An extensive review study of the scientific literature has concluded that swallowing capsules of evening primose oil and borage oil will not relieve your eczema symptoms.
Evening primrose oil and borage oil are "gamma-linoleic acids," or long-chain fatty acids that have a kink in the sixth bond in the chain. They are also called omega-6 fatty acids and have long been touted as beneficial in reducing inflammation and treating autoimmune diseases when taken in capsule form.
A team led by Joel Bamford at the University of Minnesota Medical School
read through 27 academic studies, in which 1596 patients had taken
part, and concluded that taking evening primrose oil or borage oil had
provided no benefit.
I've taken evening primrose oil capsules myself. They were expensive and did nothing for me.
This review seems like it could be the final word on the issue. However, the overall total number of participants is quite low--each study would have had around 50 participants. So it's possible that the authors of this review have just combined a whole lot of garbage results and the overall conclusion is not solid...but if there were some kind of real beneficial effect you'd think a review of this size would detect it.
I'm skeptical of supplements in general. In my experience, eczema is a condition in which diet is indeed important--but the importance lies in leaving out foods that can trigger allergy or inflammation, rather than in consuming certain foods and expecting them to make your skin better.
Tuesday, April 30, 2013
Thursday, April 25, 2013
The "Eczema App." Neat, useful, but a heavy advertising touch
I have an iPhone but I’m not crazy about apps. You won’t find me playing Angry Birds or one of those flashy bloop-de-bloop games during my commute. I’ve figured out how to listen to audiobooks and that’s good enough for me.
Still, I was intrigued when I saw the National Eczema Association had developed a free “Eczema App” together with pharma giant Bayer. I decided to check it out. It took seconds to download from the App Store to my iPhone 5.
The Eczema App is three things at the same time: a flare tracker and reporter; an information reference; and an advertisement for Bayer’s topical steroid Desonate.
The flare tracker and reporter seems like it could be pretty useful, especially to a parent trying to figure out what is triggering his or her child’s eczema. The app lets you register when a flare starts and stops. In between, you can note what you think might be triggering it, and take pictures of the damage. You can email a flare report, images and notes included, to your doctor or nurse.
And you can set up profiles for as many as five people—I set up one for myself and one for my daughter.
My only quibble with this section was that I had trouble finding the button that would let me report that my flare had ended. (This function is hidden in the Tracker > Update > Flare-up details tab.)
The second, the info-and-news section, is a nice little package of basic facts and advice for patients with eczema or parents of affected children. It’s pitched toward someone who hasn’t encountered eczema before. Me, I’ve had it for 41 years and I blog about it, so my first reaction was that this section was too dumbed-down, but I can see that it could be useful to a newbie.
I do wish the info section didn’t mention antihistamines though. They do not help prevent the itch of eczema and their only utility is that they can make you drowsy and might make it easier for you to go to sleep.
The Desonate advertising section is placed toward the bottom of the app. It is semi-discreet. But it still seems like pushy pharma marketing to me. I hope the NEA got some decent sponsorship funds in return for the exposure.
My overall impression of the app was colored by the advertising. It's great that you can use your iPhone to collect and report medical data. But the app is much like a free mug or pen you might pick up at a convention. You drink your coffee or scribble your notes, and it gets the job done, but that logo is always staring at you from your desk.
When I tweeted about the Eczema App, I heard back on Twitter from Emma Williams, a nurse in Swansea, Wales who operates a specialty eczema clinic. She too has an eczema app, "Eczema Expert." I took a glance at it in the App Store but was put off by a couple glaring mistakes—one of the questions in the diagnostic section was “Do you itchy skin?” and there was a mention of “tropical” steroids. I couldn’t bring myself to spend $1.99 because the typos gave a shoddy impression. Let me know when you’ve fixed the app, Emma!
Still, I was intrigued when I saw the National Eczema Association had developed a free “Eczema App” together with pharma giant Bayer. I decided to check it out. It took seconds to download from the App Store to my iPhone 5.
The Eczema App is three things at the same time: a flare tracker and reporter; an information reference; and an advertisement for Bayer’s topical steroid Desonate.
The flare tracker and reporter seems like it could be pretty useful, especially to a parent trying to figure out what is triggering his or her child’s eczema. The app lets you register when a flare starts and stops. In between, you can note what you think might be triggering it, and take pictures of the damage. You can email a flare report, images and notes included, to your doctor or nurse.
And you can set up profiles for as many as five people—I set up one for myself and one for my daughter.
My only quibble with this section was that I had trouble finding the button that would let me report that my flare had ended. (This function is hidden in the Tracker > Update > Flare-up details tab.)
The second, the info-and-news section, is a nice little package of basic facts and advice for patients with eczema or parents of affected children. It’s pitched toward someone who hasn’t encountered eczema before. Me, I’ve had it for 41 years and I blog about it, so my first reaction was that this section was too dumbed-down, but I can see that it could be useful to a newbie.
I do wish the info section didn’t mention antihistamines though. They do not help prevent the itch of eczema and their only utility is that they can make you drowsy and might make it easier for you to go to sleep.
The Desonate advertising section is placed toward the bottom of the app. It is semi-discreet. But it still seems like pushy pharma marketing to me. I hope the NEA got some decent sponsorship funds in return for the exposure.
My overall impression of the app was colored by the advertising. It's great that you can use your iPhone to collect and report medical data. But the app is much like a free mug or pen you might pick up at a convention. You drink your coffee or scribble your notes, and it gets the job done, but that logo is always staring at you from your desk.
