Definitions Matter: IOM Report on ME/CFS

Being a sufferer of Chronic Fatigue Syndrome (CFS) means dealing with skeptical doctors, a lack of public awareness, and a very confusing diagnostic process. The last is a much bigger problem than even sufferers understand for it is the doctors being confused as well.

So I applaud the new diagnosis method proposed by the Institute of Medicine of the National Academies here in the United States. While I haven’t read the full report yet, the outlines and video presentation depict a much more streamlined (and dare I say it, more accurate) list of symptoms for diagnosis.

Quoting from the Key Facts PDF:

There are five main symptoms of ME/CFS:

1. Reduction or impairment in ability to carry out normal daily activities, accompanied by profound fatigue;
2. Post-exertional malaise (worsening of symptoms after physical, cognitive, or emotional effort);
3. Unrefreshing sleep;
4. Cognitive impairment; and
5. Orthostatic intolerance (symptoms that worsen when a person stands upright and improve when the person lies back down).

The first three are mandatory and one of the latter two is needed to fulfill the criteria for diagnosis.

I suffer harshly from the first four and haven’t been tested for orthostatic intolerance. Lately, number four has been particularly bad, hence my not posting much. The last few days have been especially challenging making coherent sentences a challenge even when speaking. Today is better, thankfully.

Also in the report is a proposal to rename the disease to Systemic Exertion Intolerance Disease or SEID. Doesn’t roll off the tip of the tongue, does it? However, it is bang on what the illness is really about and, most importantly, replaces “syndrome” with “disease” which is important in the medical world.

Note that this report has nothing on treatment and is confined to diagnostics for doctors and researchers, so please don’t get your hopes up on a treatment being developed quickly or even at all. What this report does is add legitimacy to the illness which is vital for extensive research to be done like Stanford’s findings last year of physical abnormalities in CFS patients’ brains.

After over 25 years of having this miserable illness, I’d given up any hope of advancement in any way or form from the medical community. This may be more than a glimmer.

Life Is Like a Boat

Full of waves that bob us up and down, the water we sail on through life is rarely calm for any lengthy amount of time. The past eight days have not been still, but have not been tempest tossed either. Illness has been part of the downs of my life during this period. Most of them in fact.

Mostly bedridden to start out the week, it felt like I lost a month of things needing doing rather than days. On the other hand, a few good things happened that ranged from the mundane scoring of cheap DVDs at Alco to meeting with a congressional candidate that my father has been pitching tax reforms to.

On the negative side, somebody knocked our new mailbox off its post in the middle of the night. Tire tracks showed it wasn’t either of the snow plows, but a smaller vehicle that hit the post. The hill it fell down is very steep and treacherous, so I had to wait until I was feeling better to retrieve it from the snow. Thankfully, total body weight routines help with balance far more than I realized.

So things weren’t oppressively dull.

I did lose five days straight on weight training, but bobbed back to higher levels of pounds pressed. Things went swimmingly until yesterday, when pain induced sleep deprivation combined with upper respiratory issues made for a difficult day at church. Teaching adult Sunday school to a room filled with professionals from all walks of life and two thirds of the stake presidency while brain dead is not recommended.

My beloved Hoist V2 home gym did not get used as it was beyond my physical stamina after church. Today started out equally poorly, but somewhere after Noon rolled around, I became functional again. Before and after sessions of Pinball FX 2 verified I wasn’t imagining this and so I got to workout again.

One must adjust to the ups and downs of life or risk the chance of developing lifesickness, the equivalent of being seasick but more disorienting and disheartening. With less throwing up, I hope. Knowing that waves always go up and down is a big part of developing the emotional sea legs needed to cope with life. Not that I’m always on an even keel.

If my friends could have seen me ranting at the cats, the computer, and the world in general while being very ill Monday, they would have been shocked. An unusual combination of sickness, exhaustion from CFS, and high pain had me worse than the normally surly attitude I exhibit when ill. Of course, this passed and life went on.

Feeling better allows me to appreciate things properly, such as the beautiful song the post title was taken from. Here’s a live performance of Life Is Like a Boat by Rie Fu:

Simply lovely tune.

This song was the end theme for the first season of the anime Bleach and I’ll always fondly associate it with the character Rukia. I think you’ll find it stands on its own perfectly well.

The Month That Ate My Homework

Or any other ridiculous excuse that you can imagine for not getting more done on the blog in November.

A wintery mix of weather, intestinal bug, and doing more in the real world than usual has led to my getting very little accomplished online lately. When it takes forever and a day to recover from expending energy, productivity suffers greatly. A couple of weekends ago I went on a trip up to the St. Paul area where I ended up assisting a close friend in teaching a merit badge course on computers to Boy Scouts.

