cure’ for CFS have flooded the media when his trials at best show only moderate improvement in a small number of patients.

Measurable deterioration after even minimal exertion is one of the defining characteristics of ME, making graded exercise potentially harmful. Like many ME patients, CBT made no difference to my symptoms while graded exercise made me substantially worse. Every book or article I have read of CFS patients being cured by GET or CBT described a set of symptoms and a disease process so different to my own that it was hard to reconcile them as the same disease. Put simply, CBT and GET can be very helpful for patients suffering from general fatigue states such as mental health disorders or post-illness deconditioning but if these are the cause of a patient’s fatigue they do not have ME.

Unlike ME, CFS has no internationally agreed definition. The catch-all term encompasses everything from fatal neurological disease to any persistent fatigue of undetermined origin. Definitions of CFS rarely require (and often preclude) physical or neurological abnormalities but may allow for psychiatric causes, making the terms CFS and ME mutually exclusive in such cases.

Chronic fatigue can be a symptom of almost any illness but a single normal blood test is often all that is required for a diagnosis of CFS. It is estimated that only 40-60% of CFS patients meet the criteria for ME. Following diagnosis it is rare for further tests to be carried out and patients receive little support or intervention. This is akin to diagnosing frequent headaches as Chronic Headache Syndrome with no further tests to determine if they are caused by stress, depression, migraines or a brain tumour. It is common for conditions like MS, LYMES Disease and even cancer to be misdiagnosed as CFS, often with irreversable or fatal consequences.

So long as no distinction is made between the many different causes of chronic fatigue, patients around the world will be denied the proper recognition and treatments that their illnesses deserve.

So long as the ill-defined category of Chronic Fatigue Syndrome exists, patients with severe neurological disease, post-viral fatigue states and psychiatric disorders will remain grouped under the same broad umbrella and subjected to one-size-fits-all policies that are useless to some and harmful to others.

So do names really matter?

When patients with serious neurological symptoms are treated as having psychosomatic disorders and end up dying through medical neglect, forced into inappropriate treatments that make them worse, or taken from their families and placed into locked psychiatric wards, than yes, it really does matter.

So I’ll continue to refer to my illness as ME and not CFS in the hope that one day the different pathologies grouped under one vague name will finally be recognised as the disparate conditions many patients and specialists already know them to be.

Over to you:

If you have a diagnosis of ME or CFS (or know someone who does) which name do you prefer to use, and do you think it matters?
What are your own experiences of GET and CBT?
What tests were done to diagnose your condition and have you been offered further tests or treatment since diagnosis?

Some New York Times Articles For You

I’m in what feels like a total free fall, so here are some interesting NY Times articles to keep you entertained while I’m unable to write: The Claim: Fibromyalgia Is Affected by WeatherHow Accurate Are Fitness Trackers?Don’t Take Your VitaminsResearchers Find Biological Evidence of Gulf War Illnesses. The latter has many quotes that we will all find familiar:

“After leaving the Army in 1992, he said his health continued to deteriorate, to the point where he could not hold jobs. Doctors gave him diagnoses of migraines, fibromyalgia, irritable bowel syndrome and chronic fatigue syndrome. They gave him medications that did not seem to help and offered treatment for post-traumatic stress disorder, he said. ‘I was told I had these problems because I was depressed. And yes, I was depressed,’ Mr. Brown said. ‘But that’s part of having so many things wrong. That’s not what caused it.'”

Really? The Claim: Fibromyalgia Is Affected by Weather

By ANAHAD O’CONNOR

JUNE 10, 2013

THE FACTS

No one really knows precisely what causes the debilitating fatigue and muscle pain of fibromyalgia. But some people who have the disorder say they know what can make it worse: changes in the weather.

Cold, damp days and drops in barometric pressure are widely associated with flare-ups in symptoms of the condition, which affects mostly women. In one study by the National Fibromyalgia Association, people with the condition ranked weather changes as one of the leading aggravating influences on pain and stiffness.

Unlike the reported connection between arthritis and changes in temperature and pressure – which has mostly been debunked – the belief that fibromyalgia symptoms fluctuate with the weather has not been the subject of thorough research. The few studies that have investigated ithave mostly found little evidence of a link.

