Other peoples' revolutions

For the last week I've watched friends on Facebook decry the brutality of the crackdown on protesters in Iran. "Contact the UN about what's going on in Iran!!! (and it's always with multiple exclamation marks)" Because that will accomplish...what exactly? And on Twitter, half my friends have tinted their avatars green to show support for the Iranian supporters of Mir Hossein Mosavi, whose green face is often seen waving above the heads of fashionably-dressed Iranian youth like a cartoon character about to throw up.

To be honest, the whole thing makes me feel rather nauseous too.

Now I have a great deal of respect for anybody who is willing to stand up and risk being shot for what he or she believes in, regardless of the cause. It takes some balls – or gall, depending on your gender – to brave live ammunition.

What's loathsome is the way Americans respond to other peoples' revolutions. We are (for some reason) shocked and disturbed that they're using live ammunition, not realizing that this is how revolutions work. People march, tear gas is released, some get shot, but hopefully (though unfortunately less often than not) things change for the better.

We tint our Twitter avatars green because the cool kids twittering in Iran are waving green banners, not knowing that green is the color of Islam – the same color that gets waved and worn at Hamas rallies. Nor has anybody bothered to read anything about Mir Hossein Mousavi, assuming he's Nelson Mandela or Robert F. Kennedy, rather than a man who was involved in the Marine barracks bombing in Beirut in 1982, was known for crushing dissent when he was the Iranian prime minister during the 1980s, and ran on a platform of returning to the teachings of Khomeini and catering to business interests in addition to moderating a few of Iran's repressive social rules. Ahmadinejad may crush dissent too, but at least he redistributed oil money to the poor -- the ones cleaning up after the "Gucci crowd" when they've finished protesting for the day.

And, of course, the support provided to the kids in Iran is remarkably selective. There is no twittering about the Palestinian kids in Bil'in who every week utilize the teachings of Ghandi and King and stand up to and get shot by live ammunition because their homes are being stolen, their education is cut off, and their youth is often spent in jail because they had the audacity to be born in a land someone else wants. There is no indignation over the fact that the gas flowing into our cars comes at the expense of some other Shi'ite kids - but in Saudi Arabia - who can't even practice their religion and nor dream of protesting because they would be immediately shot or worse.

But the thing about Americans and other peoples' revolutions that really makes me sick is that it's like we live vicariously through them rather than get off our asses and march in the streets ourselves. At this very moment a handful of rich white guys on the Senate Finance Committee are about to hand the insurance companies – the very entities that keep us from the getting the health care we need – a trillion dollars worth of our taxes without even giving us the choice to buy cheaper, better insurance from the government. And Americans aren't going to do a damn thing about it.

Nor is the "cool" American president young people voted for because all their friends on MySpace said they just had to vote for him. Indeed about the only campaign promise he is keeping is escalating the war next door to Iran in Afghanistan and its neighbor Pakistan. He sat by and let Congress vote down a bill to help people being kicked out of their homes. True, he is closing Guantanamo Bay, but only by indefinitely holding people elsewhere for crimes they might commit. And now with health insurance reform (and that's what it is, not health care reform), the only thing he's told Congress he's firm about is that he wants a bill on his desk by October.

In the meantime, 18,000 people a year are dying for lack of health care. Thousands more are going bankrupt despite having health insurance. Hundreds of thousands of people are losing their homes (not to mention another hundred thousand were homeless before the foreclosure crisis ever started). Millions are out of work. Millions -- who are disproportionately African-American – are in jail in our supposedly free, democratic society (more than China, Russia, and Iran combined). Millions are living in third-world conditions inside our very borders (and again are disproportionately African-American). Over a hundred thousand bridges are "structurally deficient or functionally obsolete." Our educational system is churning out students who cannot write, calculate, or think critically. And, of course, the planet is burning up, the weather is changing, and the one major city already drowned as a possible result has been largely forgotten.

If you're fine with all that, then by all means, keep updating your Facebook page with pics from that party last Saturday. Keep reporting what you had for breakfast on Twitter. Keep watching cat videos on YouTube and noting your occasional outrage on Reddit.

But if you want access to decent, affordable health care, might I suggest you get off your ass and into the streets because Washington is not going to change just because you elected that cool guy you secretly wish was your dad/lover who promised it. Washington is only going to change by the people taking seriously the job that the Founding Fathers gave us in the first place: government. "We the people..." – remember? We are the government, not Pfizer, Lockheed Martin, Citibank, Blue Cross Blue Shield, or Clear Channel. But they are the ones running this country, not you or me. And they aren't going to give up the power they've got until we rip it out of their cold, dead hands.

So quit prattling on about a revolution ten time zones away without doing something here. Quit delegating the job of changing the world to somebody else. The coolest revolution of all is the one you twitter about from the streets, not your living room.

Read the full post

Instability

My ass has been so sore the last several days that it hurts to sit much, even on my bed (aka The World's Softest Bed), hence the paucity of posting. I've had a couple of posts I've wanted to write for weeks now rattling around in my brain, but between some nasty crashes and the events described below, blogging has dropped way down the priority list.

On May 29th, I woke up feeling as if someone had driven a railroad spike through the base of my spine. I couldn't walk, sit, stand, or turn over in bed without excruciating pain. A week later at 6:30pm, it abruptly stopped, allowing me to sit again and walk a bit (aided by a cane...or two), though it still hurts quite a lot to stand or turn over in bed.