***
When I tweeted about the Eczema App, I heard back on Twitter from Emma Williams, a nurse in Swansea, Wales who operates a specialty eczema clinic. She too has an eczema app, "Eczema Expert." I took a glance at it in the App Store but was put off by a couple glaring mistakes—one of the questions in the diagnostic section was “Do you itchy skin?” and there was a mention of “tropical” steroids. I couldn’t bring myself to spend $1.99 because the typos gave a shoddy impression. Let me know when you’ve fixed the app, Emma!
Wednesday, April 24, 2013
New type of white blood cell identified; may play role in eczema
Scientists have identified a new type of white blood cell found in the upper layers of the skin that can either trigger or shut down inflammation.
The research was carried out in mice, which are commonly used as models for the human immune system. There is no proof that the same cells exist in humans, but these results will certainly impel researchers to look for them. It is possible that the newly identified cells play a role in eczema.
The cell type, “group 2 innate lymphoid cells” (ILC2), protects mice against parasitic worms called helminths. In mice, the cells appear to be the main source of the signaling molecule IL-13, known to be important in type 2 immunity—the arm of the immune system that is over-active in allergic disease and eczema.
The scientists took video that showed ILC2 cells moving around in the skin and occasionally stopping to make physical contact with mast cells. Mast cells play an important role in the early stages of inflammation. They are suppressed by IL-13.
However, the researchers also introduced ILC2 cells into mice that had no B or T cells (the white blood cells responsible for much of the immune response). In these mice, stimulating ILC2 cells caused inflammation with symptoms that looked like eczema.
So it appears that ILC2 cells can increase or decrease inflammation, depending on the signaling molecules they secrete. Potentially, drugs might be discovered to control ILC2 cells in the skin and, through them, manage eczema.
The research was performed by a joint Australian/New Zealand/American team led by Wolfgang Weninger, a professor of dermatology at the University of Sydney. It was published in the journal Nature Immunology.
The research was carried out in mice, which are commonly used as models for the human immune system. There is no proof that the same cells exist in humans, but these results will certainly impel researchers to look for them. It is possible that the newly identified cells play a role in eczema.
The cell type, “group 2 innate lymphoid cells” (ILC2), protects mice against parasitic worms called helminths. In mice, the cells appear to be the main source of the signaling molecule IL-13, known to be important in type 2 immunity—the arm of the immune system that is over-active in allergic disease and eczema.
The scientists took video that showed ILC2 cells moving around in the skin and occasionally stopping to make physical contact with mast cells. Mast cells play an important role in the early stages of inflammation. They are suppressed by IL-13.
However, the researchers also introduced ILC2 cells into mice that had no B or T cells (the white blood cells responsible for much of the immune response). In these mice, stimulating ILC2 cells caused inflammation with symptoms that looked like eczema.
So it appears that ILC2 cells can increase or decrease inflammation, depending on the signaling molecules they secrete. Potentially, drugs might be discovered to control ILC2 cells in the skin and, through them, manage eczema.
The research was performed by a joint Australian/New Zealand/American team led by Wolfgang Weninger, a professor of dermatology at the University of Sydney. It was published in the journal Nature Immunology.
Tuesday, April 23, 2013
Scalp eczema therapy: a work in progress
Last year I wrote about scalp eczema. The post is one of the most-read on this blog. Good news: I’m going to write about it again! The reason: once again, scalp eczema is a problem for me.
My scalp trouble seems to follow a yearly cycle, and it might have something to do with pollen, since I had it last spring. Or it might be just that I started swimming again a few months ago. There’s no getting around the fact that swimming is bad for my skin. (I swim, nevertheless, because it’s good for my back.)
I just get this ridiculously dry scalp that starts breaking out into itchy patches. It is extremely hard not to pick at and scratch.
It seems to be a three-part problem: inflammation, dryness, and bad habit.
To treat the inflammation I rub in steroid, which is bad because 1) it’s quite strong (fluocinonide ointment) and 2) it hardly works at all.
I also use a tar shampoo, T-Gel. I love tar shampoo—it’s got a great bite to it and knocks the itch out for a few hours. But it’s a shampoo, made from detergents, which wash oils out and leave my scalp screaming dry.
I realized that the tar shampoo was part of the problem, so now I use it only once a week.
I used to follow tar shampoo with jojoba oil. Jojoba is an expensive, fine-grade natural oil that comes from the seeds of a Mexican desert plant. It is my conclusion that jojoba is a waste of time and money. It doesn't do much besides run down behind your ears and make your neck greasy.
Now I follow my tar shampoo with Aveeno Daily Moisturizing lotion. That's right, I rub it all over my head. It dries to a shellac and makes me look like my grandfather when he used Brylcreem back in the 1950s. Aveeno is good both because it contains soothing oatmeal extract and dimethicone, a rubbery polymer that holds moisture well.
This is not a perfect solution, and a bit disgusting. But it’s better than rubbing in strong steroid ointment out of desperation, I think.
In order to use the Aveeno lotion (to get more of it on my scalp and less on my hair), I buzz my hair short. I’ve got a home barber kit for this. I use the 0.5” or 0.75” attachments. I gave myself a haircut last week, after waiting several months for my scalp eczema to go away so I could go to the barber.
I’m not super-keen on Aveeno for this though. I am going to try shea butter, which at least has the virtue of being a bona fide hair product.
I am surprised that very few commercial companies, if any, make moisturizing scalp lotion. You’d think there would be a market for it. Cosmetics companies seem to approach this as a conditioner problem, as if we’re all worried about how beautiful and manageable our hair is. Well I’m not. I’m a 41-year-old balding man and I have no use for conditioner.
Ironically, Kamedis, the Chinese herbal therapeutics company whose skin lotion I reviewed recently (and none too positively) makes scalp lotion for eczema. Maybe I should give that a shot!
