Why is ME/CFS research so far behind the times?

Why is ME/CFS research and awareness so far behind the times?  The most oft cited answers to this question are (1) it is not life threatening and thus, not scary enough to grab attention, and (2) the name "chronic fatigue syndrome" downplays the seriousness of it.  Both are true, but there's more to it.  It's also a problem rooted in a muddled population of test subject.  

For more than 50 years, ME/CFS has been a "wastebasket diagnosis"--a category that doctors could dump any hard-to-diagnose patients into.  Health insurers offer doctors strong incentives to diagnose patients as cheaply as possible.  They place caps on the amount of blood tests a doctor can order at one time.  When doctors (and patients) get frustrated after a few rounds of negative blood tests, there's a temptation to give up and "just call it CFS," especially if the symptoms involved fatigue of any kind.

There are dozens of diseases that count fatigue as a symptom, and only one of them is true ME/CFS.  A short list of these other diseases would include Lyme disease, hypothyroidism, various auto immune diseases, Addison's disease, narcolepsy, and various psychological conditions.  There are many, many others.  Some believe that even "true ME/CFS" is really 2 or 3 separate conditions that are still being lumped into the same category.  

Some falsely diagnosed patients eventually go on to discover the true nature of their illness later in life.  Others, undoubtedly continue believing that they have ME/CFS for the rest of their lives.

Now, imagine the chaos that all these false diagnoses must have on any attempt to research ME/CFS.  A research laboratory hires 100 "CFS patients" to conduct a study on a new treatment.  The lab finds, after a year of experimental drug treatment, that their drug is effective for 65% of patients, but has no effect on the other 35%.  Unbeknownst to the lab, it is because 35% of the participants don't really have ME/CFS.  They think they do, but they don't...

A 65% success rate isn't going to grab any headlines in Science Magazine.  It's not likely to snag much research funding, and it certainly isn't going to gain FDA approval for the treatment.  Research money follows successful trials.  Scientists follow research money.  And true progress follows from devoted scientists.   

I don't know if this situation will improve over time.  Certainly, the forums are alive with ME/CFS patients who are attempting to "right" these wrongs on political, financial, scientific and legal fronts simultaneously.  But in the mean time, we are left to our own devices.  There are only a handful of institutes in the world devoted to studying ME/CFS, and they are mostly privately funded by ME/CFS sufferers.  

If one is determined to treat his/her ME/CFS with prescription drugs, the only choice may be to experiment with drugs that have only been approved to treat other conditions.  There are many examples, but they include Valcyte (approved for CMV virus), Ampligen (an immune booster), Immunovir (another immune booster), Rituximab (a cancer drug), and GcMAF (another cancer drug).  The point is, ME/CFS research is so far behind the times due to, in my opinion, all of the false diagnoses tainting the research data, that people with true ME/CFS are left to experiment on their own, without the benefit of (much) reliable research data.  

[Note: I would normally annotate my posts that summarize research, but this post is the product of several months worth of on-and-off research from too many sources to remember.  I will try to revisit this post and update it with annotations at a later time.] 

Things That Make It Better

This may seem like a strange topic to be posting after a crash, but bear with me.  There's no doubt that, overall, I have improved over the last 4 weeks.  While my "highs" aren't any higher (there seems to be a ceiling at about 90% that I can never break through), my "lows" haven't been as low or as long.  Before this period of improvement, I had about as many "low days" (which I define as below 75%) as high days. I would crash for a week at a time, before slowing climbing out of it.  For the last month, I've been at or above 75% the vast majority of the time, with crashes lasting only a day or two.  While it's still early, I am hopeful this trend will continue.

Unfortunately, it's difficult to pinpoint what, exactly, is helping me.  Beginning about 8-12 weeks ago, I began taking a raft of dietary supplements, adding still more in two or three waves.  So I cannot isolate one or two supplements as the source of my improvement.  But, if you believe my doctor and Dr. Teitelbaum's book, it's the combination of multiple supplements that benefit ME patients the most.  

