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Posts Tagged ‘gaze’

On February 10th, the Institute of Medicine released the findings of a report it had been working on for approximately a year and spent over a million dollars on.  Their task: come up with new diagnostic guidelines for patients with myalgic encephalomyalitis/Chronic Fatigue Syndrome and decide on a new, single name to replace both ME and CFS, which are generally used interchangeably for the same disease.*  Considering that ME/CFS gets only a pitiful three million dollars in government funding per year (which may sound like a lot, but consider that male pattern baldness, which is not life-threatening, gets $16 million, and you realize how very, very little that is), this is a cost we cannot afford.

Silenced © Sarah Allegra, model Travis Weinand Read on for the full image!

Silenced © Sarah Allegra, model Travis Weinand
Read on for the full image!

The IOM’s findings are so upsetting to me, I can hardly organize my thoughts into rational sentences.  But while I may want to sob and punch a hole through the wall (which, let’s face it, I’m probably not strong enough to do anymore), I need to speak up about these incredibly vital points and I need to do so in a way that other people won’t dismiss me as merely a “hysterical woman.”

I’m going to be generous here for a minute; here are the few good things gleaned from the IOM’s 304-page report.

  • They recommend retiring the trivializing name “Chronic Fatigue Syndrome.”  I fully agree with that.  I could not agree with that more.
  • They admit that far more research needs to be done to understand ME/CFS.
  • They admit that ME/CFS is a real and physical disease.
  • They recommend that the Department of Health and Human Services should develop new, more accurate ways of diagnosing ME/CFS.

For about half a second, I was happy when I heard the IOM recommended changing the name of “Chronic Fatigue Syndrome” to what they’ve proposed: “Systemic Exertion Intolerance Disease.”  Mostly I was happy because I saw the word “disease” instead of “syndrome.”  And I will, begrudgingly, admit that their SEID is ever-so-slightly better than CFS.  If CFS is a kick in the balls, SEID is a kidney punch.  Neither is good, but I suppose if i were given the choice between the two (and I were male) I might choose the kidney punch.

Inside Looking Out © Sarah Allegra - model: Katie Johnson

Inside Looking Out © Sarah Allegra – model: Katie Johnson

Here’s what’s wrong with SEID.

The IOM complained that the name “Chronic Fatigue Syndrome” is demeaning and only focuses on one symptom.  Those are both true.  They also decided that “myalgic encephalomyalitis” was unsuitable because it also only focused on one symptom.  That is not true.  “Myalgic encephalomyalitis” literally means “muscle pain and inflammation of the brain.”  You have two symptoms being named, both of which are hallmarks of the disease and which have tons and tons of scientific proof backing them up, as well as patients’ own experiences aligning with them.  Additionally, more documentation can be found in the UK documentary Voices From The Shadows where multiple autopsies of patients who died from ME/CFS all showed inflammation in the same area of their brains.  Despite mountains of evidence to the contrary, the IOM decided that while nearly every person diagnosed with ME/CFS complains of chronic pain, that was not a general symptom for ME/CFS patients, and thus should be excluded from the name.

I know a lot of people with ME/CFS.  We are a close community as this disease ravages us in ways only other sufferers can truly understand.  We form deep online friendships since we are so often unable to interact with people in meaningful ways in the real world.  We rely on each other for advice about treatments and medications, as we almost always know more about our disease than our doctors do.  None of my doctors had ever even heard the name “myalgic encephalomyelitis” until I said it to them.  We are our own biggest support system.  And I do not know a single person with ME/CFS who does not experience chronic pain.  Personally, I have not had a pain-free day in over seven years.  To have healthy outsiders negate the 2,555+ days of pain I’ve experienced and say it’s not an important symptom is beyond a slap in the face.

A Fading Girl © Sarah Allegra - model: Brooke Shaden

A Fading Girl © Sarah Allegra – model: Brooke Shaden

But even those slights aside, “Systemic Exertion Intolerance Disease” fails their own test by simply naming only one of our other common symptoms; exertion intolerance.

