Tomorrow I go in for my several-times-a-year nerve-blocking injections. My pain specialist doctor locates the nerve clusters which are causing the most ruckus and injects them with a numbing medication which quiets them down for a while. I end up having to do this about twice a year. It’s not very pleasant; I’m fasted and I have an IV, but at least I’m (usually) fully sedated for the injections themselves. With a previous pain doctor, I woke up during the procedure once and it’s not something I’d like to repeat. They tell most people that they can go back to work the day after their injections but, as usual, I am not most people. I usually end up pretty well bed-bound in pain for about 10 days after them, and I’m still tender for a while after that. We’re going to be doing some extra sites this time so I imagine it might make my recovery a bit less happy than usual even.
But even with the intense recovery period, which Geoff helps me tremendously with (he gets me anything I need, yells at me to lay down unless I’m getting up to use the bathroom, we watch endless movies in bed, he fetches me vegan donuts to break my fast, he makes sure I have plenty of food and water at all times and I’m as comfortable as possible), they do help. The pain never completely goes away, but it knocks it down several numbers on the pain scale after my body settles down. Wish me luck tomorrow! Right now I’m just looking forward to having it be over; I’m done with anticipating it.
I’m very excited to announce that I will be featured in a local gallery, the Creative Arts Group! The show will run for almost nine weeks, from June 6th through August 5th. They will be showing eight of my DreamWorld pieces, with models Dedeker Winston, Katie Johnson, Dan Donohue and Travis Weinand. This will also be the first show that I’ve been able to use my fancy new printing paper for; Hahnemuhle fine art pearl paper (provided by the truly excellent Lauren from POV Evolving printers in downtown LA). It’s quite spectacular looking!
In addition to the images, they will also be displaying costume pieces and props I’ve made for the images, including the entire flower-festooned Spring Faerie costume. This is always how I’ve envisioned DreamWorld images being shown, with the costumes and props alongside the finished images.
They will also be showing A Poisoned Sleep Of Kissless Dreams, my very latest image and one I’ve spent almost two years working on, and one which you can still win your own print of!
A Poisoned Sleep And Kissless Dreaming Sarah Allegra – model: Katie Johnson
I’m planning on being there the first Saturday of the show, June 6th, from 12-2 for a short opening reception if you’d like to stop by! If you do come by, firstly, thank you, and secondly, feel free to mention to the gallery staff that you’re there to see my work 🙂
Many, many thanks to everyone for your help and support along my art journey, whether you’re able to come to this show or not! The gallery info is below. I hope to see you all there! 🙂
Lastly, don’t forget that there is still time to enter my ME-awareness-raising print giveaway! Just check out my previous post for info on how to enter. It’s easy and FREE! The Yellow King will be angry with you if you don’t enter the giveaway 😉
I was invited to join in something of an art-blog-chain-letter and it sounded fun, so here we are! Thanks to Hand Andy Pandy for inviting me! I’m very pleased to be able to call this very talented photographer and self portrait artist my friend. You can find him on his site, Twitter,Flickr and Google +. He’s nearing the end of a really wonderful, whimsical and humorous 365 project, which I would highly recommend you check out! I have great admiration for people who not only can start and finish a 365, but especially for people like Andy who do a high-concept piece each and every day! It’s draining for me to just think about; I have no idea how other people do it, but I admire it! You can see Andy’s blog hop post here!
Chocolate and Vanilla, by Handy Andy Pandy
The blog hop requires everyone to answer these four questions:
1. Why do I do what I do?
The short answer is because I can’t not create. It’s just a part of my soul. Days when I’m very ill or in too much pain to work are incredibly miserable for me, not so much because I feel physically bad, but because my ability to create is stifled. I’ve tried just about every visual artform there is and many non-visual ones (with varying degrees of success) but photography has been the best thing for me and resonated the most with me. It also helps that I can do much of my editing while laying down in bed with my laptop; that gives me a MUCH greater ability to work on images than if I had to sit in a chair at a desk.
