Sep 182011

In a matter of hours I went from feeling well to spending two weeks in the ER/ICU.

That was merely the start: I would much later discover, way after this hospital stay, that there was a lengthy and maze-like trail to a diagnosis of  “Chronic Fatigue Syndrome,” even though the name “Myalgic Encephalomyelitis” or ME, is internationally recognized.

ME longform is a mouthful, but it doesn’t have the fey or loaded connotation that Chronic Fatigue Syndrome has. Patients often refer to the nebulousness of the naming as follows: ME/CFS.

But the onset for me, unlike others and similar to others also, was rapid.

It is difficult to cobble together a cogent story of how ME/CFS happened to find me. It isn’t difficult to recall how quickly my life unraveled after it did, how disabled I had become, and how far I would have to go to regain my health.

My two-week all-inclusive hospital stay was christened with a spinal tap, then later unceremoniously eulogized with a WMD-loaded PICC line  — a long catheter that runs through the inside of the upper arm to the heart. It delivered what my body felt was poison for four weeks.

Although the ER doctors at the time didn’t know it, and couldn’t have known it under their current practices, I was in heart failure. It would be many months to come before someone well-versed enough in my condition would be able to pinpoint this.

I hadn’t planned on this particular hospital stay, so my brain was stuck in problem-solving mode. Questions such as how was I to let my child know I love her, but I’m stuck here in Isolation until they can get a handle on things? What is everyone going to eat for dinner?

I’m not a TV watcher and was too ill to focus on it anyway as the room swung wildly to and fro. The bright sun had to be shut out with blackout blinds at all times. The doctors and nurses danced nicely around my oddities.

I had infections one gets when one has end-stage cancer or severe AIDS, strange things like streptococcus viridans. I had managed to get sepsis, an often fatal blood infection. I had managed to get meningitis. Being a fit and healthy person, the doctors were flummoxed as they performed fancy triage tricks to little avail.

I had crushing migraines for which I was treated with intravenous Dilaudid, a potent narcotic. There were weird mercurial pains for which Dilaudid was dialed up. It took a while for everyone to figure out that the dope was making me sick, literally. So I was carpet-bombed with a planeload of anti-nausea meds.

The inevitable gallbladder failure and subsequent removal was almost mindless for me as one could well imagine at that point. Thankfully the surgeon let me wear a nightgown I used to love (and still have but never wear).

Like Sisyphus fruitlessly rolling his boulder up the hill, there was this incredible brain fog alongside an unfortunate desire to think. The iPad became my companion, yet my bête noire. It was getting harder and harder to look at because I was seeing double. This was the light in the prism that caught my doctor’s eye more than anything else. My vision problems were making little medical sense.

Once in the middle of the night, a nurse wrote his phone number on my room’s board. He wanted to ensure I knew he owned a house and a BMW, was single and looking. I fingered my wedding ring (was it still there?) as he told me he could ‘push Dilaudid better than any nurse.’ He put a double underline on the board under what he thought my diagnosis should be: ulcerative colitis. When I inquired about him the next day to the Charge Nurse, he became a specter no one had seen. My primary ICU doctor, always congenial, was furious.

With this one exception, I adored the nurses who were my saving grace. Most were Filipino, loving, kind, knowledgeable, anticipatory – I needed that as I’m not one to grouse loudly for things.

The nurse who put in my PICC line was an unbelievable patient advocate. Not that I wanted to stay another day, but I was supposed to. He was the one who noticed the most and made what needed to happen happen. With six or so doctors flitting in and out of my room, it was hard to keep me straight.

A mystery nurse I will never forget named Peggy called to tell me “don’t leave a single stone unturned.’ If I had met her during my stay, she was not familiar to me in any other way than the lilting leave-behind of her Tagalog.

I was catapulted into my bed at home the day before Independence Day. How apt is that? I was sent home when I could stop vomiting and eat some Jell-O on the way out the door.