Exertion intolerance is a very real thing for ME/CFS people.  And it doesn’t have to be physical exertion; mental or emotional exertions can leave us just as sick for days, or weeks, sometimes months… or forever, as physical ones.  For years and years, doctors have been advising us to exercise our disease away.  And for many illnesses, exercise does help.  But with ME/CFS, exercise can be absolutely deadly.  Push yourself too hard and you can make yourself house-bound or bed-bound… sometimes for the rest of your life.

We walk a knife’s edge every day, trying to judge what we can and cannot do.  It’s generally considered a fairly good idea within the ME/CFS community to try and remain as active as you can without overdoing it and making yourself worse.  It’s like playing a very stupid game of blackjack with your energy each day.  You don’t want to lose any ability to be active that you do have, but even hitting 21.01 could mean a week of being stuck in bed.  It’s a serious and deadly game we are forced to play every single day.

So yes, exertion intolerance is a very real and dire threat, but even given that, we’re still left with a name which merely cites one of our symptoms again.  And as I said, SEID is ever-so-slightly better than CFS simply because of trading out the word “symptom” with “disease.”  Laymen hear “syndrome” and it doesn’t sound serious; replace it with “disease” and their view shifts.  I have serious doubts that busy doctors, who have no time to read a 304-page document, will hear anything but “exercise avoidance” in place of “exertion intolerance.”  After all, exercise is a cure-all!  There’s nothing it doesn’t help!  That’s the mantra they’ve been taught again and again and it will take very dramatic events to undo those decades of conditioning.

Vanity's Muder © Sarah Allegra - a self portrait after I started experiencing ME-related hair loss

Vanity’s Muder © Sarah Allegra – a self portrait I created after starting to experience ME-related hair loss

Almost every ME/CFS sufferer I know has had at least one doctor who refused to believe there was anything physically wrong with them.  I had one of those too.  Mine decided I was simply depressed and anxious.  In a way, she was right; I was getting very depressed because I felt terrible every single day and nothing was helping it, and I was becoming increasingly anxious about my appointments with her because I was sensing she didn’t believe me.  I have experienced clinical depression.  There was one solid month in a very dark period of my life where I had to rationalize not killing myself every single day.  I know what depression looks and feels like.  It is a completely different beast than ME/CFS.

It’s like saying sharks and bears are the same threat.  Well, no, one lives in the water and generally attacks you if he mistakes you for a seal; the other lives in the woods and might attack you if she thinks you’re a threat to her cubs…  You get the picture.  Both can kill you, but trying to issue a blanket statement that they are both the same threat, coming from the same place, using the same methods to avoid them would be absurd.

The Blue Ribbon © Sarah Allegra - Model: Katie Johnson

The Blue Ribbon © Sarah Allegra – Model: Katie Johnson

ME/CFS is not “just” depression.  I put “just” in quotes because I know how serious depression can be and I never want to be dismissive of it.  It kills too.  But they are completely separate entities.  There is a tendency for people who have ME/CFS to become depressed because they have ME/CFS, but that does not mean they are one and the same.  Almost anyone with a chronic, incurable illness is going to get depressed.  You never hear people accusing cancer patients that the cancer is all in their heads; they’re just depressed and if they went for a nice jog, everything would be fine!

And lest you think I am fear-mongering and making ME/CFS out to be more than it is, let me remind you of a quote by Dr. Nancy G. Klimas, who specializes in treating both HIV/AIDS patients along with ME/CFS patients.  In 2009, she was quoted with the following: “…But I hope you are not saying that C.F.S patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.  I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.”