Without further adieu, here is my updated list.  Note, this list has changed since my 12/18 post.  Anything marked with a * is something I've added to my doctor's recommendation based on my own personal research.

-D-Ribose – 5000mg, 2x day; 
-Coenyme Q10 – 200 mg day; 
-Multivitamin  2x day; 
-Vitamin D3 – 3-4000mg a day (for shortness of breath)*; 
-Acetyle L-Carnitine 650mg 1x day.*; 
-Zinc lozenges as needed*; 
-Magnesium Malate 300 mg*; 
-Immuno Stim, 3 capsules 2x day; 
-NT Factor by Researched Nutritionals 3 capsules 2x/day; 
-Liquid Vitamin B12 (sublingual drops), 1,000-1,500 mcg/day*; 
-Pro-Biotics, 1 capsule, two hours before and two hours after any meal; 
-Melatonin as needed for sleep. 
-Low carb diet with no processed sugars or processed foods.  

Things That Make It Worse: Altitude and Air Travel

I'm starting a series of posts tracking what makes my ME symptoms better and worse.  While I've discovered a number of things that have marginally improved my symptoms, today I'll focus on what makes them worse.

I've discovered that high altitudes and air travel seem to worsen my symptoms.  (I say "seem" because you can never be sure after one or two experiences.  There are too many other variables).

Two weeks ago, my wife and I took a trip to a family cabin in the nearby mountains, at an altitude of 5100 feet (554 meters).  Before we embarked, I was leery of the possible effects of the altitude, because one of my symptoms is shortness of breath.  I wondered how much worse the shortness of breath would be at high altitude.  On arriving at the cabin Friday night, I felt great, and wasn't fazed by the process of unpacking the car and lugging heavy bags up a steep flight of stairs.  I felt more-or-less normal that first night.

But by mid-morning the next morning, I started to crash.  Nausea, fatigue, light headedness and shortness of breath all came on strong.   By early afternoon, it was obvious that we needed to cut the vacation short and drive back down to sea level.  The strange thing is, I was feeling fine again the next day.  This made me fairly certain that the altitude caused the crash.

This past weekend, we flew by airliner to San Francisco for the Christmas holiday (a short 1 hour and 10 minute flight each way).  On the way to San Francisco, once again, I felt fine, but crashed the following day.  Again, however, it was a short crash, and I improved by the second day.  Unfortunately, the second day involved a return trip home.  I think it was these two trips in three days that ensured a more severe crash.  It could be the effects of the rapid altitude/pressure changes, or it could be the exposure to the notoriously germ-filled environments of airplane cabins and airports.  I'll never know, but I started going downhill yesterday and am much worse this morning.

Whatever the exact cause, I'll need to think carefully before planning any air travel in the future.  At the very least, I know that two flights in three days is probably too much.

Personal Update: Crashing

I seem to be crashing tonight, and I don't know why.  Suddenly, I'm experiencing the return of symptoms that I haven't felt in some time, like significant brain fog, nausea, dizziness, and as always, fatigue.  The nausea is particularly frustrating because I thought, potentially, I had put that behind me  when I changed to a low carb diet in early November.  Certainly, the low carb diet has helped regardless of this setback.

This doesn't seem to be a case of post exertional malaise (PEM) because I didn't do anything out of the ordinary yesterday.  I suspect there may be a dietary cause because I consumed much more dairy than ordinary yesterday, and I have also been eating strips of prociutto as part of my dinner.  Several authors in the book "Recovery from CFS" mentioned the elimination of pork from their diets as a key factor in CFS diets.  I couldn't understand why pork would be different from any other meat until I read the following tonight, on a website concerning candida diets:

"Pork cells contain retroviruses that survive cooking and may be harmful for those with a weakened digestive system."

I'll have to experiment further and see if dairy or pork is a possible culprit.