This has happened once before, also right before my period and also during a month when I'd gotten an extra dose of estrogen (that time I had gone off the progesterone-only pill but this time God only knows why I got the extra dose of hormones). However unlike last time, I had a good idea this time around what was causing the pain because my physical therapist had recently identified weakness in my right sacroiliac joint (where the sacrum at the base of the spine attaches to the pelvis) and given me exercises to strengthen the muscles surrounding the area (which I have been doing religiously, especially as I can do them laying in bed). That extra batch of estrogen made my ligaments even more lax than they already are, leaving my sacroiliac joint even more unstable.

In normal human beings, this is a very, very stable joint with super thick, strong ligaments to keep it in place. In me, it slips and slides around like a kid on wet plastic in the hot summer sun. It's not my only joint that does this. I've had two surgeries to correct unstable joints (right ankle and knee). My fingers, elbows, hips -- all pop in and out of place. And since junior high I haven't been able throw a ball over hand using either arm without the shoulder coming completely out of joint and then popping back in.

And yes, it feels just as icky as it sounds.

After talking with my physical therapist, she's recommending I start using a walker until it heals up (though my insurance company at the moment won't approve said walker). I also have a brace to help it stay in place, but the brace presses down on an already pinched lateral femoral cutaneous nerve in my right thigh.

Sigh. I'm a real piece of work alright.

But -- at least today! -- I have a bit more energy. Fingers crossed, I'll get to those posts that have been floating around in my head and bring some stability to my blogging.

Read the full post

Come to bed with ME

(I love tag line, but I wish the poster were a bit more kinky)

Today is International Neuroendocrineimmune Disorders Awareness Day -- including ME/CFS -- during a week dedicated to ME/CFS Awareness. I've commemorated the day in years past by listing what I've lost due to this illness, as well as what I've gained from the experience of illness. This year I thought I'd describe what it's like to have ME/CFS, in addition to the example of an X-Files phenomena I used a few years back.

Here in bed with ME/CFS, you feel like you have the flu. Your throat hurts. Your joints burn. Your heart beats like mad. You feel chilled, profoundly weak, slightly nauseous, light-headed, mushy-brained, and just...icky. I wish I knew a more specific and/or scientific word to replace icky. It's almost like your blood has been replaced with poison. You feel dreadful. Vile. Horrible. Nasty.

And on top of that...

You've got a hangover. Everything smells so strong. The lights are so bright. Loud noise grates on your last nerve, as well as that throbbing in your head just behind your eyes and at the base of your skull. And you might still be a bit tipsy because your spatial perception is off (if I try to do that test where you close your eyes and touch your finger to your nose, I hit my cheek or my eye), not to mention you can't walk a straight line. Sometimes the room just spins.

And on top of that...

Someone is giving you low-grade electric shock torture and doing voodoo on you with a knitting needle. Most of the time it's a constant burning sensation throughout your whole body punctuated by arbitrary 5-30 second jolts of sharp sharp pain in completely random places -- your ear, your belly, your right arm, your left heel. (The burning sensation and the arbitrary jolts get markedly worse whenever I have an acute infection, especially if I have a fever.) And you have this weird buzzing sensation in random places too. As if a bumblebee or hummingbird were just beneath your skin. It doesn't hurt, but it's...weird.

And on top of that...

If you also have fibromyalgia (which up to 70% of ME/CFS patients do), you feel like you just had your first day on a chain gang breaking rocks in a quarry. Or that you went to the gym yesterday and worked out harder than you ever have in your entire life by far. Every muscle in your body burns and aches and is so stiff you can hardly move. You want to curl up in bed and sleep, but the kicker is you can't. You just lay there, though eventually you get up just to move a bit because your muscles have petrified and the stiffness is agonizing. You wish you could go to bed at a normal time and get up at a normal time, but your body runs on its own clock that, unfortunately, is not during normal business hours.

All of that. All the time. That's what it feels like in this bed. That's what it's like to have ME/CFS.

One million Americans have it -- more than have MS or breast cancer -- but it's among the bottom in diseases funded by the National Institutes for Health. The main reason for that is because most people don't take a disease named "chronic fatigue syndrome" seriously. However, as you can see, it's not just being tired. It's as/or more debilitating than congestive heart disease, multiple sclerosis, lupus, or end-stage renal disease.

So what can you do?

1. Donate money to fund research into what's causing this disease and how to treat it. Organizations include:

• CFIDS Association of America - great advocates who have funded great research
• Whittemore-Peterson Institute - first clinic devoted exclusively to research and treatment
• IASCFSME - the main professional organization of ME/CFS clinicians and researchers
  
• ME Research UK - a UK organization doing superb advocacy and research
• CFS Research Foundation - UK group doing cutting-edge genetic research

2. Let your elected officials know you want them to fund more biomedical research into the causes and treatments of ME/CFS. The CFIDS Association has a great "Virtual Lobby Day" page to make this as easy as possible.

Read the full post

CDC has lost its mojo -- if it ever had it

The swine flu is not the only thing making life uncomfortable for the Centers for Disease Control at the moment. A week ago many of us in the ME/CFS community were abruptly given notice that the CDC wanted "stakeholder" input on their new 5-year strategic research plan per the suggestion of a peer-review study last November.

CDC is seeking input from interested parties on issues that CDC will consider as it develops this research plan...The objective of the five-year strategic plan is to conduct public health research leading to the control and prevention of medically unexplained chronically fatiguing illnesses, in particular CFS.