In the latest report, published this month in the journal Arthritis Care & Research, Dutch researchers followed 333 middle-aged women who had fibromyalgia, looking for relationships between environmental conditions and their levels of pain and fatigue. Over the course of a month, the researchers monitored humidity levels, atmospheric pressure, precipitation, temperature and sunshine duration, using data from a meteorological institute.

In some cases, they did find that weather variables had “significant but small” effects on pain and fatigue. But for the most part, they concluded, there was “more evidence against than in support of a uniform influence of weather on daily pain and fatigue.”

THE BOTTOM LINE

Most studies have not found much evidence of a link between fibromyalgia symptoms and weather patterns.

How Accurate Are Fitness Trackers?

By GRETCHEN REYNOLDS

JUNE 12, 2013

Nate Meckes recognized that he needed to study the accuracy of activity monitors after wearing one. A shipment of the devices, known technically as accelerometers and designed to measure a person’s movement and energy expenditure, had arrived at Arizona State University, where Dr. Meckes was a researcher. To ensure they were operational, he slipped one over his hip and wore it throughout the day, including to an interminable meeting where he stood up and paced. “I’m not good at sitting still,” he says.

Checking his monitor afterward, though, he was flabbergasted. “It had recorded that I was not moving at all,” says Dr. Meckes, now an assistant professor at Azusa Pacific University in Azusa, Calif. The experience inspired him to set up an experiment examining how reliable such devices are.

Until recently, accelerometers, which use electronics to determine bodily movement and intensity, had been confined to research laboratories. But now, at-home users can choose from a variety of devices, sold under such brand names as Fitbit and Nike+ FuelBand. Some are worn on the hip; others on the arm or wrist. All sense movement and feed data into the device’s electronic brain, where proprietary equations determine how much energy someone is expending, meaning, in practical terms, how many calories they burn.

But by and large, users have had to take such measurements on faith. Unbiased, comparative studies of the devices haven’t been available.

Which makes Dr. Meckes’s experiment useful and timely, particularly since his results, presented last month in Indianapolis at the annual meeting of the American College of Sports Medicine, join those of a number of other new studies in raising concerns about just how well today’s activity monitors do their job.

For his experiment, Dr. Meckes gathered 16 adult volunteers and fitted each with three different monitors, two worn on the hip and one around the arm. The volunteers also donned portable masks that measure oxygen consumption, the gold standard in determining energy output.

The volunteers then threw themselves into a variety of activities in the university’s physiology lab, including walking on a treadmill, cleaning a simulated kitchen, standing up, typing at a computer and playing a board game.

All three of the devices accurately measured energy expenditure when the volunteers walked briskly, Dr. Meckes and his colleagues found; their estimates closely matched those of the oxygen-consumption monitor.

But the devices were far less reliable in tracking the energy costs of light-intensity activities like standing or cleaning, often misinterpreting them as physical immobility. Only the calorie cost of typing was overestimated, and only by the armband monitor, which considered the arm movements involved to be far more dynamic than they actually are.

These miscalculations echo those of the findings from several other new studies. One, also reported at the sports medicine meeting, involved 74 adults, young and old, who wore an armband accelerometer and a portable oxygen-consumption gauge while walking, jogging, riding a stationary bicycle, windmilling an arm ergometer, and completing so-called activities of daily living, like lifting boxes and sweeping.

Again, the accelerometer measured the more strenuous bodily movements, like jogging, fairly accurately. But it significantly underestimated subtler activities, like sweeping, and was “terrible” at measuring bicycle pedaling, which involves no arm movement, says Glenn Gaesser, the director of the Healthy Lifestyles Research Center at Arizona State University in Phoenix, who oversaw the study.

So, too, a study published last month in Medicine & Science in Sports & Exercise found that several hip-mounted accelerometers underestimated the energy involved in standing up, bicycling and walking or jogging uphill, says Ray Browning, an assistant professor of exercise science at Colorado State University in Fort Collins, who led the study.