The overwhelming majority of ME/CFS patients would have liked to have had our name officially changed to “myalgic encephalomyelitis.”  We made our preferences known loudly during the entire time the IOM worked.  ME is, after all, what most of the modern world calls it.  It was only because of one insidious man that the United States switched to “Chronic Fatigue Syndrome.”  And why was such a name invented?  To create a legal loophole where insurance companies would be able to deny sufferers coverage.  The schism between the United State’s naming of the disease and the rest of the world began with greed from insurance companies.  These are your US tax dollars at work.

And what’s even worse is that there is speculation that the IOM is intentionally confusing the issues around ME/CFS; making the definition unusably broad, ignoring patients’ wants and needs.  Once again, making sure we’re worse off than we were before they came along.

Breakable © Sarah Allegra - a self portrait

Breakable © Sarah Allegra – a self portrait

The second of the IOM’s tasks, coming up with a diagnostic criteria for ME/CFS, was also unnecessary.  Two excellent, specific and scientific definitions already exist (and are used by most of the modern world as well.)  It was loudly advocated by ME/CFS patients and specialists alike that the IOM adopt these guidelines.  In fact, 50 of the world’s leading ME/CFS experts sent letters asking that the IOM’s contract be canceled along with countless letters written and petitions signed by patients.

That brings up another salient point… who are these people chosen by the IOM for this heavy and delicate task, ripe with repercussions which will ripple through the decades?  They are 15 people, only seven of whom specialize in ME/CFS in any way.  Some are not even doctors.  How is this at all ok?  How was it allowed that a group of people who don’t have anything to do with the disease at hand would be asked to redefine it?

Let’s give them the benefit of doubt for a moment and assume they’ll really try and do a good job.  Who knows.  What did they come up with?  They decided that to be diagnosed with ME/CFS, you need only three of the following core symptoms:

  1. A substantial reduction or impairment in the ability to engage in pre-illness levels of activities that persists for more than six months and is accompanied by fatigue – which is often profound – of new or definite onset, not the result of ongoing excessive exertion and not substantially alleviated by rest.
  2. The worsening of patients’ symptoms after any type of exertion – such as physical, cognitive, or emotional stress – known as post-exertional malaise.
  3. Unrefreshing sleep.

And at least one of the two symptoms is also required:

  1. Cognitive impairment.
  2. The inability to remain upright with symptoms that improve when lying down – known as orthostatic intolerance.

Do you know how many diseases and conditions fall under this umbrella?  It’s so broad, it’s utterly useless.  You wouldn’t even need to have a physical ailment to qualify for ME/CFS.  This is a big deal.  If this new standard is adopted, this is the criteria that will be used to find patients to test new drugs and treatments.  Can you imagine how murky and confusing the results will be if your patients could potentially have almost any disease?  Answers will never be found under these guidelines.

In Between Awake and Sleep © Sarah Allegra - a self portrait

In Between Awake and Sleep © Sarah Allegra – a self portrait

As people online have pointed out, SEID backwards spells DIES.  And it’s hard to feel like that isn’t exactly what the IOM, HHS and CDC want us to do.  We are an embarrassment to them because they don’t know what our disease is, what causes it or how to fix it… and, of course, a great deal of that confusion was created intentionally; a fact they’re desperate for us to forget.  They would rather sweep us under the rug, ignore us, talk over us.  And sadly, that is very easy for them to do.  With so many patients house- and bed-bound, it’s extremely difficult to show our numbers, organize protests, or object to our treatment in any meaningful ways.

But this is what they haven’t counted on.

When you are backed into a corner by illness, you can either crumple under it or develop a steel core in the deepest part of your soul to bear it.  Some days you may flip back and forth between the two, but ultimately, your will strengthens.  The stakes are personal to us and they are very high.  Though it might take the help of our caretakers or cost us a week of energy or send us back to bed for months, we will not be silenced again.  Shifty, snakey policy-makers may have the energy and money we don’t, but they do not have this core to draw on.

We will fight.  And we will win.

Silenced © Sarah Allegra - model: Travis Weinand

Silenced © Sarah Allegra – model: Travis Weinand

Are you pissed off?  Good.  We need you to be pissed off.  We need a public outcry so loud that it simply can’t be ignored.  And we need the healthy, compassionate people of the world to join us in demanding change.

