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.

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…

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 6-22-2012

I hate posting about my health. So on with it so I can be done with it.

It has not been a good week. The right bronchial has been suffering congestion and things morphed into a sore throat last night. The “rash” is most likely a spider bite with a bad reaction, which would explain the increased pain and muscle stiffness in the neck. Proving just how random my body can be, the left middle finger is swollen and painful in the outermost joint – for no perceivable reason.

Going out for pizza Wednesday night turned into an ordeal of having trouble breathing due to the congestion, though I haven’t ruled out a cascading reaction to the bite. At least I have been able to get some sleep the last two nights despite the pain. No walks this week and I am unhappy about it.

It looks nice out, wish I could enjoy it.

Health 6-19-2012

The pain I have been suffering has been slowly getting less intense. There is an odd rash on my neck that popped up around the time this started and it has gotten larger. Part of the pain at night has been an abnormally stiff neck and coughing. If it does not go away, time to see a doctor.

Something I forgot to report: A couple of weeks ago, I stayed overnight with some friends who had the air conditioner cranked up beyond what I was used to. Despite having covers and a blanket, I began shivering violently. While I have had this happen before when cold, the severity was a new experience – as was actually generating significant heat from it. This is interesting and a positive change, I think.

My suspicion is that the H202 therapy I went through changed quite a few small things in my system. It made me tolerant to rice, it has helped my circulation, helped stave off bronchitis, and I did not have a bout of eczema this winter. I’ve thought of CFS as being a “death by a thousand cuts” kind of illness, so it is strange to experience something positive working along the same lines.

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.

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.

Please Don't Let Me Be Misunderstood

After being really ill for the past week, I've had time to think on the whole subject of being disabled by Chronic Fatigue Syndrome. I usually don't like to think about it much, as just dealing with it eats enough precious time as it is. But I've been so sick that I haven't been able to read anything of depth, whether it be scriptures, non-fiction, editorials, or fiction. Even TV shows and movies have been hard to focus on this week. So I've been left to think about things and contemplate things (cue ominous music). Or not so ominous, just a good Animals tune.

One thing that jumped out at me is how relatively healthy people simply can't comprehend the disability I have. I don't "look" sick, I'm not in a wheelchair, I'm not walking with braces, I don't have hair falling out... In other words it isn't apparent to the naked eye. Oh there are times I am pale as a ghost, had my father worried the one night I went out to get some things done this week, but most of the time I look normal. This leads to people thinking I don't try hard enough, or that it is in my head, or I'm just lazy. Oh the irony in the last, as I have a very bad tendency to push with every ounce of energy I've got. Which isn't always the smartest thing to do as it makes me even more ill, but there's that whole being "type A personality" thing I've got going. So I end up being misunderstood, which adds insult to injury on occasion. I can't stand being misunderstood.

Interestingly enough, this line of thinking takes me to the spiritual side of things. So I'm not understood, perhaps thought less of -- does this give me the right to be angry about it? Not really. Jesus Christ taught us that we must forgive others in order to be forgiven ourselves (Matt 6:14-15, Luke 6:37). Not always the easiest thing to do, but a necessary thing to do lest bitterness creep into my soul. I often think, "Father, forgive them; for they know not what they do" (Luke 23:34) when I run into people who wronged me in the past or who are wronging others. So much cruelty and meanness comes from simple ignorance or unwillingness to walk in another's shoes. Even more comes from the simple sin of not thinking at all, for reason is one of our more Divine gifts and when exercised properly leads to compassion and caring. It also can lead to forgiveness.

I'll finish this post with a quote from Doctrine and Covenants, section 64, verses 10-11:

I, the Lord, will forgive whom I will forgive, but of you it is required to forgive all men. And ye ought to say in your hearts -- let God judge between me and thee, and reward thee according to thy deeds.

Something to contemplate on a sunny Sabbath day.