Friday, September 04, 2009

The ME/CFS advocacy conundrum

A year ago I tried examining the question of why ME/CFS patients have been so unable to advocate for themselves effectively, particularly in the arena of fundraising. Except I did not find my thoughts particularly enlightening, even as I have continued to feel there are good reasons to explain our lack of political and financial initiative that I could not quite articulate.

However I was reading Cort Johnson recently recount the experience of being overrun by Multiple Sclerosis patients on Capitol Hill a few years back while participating in a CFIDS Associations Lobby Day. The comparison of MS and ME/CFS patients provided me with a lens through which to explore -- and answer -- the question of "where is everybody" with what feels like far more satisfaction.

Let me begin by noting that while there are more people who have ME/CFS than who have MS, only 18% or so of ME/CFS patients have been diagnosed. Thus there are actually more diagnosed MS patients than diagnosed ME/CFS patients.

MS patients have a variety of effective treatments to choose from (that are covered by insurance companies) including anti-virals, interferons, and yes, CBT, including consultations with cognitive psychologists who, through rigorous psychometric testing, can identify for the MS patient his or her cognitive strengths and weaknesses and train the patient to compensate for those weaknesses.

Doctors, insurance companies, families, friends, and communities at large all consider Multiple Sclerosis to be a legitimate, serious, and debilitating disease, meaning that friends and family members are much more willing to advocate for MS patients.* Indeed as a child I can remember participating in the annual MS Read-a-thon after reading about it in the back of a young adult novel I had received.

The impact of this legitimacy on patients cannot be overestimated, even if most MS patients don't even know they should appreciate it. There is no internalized doubt and stigma (maybe I just really can't handle stress, maybe I am just weak-willed). No internalizing of an overwhelming narrative that invalidates of the seriousness of their illness (I don't have a real disease like cancer or Rheumatoid Arthritis or AIDS so I shouldn't bother the doctor). No shame and fear that by admitting their disease - or simply stating the name of their disease - they will immediately be labeled histrionic, lazy, and/or hypochondriacal.

And patients with Multiple Sclerosis do not have post-exertional malaise. While it is true that chronic fatigue is a very prominent part of having MS -- so much so that some researchers even refer to this aspect of MS as "chronic fatigue syndrome" -- MS patients do not appear to have difficulty metabolizing oxygen. Their VO2 max levels do not drop significantly after engaging in aerobic activity, saving them from the overwhelming lethargy and apathy post-exertional malaise produces.

My best friend and godfather, Talal, has MS. Because he began Avonex (a form of Interferon B) and Amantadine (an anti-viral) within a few years of symptoms appearing, he's still in his PhD program. His primary symptoms are fatigue and cognitive problems -- brain fog, problems with short-term memory/working memory, organization, etc. While he gets tired easily and struggles with sequential tasks like recipes, he does not have problems with post-exertional malaise. He can still read methodology (i.e. dense, esoteric text). He can still write academic prose. He can still teach and make a monthly salary. He can still work an 8-hour day. He can even help friends move with his pick-up. He suffers little to no pain. He walks unaided. He goes to the gym most days. He's currently in the Middle East doing research for his dissertation.

I, on the other hand, had to drop out of my graduate program. I live on $674 of SSI + Food Stamps. For much of the last five years I have not been able to read books (despite owning 1200+), though my reading ability has been improving since increasing my dose of Acetyl L-Carnitine substantially and starting D-Ribose. Methodology, of course, is still out of the question. I too have a hard time following a recipe -- or even just making myself a bowl of cereal in the morning -- because my working memory and sequential tasking are poor. I walk with a cane because my balance is poor (some days I feel almost hemiplegic). I take 120mg of morphine a day plus extra-strength Vicodin (Lortabs) for constant, burning pain. I'm only awake in the evening. I have to have someone come in and do my laundry, cook my meals, and help me bathe -- someone who may or may not understand how sick I am. The only writing I can do is cobbled together blog posts and journaling. My state's form of Medicaid does not cover treatment for CFS, though there is no real standard of care anyway and my doctor knows almost nothing about my disease. I haven't been able to drive for four years now both because of pain that's unrelated to CFS and because of poor spatial perception that is most certainly related to CFS. My boyfriend lives in the UK but I cannot get on a plane to go visit him there because I absolutely must lay down after 3-4 hours, while the flight just to the East Coast is 6 hours, with the UK another 5 hours after that.