My first input would be to say that CFS is not merely a "medically unexplained chronically fatiguing illness" and if the CDC was reading current research by anybody but themselves they would know that. But I digress. The catch to this input was that one, "stakeholders" had about a week to prepare their "input" and two, CDC was only asking for input on five specific areas:

1. Studies of Defined Populations
2. Provider-based Patient Registries
3. In-hospital Clinical Studies
4. Laboratory Studies
5. Provider and Public Educational Intervention Research

Among the ways that we "stakeholders" could provide input were the traditional mail and/or email, as well as a fancy, technologically-advanced telephone conference on the afternoon of April 27th in which "stakeholders" could call in and provide comments. And boy oh boy did ME/CFS patients, researchers, and advocates call in!

The CFIDS Association posted remarks from among their comments on their Facebook page (also posted at Co-Cure - hopefully one of those links will work if you're not on FB or CC) and here are some highlights:

Katrina Berne, Board of Directors of The CFIDS Association:

The history of the CDC in regard to CFS is dismal, beginning with assigning a name both trivializing and inaccurate, an inadequate and inaccurate case definition, misappropriation of funds and poor-quality research, in terms of both the focus of its studies and its methodology. The CDC has not had a meaningful or significant impact on our understanding of the illness or how to treat it...

...It is my understanding that no one in the CDC attended the March, 2009 symposium presented by the International Association for ME/CFS in Reno, Nevada. This is a strong indicator of the CDC’s lack of desire to keep abreast of recent research developments, hardly a good sign of interest in moving forward by building on existing knowledge. (This was a truly appalling lack of professionalism on the part of CDC - M).

...Efforts to date have merely compounded the loud and clear message that the CDC does not take CFS seriously and has no organized approach to investigating this complex and devastating disorder.

From Jennie Spotila, Chairman of the Board of Directors for the CFIDS Association:

...Your "Draft Strategic Research Plan General Outline" was made available for stakeholder review only five days ago. This outline is so devoid of specifics that the only input I can offer is to point out what is missing...

...Your general outline could have been written two years ago, or ten. "Refine understanding of the etiologic pathways," "improve clinical management," "move CFS into the mainstream.”" Yes, yes, of course. There is nothing new in this list of objectives. There is no specificity, no measurable commitments, and no accountability. There is no acknowledgement of the many problems in the CFS program, and no plan to fix them...

Kim McCleary, President and CEO of CFIDS Association:

...But the CFS research group has lost its mojo.The CDC’s CFS research group receives half of the (meager amount of) money that the U.S. spends on CFS. Half. CDC has provided extensive financial information on its CFS spending between FY2005-2008, during which time expenditures totaled about $23 million. Since 2000, CDC has spent about $71 million on CFS and it has published 115 peer-reviewed articles in the same time. I doubt most academics could survive with that record...

...Goal 2 of the research plan, clearly an education-related activity, appears much better suited to either the National Center for Health Marketing or the National Center for Chronic Disease Prevention and Health Promotion.

...This group named the “Chronic Viral Diseases Branch” is currently doing little if any research on viral (or other biological triggers) of CFS...Instead, the group is focused on early life psychological stressors, a risk factor in most chronic illness, and proposes to study whether the economic crisis will result in a higher rate of CFS among respondents in the next phase of the Georgia surveillance study...So much opportunity has been lost to study the rates of CFS occurring in the wake of outbreaks of West Nile Virus, avian flu and now swine flu, and other acute infections or chronic exposures like toxins and molds. There is great opportunity cost to the choices that branch leadership has already made in an apparent vacuum within its own center...

That figure of $71 million dollars blows my mind. They've spent $71 million dollars in the last nine years and we don't even have a fucking biomarker much less decent treatment?! What the hell have they been doing with All. That. Money.?

I did not call in. I've spent the five days from the time I got the email to the day of the teleconference wondering what on earth I could say that would respond specifically to their five criteria. But Jennie Spotilla articulated what I haven't been able to, namely, that the five criteria were irrelevant and what needed to be addressed was what was missing from their list of priorities. Of course, part of the insidiousness of this disease, at least in my case, is that it slows the time it takes for me to process information substantially. The short-term memory problems and inability to concentrate don't help.

But members of the CFIDS Association were not the only "stakeholders" who phoned in, as this wonderful summary from Hillary Johnson, who wrote the book, Osler's Web, chronicling the history of ME/CFS, so poignantly details.

As it turned out, the all-afternoon call-in fest was remarkable in myriad ways. I hadn’t expected to be so profoundly affected by it.

In my long memory, it was the first time I have seen agency staff leave themselves quite so vulnerable. There was no filter between government staff and the public, some members of whom arrived in person to participate in the four hour session in Auditorium B2 of the CDC’s Global Communications Center. One couple flew all the way from Texas to make their brief comments, for instance; the wife, ill, the husband, healthy.

I cannot possibly do justice to her review so just go, go read. And grab a tissue on your way over because you'll need it.

In another plug for Twitter, Marly Silverman of P.A.N.D.O.R.A tweeted the conference so that those of us who were, say, not awake for the conference (like me) or otherwise engaged could read her real-time description of what was going on. You can go to her Twitter profile and read her tweets.

I don't know if the serious verbal lashing the CDC received on Monday will do anything to change its approach to ME/CFS. And the passion unleashed in the teleconference would be great to also unleash upon the National Institute for Health where the big research bucks are but CFS is among in the five least-funded diseases. But just maybe this will be a chance for ME/CFS patients (myself included) to push through the apathy that has befallen our community in recent years and fight for the research and treatment we so desperately need.

Two things you can do with little effort:

• Sign Tom Kindlon's petition asking the CDC to dump its ridiculous "Emperical Definition." The only tiny bit of criticism I have with regard to the petition is that I would like such a petition to ask specifically that the Canadian Consensus Document replace the fairly universally despised Emerical Definition. But dumping the ED is imparitive as it's a contagion that could potentially infect more ME/CFS research. Think of it as the research equivelent of the swine flu...
  