Here are some things you can do:

Pass around the image above, Silenced, on your social media platforms.  Linking to this post would be helpful!  I am giving you permission to use the Silenced image to help get our message across!  Put it on Facebook, Twitter, Instagram, Tumblr, Pinterest… wherever you hangout online!  The more people who see it and become aware of the problem, the better!

Tweet to @TheIOM, @HHSgov and @CDCgov letting them know your displeasure in the proposed name change.  We DO have the power to stop this from becoming our reality!  Please use the hashtag #MENotSEID.  Not sure what to say?  Here are a couple examples you are free to use!

.  : ME/CFS research will be useless with the name SEID.

.  : SEID is still only naming a single symptom.

.  : ME/CFS patients will not be helped by SEID, it will only hurt us further.

.  : MECFS patients reject SEID and demand the name ME!

.  : Why are we spending a million dollars redefining and renaming what doesn’t need it?

.  : ME/CFS patients WILL NOT be bullied into silence over the proposed name SEID.

Additionally, you can:

Submit answers to a survey about what you think of the IOM’s proposed name change.

Sign this petition to stop the HHS-IOM contract and accept the CCC [Canadian Consensus Criteria] definition of M.E.

Or this petition!

Every voice counts!

 

Would you also like to support me in my quest to continue making art in spite of ME’s constant presence in my life?  How lovely of you!  🙂  I have added the new Silenced image to my RedBubble shop as well as my Etsy store; you can get it (or most other images) as museum-quality prints, tshirt, stickers, covers for your phones and i-Devices, travel mugs, blank greeting cards, even pillows and tote bags!  Every purchase goes toward helping me continue to produce new art as well as spend the countless hours necessary to delve into issues like this post.  And every single purchase is hugely appreciated!

We Rise Again © Sarah Allegra - a self portrait

We Rise Again © Sarah Allegra – a self portrait

Images are from my Enchanted Sleep series, which portrays living with ME/CFS/fibro.**

Istagrammers!  Here is a square version of the image, already Instagram-friendly 🙂

Silenced © Sarah Allegra - model: Travis Weinand

Silenced © Sarah Allegra – model: Travis Weinand

*When you dig into it, no, ME and CFS are not describing the same disease, mainly because the current US diagnostic guidelines for CFS are so sloppy and wide-open.  Further information on the subject can be found here, along with countless other places online.  Since there is a lot to talk about in this post as is, for brevity’s sake, I’m using the term people are most familiar with, ME/CFS, though the definition I have in mind is the CCC and ICC definition of ME.

**Fibromyalgia is, for the most part, also used interchangeably with ME/CFS in the US.  This is not entirely accurate, much like ME and CFS are not really the same thing, but for the sake this post, when I talk about ME or CFS, I am also talking about fibro.

 

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I may have mentioned before that I often have the TV on while I’m editing.  It has to be the right kind of show; something I can mostly listen to and just glance at periodically, it has to be interesting without being too engaging.  I end up watching a lot of documentaries, nature, science and history shows.  I also catch a lot of shows about the paranormal; I love stretching my imagination entertaining the ideas they present whether or not I think they might actually be true.  Often these shows have a benefit beyond simply enhancing my editing time; I learn new things, I expose myself to new ideas.  And sometimes I learn about problems in the world and I want to do something to try and help fix whatever is wrong.

Details from today's images

Details from today’s images

I’ve known for some time about the terrible future the wild lions in Africa are facing.  Poaching and habitat loss have killed off about 80% of their population in the last 20 years.  Sadly, the traits humans find most beautiful about lions are also the things that make them genetically stronger, which means not only are people driving lions to the edge of extinction, but the lions which are left are weaker and less able to survive.

There are approximately 20,000 wild lions left in the world now.  This is a drop in the bucket from 450,000 about 30 years ago.  If nothing changes, lions could become extinct within the next decade.