Where Earth Meets The Sky, model Katie Johnson
2. How does my work differ from others of its genre?
I suppose the biggest way my work differs is that I’m drawing from my own experience and inspiration, which is inherently different than anyone else’s. Even if there’s another female, conceptual, fine art photographer and self portrait artist who has ME and really, really loves Peter S. Beagle and Robin McKinley, our work would still be different because of the forces which have shaped our souls. I also think being self-taught helps you develop a unique style since you’re always traveling on the path toward creating the vision you had in your head and have to figure things out as you go. There’s nothing wrong with formal education, and being self-taught can leave odd holes in your knowledge, but from my experience, it’s often helpful to artists maintaining their individuality.
The Court Of The Dryad Queen – model Dedeker Winston
3. How does my creative process work?
It depends somewhat on the image, but I’ll give you a couple examples. There’s always some kernel of inspiration which explodes into a concept; I’ll often make rough sketches or make notes about how I want it to look, what fabric/location to use, colors, mood, etc. Anything important that I’m afraid I’ll forget. If I need to build costumes, props or sets, I do so. I photograph my concept, and sometimes I stick exactly to my original vision while other times I discover as I’m creating that there are better ways to express whatever it is I’m wanting to express.
After the images have been shot, they move into my editing queue, where they could languish for anywhere from a few hours to many months. Once it’s that image’s turn to be edited, that can take anywhere from a few days to months. Then, after all that time, I finally declare the image done and release it onto the internet!
In The Lilac Wood – a self portrait
4. What am I working on now?
I’m always working on 50 different things at once, but I’ll give you the highlights. DreamWorld is constantly in some state of creation; I have a number of images to edit as well as pre-production tasks on my to-do list. What’s lined up next to edit are a few shots inspired by HBO’s True Detective, so I’ll be re-watching the series to soak up the flavor as I edit. Oh darn 🙂
The Shadows Lengthen – the first True Detective-inspired image I created (but not the last!)
These very talented photographers are also putting blogs up today, and I’m happy to count them as friends as well as!
At this point, I’m supposed to link to the artists who will continue the blog hop next week, but for a variety of reasons, I wasn’t able to get in touch with all my artist friends and ask them. So, if you’re reading this and would like to carry it on next Monday, feel free to! Let me know and I’ll post a link to you 🙂
First things first: the light. Let’s get to the winner of The Blue Ribbon! Drum roll please…
Congratulations, Brittany D. Perkins!!! You havewon a beautiful, 10″ x 15″ print of The Blue Ribbon!. Your print will come on beautiful, shimmering, pearlized, archival paper and will be hand-signed. Please send an email to me at sarah@sarahallegra.com with your mailing address and I’ll get it to you!
What do you guys think? Was that fun? Something we should do again? Did the tweeting format work for you? Let me know your thoughts and I can fine-tune my contest process to make it better for everyone! Don’t forget that my fundraising will continue for the entire month of May, so stock up on your art purchases now while they’ll do the most good!
I think I was telling you guys about the evolution of this character. I’ve always had a thing for horns and antlers on people (see my very first self portrait as proof) and wanted to work them into DreamWorld from the beginning. As with most mythologies, I felt there was room for a Puckish, trickster character, which is what I had in mind when I started constructing this creature. The beginning of my work on him coincided with the beginning of True Detective, a pure coincidence, but True Detective’s ominous Yellow King bled into my concept, and before I knew it my trickster had transformed beyond a mere Puck or even Loki into the DreamWorld version of The King In Yellow.
DreamWorld is an ever-evolving place, and while this King is the first sinister character to be portrayed, there are other forces at work. We will meet them eventually. For now, I think it is enough to know that the King in Yellow has been sent into exile by DreamWorld’s true King for trying to usurp the throne and plunge DreamWorld into darkness. He has been foiled for now, and is thus known as they Exiled King, though some still whisper of the King in Yellow and restoring him to his rightful, dark glory along with those who seek the same goals… but I don’t worry. The King is strong and benevolent. And we haven’t even met the Queen yet, though we will soon. She also rules for good, and is not to be taken lightly.