• Sign up for the Blue Ribbon campaign to raise awareness of ME/CFS, particularly on May 12, ME/CFS Awareness Day.

UPDATE: I forgot to add a letter that Craig Maupin sent to the CDC with his assessment of their CFS program, along with detailed suggestions for improvement. And patient and advocate Mary Schweitzer, as always, gave her articulate and candid appraisal of CDC policy on ME/CFS. There are a handful of other reviews and letters floating around the interwebs as well. The listserve at Co-Cure is a great place to read them all.

Read the full post

Online socializing

The Internet is great for those of us who are housebound and if you're starting to feel like a prisoner about to go crazy from spending months in solitary confinement, here are some options to connect you to other people.

Most of you have probably heard of Facebook or MySpace (I'm on Facebook and have joined a number of great ME/CFS groups there), but what you may not know is that various groups of people have created Facebook-like sites around their specific topic of interest, including ME/CFS. Dan Moricoli created the CFSKnowledgecenter where you can connect with other ME/CFS patients. Since joining back in December, I've been getting to know people not just throughout the world but in my own back yard as well.

ProHealth (formerly known as ImmuneSupport.com) has a super active bulletin board/forum at where you can ask questions, connect with other people, and even just vent from time to time. They also have chatrooms, but I've found that nobody really uses them much, except the fibromyalgia chatroom, which tends to be a bit cliquey albeit a very friendly one.

And then there's Twitter. I've already come across a few of you on Twitter, but just wanted to let the rest of you know you can follow me at "behindasurface"not to mention I'd love to follow you. I've been twittering for awhile with a different group of friends and what I've loved about it is that you can hang out with friends throughout the day without really expending a lot of energy. It's sort of like a cross between hanging out in a chatroom and blogging, but without the effort that both of those require.

There are also two "twibes" or groups for ME/CFS on Twitter: one which I founded last week when there were no ME/CFS twibes and one that was founded since then and now has a few more members than mine.

It's not the same as hanging out with people in the flesh, but it's definitely helped me feel far less isolated.

Read the full post

No mercy in Sussex

Very disappointed to see in The Times that Kay Gilderdale has been charged with attempted murder as a result of Lynn's death. Please keep her in your thoughts and prayers.

Update: The night I posted this, I joined a group on Facebook called "Prosecuting Kay Gilderdale is NOT in the PUBLIC interest". I was the 12th person to join. Today there are 267 members, which I think is very cool.

Read the full post

Why we can't exercise

Best presentation I've ever seen on why we patients with ME/CFS get sick and how to treat it with Energy Conservation Therapy and activity management.

This is from the group at the University of the Pacific that I told you about in this post who found that we have problems with energy metabolism, specifically with how our cells use oxygen. Long story short: aerobic energy use is bad, anaerobic energy use is good. Basically you don't want to do something that exceeds your maximum heart rate for more than 30 seconds. I need to watch the video again to figure out how to figure that out.

I highly recommend spending the 35 minutes it takes to watch this video.

Read the full post

"Revelation in ordinary life"

The purpose of all rules of piety is to extend revelation into ordinary life. They are survival tactics that help us withstand tedium, our disappointed expectations that something dramatic will happen—the sky open, a pillar of fire light our way—if we do this and that...

From "Cantillations" by Emily Warn

While the quote above is from a prose poem at Narrative magazine, I thought it was a good explanation of why I cherish religious ritual so much. And as it's the beginning of Holy Week, when revelation -- or at least the rules of piety -- are most likely to extend themselves into ordinary life, it seemed like a nice bit to share.

I keep intending to blog once a week but the reality is more like once or twice a month. Thanks for those of you who keep stopping in. I'm still sleeping 12-15 hours a day, which continues to frustrate me as the days whiz by.

Yet this evening during Mass I was thinking about the practice of Heyschasm in the Eastern Church, which, from the Greek word hesychazo, means "to keep still." It's a practice of saying the Jesus Prayer* over and over that, along with various positions and breathing patterns, will bring one to a greater understanding of the Divine. Perhaps even to experience the Light of God.

While I'm not sure I'm cut out to be a true hesychast, there does seem to be a Divine intention that I learn some amount of keeping still. I crashed badly last month after a combination of too many medical appointments and a weekly writing class next door (but it was only next door!). So the last two weeks I've found myself turning inward. Dumping the writing class. Cancelling any non-essential medical appointments. As I so often do in this never ending cycle of frustration, anger, and acceptance at and of the limitations illness imposes, I'm reaching the acceptance phase once again. If I must keep still, perhaps finding value in that is better than constantly trying to figure out how to do all the things I want to do in my sparse days.

In Sayings of the Desert Fathers is the following story: "Abba Arsenios was still living in the city, he prayed to God, asking to be shown the path to salvation, and in response a voice came to him from Heaven and said, “Arsenios, be solitary, be silent, be at rest. These are the roots of a life without sin."**

At the very least, they appear to be the roots of life with ME/CFS.

___________________

*The Jesus Prayer is simply "Lord Jesus Christ, Son of God, have mercy on me, a sinner."

**From "Hesychia: An Orthodox Opening to Esoteric Ecumenism" © 2007 James S. Cutsinger found here (note: PDF).

Read the full post

My chronic fatigue of being sick syndrome

There are some days that living with the full tragedy of being sick feels far too heavy to bear. Or, to put it more childishly, I hate being sick. I'm so tired of being sick. I'm so tired of this damn apartment. I'm so tired of watching my life pass by and never getting to live it. Yes, I have chronic fatigue alright – I'm chronically tired of having no life.