It is true that Talal is not necessarily the average MS patient, nor am I the average ME/CFS patient. But I do think the very differences in legitimacy and access to treatment are essential to explaining why MS and ME/CFS patients differ in their abilities to advocate for themselves.

Unfortunately we cannot get legitimacy and access to treatment without advocating for ourselves. Except we cannot advocate effectively for ourselves without legitimacy and access to proper treatment. I still do not have an answer for how to overcome this insidious conundrum. However I am most certain the answer is not to blame the victim, i.e. ME/CFS patients.


*Especially mothers. Some of the staunchest and most effective advocates for ME/CFS have been mothers (Pat Fero, Annette Whittemore, Jill McLaughlin – to name a few). Indeed my own local support group fell apart when one of our members left – taking her mother, our group facilitator, with her. The CFIDS Association may well have made a serious strategic error in not addressing Pediatric ME/CFS more aggressively from the beginning, even if adults are more likely to develop ME/CFS than children.

Sunday, August 30, 2009


I woke up Tuesday with a sticky despondency I have not felt in a very long time. It was early -- that is, in Michelle-world, 1 pm -- as I had an appointment with my primary care provider to discuss the lower right abdominal pain I've been having for five years. Except I knew there was little chance of resolution given that my doctor has been chipping away at it all these years with MRIs, CT scans, ultrasounds, physical therapy, a urologist, a gynecologist, and two uro-gynecologists. "That's it. We need to get in there," he declared almost two years ago. "You need a laproscopy." However since I'm on Coumadin, it's not like surgeons are lining up to cut into me. And to be honest, I'm not exactly eager to have them cut into me.

After a few pleasantries where we talked about how he can't remember the last time he actually took a lunch given the workload that twenty-two – "twenty-three, today," he corrected – patients a day creates, we went through the whole thing again. How this pain was left over after a urinary tract infection that presented as pain at the base of my spine traveling down the back of both legs and a fever of 104. Since then a mostly dull, pressure sensation has remained just below and to the right of my belly button that is hot and sharp when pressure is applied. Since starting morphine a year and a half ago (which is why 1 pm is early), the pain is fairly tolerable except the ten days or so leading up to my period when it really interferes with sleep, physical therapy exercises, standing, etc. The unusual and mysterious urinary tract infections I had for a year and a half (summer 2004-winter 2006) are now part of our unspoken collective memory.

"Maybe a hernia. Sometimes there are hernias that aren't very visible," he said with furrowed brows.

"Funny you should say that..." I began. The week before I'd developed pain in my groin/thigh after straining congruent with a hernia and was sent to the ER by his nurse. The ER nurse and doctor both thought it sounded like a straight forward hernia but, alas, the CT scan came back negative. My doctor tempered his frustration by looking for the ER report that had, apparently, not yet arrived.

We moved to a discussion of my unstable sacro-iliac joint and how I seem to be having a similar problem with my hips. He had me do some range-of-motion exercises, which I did with ease.

"The only problem with range-of-motion I ever have," I tried to remind him, "is that I have too much of it." For someone who is used to dealing with a never-ending stream of arthritic people who can barely move, the idea of "too much range-of-motion" is completely lost on him.

"I suppose – theoretically -- if there is some nerve compression in the sacrum then it might refer to that area in the abdomen," he pondered. "Let's do an MRI of the sacrum. If nothing shows up, my instinct is still that it's a genitourinary issue and to send you back to Dr. C." The second uro-gynecologist.

So Tuesday I'm to have the third MRI of my lumbar-sacrum in five years, though I'm sorely tempted to just forgo it and save the taxpayers of the fine State of Oregon the money, not to mention my body the radiation as I'm 99.99999999% sure it will show the exact same thing it did the last two times (2004, 2007): minor arthritis of the spine.