Let the whispers and secrets travel where they will. The King in Yellow has been sent into exile as a merciful punishment, but I doubt a second grab for the throne would be met with such leniency.
Now that you know about the Exiled King, want to see how he came to life?
My initial inspiration for the antlers was the Makhor goat’s horns, such as seen in this stock image:
Horns are always tricky to build for human heads. Making them stable but light, keeping them balanced on the head while trying to appear that there’s no supporting structure at all… they’re always a nightmare to make. And I knew these ones were going to be the largest pair I’d made yet. As usual, I dove in without a real plan and figured it out as I went.
I started with a regular headband and some strong but light wire, wrapped around itself and twisted generously onto the headband. I began introducing the twisted shape by wrapping it around my arm a few times.
I wrapped a thin layer of newspaper over each wire frame, adding a layer of masking tape on top to help it hold its shape and smooth it.
Looking very lop-sided at the moment
I initially tried spraying the antlers with spray adhesive to try to help smooth the antlers further, but all it really did was make it tacky, even after it had dried. I sighed and decided I’d try and use it to my advantage by covering the antlers with a layer of metallic gold tissue paper (which smells really weird, by the way). I filled in some of the larger dips and gaps with hot glue and added a little more tissue paper, but I knew I’d end up having to do a little smoothing to them in post production. I don’t remember why now, but I ended up getting these finished just the evening before my morning shoot, so I didn’t have more time to tinker with them and make them absolutely perfect.
You can see here the careful support structure I created literally with toothpicks and popsicle sticks broken into smaller strips. Sometimes the most straight-forward way is the best way 🙂 They’re also reinforced with a little bit of monofilament line to help them not bow away from each other.
With the antlers done, I moved onto the leaf mantle. I used approximately a billion fake leaves for this which I’d collected over several years and a number of projects. I still found myself nearly running out by the end and had to ration them carefully. I concentrated on the leaves around the face first, which also conveniently covered the antler’s headband and support structures.
A full mantle of leaves
I’ve had this one vest in my “costume” supplies for a very long time and I just love it. It looks very rugged and home-spun and fits a very wide variety of looks and styles. I’m pretty sure it was made for someone closer to my size than Dan’s, so I quickly added extra length to it by cutting straight through the shoulder seem and building a new shoulder strap with leaves hot glued to each other. The yard provided a wealth of beautiful acorns to choose from and use as buttons. And don’t worry, the squirrels still had more to eat than they ever could.
Next was the big leaf amulet. I’d gotten this pack of huge, very realistic leaves probably two years ago and had been holding on to them, waiting for them to become useful. Now was their time! This heavy chain was also in my stash for similar reasons, and became a lovely chain for what would be a leaf amulet.
Some smaller, gold-dusted leaves, a large gold key and an amber-colored, leaf-shaped crystal finished it off.
Almost done!
Leaf slipper tops
The very last thing I made were “leaf slippers,” for lack of a better word. They were just several leaves glued together with elastic straps to help keep them on Dan’s feet; super easy!
Leaf slipper bottoms
I also cut up some strips of a golden-brown, rustic-looking cotton to tie around Dan’s sleeves and pant legs, but that would be assembled the day of. As far as my prep work went, I was done! I honestly can’t remember exactly how long the whole costume took to make… several days of solid work, no sleep? Eight weeks? I have no idea, but it was long. When I’m deeply involved in a project like this, time melts away for any practical use.
Before I get more into this, let me back up and tell you about Dan Donohue, who so beautifully brought my character to life. Dan is celebrated actor, best known for his extensive theater work. He played Scar in Disney’s Broadway version of The Lion King and left for Oregon almost immediately after our shoot to go play Henry the III at the Oregon Shakespeare Festival’s version of Henry the III, as well as the father in their production of A Wrinkle In Time. You would never believe from meeting him that he does evil and sinister so well; he is truly one of the kindest, most enthusiastic and genuinely lovely people I’ve had the pleasure of working with. But the moment I told him to be a villain, it all fell away and for a second I had to catch my breath because he so completely embodied The King In Yellow. Dan is a muse if I’ve ever met one and a pure delight to work with! He’s also very creative and funny, as I’ll get into more later.