After I woke up Tuesday morning, for some reason that I can't remember now, I began thinking about my old life studying American Evangelicalism and the Israel/Palestine conflict. How I would have been the one talking about Christian Zionism on Bill Moyers had I not gotten ill. I imagined talking about the lack of political power among Christian Zionists and the history of Evangelicalism and as I did, I was suddenly aware of how much training I have. How much knowledge I have that I never get to use. How it's like fruit rotting on the trees. A whole crop shriveling up in the fields.

Lately I have really resented that I don't get to be apart of the world outside my apartment. I see it through the windows of the medical transportation cab each time I go to the doctor's office, through the windows of my mom's car when she takes me to the grocery store, and through the sliding glass door to the balcony next to my bed. People socializing in delis and coffeehouses. Or pushing their babies in strollers. Or bicycling home from work. Or walking in or out of Powells Books. Or working in their plots in the community garden. Or going to church. Or standing in a line snaking around the block for a concert.

Tuesday I thought about how even if, say, Ampligen were approved and somehow I actually got access to it (fat chance given that I'm on Medicaid) and was made better, I still wouldn't even get to travel much because I'd have to hang around so that once a week I could go to the hospital for an infusion. And, of course, I'll forever be on Coumadin and need to have my INR monitored.

I feel so angry and lately God has received the brunt of it – mostly, I suppose, because I don't know who else to be angry at and since he's omnipotent, at least he could ostensibly do something about this. And yes, I'm angry at the NIH and the CDC and all those assholes trying to say I can somehow gradually exercise my way out of this. I feel angry at the disease itself but it has no will or morality and hell, nobody even knows quite yet what the disease is.

Begrudgingly I said my Lenten prayer. Keep from me the spirit of indifference and discouragement, lust of power and idle chatter...Grant to me...a spirit of wholeness of being, humble-mindedness, patience, and love...

Patience.

Treatments are coming. And not just Ampligen but interferons and antivirals that wouldn't shackle me to a hospital.

Patience.

At least now I can read – not a lot, but more than I could a year and a half ago.

Patience.

There is more work to do. More writing to do. More books to read. More thinking to do.

Patience.

But how much of my life will be left when effective treatments finally do arrive?

Keep from me a spirit of discouragement...

Grant to me patience...

Read the full post

Banishing the stranger with the candy

Sometimes I get so used to feeling weak and exhausted that I forget it's not normal. Forget what "normal" even feels like. And often in those moments, when I'm getting out of the bathtub or making cookies, I start feeling a sort of pseudo-normal. As if my appearance and ability begin to fool even me. Do sick people make cookies or get in and out of a bathtub on their own? My mind begins to listen to those voices of doubt -- not totally believing, mind you -- just...listening. Like a child being lured away by the stranger with candy.

Maybe it really is all in my head. Maybe I really can get better with graded exercise therapy. I mean, I look so normal...

Of course, the sensible part of my brain quickly swoops in and chases away the strange man with the lollipops. The week before last I found the mere addition of attending to a bit of student loan paperwork almost too much extra to manage. Real normality is nowhere on the horizon.

Reading Cort Johnson's review of the new research out of the sports lab at the University of the Pacific regarding their test-retest protocol to diagnose and delineate the disability in ME/CFS was a profound reminder of how dangerous the stranger with the candy may well be. While I have not had my illness confirmed with this method, I do have plenty of past experience with the post-exertional malaise it analyzes. Including with a stationary bike, with which I used to warm up my arthritic knees. The last time I rode it for three minutes at moderate speed, I spent the rest of the day flat on my back in bed.

The development of the test-retest protocol -- or the Stevens Protocol, as it is officially known -- is exciting stuff. The technology is a staple of cardiology clinics across the world, so there's no long wait for it to trickle down to the average clinical setting like the RNase L enzyme test. And the research has been recreated thousands of times so that it is very unlikely another study will negate its findings. As Johnson states, "the news couldn’t be better for chronic fatigue syndrome (ME/CFS) patients."

The other big research that came out recently -- but which has not been widely reproduced -- is Sarah Myhill et. al.'s paper on ME/CFS and mitochondrial dysfunction in which the authors argue that an "ATP profile test" -- ATP being a coenzyme which is the "energy for all bodily functions," shows "biochemical lesions" which inhibit cellular respiration. There have been studies in the past looking at problems with mitochondria -- the part of the cell which translates chemicals like glucose into energy -- in ME/CFS patients, but this study appears to have the most significant results thus far. It's also promising because it can be diagnosed with a reasonably accessible test, unlike some of the other diagnostic test associated with ME/CFS (i.e. test of Natural Killer cells or T-cells or RNase L enzyme). And if these findings turn out to be true, it is yet more evidence of how dangerous programs like "graded exercise therapy" are.

This was a small study with only 71 patients and 53 healthy controls, so the test will need to be reproduced on a larger scale. And the test doesn't answer the chicken and egg question, namely, is the mitochondrial dysfunction the cause or the result of whatever disease process is playing out in the ME/CFS patient.

But just maybe the Stevens Protocol and/or the ATP profile test will finally banish the stranger with the candy along with his sweet doubts and false hopes.

Read the full post

Bullets and blocs

Some people have asked why the Palestinians in Gaza did not set about developing their own economy when the Israelis withdrew in 2005. Besides the fact that Gazans have had a difficult time being able to import or export anything and the Israel Defense Force has a tendency to bomb city blocks, there have also been problems like this:



Oh and north of the Gazan border, it looks like Tzipi Livni and Kadima -- the center party of the late Ariel Sharon -- is squeaking out a win, but probably not enough of a victory to avoid a coalition government with Likud and its leader Benyamin Netanyahu. Indeed, according to Haaretz,

By law, the president must consult with all the parties as to who they prefer as prime minister, and whoever is recommended by more Knesset members is given the nod. Hence if the religious and rightist parties all recommend Netanyahu, he would get first crack at forming a government.