Find an M.E. Specialist

I added a new feature to the blog today: an M.E. doctor database.  (See sidebar on right side of page, near the bottom).  Select your country and state from the drop down menus, and the database will produce a list of ME/CFS/CFIDS specialists in your area.

What triggered my M.E.?

In my 12/18 post, I discussed my doctor's analogy describing M.E. as a "blown fuse" in the hypothalamus.  In yesterday's post, I mentioned one possible contributing cause to that blown fuse: my Gilbert's syndrome.  I want to mention 2 other possibilities.  I don't think these possibilities are mutually exclusive.  It may have been a combination of these factors that overloaded the system and caused the fuse to blow:

1.  Stomach acid medication:  Prior to 2005, I had some severe stomach pains.   So, for about 6 years, from 2005 through early 2011, I took a prescription medication called Nexium to reduce my body's production of stomach acid.   I finally stopped taking the Nexium in April 2011 when I realized that I was fine without it.  Whatever stomach issues I once had were gone.

It wasn't until after I came down with M.E., and started researching, that I discovered that medications like Nexium (the so-called "proton pump inhibitors") also block the body's absorption of vitamin B12.  For those familiar with M.E. research, vitamin B12 deficiencies are found in a large percentage of those with M.E., and many treatment protocols call for the replenishment of B12 (among other things).  And by the way, I came across this information by accident, when searching for causes of B12 deficiency.  It wasn't as if I was actively looking to blame everything on Nexium.

As if that weren't suspicious enough, I've also learned that stomach acid is often referred to as the body's "primary defense" against infection.   Given that many researchers attribute M.E. onset to an overload of viral and/or bacterial infections, which overwhelm the system and "blow the fuse," it seems that a reduction of this primary defense could have been a key factor in my contraction of M.E.  It's as if I'd built a castle with the highest walls and deepest moat, but forgot the most obvious thing...to close the front door.

2.   TDAP Immunization.  After fighting off an initial wave of symptoms in June, I seemed to have recovered to about 95%.  I stayed at somewhere between 95-98% for the next three weeks.  So, towards the end of that period, I figured it was safe to get my TDAP shot.  (I was running out of time before my daughter was to be born).  Previously, my doctor had advised me to wait until I felt better to get the immunization.  Since immunizations involve the injection of "killed" viruses into the body, it is not a good idea to get an immunization when one's immune system is already working on another problem.  Well, I figured I was safe getting the injection when I felt 95% recovered.  A few days later, I came crashing back down.

I'll also note (and again, this is anecdote), the books and message boards are full of people who say they came down with M.E. after getting immunized.

In the end, it could easily have been something else.  I'll probably never know, but maybe it's better that way...

The Connection between ME and Gilbert’s Syndrome

For as long as I can remember, whenever I received the results of a blood test, doctors noted that I had elevated levels of bilirubin. Bilirubin is a substance created by the liver that breaks down dead red blood cells. If you have high levels of bilirubin, you are considered to have Gilbert's (pronounced "jeel-bears") Syndrome. It is a genetic trait, which in my case, I inherited from my mother. When I would ask what it means to have Gilbert's, the doctors would always say that "it's an insignificant finding." "It doesn't harm you." But I always wondered, why is there a name for it? Why is it called a syndrome? And why do the blood test results list a "normal range"?

Incidentally, the normal range for bilirubin is 0.2 - 1.2 mg/dl. My results typically run between 1.4 and 1.8. This is mildly high. People who have severe cases of Gilbert's run in the 3.0 - 4.0 range, and they often appear yellow and jaundiced. Thankfully, I don't have yellow skin.

Dr. Charles Shepherd, an English researcher of ME, found that Gilbert's is often associated with ME. His studies showed that 16% of people with ME have Gilbert's. Conversely, a website on Gilbert's states that ""People with GS are four times more likely to have Chronic Fatigue Syndrome than others." What's more, the symptoms of people with Gilbert's sound identical to ME's symptoms (see link above). Could it be that many people who report suffering symptoms of GS actually have ME, triggered by GS? I think so.