The morning of the shoot came quickly, Dan and I found our location and the entire shoot was easy and felt effortless. There may have been a bit more effort on Dan’s part trying to keep his antlers and mantle from toppling over if he moved his head too far in any direction, but it seemed that his theater experience really paid off and helped him manage this probably cumbersome bit of costume beautifully.
Antler wrangling
Generally when I shoot new DreamWorld characters, I edit one or two images; maybe three if I feel they’re all really compelling, but in this instance I edited five. This is almost unprecedented. The only other time I’ve edited more photos from a single concept, with no costume or location changes was for the Katie’s World set. That says quite a lot about how perfectly Dan was able to become the Exiled King. But enough talking about them. You want to see the images, right?
You’ve seen this first one already since I used it to tease the series, but I’m posting it again so the whole set can be seen together as intended. To set the mood, here are the two quotes which most directly influenced how I took the set, one from Robert W. Chamber’s book The King In Yellow and one from True Detective.
–Cassilda’s Song, The King In Yellow by Robert W. Chambers
“Him who eats time. Him robes; it’s a wind of invisible voices. Rejoice, death is not the end! Rejoice, death is not the end! Rejoice, Carcosa!”
– Miss Delores, True Detective episode 7, After You’ve Gone
The Shadows Lengthen
The Shadows Lengthen – detail
The Shadows Lengthen – detail. Dan’s hand here kills me every time, it’s SO PERFECT. I never knew a single hand could be so expressive, yet it is.
Pliable Reality – shot using a home-made “Lensbaby” which was the top of a water bottle
Pliable Reality – detail
Pliable Reality – detail
Pliable Reality – detail
Where Black Stars Rise
Where Black Stars Rise – detail
Where Black Stars Rise – detail
Where Black Stars Rise – detail
The Tatters Of The King
The Tatters Of The King – detail
The Tatters Of The King – detail
And perhaps my favorite of them all….
His Robe Is A Wind of Invisible Voices
His Robe Is A Wind of Invisible Voices – detail
His Robe Is A Wind of Invisible Voices – detail
His Robe Is A Wind of Invisible Voices – detail
His Robe Is A Wind of Invisible Voices – detail
Whew, still with me? I know that was a long post, but I had a lot of photos to cover!
He’s not REALLY evil, he just pretends really well!
The only sad thing is that we never got to see how well Dan managed his leaf slippers, but trust me, he killed it like everything else.
Dan as Richard the III – Copyright Oregon Shakespeare Festival
Thank you so much to Dan for being the perfect King in Yellow and furthermore being extremely patient as I slowly edited all of these!! Hopefully we won’t have to wait too long to see the Exiled King’s companions and cohorts! Dan has been invited back again whenever he returns to California, so he may pop up in more photos; I hope so 🙂
***WARNING: this post will contain spoilers for this season of True Detective. Turn back now, ye who have not seen it.***
There. With the formalities out of the way, we can settle in and chat 🙂
I don’t believe I have ever witnessed such a frenzied, overwhelming reaction to a television show in such a short amount of time. True Detective was only eight episodes long. I knew, for myself, that I was going to be completely obsessed with it by the second episode; I warned Geoff about it and that I was going to have to buy it on DVD the very moment it came out. You all probably know by now how I tend to obsess over things.
For anyone unfamiliar with True Detective, it is an eight-episode series which recently ran on HBO. It tells the story of Woody Harrelson and Matthew McConaughey, two detectives who are partnered together to solve a serial killer murder mystery. The show jumps around from 1995, when they believe they solved the crime, and 2012, when it rapidly becomes obvious that something is amiss; the killer was not apprehended after all.