In terms of blocs, all three TV exit polls predicted a rightist bloc of 63 or 64 seats out in the 120-strong Knesset, compared to 57 or 56 for the leftist bloc.

So does Netanyahu count as a "partner for peace?" Or Avigdor Lieberman, the guy Kadima (and Likud) is courting to help them get a majority of MK votes?

Read the full post

Why are we so different?

The week before last the Centers for Disease Control -- you know, that organization that's been so efficiently using your hard earned tax dollars for ME/CFS research -- came out with a study that "confirms childhood trauma as an important risk factor of CFS."

Well, okay, ME/CFS research has long recognized that any number of stressors, be it an infection, injury, or psychological trauma, trigger ME/CFS. So why is this study all that significant unless it's to underscore that patients with CFS are a bunch of crazy people?

In addition, the study has a number of methodological problems which Pamela Weintraub lays out rather neatly using quotes from an interview with author Hillary Johnson.

Some of the Weintraub/Johnson highlights include:

• The CDC recently watered down the definition of "Chronic Fatigue Syndrome" so that people with psychiatric conditions that cause fatigue are included among those who qualify for a diagnosis of CFS. As Johnson puts it, "they have essentially medicalized ‘fatigue,' defining ‘fatigue' as a specific disease."
  

• The study fails to cite a 2001 study that found the exact opposite of what this study supports. That paper, by noted ME/CFS researcher Lenny Jason, "revealed that significantly fewer individuals with CFS reported abuse as compared with those who did not." The CDC group should have at least said what it thought the Jason et. al. group did wrong and why it discovered such a markedly different result.
  

• It was nice to see someone argue this same point I have, namely, that researchers should not be comparing CFS patients to healthy controls, but rather to MS patients or cancer patients or patients with congestive heart failure or Parkinson's disease. Are child abuse victims more likely to get other diseases such as MS or congestive heart failure? The fact that ME/CFS is singled out as connected to child abuse demonstrates a bias that believes people with CFS specifically are suffering from a form of psychopathology (or neuro-endocrine-immune-psychopathology) while those with other similar conditions are sick simply because they got the wrong genes.

• Lastly, the empirical data that the CDC used for this study were questionnaires that individuals filled out themselves and morning salivary cortisol levels. There were no tests of other known ME/CFS physical abnormalities such as low natural killer cell levels or Rnase L enzyme activation. Basically we have "fatigued" and "unwell" people who report being abused as children and have low morning cortisol levels. Big shock there!
  

Now there were patients in this study who had CFS but who did not report being abused. And apparently they did not have the low morning cortisol levels, leaving the authors to conclude that this "hypocortisolism likely reflects a marker for the risk of developing CFS rather than being a sign of the syndrome itself." So does this mean that perhaps child abuse -- which, to be sure, literally damages the brain -- exacerbates CFS or causes a whole different disease in and of itself? And if it is possible to have CFS but not have been abused as a child and therefore not have the hypocortisolism, how do they conclude that these findings "lend further support for the hypothesis that CFS represents a disorder of adaptation that is promoted by early environmental insults, leading to failure to compensate in response to challenge?" Have they shown that the non-abused CFS patients have had early environmental insults that they have failed to compensate for?

And why child abuse? Why not study childhood infection, especially as ME/CFS patients are far more likely to develop the disease following an infection? Not to belabor the point -- or maybe indeed to belabor the point -- but it does exhibit a distinct psychiatric bias here.

And, of course, the elephant in the room is always always always that the condition is defined so broadly that we don't even know if the abused CFS patients even have the same disease as the non-abused CFS patients.

I will acknowledge that I was abused as a child, and I don't doubt that has had a distinct physiological impact on me. For the longest time after leaving home I struggled with my body going into that dizzying "fight or flight" response every time I had to deal with the least bit of conflict.

After undergoing a form of therapy known as Dilectical Behavioral Therapy in which I learned various mindfulness techniques, as well as developed habits such as daily meditation, I have been able to calm that "fight or flight" response. But I remain bedridden most of the day. At best, it has helped me with pain -- of both body and soul -- as well as cope with and manage this devastating illness.

It may well be that the combination of child abuse and physical injuries and infection was just far too much for my poor body to handle. And perhaps having therapy earlier in life may have saved me from developing ME/CFS later.

(It goes without saying that um, child abuse is bad, mmkay. And does lots of bad things to a developing child, mmkay. So, you know, don't abuse your kids because they will be fucked up in ways you may not even realize, mmkay. [South Park reference for those of you not familiar with Mr Mackey and his infamous "mmkay."])

But I also know that therapy did not make me better now that I am sick. What I need the CDC to do is figure out what is happening in my body now and figure out how to to treat that now. We know that stress can cause heart disease and cancer, but we don't merely give heart disease and cancer patients a therapist. No, we treat the underlying cardiovascular and immune system pathology in addition to any underlying psychopathology. Why should it be any different in ME/CFS?

Read the full post

Needed sympathy

I keep telling myself to quit reading about what's going on in Gaza. I mean, I'm no longer an Israel/Palestine specialist. My days are so short from sleeping each and every day until the middle of the afternoon (or later) that I've got a backlog of email and phone calls to return, not to mention my blogging and other writing has suffered. With the power cord to my laptop broken, my online time during those precious conscious hours is even shorter while I share a cord with A. Besides, there are massacres going on all over the world such as in the Congo or Darfur, why is this one so special? And Lord knows the killing isn't going to stop based on whether or not I read about it.