I returned home via the medical transportation cab, gazing out the window to see people living life – life that I miss terribly. Walking in the Park Blocks under the brilliant blue Portland summer sky, sitting in cafes, riding buses, driving, biking, talking to friends, grocery shopping, working, reading books...Returned home to my studio apartment, the cell to which I've been sentenced for the past eight years (well, this particular cell for the last four).

The pain arrived not long after the symptoms of my illness, Chronic Fatigue Syndrome (the most ridiculously name disease ever), began to get markedly worse, and I have been hoping that if we could figure out what was causing that pain maybe I could get better. Sure I wasn't going to get ALL better. But it would be nice to wake up before noon and see the sun again. Be able to read a book again. Be able to write more. Maybe go to Divine Liturgy or Mass again. And maybe, just maybe, get on a plane and visit my boyfriend in the UK.

I woke up Wednesday with the same despair as Tuesday. Brushed it off initially as PMS but wondered if it might be related to the increase in Promethazine a few weeks back and decided to cut it from my bedtime meds. Especially as lately I wake up feeling even more groggy than I usually do. How can one not feel at least a little despair to sleep 12-15 hours a day but never wake feeling refreshed? To wake up everyday feeling like you desperately need more sleep but being so achy from being in bed you just have to get up?

Ted Kennedy had died the night before. Charlie Rose was re-airing two recent interviews with him and I found one of the points he was making about all the doomsayers regarding Social Security and Medicare entitlement spending a very important one.

Kennedy: "If you have a breakthrough in Alzheimer's, you empty 2/3rds of the nursing home beds in my state of Massachusetts...

Rose: "So you're saying, let's fund the NIH, let's fund the research..."

Kennedy: "This idea that it's a zero-sum game is crazy. The Republicans believe it. They think it. They're wrong."

If more ME/CFS research were funded and adequate treatments developed, not only would US taxpayers not be paying to support me on SSI, but I would be paying taxes as a middle-class academic.

Considering the state of NIH or CDC research of ME/CFS is about the last thing a depressed person should ponder. Reading through the most recent threads among the ME/CFS patient community about whether or not the CFIDS Association has or has not been an effective advocate over the last 17 years is also rather bleak, if still somewhat enlightening. I've found myself writing about that too in order to make sense of my thoughts, though I haven't made enough sense of it yet to post anything.

Perhaps it's because I've also been distracted by ongoing thoughts about how being housebound cuts me off from the Church. I have not been able to go to Divine Liturgy for four years now. When Father F. came here two and a half years ago to do a truncated version of the Divine Liturgy for me, I crashed badly and he ended up in the hospital due to a C. difficile infection. He is not the healthiest man, and I hate to bother him because of that, not to mention having the Divine Liturgy here is clearly hard on me (I stood with him last time; I have since moved my icons next to my bed). I never hear from anybody at Saint Irene's. I'm certain I've been long since forgotten by everybody besides Father F. And he only remembers me because I speak Arabic.

I've tried to find some sort of spiritual connection with the Journey-Koinonia community up the street as it's close enough to come home early if I get too ill, not to mention it's not as sensory-intensive as the Divine Liturgy. Theologically and politically there is a lot I have in common with them, even if I dislike their liturgy. But I've only been well enough to celebrate Mass with them once since last November – Palm Sunday – and nobody there has been particularly eager to spend time with a shut-in. I'm on the email list so I get the weekly homily and announcements. But that's not the same as human contact.

Yes I feel abandoned by the Church. Not welcome to participate in the life of the Church because I'm housebound. Most people think installing a wheelchair ramp is about all you need to do to be friendly to the disabled. By the very fact that the housebound are, well, housebound means the community cannot possibly be obligated to include them, despite all that the housebound have to offer. Meals-on-Wheels – that 30-second transaction of handing over a less-than palatable meal – is all they need, right?

I woke up Thursday with less melancholy, though still ruminating about the ME/CFS community and feeling forgotten by the world outside my apartment. Read more in the ongoing thread about the CFIDS Association. Found the litany of people who had been sick for 20 or more years terribly disheartening. Is that what I have to look forward to? Another ten more years staring at the same damn four walls? I really wanted a good cry, but no tears were forthcoming.