What impressed me so much was how strongly the entire internet reacted to the show. Within those same short, first few weeks the internet exploded with True Detective interest, and by the finale, the fervor was so high that fans streaming the episode through HBO GO crashed the network’s servers. This is the kind of rabid loyalty that usually takes years to build up, like with Breaking Bad, for example. Both shows completely deserved the devotion given to them, but it intrigues me that True Detective was able to accomplish this in a mere eight weeks. What is so different about this show?
Like the very best art, it’s extremely difficult to parse out exactly what makes it so special. True Detective was pure magic, and I don’t believe it’s something that can be distilled down to a formula and repeated endlessly. But I’m still going to take a stab at defining what I think people, including myself, are responding to so strongly.
1. Relateable, real, unique characters. Marty Hart and Rust Cohle, played by Woody Harrelson and Matthew McConaughey respectively, are fascinating. They are fully realized, flawed, broken men but they still try to do good and make a difference in the world. Whether you’re more of a Hart or a Cohle (guess which one I am – HAH), you’ll find someone to identify with.
These men both deserve Emmys and any and all awards given out to television performances for their acting. To be honest, I’d never really gotten Matthew McConnaughey before. True Detective completely changed my opinion of him; I was absolutely blown away. Woody Harrelson is, of course, spectacular as well, but I went in expecting to enjoy his work. McConnaughey’s jaw-dropping performance in scene after scene was a revelation to me.
2. A script which treats its audience with respect. You will not be talked down to here. There is no spoon-feeding of the audience. You are expected to pay attention and remember clues dropped in one episode and discovered in another. Nothing has been dumbed-down and it’s incredibly refreshing. I want my shows to challenge me, to engage me, to literally take me on a journey. True Detective does all that and more.
3. Myth and metaphor. If you’ve seen any of the series, you’ve probably already read about how much of it was inspired by Robert W. Chambers’ 1895 classic work The King In Yellow. The King In Yellow is a collection of short stories about a fictional play within the stories by the same name. The first act of the made-up play is safe but it lures you into reading the second act. Anyone who reads even a few words of the second act is shown such horrific truths about the universe that they’re driven insane. Carcosa, The Yellow King, masks (both literal and metaphoric, masking who you truly are), black stars, the sign of the Yellow King, truth about the world bringing on madness, it all stems from The King In Yellow. This is the kind of thing that really excites me. And yes, I did read the entire King In Yellow between episodes just enhance my viewing pleasure. This is the kind of loyalty the show inspires. While it is certainly possible to watch the show and enjoy it without having delved into hundred-year-old, obscure literature, you want to for True Detective.
I have always been a proponent of the power of myth and metaphor. Its something that I try to use as often as possible in my own work. They are an incredibly strong force, which is rarely drawn on in television; certainly not to this degree.
Take the detectives’ names. Marty (Martin) Hart and Rust (Rustin) Cohle. Marty; the warm, personable, passionate, fiery, family-man-with-something-on-the-side. Martin is derived from Mars, Roman god of war and means “warring.” “Warring,” whether against the killer he hunts or the banalities of daily life, and “heart” are two perfect words to sum Marty up. “Rust” and “coal” are perfect expressions of Rustin Cohle; bleak, nihilistic and emotionless. Rust only occurs on metal, an element which is the perfect metaphor for Rust, cold and strong, but wounded, and we watch him disintegrate a little bit at a time. Coal… I can think of nothing better to describe Rust’s heart after his young daughter’s death, which sent him down this path of meaninglessness and hopelessness. But like real coal, there is the potential to change into something utterly different and glitteringly beautiful.
The more you pay attention to the show, the more subtleties you pick up on. Pay attention to how the color yellow is used, for example. Scenes that have the most to do with the killer are the most yellow. When Rust makes Marty view the VHS tape of Marie Fontenot’s murder, not only is the whole screen is saturated in yellow, it’s a clear metaphor for Marty having read the “second act.” And after you’ve read the second act, there is no going back. Things can never be the same.