Let’s not forget that my bad habit of picking at dry skin and scabs on my scalp is part of the problem too. I know that it’s possible to quit the habit to some degree by undergoing habit-reversal training.
There are two phases to habit reversal. In the first, you count how many times you touch, pick, or scratch yourself during the day. In the second, you train yourself to recognize that you're about to scratch, and to resist the urge, either by clenching your hand or digging your nails into your palm.
Here’s the barrier that prevents me from self-training—I don’t own a simple digital counter that would enable me to keep track of how many times I am scratching. Last time I tried habit-reversal, I made pencil marks on the back of a business card. I touch my head more than 500 times a day, apparently. It's a pain to have to keep making pencil marks.
I just looked on Amazon. This is what I want. Isn’t it ridiculous that I am not able to stop picking at my scalp because I don’t have a little clicker device that costs less than $7.00? I just bought it.
My scalp trouble seems to follow a yearly cycle, and it might have something to do with pollen, since I had it last spring. Or it might be just that I started swimming again a few months ago. There’s no getting around the fact that swimming is bad for my skin. (I swim, nevertheless, because it’s good for my back.)
I just get this ridiculously dry scalp that starts breaking out into itchy patches. It is extremely hard not to pick at and scratch.
It seems to be a three-part problem: inflammation, dryness, and bad habit.
To treat the inflammation I rub in steroid, which is bad because 1) it’s quite strong (fluocinonide ointment) and 2) it hardly works at all.
I also use a tar shampoo, T-Gel. I love tar shampoo—it’s got a great bite to it and knocks the itch out for a few hours. But it’s a shampoo, made from detergents, which wash oils out and leave my scalp screaming dry.
I realized that the tar shampoo was part of the problem, so now I use it only once a week.
I used to follow tar shampoo with jojoba oil. Jojoba is an expensive, fine-grade natural oil that comes from the seeds of a Mexican desert plant. It is my conclusion that jojoba is a waste of time and money. It doesn't do much besides run down behind your ears and make your neck greasy.
Now I follow my tar shampoo with Aveeno Daily Moisturizing lotion. That's right, I rub it all over my head. It dries to a shellac and makes me look like my grandfather when he used Brylcreem back in the 1950s. Aveeno is good both because it contains soothing oatmeal extract and dimethicone, a rubbery polymer that holds moisture well.
This is not a perfect solution, and a bit disgusting. But it’s better than rubbing in strong steroid ointment out of desperation, I think.
In order to use the Aveeno lotion (to get more of it on my scalp and less on my hair), I buzz my hair short. I’ve got a home barber kit for this. I use the 0.5” or 0.75” attachments. I gave myself a haircut last week, after waiting several months for my scalp eczema to go away so I could go to the barber.
I’m not super-keen on Aveeno for this though. I am going to try shea butter, which at least has the virtue of being a bona fide hair product.
I am surprised that very few commercial companies, if any, make moisturizing scalp lotion. You’d think there would be a market for it. Cosmetics companies seem to approach this as a conditioner problem, as if we’re all worried about how beautiful and manageable our hair is. Well I’m not. I’m a 41-year-old balding man and I have no use for conditioner.
Ironically, Kamedis, the Chinese herbal therapeutics company whose skin lotion I reviewed recently (and none too positively) makes scalp lotion for eczema. Maybe I should give that a shot!
* * *
Let’s not forget that my bad habit of picking at dry skin and scabs on my scalp is part of the problem too. I know that it’s possible to quit the habit to some degree by undergoing habit-reversal training.
There are two phases to habit reversal. In the first, you count how many times you touch, pick, or scratch yourself during the day. In the second, you train yourself to recognize that you're about to scratch, and to resist the urge, either by clenching your hand or digging your nails into your palm.
Here’s the barrier that prevents me from self-training—I don’t own a simple digital counter that would enable me to keep track of how many times I am scratching. Last time I tried habit-reversal, I made pencil marks on the back of a business card. I touch my head more than 500 times a day, apparently. It's a pain to have to keep making pencil marks.
I just looked on Amazon. This is what I want. Isn’t it ridiculous that I am not able to stop picking at my scalp because I don’t have a little clicker device that costs less than $7.00? I just bought it.
Thursday, April 18, 2013
Eczema product review: TOPICMedis Calming Lotion (traditional Chinese herbal)
My take on traditional Chinese medicine (TCM), of the herbal variety, is that the theory is bullshit. Yin/yang? The "five elements" being wood, fire, earth, metal, and water? "Energy meridians"? Medieval thinking.
Herbal medicine, though, is a major foundation of modern pharmacy. TCM herbs contain molecules that are biologically active--what Western medicine would call drugs.
This is why I doubt that the TCM practice of dosing with several (sometimes nine or ten) herbs in combination is a good idea. The potential for side effects and drug interactions is too high.
I acknowledge that empirical, practical knowledge is a powerful way to solve problems, and that TCM could work for certain conditions in the right circumstances. You would need to have a very experienced TCM practitioner treating a patient for a condition that the expert was familiar with. You could get results--even though the theory is bunk.
But I am skeptical when companies market TCM herb-containing products directly to consumers. The treatment can't be tailored to the patient. The dosing and quality control are dubious. How do you know what the active ingredients are, and are they consistent from batch to batch?
And most importantly, who has verified that these things work and aren't toxic?
The answer is: nobody.
Recently I was asked whether I would review TOPICMedis Calming Lotion, a product of the Israeli company Kamedis. The lotion contains four TCM herbal extracts. I was intrigued, and agreed--because I wanted to learn which TCM herbs might be useful in treating eczema.