Since then, I’ve been one of the walking dead and some extended trips out helping my father on some repair calls made me hungry for brains. Wait, that came out wrong. I lost my brains somewhere along the way, that’s what I meant. If you find them alongside the road, please send them to me and I might remember to repay the postage.

It depends on what shape the gray matter is in, you see.

Health 4-11-2013

While being energetic is permanently out of the question, there has been a slight increase in energy. Dizziness is still there on occasion, but far less than it has been. The last year has taught me that I have to pace myself no matter what now and that I can’t be pushing my limits like I prefer to. I really don’t like that.

One thing I’m grateful for is that I don’t suffer from seasonal depression. It seems a lot of people are and the long winter has gotten to them in more than an annoying way. Me, I’m just annoyed when ice causes me to get stuck in the driveway.

Of course, my attitude may have something to do with bright sunlight hurting my eyes. Gray days are actually more productive for me in my strange existence.

Health 1-28-2013

Urg.
I’m tempted to leave it at that, but this was not a good weekend and I’m still feeling little better than one of the walking dead. It would be more accurate to call me the “sleeping dead” because I’m what the Brits call completely knackered and spent most of yesterday in bed. At least, I think I’m using that word correctly.
Crossword puzzles and video games have shown me to be very out of it, so the head full of cotton is not making things easy and the results show it. Three tries to spell “results,” sigh.
This is a consequence of doing too much and going out too many times while feeling very iffy this past week. And the brain just turned to mush and I can’t think of anymore to write.

Survived Another Holiday

I do not know when holidays changed from things to anticipate eagerly to things that strike dread in my heart. It probably was a few years into CFS that the demands of such days became apparent to me. Yes, I stubbornly believed back then that somehow, someway I would get better.

Then there was Labor Day, a federal holiday I always thought was pointless. I’m not a fan of holidays except to mark important events or to honor military service. It also seemed unnecessary with Thanksgiving not to far away and Christmas a mere month later. To me, it was inconsequential and gave it little thought.

So of course this year I completely forgot it was coming despite many announcements about the ward picnic. Postponed plans to go to the range to make some very badly needed zeroing in for a couple of rifles meant that yesterday morning was a must do. Then at noon the picnic would have to be gotten to. Oh hey, a phone call from a friend getting the online gaming group together for steak later that afternoon made things even more complicated.

I really wondered if I would survive Labor Day.

Health 9-3-2012

Going cold turkey on H202 to prepare for a full cleanse in September has not gone well. So I am now forced into restarting the maintenance regime and postponing the full. Such is life.

I am finding online multiplayer gaming to be more physically draining than I expected. It tires me greatly if it goes more than a couple of hours. That is one of the most annoying things about CFS, it does not care if real physical activity is involved and will be set off by anything I do no matter how trivial.

New week, new challenges to overcome. The first is Labor Day…

If I only Had a Brain

I have had this going through my head for a good part of the day. Why? Because I have been addled at best today. The early morning hours were not kind to me from overdoing things, so I did not make it to church. Trying to work on the post I started earlier this week turned into an ordeal and that is when this tune began to play in my head. Good thing, because it needed to be filled with something.

At least I found an old MP3 player to use as a Sunday only one. Where the good one went, I do not know. Also, I did work on changing the look of the site. Hopefully it is a bit more presentable now.

Health 8-25-2012

Well, that was not a good week. Gastrointestinal distress, high pain levels, and interrupted sleep contributed to keeping me at low ebb. I barely was able to start a rather large post and never did get back to finishing it. Chores around the house suffered the same fate.

It is pretty clear I overextended myself by making a shopping trip on Monday. There are no regrets, since badly needed items were gotten and the piper always has to be paid. Hopefully next week will be better.

Now to see if my shoe repairs worked this time around!

Health 8-12-2012

Time to report in on how things are going. Other than having a nearly perpetual low level headache, the Lyme Disease symptoms have all but vanished. As I type, a gentle throb in the temples reminds me I did not get through the illness unscathed and this may be the new normal.

Today was a tough one due to waking up tired and aching due to the cold, damp weather. I managed to survive driving almost an hour each way (what a horrible detour) and teaching two Sunday school classes. The drive back was tougher and I found myself nodding off several times along the way. I do not advise driving through hairpin turns on a hill in this condition, by the way. So kids, do not try this at home!

Once home, I tried fending off the need to sleep by watching a movie, but kept nodding off on it – which is really bad since it was a subtitled one! The nap that followed was filled with dreams of rain and joint pain. Not exactly the escape I would prefer.

My face feels rubbery, which is usually a sign that I have gone way past my limits. Forget usually, it is always an indicator I have burned up all my energy.