Myth and metaphor are so cleverly and generously used, I could go on for pages about it, but you get the idea. I think you’ll have more fun if you watch the show and try to pick out the references yourself 🙂
I also love how the show uses classic noir and literature traits, like showing peoples’ reactions to horror instead of the horror itself. It’s an underused and extremely effective method of story-telling, not to mention underscores the mysterious tone of the entire show.
5. Healing and redemption – and the twist-within-a-twist ending. You expect, this being a show about two detectives solving a crime, even though by now you know you’ll see something more than that, that the show will end on a climax of Marty and Rust catching the killer. And they do catch their killer… who ends up being at once creepier and more ordinary than you had expected the grand Yellow King to be, which feels like a very authentic picture of actual murderers. Twist one. Marty and Rust catch their Yellow King about halfway through the last episode, giving them almost another 30 minutes to fill. Why would they need the extra time, you wonder. To finish the story. To really finish the real story.
What’s the real story? As Rust says, it’s the oldest story, of light verses darkness. Not just in the grander sense of of Marty and Rust catching their man, but of them facing the darknesses within their own lives. For Marty, this means seeing the family he destroyed years ago with his multiple affairs. And while things are far from all forgiven and forgotten, the show makes it clear that the fact that his ex-wife and daughters are even in the same room with him is a huge hurdle to have crossed. Marty is not ok. His family is not ok. But now, finally, things can begin to heal and just maybe, they will be ok some day.
And then there’s Rust. Rust, who began to withdraw from the world years and years ago when his young daughter was suddenly killed. Rust, who wants to hurry up and catch their man because his entire life has been “a circle of violence and degradation as long as I can remember” and he wants to end it as soon as his work is done. You can’t blame him for feeling that way. I think he expected he would die in the final confrontation with the killer, which very nearly did happen, but he finds himself alive still at the other end, after awakening from the coma his wounds put him in. What’s left for our nihilistic, philosophical, misanthropic hero?
A lot, it turns out. Our emotionless, cerebral, steely man, who I can remember smiling only once during the whole series, breaks down sobbing. In his coma, he had a vision of the afterlife where he encountered his father’s and daughter’s spirits, and moreover, he encountered their love. Love which continued beyond death. Which wiped away any disappointments his father may have had for him in life, any guilt he may have felt over his daughter’s death. He was wrapped in pure love, something he had never experienced before.
It profoundly effected him. When Marty, looking up at the night sky observes that the dark seems to have a lot more territory, Rust responds with “Yeah, you’re right about that… But you’re looking at it wrong… Once, there was only dark. If you ask me, the light’s winning.”
Twist two. The entire show wasn’t about them catching the Yellow King. The entire thing led up to this moment, when Marty and Rust are reconciled, the healing has begun, and Rust has his first moment of optimism. Healing and redemption. Light verses dark. That’s what we’d been watching this whole time.
So how does my self portrait tie in? In a lot of ways actually. Most obviously, it’s a reference to the starry night Marty and Rust philosophize under, the hope and beauty they were able to find. The yellow is obvious as well, and since purple is yellow’s complimentary color, that seemed like a good direction to go in. What’s hard to see in the shrunken, internet-appropriate version of the image is how the yellow fabric is sliding off my face; the mask is coming off. And most importantly, I wanted to portray the optimism Rust found there at the very end. Maybe life isn’t all shit and misery. Maybe it’s full of beauty and wonder too. I’ll do my part to try and make that second part more and more true.
This is a preview of a new set I’m currently editing for DreamWorld. This set will be important to the entire series as it marks the entrance of the first non-benevolent character.
At first I had envisioned this character, whom we only get a glimpse of for the moment, as a more Puckish, trouble-maker character, but as I worked on the costume and planned the shoot, I was also watching the first few weeks of True Detective. True Detective (one of the most original, mythic, challenging, well-acted and completely-fabulous-in-every-way show I’ve seen in a long time) had already begun making dark allusions toward The King In Yellow, and I found it seeped into what I was doing. And the darker I took the character, the more right it felt, so it was perfect timing on the part of the universe.