I guess I just feel an obligation to make sure that as many of us are reading -- and watching and listening -- as possible to what is happening in Gaza as my country is directly involved in providing the weapons that are killing Palestinians. And while sympathy for the people in Congo or Darfur is a given (not to mention that the Congolese and Darfuris can actually flee to neighboring countries), too many people believe that it is perfectly reasonable to kill Palestinian children. I suppose in some cosmic, mystical way, I feel that my sympathy is needed.

There are, of course, plenty of people who are sympathetic to the plight of those in Gaza, including a large number of Jews. As my last post was from a Palestinian organization, I thought I would list some of the Jewish organizations and bloggers who are also appalled at what is happening to Palestinians in Gaza. Do note that this list is not even close to be exhaustive.

Ampersand (aka Barry) at Alas, A Blog posted Fathima Cader's list here. Others not mentioned in that list include:

Brit Tzedek

Jewschool

ICAHD (Israeli Committee Against Housing Demolitions)

Modern Mitzvot

Haaretz (sort of...the editors are calling for a cease fire) including columnists Gideon Levy, Amira Hass, and Akiva Eldar

JVoices

Tikkun

Tikkun Olam (Richard Silverstein)

Jews Sans Frontieres

Aron's Israel Peace blog

South Jerusalem

Residents in Sderot -- the town that's been bearing the brunt of Hamas rocket attacks.

Refuseniks -- A movement of Israeli youth who refuse to serve their required military service in the Territories. There are also links there to videos of Israelis protesting the Gaza offensive.

And some guy named Jonathan Stuart Leibowitz aka Jon Stewart.

There are plenty more and you can read them by clicking the links sections at the links listed above.

Israel has forbidden journalists from entering the Gaza Strip and bloggers inside are having a hard time detailing what's happening due to lack of electricity and mobile phone service. However there are a handful of places to read first hand what Gazans are going through.

Raising Yousef -- While Laila herself is in the US at the moment, her parents are in Gaza and she's been reporting what they are reporting to her.

Tales to Tell -- A member of the International Solidarity Movement (a good source of info itself) in Gaza who is helping where needed, particularly with the Union of Health Work Committees. Lots of ambulence rides and tales from the hospital.

In Gaza -- More hour by hour accounts.

ei -- The Electronic Intifada is a great resource of news, commentary and background information.

Please do not interpret my support for Palestinians to mean that I support Hamas. I do not support violence done by either side. And Hamas's leadership in Gaza since it took over in 2007 has been appalling and brutal.

However I do believe that Israel has an obligation to negotiate with Hamas as they are the elected leaders of the Palestinian people. If Palestinians had to negotiate with Ariel Sharon, Menachem Begin, and Itzak Shamir (though with Begin there wasn't much direct contact between Palestinians and Israelis), there's no reason why Ehud Olmert cannot sit down with Ismail Haniyeh and Khaled Meshal.

Read the full post

"The narrow gate of justice"

As I don't think Sabeel -- the Palestinian liberation theology center -- will mind if I post this email I got from them in regards to Gaza in its entirety, here our some thoughts on the situation between Israel and Gaza. My notes are in italics.

SABEEL'S REFLECTION ON GAZA

The Narrow Gate of Justice

"Enter through the narrow gate; for the gate is wide and the road is easy that leads to destruction, and there are many who take it. For the gate is narrow and the road is hard that leads to life, and there are few who find it." (Matthew 7:13-14)

On Saturday, December 27, 2008, as the children of Gaza were about to leave their schools to return home, the Israeli air force carried out a massive air attack against the people of Gaza. In less than 4 hours, over 150 people were killed and 200 injured - men, women, and children. By the end of the fourth day, over 390 Palestinians were killed and almost 2,000 injured. On the Israeli side, 4 were killed and no statistics are available on the number of injured.

FACTS ABOUT THE GAZA STRIP:

Population: 1.5 million. 75% of them are refugees. 45% of them are under 14 years.

Area: 360 sq km, 139 sq miles.

Population density: 4,167 people/sq mile (The highest in the world.)

80% of Gazan households live below the poverty line, subsisting on less than $3 per person a day.

80% of all Gazan families would literally starve without food aid from international agencies.

The Israeli occupation of the Gaza Strip, similar to that of the West Bank, including East Jerusalem, started with the 1967 June war. In September 2005, the Israeli army pulled out of Gaza and removed its illegal settlements. However, the illegal Israeli occupation of the Gaza Strip did not come to an end. Israel maintained its tight control over Gaza's borders (air, land, and sea). To make things even worse, Israel imposed a siege on Gaza in June 2007, thus tightening its border restrictions and causing the humanitarian conditions to deteriorate further. Under the brutal siege, every aspect of the lives of the people of Gaza was controlled. They were totally dependent on Israel for fuel, electricity, cooking gas, medical supplies, food supplies (even flour), building material, etc. Israel made sure that the Palestinians would remain alive at barely the survival and basic subsistence level (and if someone needed to leave the Gaza Strip for advanced medical treatment, he or she may or may not be able to get it).

On November 14, 2008, UN General Secretary Ban Ki Moon issued a statement that said, "The Secretary-General is concerned that food and other life saving assistance is being denied to hundreds of thousands of people, and emphasizes that measures which increase the hardship and suffering of the civilian population of the Gaza Strip as a whole are unacceptable and should cease immediately."