So what's in TOPICMedis Calming Lotion?
The first three ingredients listed are "water, glycerin, dimethicone & cyclotetrasiloxane & polysilicone-11."
I like dimethicone. It's a rubbery polymer that Aveeno includes in their Daily Moisturizing Lotion and I find it seals moisture into my skin. Not exactly a traditional herb though.
The lotion contains extracts from four herbs: Rheum palmatum, Scutellaria baicalensis, licorice root, and Cnidium monnieri. I couldn't find any information about how much of any of these was actually in the product.
Right now I have eczema in a number of places including the backs of my hands. I rubbed Kamedis lotion into my left hand, and used the usual stuff on my right hand: Eucerin and Aveeno. I tried this for three days. I saw no difference between my right hand and my left. (No improvement in either.)
As weak as my trial was as a scientific exercise, I did better than Kamedis in one respect: I used a control. Kamedis tells me they have conducted a clinical trial that shows their lotion improves symptoms in 20 patients with eczema. They did not use a control group: either a group that received no treatment or a group that received a standard treatment. Therefore their trial is of no value.
This prompted me to look at how TCM herbs regulated in the United States. I hadn't thought about this before. I was surprised--and appalled--to learn that to a great degree TCM herbs are not regulated at all.
Amazing, isn't it? Drug companies pay huge settlements when it turns out that a new drug has a fatal side effect in a tiny subset of users. Drugs must undergo an enormous battery of tests to verify efficacy and non-toxicity in animals and humans. Drug manufacturers employ stringent quality control to ensure the same dose is in every pill or ointment. TCM herbs don't have to pass any tests. We're supposed to rely on folk wisdom and the goodwill of the company selling the product.
We can thank the Dietary Supplement Health and Education Act of 1994 (DSHEA) for tying the FDA's hands when it comes to regulating dietary supplements. The Kamedis lotion isn't a supplement, it's a cosmetic, and the FDA is supposed to regulate cosmetics, but TCM falls into a category that isn't controlled strongly if at all--and I am sure there are loopholes that companies can use to get pretty much any products on the shelves in stores or on the internet.
If anyone knows more than I do about TCM regulation in the United States, I would appreciate clarification.
I remain appreciative of TCM's potential, but it is a jungle out there. There's way too much potential for quackery (expensive placebos), danger for side effects and drug interactions with TCM components and conventional therapies. And even if you have the right TCM herb, how can you ensure the same amount of active ingredient is in each batch?
I appreciate the opportunity Kamedis gave me to test their lotion--at the very least, it alerted me to four herbs that (I'm guessing) TCM practitioners have used over the ages to treat eczema. Maybe one or more of them contain novel molecules that can be formulated to provide real, quantifiable benefit.
Herbal medicine, though, is a major foundation of modern pharmacy. TCM herbs contain molecules that are biologically active--what Western medicine would call drugs.
This is why I doubt that the TCM practice of dosing with several (sometimes nine or ten) herbs in combination is a good idea. The potential for side effects and drug interactions is too high.
I acknowledge that empirical, practical knowledge is a powerful way to solve problems, and that TCM could work for certain conditions in the right circumstances. You would need to have a very experienced TCM practitioner treating a patient for a condition that the expert was familiar with. You could get results--even though the theory is bunk.
But I am skeptical when companies market TCM herb-containing products directly to consumers. The treatment can't be tailored to the patient. The dosing and quality control are dubious. How do you know what the active ingredients are, and are they consistent from batch to batch?
And most importantly, who has verified that these things work and aren't toxic?
Recently I was asked whether I would review TOPICMedis Calming Lotion, a product of the Israeli company Kamedis. The lotion contains four TCM herbal extracts. I was intrigued, and agreed--because I wanted to learn which TCM herbs might be useful in treating eczema.
So what's in TOPICMedis Calming Lotion?
The first three ingredients listed are "water, glycerin, dimethicone & cyclotetrasiloxane & polysilicone-11."
I like dimethicone. It's a rubbery polymer that Aveeno includes in their Daily Moisturizing Lotion and I find it seals moisture into my skin. Not exactly a traditional herb though.
The lotion contains extracts from four herbs: Rheum palmatum, Scutellaria baicalensis, licorice root, and Cnidium monnieri. I couldn't find any information about how much of any of these was actually in the product.
Right now I have eczema in a number of places including the backs of my hands. I rubbed Kamedis lotion into my left hand, and used the usual stuff on my right hand: Eucerin and Aveeno. I tried this for three days. I saw no difference between my right hand and my left. (No improvement in either.)
As weak as my trial was as a scientific exercise, I did better than Kamedis in one respect: I used a control. Kamedis tells me they have conducted a clinical trial that shows their lotion improves symptoms in 20 patients with eczema. They did not use a control group: either a group that received no treatment or a group that received a standard treatment. Therefore their trial is of no value.
This prompted me to look at how TCM herbs regulated in the United States. I hadn't thought about this before. I was surprised--and appalled--to learn that to a great degree TCM herbs are not regulated at all.
Amazing, isn't it? Drug companies pay huge settlements when it turns out that a new drug has a fatal side effect in a tiny subset of users. Drugs must undergo an enormous battery of tests to verify efficacy and non-toxicity in animals and humans. Drug manufacturers employ stringent quality control to ensure the same dose is in every pill or ointment. TCM herbs don't have to pass any tests. We're supposed to rely on folk wisdom and the goodwill of the company selling the product.
We can thank the Dietary Supplement Health and Education Act of 1994 (DSHEA) for tying the FDA's hands when it comes to regulating dietary supplements. The Kamedis lotion isn't a supplement, it's a cosmetic, and the FDA is supposed to regulate cosmetics, but TCM falls into a category that isn't controlled strongly if at all--and I am sure there are loopholes that companies can use to get pretty much any products on the shelves in stores or on the internet.