I watched the fireworks on the Fourth of July, which were thankfully happening across the street from our house, clothed in a pile of sleeping bags my husband had positioned for me so I could see all the action. Watching the action has become quite the thing to do since then. And from this focal point of stillness I’m still turning over stones.


Sep 062011

NPR, I really thought I could count on you to be what you describe yourself as on your about page: a “thriving media organization at the forefront of digital innovation.” On Monday’s two segments on ME/CFS here and here you let me down.

The first segment of Monday’s Morning Edition began well enough, with first-hand accounts from ME/CFS patients. They sounded credible, and one was eloquent enough in her description of ME/CFS vis a vis cancer, that she actually envied the way cancer patients are treated by the community at large. This was powerful and hit home.

Then you brought out the heavy hitter Tony Komaroff who explains how it’s hard to define ME/CFS and that doctors are still skeptical because the ‘syndrome’ is being defined by patient symptomology. You then go into how it screws up your brain, your immune system, your energy metabolism, your life.

After that you trot out the gammaretrovirus, XMRV, and promptly kick it right back to the curb. Sorry, guys! It was as if the writers cribbed all the press releases on lab contaminants the night before. Where’s Amy Dockser Marcus when you need her?

But the kicker was the second segment where you get real down and dirty with CBT (Cognitive Behavioral Therapy) and GET (Graded Exercise Therapy). As if we can’t get enough of our two best friends, there they are again on NPR for the whole world to have a listen to.

Apparently it would behoove ME/CFS patients to “change how [we] experience our symptoms.” We’re a whiney lot who catastrophize and need a serious slap in the face with positive thinking.  Also, if we aren’t wallowing in our own misery, then we’re without a doubt so out of shape we just don’t even get it. No, we are worse than that, we are ‘deconditioned.’

So. Let me see if I get this? If we get off our duffs and meld slowly back into the bionic selves that we were before we got the ‘grippe’ and take the talking cure, then the disease was just nothing more than a stepping stone to our own self-actualization?

As I wrote before, how I wish it were true that ME/CFS patients are simply depressed and deconditioned.

A little light creaked through the door when Dr. Lucinda Bateman spoke on your program. A clinician with experience, who’s been in the trenches since the 80’s outbreaks in the US, she gets push/crash. She understands why ME/CFS patients want to do, do, do when they feel good, and that these same patients ‘crash’ afterwards with disturbing symptoms. She doesn’t get CBT, she says. She doesn’t know the cause and doesn’t think GET will do anything beneficial. And like pretty much everyone with solid mental faculties, she waits for science to pinpoint the cause of ME/CFS.

I wonder, what is it about XMRV that the majority of the press is doing such a lousy job researching it? I know science reporting is hard, but this is as important as AIDS!

You know, positive thoughts and fresh air benefit people who suffer from any chronic illness no matter who they are. They just won’t cure true ME/CFS.

 Posted by on September 6, 2011
Aug 212011

Now I didn’t know who Simon Wessely was until I got ME/CFS. Once that event came into my life like an eighteen-wheeler at three am on a long haul, I started seeing his name pop up just about everywhere.  You see the British call a truck a lorry, they also call CFS, ME, or Myalgic Encephalomyelitis, hence the ME/CFS.

It confuses the heck out of everyone who wants to get a handle on this disease. Intentional? We will look into that one in another post.

So today I read in the UK Guardian that Wessely is getting death threats from sufferers of ME, going so far as to call them “militants”. Death threats or personal attacks are never OK, and I feel sorry for the ones who got them.

But let’s look at the reason for this pent-up frustration by patients suffering from ME/CSF, some of them bed ridden for over 20 years — most of them a spring of activity and life before they got struck down to their knees by this disease.