Alright, I have done my duty in recording my health, time to post this.

Health 7-18-2012

Not the best day, but far from the worst of late. Either allergies have kicked into overdrive or I have gotten a cold. Given how bleary I am, it is probably the latter. Despite the sniffles, I did go out to eat with my father.

Now that the antibiotics are done, I am free to wander in sunlight again. The past two days I have hiked up to the mailbox in high heat without too much trouble, though today took a small eternity.

One lingering side effect from the bout with Lyme Disease has been bad headaches accompanied by swelling along the fissure lines of the skull. While this happens with very bad cycles of CFS for me, it is different in that it never completely subsides. I am hoping this fades in time, since it is making listening to music, watching movies, and playing video games painful.

Maybe things will be better tomorrow.

This, That, and the Other Thing

Things have been what I would classify as eventful since the weekend. Though in at least one case, more like eventful stalled – but more on that later. This is going to be a long post since I want to record the happenings for posterity. Hopefully it will not be too boring for other to read!

It all started with the celebration of a five year old’s birthday party. One of the families I home teach (explained here) is a young family with small children. The oldest one is a boy who has taken a shine to me for some inexplicable reason and is something of a problem child. Being very big and strong for his age, he is also very willful. He is also a miracle baby who should not exist according to doctors, for his mother was not supposed to be able to have children.

I have a code I live by that goes something like this: If a person who is not a moocher or leech attaches themselves to me, I feel an obligation to be as good a friend I can be to them. Now this is not a reluctant, foot dragging kind of “I have to do this” kind of feeling. Rather it is a sign to me that I need to make an effort and that the likelihood that God set this up is high.

So in this case, I have a little kid doing it and that is a first for me. It is also terrifying for a hopeless bachelor such as myself. While I am told I am good with children, my lack of experience with them makes it a very scary experience indeed. Maybe one day I will get past that, but not today.

You Ever Have One of Those Days?

You know, the ones where absolutely everything goes right?

That was yesterday for me and while grateful for it, I am still confused by it. Such a thing has not happened for me in many years. The only reason I know that has been so long is because I could not remember anything like it at all. It felt surreal, though I did remember to be thankful for the day. Even the little things all went perfectly.

Today should be more normal. It is time to pull books off of a book shelf and move it next to the HDTV, since the video collection has outgrown the built in storage in the living room. I can tell the Lyme Disease is pretty much gone by the fact that such a physical thing is on my to do list.

I also seem to be mentally sharper than recent memory records. Whether it is the NADH kicking in or getting over the Lyme bout, I cannot say. It could be both for all I know. What I do know is that writing and rewriting multiple reviews came easily instead of like pulling teeth, which is the norm for me.

Health 6-29-2012

Antibiotics are helping, but it is slow going. I will be glad to be rid of the headaches and at least the dry cough is gone. This all may be more expensive than expected, due to a change in health care providers. Minnesota moved a lot of us to UCare from MA and it turns out my old clinic is not on good terms with them. I will have to go doctor hunting and move to the Mayo Clinic system, which I do not have a high opinion of.

It could all be worse, a normal person would have been beaten into the ground by this, but since I already have CFS most of the symptoms are the same. Now to get some rest.

Health 5-21-2012

That was not a fun week to get through. Sinusitis, headaches, bouts of nausea, sneezing fits, and chills ebbed and flowed across the days. At first I thought it was allergies causing fits, but then remembered that they never make me nauseous. Multiple naps a day meant that I spent a lot of time in bed. It is hard to tell if it was a virus or if it was CFS reacting to my increased walking and other light exercise.

Since my life is one never ending cycle of frustration, you would think I would be used to this by now. At least I feel a little more energetic (relatively speaking) today and need to spray the gigantic weeds that have popped up over the past couple of weeks.

Health 5-8-2012

I thought I should record that after much careful stretching and alteration to sleeping positions, the new back problem has settled down to a dull ache. Of all things, it was watching my cats stretch that clued me in on how to do it properly.

Other than that, nothing much to report other than I will continue to tinker with my diet to improve things. A rice cooker has been ordered and I will be making that a mainstay in my eating. Also, I will start NADH (aka Enada) again next month after making enough room in my budget to afford it. It helped a great deal with CFS related cognition problems and I hated giving it up due to expense years ago.

Health 4-18-2012

One of the “joys” of having chronic fatigue syndrome is all the little infections I get, most of them being some form of upper respiratory problem. The latest has gone on since last Friday and is an inner ear issue with my right ear. Occasional dizziness has always been a part of the illness for me, but having the room swim around when I move my head is not.