If anyone knows more than I do about TCM regulation in the United States, I would appreciate clarification.
I remain appreciative of TCM's potential, but it is a jungle out there. There's way too much potential for quackery (expensive placebos), danger for side effects and drug interactions with TCM components and conventional therapies. And even if you have the right TCM herb, how can you ensure the same amount of active ingredient is in each batch?
I appreciate the opportunity Kamedis gave me to test their lotion--at the very least, it alerted me to four herbs that (I'm guessing) TCM practitioners have used over the ages to treat eczema. Maybe one or more of them contain novel molecules that can be formulated to provide real, quantifiable benefit.
Tuesday, April 16, 2013
Book review: The Problem Skin Bible
I found Truong’s book of interest not because it has all the answers, but because it urges patients to take responsibility for their own conditions and tailor their lives to make their skin better.
In my opinion the best analogy for Truong’s book is not the Bible but rather one of the books that make up the Bible—one of those to be found later in the Old Testament. (The book of Job, perhaps?) It’s one person’s impassioned take on his experience, and best read with an understanding of the scientific and medical context.
Truong focuses largely on diet. From what I know he does not have a scientific or medical background. This is apparent in the inconsistent way he refers to allergy throughout. He knows what worked for him, and he has clearly read widely in the scientific literature.
I found many of his recommendations similar to those I might make myself—avoid processed foods and the products of industrial agriculture, stay clear of alcohol if you can. Toward the end of the book, he has a lot of good advice on skincare regimes and lifestyle choices.
But he also holds views I don’t agree with: e.g., that GMOs are bad for you. (My own view is that GMOs are not inherently bad, although they are engineered to tolerate higher pesticide levels, which could mean GM food contains more toxins).
He’s anti-wheat, which is fashionable these days. Sure, gluten allergies are a problem for some, but hardly everyone. Also he seems to believe that a number of foods generally considered wholesome (especially nuts and seeds) contain things that are bad for you, such as phytic acid—which is only a concern for people who eat a nutritionally restricted diet. To reduce phytic acid levels, Truong advises roasting nuts—which destroys the omega-3 oils that he then advises you take as supplements.
He also mentions that black pepper is a good spice, and in one of his recommended recipes he lists chili sauce as an ingredient. In my experience, black pepper and chili inflame my skin and cause itch. Obviously they don't for him.
For these and many other reasons, I can’t recommend The Problem Skin Bible as anything like an infallible resource. But I like Truong's positive attitude. If you are interested in how a fellow patient has taken the initiative to improve his life, you should check his book out. Contact him to request a copy.
*Truong tells me that "Bk" is his nickname and that he prefers to include it in his name.
Thursday, April 11, 2013
The HOME III meeting: sausage-making in San Diego
Otto von Bismarck is reputed to have said “Laws are like sausages; it is better not to see them being made.” You could say the same for the process of determining clinical standards for a complex disease. Although I thoroughly enjoyed the meeting I attended last weekend, Harmonising Outcome Measures for Eczema (HOME), I witnessed some sausage-making in San Diego.
Three things became clear to me during HOME. First, eczema (atopic dermatitis) is a difficult disease to diagnose and quantify improvement of. What exactly do you measure when you have an eczema patient undergoing therapy and you want to see if they’ve improved? Dry skin? Redness? Oozing? Does the area of coverage matter? The aim of the HOME organizers was to settle on universal standards.
Second, setting standards is taking a long time. This was HOME III (HOME I took place in 2010 in Germany) and people were already talking about where to hold HOME IV (possibly Japan). Over the course of the first day I became aware that in HOME III we were basically voting on questions that had been left open at the previous meeting.
Third, if you were going to choose anyone to lead a diverse, international group of dermatologists, and hope to get a democratic outcome which everyone could agree was fair, you could do no better than pick Jochen Schmitt and Hywel Williams, who led HOME III. Especially Williams—he kept things moving forward, but his genial, friendly style ensured everyone had a voice and that, though we knew we would rarely have full agreement on any topic, the criteria for coming to a decision were always made clear beforehand. (There were about 50 people in the room, all voting using those wireless clicker devices.)
So what got decided? Boy, I wish I had been taking notes. I don’t completely remember, to be honest! At some point the meeting minutes will get posted.
For the first day of the meeting, Dr. Jasvinder Singh from the University of Alabama seemed to dominate. I wondered why, especially since he apparently didn't know anything about eczema--in particular he didn't know why we were concerned about itch. Later I understood better the reason for his presence and why he was given the floor--he is an expert in "outcome measures" for rheumatoid arthritis. He was there to explain how doctors and scientists have approached characterizing a complex disease, and to help develop a system for eczema.
We spent an awfully long time deciding between two clinical “instruments” for measuring eczema severity: EASI and SCORAD. Both are essentially surveys that ask a doctor to note how severe eczema is across various regions of a patient’s skin, and then calculate a weighted sum, taking into account surface area, to produce a single final number that purports to measure overall severity.
EASI was the winner. (On a side note, I want to say how amusing it was to hear the Danish and Swedish attendees pronounce “EASI” as “ee-AH-zi,” oblivious to the acronym.)
Apparently EASI was chosen because it somehow allows a doctor to rate a patient as having severe eczema even if the condition is confined to a small area. That was my understanding, anyway. While we were discussing the matter in small groups, I argued for SCORAD in the belief that it did what EASI was later touted as doing. The general feeling, though, was that it didn't matter which one got picked, as long as we chose one, so everybody would be using the same "instrument."