There were a few tears during massage therapy on Friday afternoon. Most of the time it's my right hip that hurts, but as my massage therapist began massaging my left hip and buttock, I was reminded that it, too, is also in pain but usually forgotten about amidst the roar of pain on my right side. The gentle rubbing and kneading felt almost sacred.

My mind was scattered Saturday. Not depressed, but not exactly jovial. Mostly just...tired. That word I must use a zillion times a day. Yet a tired I have no idea how to explain to someone who has never felt it before. Like someone slowly sucking all of the very life out of you. I had enough energy to fry up some frozen hash browns, a sausage and a strawberry-ricotta cheese omelet. It was nice but not nice enough to match the amount of energy I used up making it.

After my daily chat with A., I kept trying to decide if I should watch a movie or take a bath or check my email. Eventually "check my email" won out, among which was a link to a post on Hillary Johnson's blog that I thought maybe I'd already read. I never know half the time because my memory is so poor (but it does make re-runs so much more interesting!). She was talking about the Invest in ME conference in London last May and eventually I decided that no, I hadn't read this post, even if much of the material was familiar to me. There was a lot about the new Whittemore-Peterson Institute and Annette Whittemore talking about the backward, apathetic, and slothful pace of research contrasted with Judy Mikovits's exciting research I've been hearing so much about over the last several months. Research about the immune system she's been able to do within a mere year that the CDC and NIH haven't managed to do in the past quarter of a century. I could feel the spark of hope lighting up again. If maybe my doctor could get access to that Virochip...

“It’s a very, very powerful tool to have a research scientist sit in the same room with a patient who is so ill, and listen to their story…" Annette Whittemore told the London crowd.

"In fact, we have to tell our young students to go home, take a break. It’s no wonder they’re so loyal and enthusiastic. Their mentor outworks all of them...”

“...Dr. Judy, as she tells patients to call her, has taken this field by storm…Her expert, broad training in Frank Ruscetti’s (NIH) cancer lab, and drug development in southern California taught her to realize when something is so terribly wrong. She answered a plea to come to Reno.”

I could feel the tears coming from that place in the center of my chest. Somebody has finally found us. Somebody who could actually help us IS actually helping us. Somebody with the knowledge and the technology and the contacts is using all of that to help us. Us. The "chronic fatigue" patients that nobody will touch with a ten-foot pole lest it damage their careers and precious funding.

But it was the postscript that got me. "Dr. Judy Mikovits has asked me to post her cell phone number and e-mail addresses to this blog. 'These patients mean everything to me,' she wrote. 'I have never done anything with my private life but serve patients...we encourage each other.'"

What a sweet but crazy woman, I thought to myself. She's going to be engulfed with thousands of desperate patients like me and worse sucking her dry for help! And indeed in the comments section was an anguished plea from a mother who was sick along with her son and had lost her home and income.

This remarkably reckless act of kindness is what finally produced the cathartic cry I had been needing. In the history of our illness there have been a handful of doctors who too have provided their remarkably reckless acts of kindness, even if all they could really offer was just comfort and symptom management. There have been those like my doctor, who keeps laboring away each day with little to help him find his way. But from far too many we have faced derision, apathy, doubt, rejection, and abandonment. Children have been ripped from their parents. Patients have been committed to mental hospitals against their will. A few have even died – and are dying from the rare lymphomas that first drew Dr. Mikovits to Reno in the first place. Most of us are simply left alone to watch the lives and the people who were in those lives float away never managing to ever quite touch them again.

I woke up today feeling like, if not refreshed, like I'd actually slept for the first time in awhile. No, I still wasn't able to go to Divine Liturgy or Mass. Again. But I had my own solitary liturgy with more faith that someday – perhaps soon – I'll be well enough to sing the Cherubic Hymn with live people and not just a CD. And of course, I said a prayer for Dr. Mikovits, Annette Whittemore, Dr. Peterson, and all the unnamed patients of this insidious disease who are, at last, being found.