Even after 25 years of research, the “truth” is not yet known. We are close to a cure because of the tenacity of some doctors. If you scratch the surface, all indicators point to a real gammaretrovirus which looks like it could possibly be XMRV. All indicators in my experience with the disease and amazing partial recovery clearly point in the direction of a retrovirus, other viruses unbeknownst to us, or viruses we already know about but not enough. Once we have codified and standardized biomarkers and tests that our primary care physicians can give us to detect it (just like HIV) then we can finally focus on the c word, ahem, a cure. Many of us have tested both XMRV and NaGaLase positive so there’s something clearly there that’s not in our heads — unless it’s a retrovirus that crossed the blood-brain-barrier, or an enterovirus, perhaps? Who knows.

Enter Simon Wessely.

He sounds like a nice enough guy. From across the pond, the name brings an air of a mulletted footballer, or a distinguished actor. In real life he heads up the department of psychological medicine at the Institute of Psychiatry at Kings College in London, in addition to being a professor of epidemiology and having a lot of other accomplishments and responsibilities. Obviously, he isn’t suffering from ME/CFS.

All started well enough. He and his coworkers advocated for an organic cause to the disease, even going so far as to find an association between autonomic dysfunction and chronic fatigue syndrome. He provided what people in the field thought was reliable data. Then at some point, Wessely started calling ME/CFS a psychiatric problem that needed Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET).

Wow, why do I feel like I’m in a Three-card Monty game? Data here, data there, the cards come down and — again it’s the All in your head go to the shink card? Coming from the head of the Psychiatry Institute, it’s just too close to a hammer calling everything “disease” a nail.

Even the London Guardian itself published a letter saying CBT and GET do not work.

Oh how I wish those things would work on my CFS-related double vision or the diastolic dysfunction of my heart to name just two of my “non-psych” related symptoms.

I tried, man how I tried. My husband and I would walk around a little lake in the neighborhood most evenings, and one day I felt really good. So instead of just walking, we ran a bit, maybe 200 yards. Caught our breath for 400 yards and did the same again. Did I ever get hit by a brick. My symptoms flared up, and it took me a couple of days to get back to “my normal” again. That is exactly what GET is recommending. No I wasn’t overdoing it, it just didn’t work for me.

EDIT: Apparently this is getting traction very quickly as Discover Magazine has now posted another valentine to us all ME/CFS types. Why is this?

 Posted by on August 21, 2011
Aug 172011

Back in April, just as I had crash landed to the ground and serendipitously found a great ME/CFS doctor, there was a little symposium in Bethesda, Maryland at the National Institute of Health.

It was sponsored by the The Office of Research on Women’s Health, and a couple of big ABC organizations, the aforementioned NIH along with the HHS. This was all a big government-funded shindig with another outfit called the The Trans-NIH ME/CFS Research Working Group where they took thought-leaders from different NIH medical disciplines and gathered them all in one place to see what they think about us folks.

The seminar report is big and hefty, and I would hope that some wonderful PhD out there will help us all understand VDR Polymorphisms and Xenotropic murine leukemia virus related viruses (for instance) in a way that won’t make what is left of our collective brain shrivel. If you’re out there, please hollaback.

So without further adieu, the news as I see it;

Can we figure out how to describe fatigue? Now I can get a visual in regards to how unwieldy and un-navigable this boat could be to steer, but seriously. Anyone who has CFS/ME has their eyeballs glued to the heavens when the word fatigue is uttered even faintly two area codes away. It needs to be codified with real world symptoms rather than with that broad based single noun being fatigue. We need that so that we can get true patient subsets that have infectious etiology(ies). Using the word fatigue alone is too simple, especially when you feel like exercising or working and for sure you aren’t depressed. That’s not fatigue. That is something else, and it’s our job as patients to help our doctors understand what that is. No matter what.

Yea! They actually recognize that Post Exertional Malaise (PEM) is a hallmark symptom not just for the Canadians ;-). Ever had anyone (or oops! a doctor) tell you that you just need to run it off? You do your best, then the next day, you have flare-ups all over and feel like you were dragged behind a flatbed truck? You may even get a fever or a sore throat or be irritable as heck. Getting PEM to the forefront is imperative in getting this disease some street cred. This big symptom has been relegated to the attic for far too long. Let her shine, because we need to figure out a lot about the pathways of this one too.