Then we discussed quality-of-life measures. I was asked for my opinion, but had to admit that I hardly understood what they were talking about because the jargon was so foreign to my experience as a patient.
And next, we talked about what symptoms patients might be able to use to report their subjective experience of the disease (e.g. in long-term studies where patients have to keep diaries or report via the internet). I made a rather incoherent point that the symptoms should include not only physical measures but also psychological effects such as shame, anger, and depression. A discussion followed about whether this counted as symptoms or quality of life measures. The result was that I was asked to join the ongoing Quality of Life group. We shall see what this entails.
And finally we had a rather unsatisfying discussion of “long term control” that quickly devolved into an argument about what a flare is. I think people ran out of steam, the meeting ran out of time, and Tijuana and tequila were beckoning for several participants. Hence we didn’t reach any conclusion. Guess it'll get sorted out at HOME IV!
Being part of this felt like watching C-SPAN. At certain points, when things seemed to be going in circles, we benefited from the clear perspective of David Margolis, an epidemiologist at the University of Pennsylvania. Possibly because of his mathematical perspective, he was able to cut through the BS and say that we were using the wrong concept or debating points that had already been decided. I was told later in the meeting by a senior member that Margolis was an extremely valuable contributor. Because he had seemed so critical throughout, I was surprised when he told me afterward that he thought the meeting had made a great deal of progress.
Margolis said that the FDA is not obliged to use the standards that the HOME group decided upon when it comes to judging the success of clinical trials. So this leaves me wondering what the point was; but as the sage said, a journey of a thousand miles begins with a single step. You have to start somewhere, and where better to start than HOME?
Three things became clear to me during HOME. First, eczema (atopic dermatitis) is a difficult disease to diagnose and quantify improvement of. What exactly do you measure when you have an eczema patient undergoing therapy and you want to see if they’ve improved? Dry skin? Redness? Oozing? Does the area of coverage matter? The aim of the HOME organizers was to settle on universal standards.
Second, setting standards is taking a long time. This was HOME III (HOME I took place in 2010 in Germany) and people were already talking about where to hold HOME IV (possibly Japan). Over the course of the first day I became aware that in HOME III we were basically voting on questions that had been left open at the previous meeting.
Third, if you were going to choose anyone to lead a diverse, international group of dermatologists, and hope to get a democratic outcome which everyone could agree was fair, you could do no better than pick Jochen Schmitt and Hywel Williams, who led HOME III. Especially Williams—he kept things moving forward, but his genial, friendly style ensured everyone had a voice and that, though we knew we would rarely have full agreement on any topic, the criteria for coming to a decision were always made clear beforehand. (There were about 50 people in the room, all voting using those wireless clicker devices.)
So what got decided? Boy, I wish I had been taking notes. I don’t completely remember, to be honest! At some point the meeting minutes will get posted.
For the first day of the meeting, Dr. Jasvinder Singh from the University of Alabama seemed to dominate. I wondered why, especially since he apparently didn't know anything about eczema--in particular he didn't know why we were concerned about itch. Later I understood better the reason for his presence and why he was given the floor--he is an expert in "outcome measures" for rheumatoid arthritis. He was there to explain how doctors and scientists have approached characterizing a complex disease, and to help develop a system for eczema.
We spent an awfully long time deciding between two clinical “instruments” for measuring eczema severity: EASI and SCORAD. Both are essentially surveys that ask a doctor to note how severe eczema is across various regions of a patient’s skin, and then calculate a weighted sum, taking into account surface area, to produce a single final number that purports to measure overall severity.
EASI was the winner. (On a side note, I want to say how amusing it was to hear the Danish and Swedish attendees pronounce “EASI” as “ee-AH-zi,” oblivious to the acronym.)
Apparently EASI was chosen because it somehow allows a doctor to rate a patient as having severe eczema even if the condition is confined to a small area. That was my understanding, anyway. While we were discussing the matter in small groups, I argued for SCORAD in the belief that it did what EASI was later touted as doing. The general feeling, though, was that it didn't matter which one got picked, as long as we chose one, so everybody would be using the same "instrument."
Then we discussed quality-of-life measures. I was asked for my opinion, but had to admit that I hardly understood what they were talking about because the jargon was so foreign to my experience as a patient.
And next, we talked about what symptoms patients might be able to use to report their subjective experience of the disease (e.g. in long-term studies where patients have to keep diaries or report via the internet). I made a rather incoherent point that the symptoms should include not only physical measures but also psychological effects such as shame, anger, and depression. A discussion followed about whether this counted as symptoms or quality of life measures. The result was that I was asked to join the ongoing Quality of Life group. We shall see what this entails.
And finally we had a rather unsatisfying discussion of “long term control” that quickly devolved into an argument about what a flare is. I think people ran out of steam, the meeting ran out of time, and Tijuana and tequila were beckoning for several participants. Hence we didn’t reach any conclusion. Guess it'll get sorted out at HOME IV!
Being part of this felt like watching C-SPAN. At certain points, when things seemed to be going in circles, we benefited from the clear perspective of David Margolis, an epidemiologist at the University of Pennsylvania. Possibly because of his mathematical perspective, he was able to cut through the BS and say that we were using the wrong concept or debating points that had already been decided. I was told later in the meeting by a senior member that Margolis was an extremely valuable contributor. Because he had seemed so critical throughout, I was surprised when he told me afterward that he thought the meeting had made a great deal of progress.
Margolis said that the FDA is not obliged to use the standards that the HOME group decided upon when it comes to judging the success of clinical trials. So this leaves me wondering what the point was; but as the sage said, a journey of a thousand miles begins with a single step. You have to start somewhere, and where better to start than HOME?