The question, of course, is whether it matters if the devices are inaccurate, especially if they underestimate daily energy expenditure, and perhaps fiendishly spur some at-home users to move more, thinking that they’ve expended less energy than they actually have.

The studies’ researchers think the inaccuracies do matter. “There’s a growing consensus” among exercise scientists, Dr. Meckes says, “that people should spend less time in sedentary activities, like sitting,” and instead stand up, stroll or sweep more. But if people get the idea from their activity monitors that such activities don’t really count, in terms of movement and calorie expenditure, “it may be harder to get that message across,” he says.

The good news is that accelerometers are improving, Dr. Browning says. The algorithms underlying the devices’ measurements — which are developed by engineers using data from people wearing the devices — are constantly being refined. And researchers, including Dr. Browning, are exploring better monitor placement.

At Colorado State, for instance, he and his colleagues have created a prototype shoe-based accelerometer, which embeds the electronics in an insole. In his recent study, this device better captured changes in posture and foot pressure than hip-level accelerometers.

Still, the lesson at the moment for anyone who owns an accelerometer is that the device’s measurements are likely to be imperfect — which, says Dr. Gaesser, does not mean you should stash yours in a drawer. “They may not be accurate” for counting calories, he says. “But for many people, they’re inspirational, and if using one gets someone to move more, then as far as I’m concerned, it’s serving a good purpose.”

Don’t Take Your Vitamins

By PAUL A. OFFIT

June 8, 2013

PHILADELPHIA — LAST month, Katy Perry shared her secret to good health with her 37 million followers on Twitter. “I’m all about that supplement & vitamin LYFE!” the pop star wrote, posting a snapshot of herself holding up three large bags of pills. There is one disturbing fact about vitamins, however, that Katy didn’t mention.

Derived from “vita,” meaning life in Latin, vitamins are necessary to convert food into energy. When people don’t get enough vitamins, they suffer diseases like scurvy and rickets. The question isn’t whether people need vitamins. They do. The questions are how much do they need, and do they get enough in foods?

Nutrition experts argue that people need only the recommended daily allowance — the amount of vitamins found in a routine diet. Vitamin manufacturers argue that a regular diet doesn’t contain enough vitamins, and that more is better. Most people assume that, at the very least, excess vitamins can’t do any harm. It turns out, however, that scientists have known for years that large quantities of supplemental vitamins can be quite harmful indeed.

In a study published in The New England Journal of Medicine in 1994, 29,000 Finnish men, all smokers, had been given daily vitamin E, beta carotene, both or a placebo. The study found that those who had taken beta carotene for five to eight years were more likely to die from lung cancer or heart disease.

Two years later the same journal published another study on vitamin supplements. In it, 18,000 people who were at an increased risk of lung cancer because of asbestos exposure or smoking received a combination of vitamin A and beta carotene, or a placebo. Investigators stopped the study when they found that the risk of death from lung cancer for those who took the vitamins was 46 percent higher.

Then, in 2004, a review of 14 randomized trials for the Cochrane Database found that the supplemental vitamins A, C, E and beta carotene, and a mineral, selenium, taken to prevent intestinal cancers, actually increased mortality.

Another review, published in 2005 in the Annals of Internal Medicine, found that in 19 trials of nearly 136,000 people, supplemental vitamin E increased mortality. Also that year, a study of people with vascular disease or diabetes found that vitamin E increased the risk of heart failure. And in 2011, a study published in the Journal of the American Medical Association tied vitamin E supplements to an increased risk of prostate cancer.

Finally, last year, a Cochrane review found that “beta carotene and vitamin E seem to increase mortality, and so may higher doses of vitamin A.”

What explains this connection between supplemental vitamins and increased rates of cancer and mortality? The key word is antioxidants.

Antioxidation vs. oxidation has been billed as a contest between good and evil. It takes place in cellular organelles called mitochondria, where the body converts food to energy — a process that requires oxygen (oxidation). One consequence of oxidation is the generation of atomic scavengers called free radicals (evil). Free radicals can damage DNA, cell membranes and the lining of arteries; not surprisingly, they’ve been linked to aging, cancer and heart disease.