Can you imagine a world without lions?  The fragile ecosystem which would be thrown into chaos by their loss?  A world where children would grow up never seeing the majestic animals?  Where lions would seem as unreal to them as dinosaurs?  Telling your child that yes, these animals all once roamed the land, but now they are gone forever.

And it is because of humans that lions are teetering on the edge of this chasm.

If people are the cause of their destruction, we have a moral obligation to try and save them.  As my close, personal friend Rustin Cohle would say, we have a debt to pay.

As is my usual first course of action, I decided to address the problem with photography.  As I began building the concept in my head, I realized it would fit in well with DreamWorld.  While most of the land is beautiful and verdant, there are less lush areas and also touches of actual evil.

It was at this time that I came across Travis Weinand.  Travis is a multi-talented transplant from Philadelphia; he models, of course, acts, sings and plays bass in his really great heavy metal band Burden (seriously, I genuinely like their music!  Give it a listen!) illustrates and paints beautiful images, he’s been a tattoo artist and has been competing in the last several seasons of American Ninja Warrior.  Travis has promised to show me how to make my voice sound evil like I’m singing in a metal band and I’m going to show him how to levitate… in a photo at least 🙂  ANW isn’t something I’d seen much of; I quickly discovered it’s really physically demanding; here’s a short video from Travis to impress your socks off:

Travis’s physical strength, size (he’s 6′ 5″, so anybody seeing us walking together must have gotten a chuckle since I am all of 4′ 11″) and blond hair made him feel like a perfect lion-man.  I decided to make a mane headdress, something more symbolic of a mane rather than something that was trying to perfectly replicate what a lion’s mane looked like.  I had some really lovely blue and brown metallic yarn that I’d gotten on sale and wasn’t sure what I was going to do with, which seemed like a good place to start.  Since Travis has brilliantly blue eyes, I decided to work some blue into the mane; this was a metaphoric mane, I decided I could bend the color rules a little.

Various amounts of blue yarn and other colors braided together

Various amounts of blue yarn and other colors braided together

It happened that, of course, I got sick again while I was getting ready for the shoot – I think I’ve told you guys this but apparently my body has decided that it’s going to have a cold every 2-3 weeks until I have sinus surgery to stop its evil plan.  My surgery is November 4th (wish me luck!) and I am so eager to have it done with.  I’m really looking forward to a time when I can go more than a few weeks without getting sick on top of already being chronically sick.

That has, of course, been very draining, but knitting is one of those activities that you can do (if you’re making up your own pattern anyway) without engaging very much of your brain.  It’s also quite soothing, the repetitive motions over and over again, and once I got through the really feverish first couple days of the cold it was a relief to have something I could work on and feel a little bit productive about.  So a lot of braiding and arm-knitting happened while I was well enough to be bored but not well enough to do much of anything else.  Above, you see the braided loops I made with varying amounts of a brighter blue yarn worked into the rest.

The under-mane

The under-mane, loops attached

Lion’s manes are typically darker close to the skin with the hair lightening as it gets longer.  I made the “under-mane” from the original blue and brown yard that had started the whole idea, arm-knitting a general idea of the shape I wanted.  I hand-tacked some of the braided pieces around the bottom to hang down decoratively.

The... main... mane

The… main… mane

The, uh, main mane was also arm-knitted, into a similar shape, but fuller and more expanded toward the bottom.  I love this brand of yarn.  I want to arm-knit everything right now.  It has such a beautifully organic look when it’s finished, even if you’re making it up as you go!

Ruffs

Ruffs

Lion manes are often majestically full right over the center of their chests, so I quickly knit up a couple filler-pieces to give extra fullness to Travis’ mane.  You’ll notice that one is a little bigger than the other.  The official reason is because it’s natural for there to be a slight asymmetry to any kind of animal markings or fur.  The real reason is because I’d run out of yarn and didn’t have money to go buy another skein.  Plus, I didn’t think it would really show in the final images, so I didn’t worry about it too much.