IMPORTANT POINTS TO REMEMBER:

FIRST: A word about tahdi'a (the period of calm or truce). It is important to note that among the terms of tahdi'a was the understanding that Israel would lift the siege of the Gaza Strip, and gradually extend the truce to the West Bank. This Israel did not do. It only partially lifted the siege and allowed a trickle of vital commodities into Gaza which kept the people at the level of mere survival. Israel's raids into the West Bank continued on a daily basis and scores of Palestinians were arrested or assassinated.

The International Herald Tribune reported on December 19, 2008 that it was Hamas' understanding that after the tahdi'a Israel would open the crossings and allow the transfer of goods that have been banned since the siege was imposed. There was never a return to the 500 - 600 truckloads of goods shipments that used to go into the Gaza Strip before the siege. "The number of trucks increased to around 90 from around 70." The facts and figures tell the real story. Sadly, however, many western leaders have shut their ears, eyes, and mouths against the cry of the oppressed. Most of the world judges Israel by what it says and not by what it does; while they close their ears to the comprehensive and workable 2002 Peace Initiative adopted by all the Arab leaders including the Palestinians. Even Hamas has agreed to a Palestinian State within the 1967 borders as expressed to President Carter on his latest visit to Syria.

SECOND: So long as Israel holds the Palestinians in general and the Gazans in particular under occupation, they (the Palestinians) have the right, according to international law, to resist the "seemingly never ending" belligerent occupation and struggle for their liberation. Israel, therefore, cannot demand from the international community sympathy and political support and from the Palestinians calm and security, while it maintains its inhuman and illegal occupation. It is only when Israel ends its occupation that it can have a legitimate right to defend its borders. Israel stands in violation of international law and is the aggressor due to its belligerent occupation.

(I would also point out that embargoes or sieges are often considered an act of war. In 1967 when Gamal abd-al Nasser closed the Straits of Tiran so that Israelis could not get goods in or out, Israel considered this an act of war and launched air strikes against Egypt, thus beginning the Six Days War. While I believe that non-violent resistence is the proper response to violence -- as does Sabeel -- Hamas technically has just as much right to use force against what it sees as an act of war. The problem, of course, is that neither Hamas nor Israel can avoid civilian casualties in the forms of warfare they have chosen and as such both are engaging in crimes against humanity. )

THIRD: The Arab leaders and governments can do more for peace (like, say, not shoot at Palestinians who were desperately trying to flee Israeli bombs). Many people accuse them of a conspiracy of silence. Most of the Arab people are ashamed of the positions of their governments because they have not used their resources collectively to end the occupation. Sabeel is not talking about the use of force although many of our Arab people do. We believe that the Arab governments could have contributed much more towards a resolution of the Palestine-Israel conflict through nonviolent means. Tragically, this did not happen.

(You may remember that Palestinians had a civil war between Hamas and Fatah that started in December 2006 and led to Hamas gaining control over Gaza leaving Fatah in control of the West Bank. Palestinian President Mahmoud Abbas, who is from Fatah, has been seeking to regain control of Gaza along with his multi-million dollar mansion located there. As Juan Cole pointed out in this article for Salon, militant groups associated with Fatah, as well as dissident Hamas groups, have been the ones lobbing most of the rockets into Sderot until Hamas announced on December 18th it would no longer keep the truce it had with Israel because Israel had not lifted the embargo and had begun violent raids in the preceeding weeks. While Israel is pounding Gaza, Abbas and Fatah are salivating at the prospect that Israel will oust Hamas, and are even quite possibly helping Israel with the current war.)

FOURTH: Although Sabeel wishes that Hamas and other Palestinian factions had chosen a nonviolent way to resist the Israeli siege, we feel that the disproportionate use of military force against the Gaza Strip and the number of casualties that it produced must be strongly condemned. It is a shame that once again many western leaders have failed to see the deeper issues that are involved. They chose to stand with the occupier rather than with the occupied, with the oppressor rather than the oppressed, and with the powerful rather than with the weak. It is important to continue the resistance against the belligerent occupation. But we call on our Palestinian people to abandon the armed struggle and to choose a more potent and effective way - the way of nonviolence. We can do it and we can win. The Palestinians are capable of setting an example for the rest of the world. This is what we must do; and this is what can restore to us our human pride and dignity.

(I would note that Israel could also be an example to the world by renouncing violence as it so frequently demands of Hamas.)

In fact, we must look to a world where wars, and weapons of violence and destruction would be banned and where oppressed nations would choose the higher moral ground and resist the evil of belligerent occupations by nonviolent means. We hope for a world where a reformed United Nations would never be held hostage by powerful nations, but would enjoy the freedom to establish justice for the oppressed of the world.

FIFTH: We believe that the real message of the Palestinians to the world is a genuine cry for freedom and liberation. The Palestinians did not initiate the violence. The prolonged illegal Israeli occupation is the real cause for the violence in our area. Israel has shut the door on justice. The only way that can guarantee a lasting resolution of the conflict is for the United States' new administration to dare and open the door of justice. We believe that it is the narrow gate of which Jesus Christ spoke. It is the gate that leads to a life of peace and security. "Enter through the narrow gate; for the gate is wide and the road is easy that leads to destruction, and there are many who take it. For the gate is narrow and the road is hard that leads to life, and there are few who find it." This is the narrow gate of justice. This is the basis of international law. The way of military domination, occupation, violence, and wars is the wide gate that leads to destruction; while the gate that seems narrow and hard is the one that leads to justice, peace and security for both sides. We have tried the wide gate and it has only brought us destruction. It is high time to try the narrow gate of justice so that we might find life.

Read the full post