To neutralize free radicals, the body makes antioxidants (good). Antioxidants can also be found in fruits and vegetables, specifically in selenium, beta carotene and vitamins A, C and E. Some studies have shown that people who eat more fruits and vegetables have a lower incidence of cancer and heart disease and live longer. The logic is obvious. If fruits and vegetables contain antioxidants, and people who eat fruits and vegetables are healthier, then people who take supplemental antioxidants should also be healthier. It hasn’t worked out that way.

The likely explanation is that free radicals aren’t as evil as advertised. (In fact, people need them to kill bacteria and eliminate new cancer cells.) And when people take large doses of antioxidants in the form of supplemental vitamins, the balance between free radical production and destruction might tip too much in one direction, causing an unnatural state where the immune system is less able to kill harmful invaders. Researchers call this the antioxidant paradox.

Because studies of large doses of supplemental antioxidants haven’t clearly supported their use, respected organizations responsible for the public’s health do not recommend them for otherwise healthy people.

So why don’t we know about this? Why haven’t Food and Drug Administration officials made sure we are aware of the dangers? The answer is, they can’t.

In December 1972, concerned that people were consuming larger and larger quantities of vitamins, the F.D.A. announced a plan to regulate vitamin supplements containing more than 150 percent of the recommended daily allowance. Vitamin makers would now have to prove that these “megavitamins” were safe before selling them. Not surprisingly, the vitamin industry saw this as a threat, and set out to destroy the bill. In the end, it did far more than that.

Industry executives recruited William Proxmire, a Democratic senator from Wisconsin, to introduce a bill preventing the F.D.A. from regulating megavitamins. On Aug. 14, 1974, the hearing began.

Speaking in support of F.D.A. regulation was Marsha Cohen, a lawyer with the Consumers Union. Setting eight cantaloupes in front of her, she said, “You would need to eat eight cantaloupes — a good source of vitamin C — to take in barely 1,000 milligrams of vitamin C. But just these two little pills, easy to swallow, contain the same amount.” She warned that if the legislation passed, “one tablet would contain as much vitamin C as all of these cantaloupes, or even twice, thrice or 20 times that amount. And there would be no protective satiety level.” Ms. Cohen was pointing out the industry’s Achilles’ heel: ingesting large quantities of vitamins is unnatural, the opposite of what manufacturers were promoting.

A little more than a month later, Mr. Proxmire’s bill passed by a vote of 81 to 10. In 1976, it became law. Decades later, Peter Barton Hutt, chief counsel to the F.D.A., wrote that “it was the most humiliating defeat” in the agency’s history.

As a result, consumers don’t know that taking megavitamins could increase their risk of cancer and heart disease and shorten their lives; they don’t know that they have been suffering too much of a good thing for too long.

Researchers Find Biological Evidence of Gulf War Illnesses

By JAMES DAO

June 14, 2013

In the two decades since the 1991 Persian Gulf war, medical researchers have struggled to explain a mysterious amalgam of problems in thousands of gulf war veterans, including joint pain, physical malaise and gastrointestinal disorders. In some medical circles, the symptoms were thought to be psychological, the result of combat stress.

But recent research is bolstering the view that the symptoms, known collectively as gulf war illness, are fundamentally biological in nature. In the latest example, researchers at Georgetown University say they have found neurological damage in gulf war veterans reporting symptoms of the disease.

Using magnetic resonance imaging to study the brains of gulf war veterans before and after exercise, the researchers discovered evidence of damage in parts of their brains associated with heart rate and pain. Such damage was not evident in the control group, which included nonveterans and healthy veterans.

Such neurological damage, the researchers theorize, caused the veterans to be more sensitive to pain, to feel easily fatigued and to experience loss of short-term “working memory,” all symptoms associated with gulf war illness.

Their study, published by the online medical journal PLoS One on Friday, does not try to explain the causes of the damage. It also found different patterns of damage in two groups of veterans, indicating that the disease — if it is indeed a single ailment — takes different paths in different people.

But the authors said the findings, along with other recent research, may offer clues in developing treatments and diagnostic tests for the illness, which currently is diagnosed through self-reported symptoms and has no definitive treatment.