Wednesday, April 10, 2013
It's World Allergy Week. Is anything happening?
April 8-14 is World Allergy Week.
What is World Allergy Week? It appears not to be much more than a name, although the organizers held phone conferences Monday and today. Google News doesn’t list any items for World Allergy Week; nor does the website for the Asthma and Allergy Foundation of America.
Here’s the official press release.
WAW is a creation of the World Allergy Organization, a loose federation of 93 national allergy societies.
This year’s WAW is focused on food allergies and sensitivities. Food sensitivities (and allergies) can trigger eczema for many people—and allergies to pollen and pets are also a major problem.
I was alerted to WAW by Elopy Sibanda, a professor of clinical immunology and allergy at the College of Health Sciences in Harare, Zimbabwe. I value Sibanda’s perspective because his work makes it clear that allergy can affect people around the globe and is not something that can be automatically blamed on modern science and medicine.
Come to think of it, that may be the point of World Allergy Week.
I asked Sibanda a number of questions by email. Let’s hope he responds.
What is World Allergy Week? It appears not to be much more than a name, although the organizers held phone conferences Monday and today. Google News doesn’t list any items for World Allergy Week; nor does the website for the Asthma and Allergy Foundation of America.
Here’s the official press release.
WAW is a creation of the World Allergy Organization, a loose federation of 93 national allergy societies.
This year’s WAW is focused on food allergies and sensitivities. Food sensitivities (and allergies) can trigger eczema for many people—and allergies to pollen and pets are also a major problem.
I was alerted to WAW by Elopy Sibanda, a professor of clinical immunology and allergy at the College of Health Sciences in Harare, Zimbabwe. I value Sibanda’s perspective because his work makes it clear that allergy can affect people around the globe and is not something that can be automatically blamed on modern science and medicine.
Come to think of it, that may be the point of World Allergy Week.
I asked Sibanda a number of questions by email. Let’s hope he responds.
Tuesday, April 9, 2013
San Diego eczema meeting: an intense experience
After you’ve been tormented by eczema your entire life, and always avoided talking about your embarrassing condition, and dealt with doctors whose solution is to prescribe more steroids and expect you to go away happy, what is it like to spend two days in the company of some of the world’s leading eczema experts, talking about nothing else?
It’s pretty intense, I found out last weekend at the HOME (Harmonising Outcome Measures for Eczema) meeting in San Diego, California, where I and four other patient representatives helped clinicians and pharma reps from the US, UK, Germany, Japan, Brazil and other countries define how eczema severity should be characterized in clinical trials.
I’ll cover the technical details in a later post. Right now I just want to describe the experience.
I had been invited by Julie Block of the National Eczema Association. She introduced me to Gil Yosipovitch, Jon Hanifin and others. My initial feeling was one of awe. Many years ago I realized that scientists were actually studying itch and eczema when I read a New York Times article about Yosipovitch’s work. Now here I was on Saturday sitting with him and Block, eating fish tacos and getting my balding head sunburned.
And then Hanifin walked by. He developed the original criteria, now used worldwide, for diagnosing eczema in the clinic. In the conference room, was that Eric Simpson of Oregon Health Sciences University? And Hywel Williams of the University of Nottingham, the UK leader in eczema research? It was surreal—the equivalent for a tennis fan, say, would be being in the same room as Roger Federer, Rafael Nadal, Andy Murray and the Williams sisters.
Also present along with me were several other patient representatives, three of whom either had eczema themselves and one who was the father of two affected children. Among them were Stephanie Merhand, founder of l’Assocation Francaise de l’Eczema (from Toulouse, France) and Rosemary Humphreys from the National Eczema Society (in the UK).
At first, it was a bit strange to meet people with whom you have nothing in common but a medical condition, but over the course of the two days I came to realize that it was not so much the eczema we shared but similar life experiences: the days and nights of itch, the social anguish.
During a short car ride, Tim Burton (a UK patient) and I traded stories about the various pharmaceuticals we’d inflicted on ourselves. It was hilarious. I’d given up on Protopic because it burned so badly. Tim uses it on his face. “It’s like holding your face to a three-burner fire for a couple weeks, but it eventually stops,” he said. Sounds like fun! I informed him that the best way to take prednisone was as an injection in the buttock.
In the working sessions I had cognitive dissonance hearing my condition discussed openly and unemotionally. I’ve spent nights tearing with my nails at scalp, my arms, my feet. I’ve endured, as anyone with chronic eczema does, the social pain of high school and university, the outings and activities missed, the relationships that never happened. Eczema is something that makes me want to hide in the basement. And here were people calmly displaying Powerpoint slides and droning on like it was a graduate seminar in statistics or comparative literature.
The jargon really was incredible. In casual conversation you were supposed to know what “xerosis,” “oedema,” “erythema,” and other words meant. You were supposed to be familiar with the acronyms for what seemed like fifty different clinical techniques. You were supposed to know the difference between “signs” and “symptoms,” which turned out not to be so clear-cut.
At one point I was asked what I thought about a topic they’d been discussing for fifteen minutes. I had to admit I hadn’t understood a word. It felt a bit like being a laboratory rat listening to scientists describe experiments they’d done on you.
That is why we patients were invited—to humanize things. “You might not realize it, but you are changing the tone of the session just by being here,” Roberto Takaoka, a dermatologist from Brazil, told me. Several of the presenters opened their talks by showing pictures of children or adult patients and reminding everyone that we were doing this for the patients. Apparently many doctors tend to “treat the disease, not the patient” and meetings without patients can become even more abstract and academic. Rosemary Humphreys told me that it she was on a crusade to get scientists to use the word “patient” instead of “subject”—“I’m a linguist and I know what the difference means,” she said.