So far no pain, so I refuse to waste anymore of the taxpayers money on a visit to the doctor. Instead, the H202 doses have gone back to daily and that has helped. Also, not taking my generic Zyrtec to allow the allergies to run wild should help burn the infection out. There has been improvement and I though I had it licked yesterday, but it is being mildly annoying today.

However, I am dead tired from a busy weekend and have not recovered at all from it. One way or another, I will make it to church on Sunday to substitute teach Gospel Doctrine. That should be fun, since I have not had the opportunity to do so before.

That reminds me, one of the odd bits about the dizziness is that it is worse sitting than standing as teaching Gospel Principles showed me this past Sunday. Weird. Bending over is not fun, of course.

The weather looks nice outside, wish I felt like taking full advantage of it.

Chronic Fatigue Syndrome Scandal Silver Lining?

Check out The New York Times article via Instapundit for the details.

Quotes that indicate something good may have come out of this fiasco:

The events of the past couple of years, though disheartening to chronic fatigue syndrome patients, may have a silver lining: Research into the disease, much of it privately financed, is ratcheting up.

and

“The disease had languished in the background at N.I.H. and C.D.C., and other scientists had not been paying much attention to it,” said John Coffin, a professor of molecular biology at Tufts University. “This has brought it back into attention.”

Dr. Coffin, who at first supported the mouse retrovirus theory but later disputed it, noted that the illness “does seem to have characteristics that would suggest infectious origins” and that other retroviruses could be involved.

It has been a bleak thing waiting for medical science to come up with anything to deal with the illness and I stopped holding my breath for even a treatment a long time ago. It is one of many things that caused me to lose what little faith I had left in government organizations to solve problems, but only one. My hopes are that the private sector’s ability to innovate will eventually pay off though I doubt it will be in my lifetime. So little is truly understood about the immune system that the science involved can only be considered to be in its infancy.

So Much for That

Instead of being at stake conference, I find myself relegated to sitting at home and typing this post. One of the things about having Chronic Fatigue Syndrome is that you often do not get to do what you badly want to. To a certain degree, your agency is curtailed.

The entire weekend was a bust because I overdid things on Friday. Though I will admit that given the unpredictability of the illness, I may have already been in trouble. So I did not go to the birthday party, the two sessions of stake conference, and the special meeting with Elder Quentin L. Cook of the Twelve. The latter is especially disappointing for me.

After knowing I was in no condition to go anywhere Saturday, I concentrated on resting up for today. It was to no avail and I knew I was in trouble from the moment I got up at 6 AM. My father offered to drive me, but it turns out the car would have needed gas anyway and though it was severely tempting, I would not violate the Sabbath. In the end, it would not have mattered because I was in very bad shape and would have been a zombie through the whole thing.

I have done that before and can testify to the fact that you come away with little to no benefit, since you don’t remember what was said. Instead of an uplifting and edifying experience, it becomes a miserable marathon of trying to stay awake. Only around 11:30 AM was I able to begin to function today to illustrate the problem.

Not being able to do things like this gnaws at my very soul and now I need to find my way out of the foul temper I am in. I will listen to my library of scriptures, hymns, and conference talks and hope to find some peace there.

Testing Is a Good Thing

Nope, I’m not writing about the scandal of Atlanta teachers cheating on test scores to make themselves and their classes look better. What I’m writing about is about personal testing of one’s limits. All too often we skate by through life without seeing where we are and what we can really achieve.

That’s actually quite a broad topic, so for the sake of brevity it will be narrowed down to one example. A personal one at that.

In a recent post, I mentioned how my times in Yahoo crossword puzzles had been doubled while I had the respiratory infection. While the puzzles are being used to sharpen my rusty word skills, they serve another purpose as well. That is to see how well my brain is functioning that day. Cognition is something heavily affected by CFS and while I can usually tell how well I’m doing there, it isn’t always the case. So a more objective test on a daily basis is helpful to see how I’m doing and assist me when I’m waffling about how alert I’m being.

Previously, I’d been using a game called Audiosurf on the Steam game service to judge how well my physical reflexes (and to a lesser degree, alertness) were doing on a given day. Having fallen out of that habit, today is the first day of reinstituting that test alongside the crossword puzzles. It is a fun game, especially since I only play on Mono Pro setting to avoid real aggravation. Since it also uses music from the player’s personal collection to generate the “roads”, the soundtrack is always good.

Testing my capabilities each day helps me assess and allocate my energy for the day. Energy management is a must with CFS. Overextending causes lengthy setbacks which require far too much down time to recover from. While unavoidable in general, limiting the severity increases what you can do in the long term.

Today was a fairly good day on both tests with the mind sharp enough and the reflexes at my normal level. Those mistakes were rust from not playing in a long time, I tell you!