My model for this shoot is the incomparable Dan Donohue, an actor known for his extensive stage work, including just about every Shakespeare play you can think of and Scar, in Disney’s Broadway production of The Lion King. Dan is currently rehearsing for the Oregon Shakespeare Festival where he will play Richard the III in Richard the III, along with Mr. Murry in A Wrinkle In Time. While Dan himself is one of the sweetest, sincerest, most lovely and generous people I’ve had the pleasure to work with, he has the magical ability to summon inner darkness on whim. I had him start the shoot a little more Puckish and less evil, and let him get more and more dangerous as we progressed. And, of course, I ended up loving the darkest shots the best.
I have the wonderful problem of having too many wonderful images to choose from, but I’ll get by somehow. I wanted to send this one out into the world today, not only to harken the rest of the set, but to celebrate Dan’s appearance on Brooklyn 99 tonight! It’s a fantasic comedy in its own right, and Dan will be a great addition. He’s one of those all-talented people who is good at just about everything. It should be a lot fun to watch, especially since Stephanie Beatriz, aka Rosa is his real-life girlfriend! Think Rosa will warm up to him? Let’s find out by watching tonight! 🙂
* * * * *
In other news, there are some new ME/CFS developments which could be incredibly damaging to how the medical communities, and in a trickle down way, the public in general, think of us and treat us. The short story is that the government has hired a new commitee to come up with a new definition for ME/CFS. Not only is this completely unnecessary as we already have two extremely comprehensive definitions in the International Consensus Criteria and the Canadian Consensus Critera (both PDFs), but because the team of 15 people they have assembled is comprised of only 8 ME specialists. I’m having trouble finding the data at the moment, but the remaining specialists in the team may not all even be doctors. This does NOT seem like the optimal group.
With the pittance given to ME research in the US, it seems absurd to spend nearly 1/4 of it reinventing the criteria wheel, and even more absurd when so many of them had no prior knowledge of ME as an illness. The ineptitude of the group can be read about in the sample letter below.
There is something we can do to combat this nonsense. You can go to: http://www.contactingthecongress.org/, type in your zip code and find your representatives. Email them the following:
Recently, the IOM released its report on Gulf War Illness recommending that the illness be named “Gulf War Illness” and that the two existing case definitions be used. In short, the IOM has done exactly nothing since they were hired four years ago– for $840,000 – to come up with a case definition.
The illness, they said had “too many symptoms.” HHS has now hired IOM to “define” Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) – another complex illness with many symptoms – to the tune of 1 million dollars. And, like the committee hired to review GWI, the IOM committee for ME/CFS is primarily composed of non-experts – people who have no research or clinical experience with the disease.
Fifty of the world’s top ME/CFS experts have formally protested the IOM contract to Secretary Sebelius. They have pointed out that there already is a case definition for ME/CFS designed by experts, the Canadian Consensus Criteria, and that having non-experts devise a new definition will set research and patient care back by decades. These experts are backed by thousands of patients, some of whom publicly voiced their opposition to the contract on January 27, 2014 at the IOM public meeting.
Jim Binns, chair of the Research Advisory Committee on Gulf War Veterans’ Illnesses says, “The conclusions of the report show that it was a waste of money. The committee never had the expertise or the process to do a case definition.” The current IOM process to review and redefine ME/CFS is an even bigger waste of money. It also a waste of time, which patients who are desperately ill with this disease cannot afford to lose.
Please support us by asking HHS to cancel the IOM Review of Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and to follow the recommendation made by the experts: Immediate adoption of the Canadian Consensus Criteria for ME/CFS.
The implications of what this group decides could be devastating to the already disadvantaged ME/CFS sufferers. You can, of course, add your own details, but the letter above is a good sample. One thing we have seen is that this group can respond to public pressure and outcry, so let’s make them respond!
My deepest thanks to anyone who is willing to do this!
Mythic Pictures 