The beginning of a mock-up

The beginning of a mock-up

I’m including this photo because for one, Aly gave me the unicorn-on-a-stick toy so I wanted her to see it is being used and loved, and also because it just really looks ridiculous 🙂  I needed to build up a shape that was going to let me see how the mane would actually be hanging and my regular foam head wouldn’t nearly do the job.  Not only because it’s far too short and becomes unstable if I pile it high on a lot of other objects (I know this from experience) but I needed the mane to spread out so I could really see it.  So this is the unicorn-on-a-stick sandwiched between the end of my bed and the blue dresser at the end of my bed, wrapped up with a very fluffy pink bathrobe which is so long that I use it as a blanket.  In the next photo you’ll see another bathrobe draped over the unicorn’s head to give it more a human-head shape.  There’s a method to all the madness.

And if anyone is wondering, the cardboard box is there for the cats (mostly Maynard) to lay in and the big pile in the background is my Costume/Fabric/Backdrop Pile.  I’m working on a better way to store it all.  There are only so many hours in a day.

First draping

First draping

I’d been planning to braid the mane into Travis’ actual hair, which is cut in a very cool undercut style which makes me think of Jimmy from Boardwalk Empire.  I seem to be leaving a hole in the middle of the mane; that’s on purpose to allow for Travis’ hair.  You can see the under-mane some and I’d started adding extra braided bits which just hung down.

Finsihed!

Finished!

And here it is all done!  Braided loops, hanging braids, front ruffs; it’s all there.  It’s probably hard to picture how it will eventually look, but don’t worry, you’ll see very soon 🙂

I had come across some boulders in one of my walks (my doctor’s suggestion of a safe exercise for me right now, which makes me sad when I think about all the yoga, Pilates and ballet I used to do.  I like to do the walks in nature since that makes it much more interesting and enjoyable).

The plants around it, which had been brilliantly green in spring were now brown and dying, so it felt like the perfect setting for my Last Lion, as I am calling this new DreamWorld character.

I imagine that the Last Lion had a vast kingdom once where his people thrived.  During the Yellow King’s grab for power, his people and land suffered greatly when they stood up against the Yellow King.  They are fighters.  And though the Yellow King is now banished, he did real harm to the land and its people before he left.

They are fighters.  They have been greatly wounded and they could vanish forever and be a mere memory in DreamWorld as the lions could be in our world… but I think they’ll prevail.  They have not been beaten yet.

And if you would like to help our world’s lions, look into the Big Cat Initiative.  They have a really solid plan of how to get the lions back on their feet while still keeping the farmers and cattle in the region safe, promoting harmony between them.  Another very quick, simple yet effective way is to add your name to any or all of the petitions below, all working toward protecting lions from extinction:

http://www.change.org/p/save-african-lions-from-extinction-by-listing-them-as-an-endangered-species

http://www.ifaw.org/united-states/node/92726/

http://www.thepetitionsite.com/1/save-lions-from-extinction/

Harmony between man and nature.  It’s such a common theme in DreamWorld, and one we need more of in this world.

Please enjoy the Last Lion images below and consider signing a couple petitions and joining the Big Cat Initiative!

Lost Pride

Lost Pride © Sarah Allegra

Lost Pride detail © Sarah Allegra

Lost Pride detail © Sarah Allegra

Lost Pride detail © Sarah Allegra

Lost Pride detail © Sarah Allegra

 

Dying Trophies © Sarah Allegra

Dying Trophies © Sarah Allegra

 

Dying Trophies detail © Sarah Allegra

Dying Trophies detail © Sarah Allegra

 

You can look forward to seeing more of Travis soon!  I’m very excited about using his incredible physicality strategically in images; he can do things for real which I’d normally have to rely on Photoshop for.  Should be fun!  Thanks, Travis!  And thanks to all my readers 🙂

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