At the same time, I remarked that we patients were treated as equals by the academics at this meeting. And everyone was committed and attentive and sincere. If anyone was checking their iPhone it was me. That says something.
As time went on, I realized that I was surrounded by some of the world’s top dermatologists and could get free consultations for myself and my kids just by asking. For example, if your daughter says that Cerave (a ceramide cream) is burning her cracked hands, you can get the clinical benefit of the cream by first rubbing her hands with olive or safflower oil, than applying Cerave, and then putting Vaseline on the cracks. And apparently 3M has a great new surgical tape that sticks to anything but doesn’t hurt the skin when you peel it off. You can use it like a Band-Aid on greasy skin.
It was sobering to know that after having gone to this meeting I now know as much as most people on Earth about the state of eczema therapy at the moment and in the near future. There are no miracle cures in the offing. But there are many intelligent, motivated doctors and scientists working on our behalf to make things better. Not as many as there should be, and they are not funded nearly well enough. We need to get involved to let them know how important this work is and to make sure they get the support they need.
It’s pretty intense, I found out last weekend at the HOME (Harmonising Outcome Measures for Eczema) meeting in San Diego, California, where I and four other patient representatives helped clinicians and pharma reps from the US, UK, Germany, Japan, Brazil and other countries define how eczema severity should be characterized in clinical trials.
I’ll cover the technical details in a later post. Right now I just want to describe the experience.
I had been invited by Julie Block of the National Eczema Association. She introduced me to Gil Yosipovitch, Jon Hanifin and others. My initial feeling was one of awe. Many years ago I realized that scientists were actually studying itch and eczema when I read a New York Times article about Yosipovitch’s work. Now here I was on Saturday sitting with him and Block, eating fish tacos and getting my balding head sunburned.
And then Hanifin walked by. He developed the original criteria, now used worldwide, for diagnosing eczema in the clinic. In the conference room, was that Eric Simpson of Oregon Health Sciences University? And Hywel Williams of the University of Nottingham, the UK leader in eczema research? It was surreal—the equivalent for a tennis fan, say, would be being in the same room as Roger Federer, Rafael Nadal, Andy Murray and the Williams sisters.
Also present along with me were several other patient representatives, three of whom either had eczema themselves and one who was the father of two affected children. Among them were Stephanie Merhand, founder of l’Assocation Francaise de l’Eczema (from Toulouse, France) and Rosemary Humphreys from the National Eczema Society (in the UK).
At first, it was a bit strange to meet people with whom you have nothing in common but a medical condition, but over the course of the two days I came to realize that it was not so much the eczema we shared but similar life experiences: the days and nights of itch, the social anguish.
During a short car ride, Tim Burton (a UK patient) and I traded stories about the various pharmaceuticals we’d inflicted on ourselves. It was hilarious. I’d given up on Protopic because it burned so badly. Tim uses it on his face. “It’s like holding your face to a three-burner fire for a couple weeks, but it eventually stops,” he said. Sounds like fun! I informed him that the best way to take prednisone was as an injection in the buttock.
In the working sessions I had cognitive dissonance hearing my condition discussed openly and unemotionally. I’ve spent nights tearing with my nails at scalp, my arms, my feet. I’ve endured, as anyone with chronic eczema does, the social pain of high school and university, the outings and activities missed, the relationships that never happened. Eczema is something that makes me want to hide in the basement. And here were people calmly displaying Powerpoint slides and droning on like it was a graduate seminar in statistics or comparative literature.
The jargon really was incredible. In casual conversation you were supposed to know what “xerosis,” “oedema,” “erythema,” and other words meant. You were supposed to be familiar with the acronyms for what seemed like fifty different clinical techniques. You were supposed to know the difference between “signs” and “symptoms,” which turned out not to be so clear-cut.
At one point I was asked what I thought about a topic they’d been discussing for fifteen minutes. I had to admit I hadn’t understood a word. It felt a bit like being a laboratory rat listening to scientists describe experiments they’d done on you.
That is why we patients were invited—to humanize things. “You might not realize it, but you are changing the tone of the session just by being here,” Roberto Takaoka, a dermatologist from Brazil, told me. Several of the presenters opened their talks by showing pictures of children or adult patients and reminding everyone that we were doing this for the patients. Apparently many doctors tend to “treat the disease, not the patient” and meetings without patients can become even more abstract and academic. Rosemary Humphreys told me that it she was on a crusade to get scientists to use the word “patient” instead of “subject”—“I’m a linguist and I know what the difference means,” she said.
At the same time, I remarked that we patients were treated as equals by the academics at this meeting. And everyone was committed and attentive and sincere. If anyone was checking their iPhone it was me. That says something.
As time went on, I realized that I was surrounded by some of the world’s top dermatologists and could get free consultations for myself and my kids just by asking. For example, if your daughter says that Cerave (a ceramide cream) is burning her cracked hands, you can get the clinical benefit of the cream by first rubbing her hands with olive or safflower oil, than applying Cerave, and then putting Vaseline on the cracks. And apparently 3M has a great new surgical tape that sticks to anything but doesn’t hurt the skin when you peel it off. You can use it like a Band-Aid on greasy skin.
It was sobering to know that after having gone to this meeting I now know as much as most people on Earth about the state of eczema therapy at the moment and in the near future. There are no miracle cures in the offing. But there are many intelligent, motivated doctors and scientists working on our behalf to make things better. Not as many as there should be, and they are not funded nearly well enough. We need to get involved to let them know how important this work is and to make sure they get the support they need.
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