It seems like they are skirting around XMRV and MLVs. Call me paranoid but after that whole Judy Mikovits Science Mag theater of the absurdness, there has been a bit of a chilling effect? I hope I am wrong, and that it’s just my mind playing tricks on me. Because good research here is so needed. How many CFS/ME patients have tested XMRV positive? Raise your hands. Or even know there is a test and you should likely know about its existence? The more of us who test positive, the larger the army is, the less they can ignore us. The blood supply needs to be protected too, as other countries have done. I really hope this will all be sorted out soon and the Whittemore Peterson Institute can get some swing into it.

Reading in the report about CBT (Cognitive Behavioral Therapy) made me wince, because CBT and GET (Graded Exercise Therapy) go together like peanut butter and jelly. But they aren’t as tasty, and they’ve been around the shelf far too long and are looking a little dusty. Sure CBT would be great for anyone coping with chronic illness if they need it at the time. But it won’t make the bugs disappear!

It was great to read that there are a bunch of biomarkers identified such as natural killer (NK) cell function, various cytokines, perforin, and membrane dipeptidyl peptidase-4 (CD26 antigen). The group was strongly encouraged to go further down the biomarker identity pathway. That is good news.

I’m sure I’ll have more to say on this subject as I absorb more of the material. As I said, it is heavy and technical. It’ll require a bit of time to tease out all the nuance.

Oh, and lastly, I guess in a sense we CFS/ME patients are “laypeople” in the true sense of the word. I am exhausted now and am going to lie down.

 Posted by on August 17, 2011
Jul 312011

1. Run like the dickens from stress and chaos
2. Learn you are not a robot who can do everything
3. Kick your feet up as often as possible

First, number one. This is the hardest one because stress and chaos are impossible to avoid, particularly in my life it seems. We just moved across country with a school-aged child. So what’s so stressful about that? But before that crotchety synapse kicks in, I think about how fortunate we are that we can work remotely, that our child is adaptable, and that we found a nice place to live. That kind of stuff.

Next on the list is setting some boundaries with folks who need some boundary setting in order to get well with ME/CFS, which is pretty much everyone. This is as simple and as difficult as needing to know when and how to say the four letter word known as “no”. In regards to trying to do it all:  Is it worth dying for? So it”s actually kind of comforting for all in a way to know that you’ll still be around for a while to tell them no.

Last is to get lots of rest. This of course means again listening to yourself most likely, not getting too manic about getting things done. Find a way that helps you go with the flow on a daily basis no matter where you’re at physically. Try somehow to find a rhythm, even if it’s a cup of non-caffeinated tea with your feet up for twenty minutes with the door closed (locked?). Go ahead, live on the edge! Whatever is needed. Just make sure you find a way to recharge that works for you. Daily.

 Posted by on July 31, 2011
Jul 152011

Illustration by Matt HertelI was so excited to start a new therapy for CFS, CFIDS, ME, whatever you want to call a redheaded stepchild neuroimmune disease with no name. But it won’t be, at least for now. I’ve been alerted that shipments of GcMAF to the US from BGLI in the Netherlands are temporarily suspended due to recent confiscations by the FDA. It’s not that the federal agency has anything in particular against GcMAF, it’s just that there is a general curtain falling on the importation of these kinds of biological products by the Department of Homland Security. Anybody who knows anything about macrophage activation (hint: what do you think MAF stands for?), knows this is a serious deficit for patients who have  been without medical recourse for decades. The reclusive Dr. Nabuto Yamamoto holds the patent for GcMAF, so well, there ya go.

My doctor won’t even do the necessary bloodwork to receive this form of GcMAF anymore. Meh. Who would if the meds will never bother to arrive from the Netherlands anyway? Word is you have to hand carry it in your suitcase yourself twice in six months, if you have the physical and financial means, or the where with all to deal with this, for goodness sake.
 Posted by on July 15, 2011