Two other studies released by Georgetown this year have also pointed to neurological damage in the brains of veterans reporting symptoms of gulf war illness, including one that showed abnormalities in the nerve cells linking parts of the brain involved in processing feelings of pain and fatigue.

The research makes clear that “gulf war illness is real,” said Rakib U. Rayhan, the principal author of the new study. “There is objective evidence that something is wrong in the brains of these veterans.”

Other experts offered more tempered views, noting that most of the subjects in the Georgetown study were self-selected and that their number was relatively small: 28 veterans with symptoms and 10 participants without symptoms.

Dr. Drew A. Helmer, director of the Department of Veterans Affairs’War-Related Illness and Injury Study Center in New Jersey, called the Georgetown studies “very preliminary” but also “a very important step forward.”

But Dr. John Bailar, an emeritus professor at the University of Chicago who led a group that studied gulf war illness in 1996, said the new study did not provide enough data to determine whether the veterans’ symptoms were linked to their deployments to Kuwait, or something entirely different.

“I am not questioning whether a substantial proportion of veterans of Desert Storm have symptoms related to their service,” Dr. Bailar said in an e-mail. “I am questioning whether those symptoms have any cause other than the stress of war itself.”

Studies by the Department of Veterans Affairs have estimated that as many as 250,000 of the nearly 700,000 service members who served in the Middle East in 1990 and 1991 have reported symptoms of gulf war illness, which is also known as chronic multisymptom illness.

Gulf war illness has been the source of much frustration and dispute practically since veterans first reported symptoms in the 1990s. Many veterans say that their complaints were initially dismissed as psychological. Many also believe that their problems are the result of exposure to nerve agents, pesticides, herbicides and other chemicals, but that the government has been slow, or unwilling, to pinpoint causes.

Even some government researchers have made that case. At a Congressional hearing in March, Dr. Steven S. Coughlin, an epidemiologist who once worked for the Department of Veterans Affairs, asserted that the department had systematically played down the neurological basis of gulf war illness. At the same hearing, a member of an advisory panel to the department said the agency still seemed guided by the view that symptoms of gulf war illness were stress-induced.

“This is a throwback to early speculation from the 1990s that there was no problem, or that veterans just had random, disconnected symptoms,” testified Dr. Lea Steele, a Baylor University epidemiologist who was a member of the Research Advisory Committee on Gulf War Veterans’ Illnesses.

USA Today reported on Friday that Eric K. Shinseki, the secretary of veterans affairs, had taken steps to replace members of the advisory committee and reduce its independence. Advocates for gulf war veterans say the changes are meant to rein in a committee that has consistently been more aggressive than the department in saying that gulf war illness is a physical condition related to exposure to toxins.

In a statement, the department defended its research into gulf war illness. “V.A. is clear in its commitment to treating these health issues and does not endorse the notion some have put forward that these physical health symptoms experienced by gulf war veterans arise as a result of PTSD or other mental health issues from military service,” the statement said, referring to post-traumatic stress disorder.

Still, many veterans, like Ronald Brown, who was part of the Georgetown study, say their problems after returning from Kuwait in 1991 were not taken seriously.

An infantryman with the 82nd Airborne Division, he was at a base in southern Iraq when engineers destroyed the nearby Kamisiya ammunition depot containing nerve gas. The Pentagon has said that as many as 100,000 American troops could have been exposed to the toxic gas in that demolition.

Mr. Brown, 45, says that before the invasion, he was in top physical condition, regularly scoring high on Army physical fitness tests. But after Kamisiya was destroyed, he began experiencing headaches, nausea and shortness of breath. When he returned to the United States, he says he failed a fitness test badly. “I plain and simple couldn’t get enough air,” he said.

After leaving the Army in 1992, he said his health continued to deteriorate, to the point where he could not hold jobs. Doctors gave him diagnoses of migraines, fibromyalgia, irritable bowel syndrome and chronic fatigue syndrome. They gave him medications that did not seem to help and offered treatment for post-traumatic stress disorder, he said.

“I was told I had these problems because I was depressed. And yes, I was depressed,” Mr. Brown said. “But that’s part of having so many things wrong. That’s not what caused it.”