There are a few well-known supplements to aid liver function, the most popular of which is milk thistle. In the near future, I may experiment with milk thistle to see if it helps my ME.

[3/22/12 update: I've been talking milk thistle capsules 3x/day since January and have not noticed a difference in how I feel, although one blood test in late January showed my bilirubin within normal limits for the first time in my life! A subsequent blood test, however, was elevated again.]

On a positive note, Dr. Rich VanK, who is famous for his CFS research, recently noted in a message board discussion that he has mild Gilbert's, and added the following:

...But the cool thing about Gilbert's syndrome is that it has been found to provide protection against coronary artery disease. It is thought that this is due to bilirubin acting as an antioxidant.

Waiter! Extra helping of mutton, please!

Prognosis

Internet information on ME is wildly inconsistent, reflecting the underfunded state of ME research.  Sites with outdated theories about ME outrank those with updated information.  But, perhaps the most confusing topic is ME prognosis.  For those of us who are relatively new to this condition, we'd like to know, "what are my chances of getting well again?"   Well, here's why it's so frustrating to try to find an answer to that question:

1.  Some websites, such as this, claim that as much as 50% of ME sufferers recover.  But even if true, it raises the question, what is meant by "recovery."  Clearly this article isn't referring to full recovery.  I am already more or less "functional," but I'd like to know if I'll be able to exercise again, travel to foreign countries again, coach my kids in sports, and other high-energy activities.

2.  Other studies show recovery rates of as little as 5%.  What? 

3.  My doctor (an ME specialist) says there is no "cure" per se, but sustained remission is possible.  As long as "sustained" means "years at a time," and "remission" means "full return to normal activities," I'll take it!  But, he didn't exactly say that.

4.  The CFS message boards are full of people who have had CFS for years or decades.   At the same time, the message boards are completely devoid of people who have successfully recovered from CFS.  Is recovery that rare, or do people move on with their lives after recovery?

5.  Anecdotally, I read a book called Recovery from CFS: 50 Stories.  Upon buying the book, I thought, "Great.  Now I know of at least 50 people who have recovered.  That's...something."  But, after reading the book, it's not clear that all of the authors truly had CFS.  One gentleman, for instance, claimed to have recovered after renouncing a centuries-old masonic curse!  'Nuff said.

6.  Also anecdotally, I personally know of at least 3 people who were diagnosed with CFS and have recovered.

7.  [7/30/12 update:  This website says that, of those who recovery, most recover in the 3 to 6 year range.]

So, I'm left with the vague impression that my chances of long-term remission are probably somewhere between 5 and 50%.  I prefer to think they are closer to 50% because I am relatively young, in-shape (other than the CFS), aggressively seeking treatment, and my case has been relatively mild, so far.  Based on this list of factors, it would seem that I stand the best chance of recovery.

My Doctor's Diagnosis and Treatment Plan

I posted the following on a CFS message board the day I was diagnosed.  Rather than type it all out again, here it is, with a few minor edits:

I was diagnosed with ME today, almost 6 months to the day after first becoming sick. My symptoms are too many to list, but the main ones are: extreme fatigue, shortness of breath, chronic sore throat, and intermittent insomnia. Approximately 1 month ago, after having visited 9 doctors for my wide-ranging symptoms, I finally self-diagnosed ME. We had ruled out everything else under the sun. That self-diagnosis led me to find a doctor’s practice group that specializes in ME. I found them using this CFS doctor database: http://www.chronicfatiguetreatments.com/wordpress/treatments/chronic-fatigue-doctors/ Today was my first appointment. Sure enough, the doctor (I'll call him Dr. W) diagnosed me with CFS without reservation (I prefer the "ME" designation, and use it synonymous here). The appointment lasted nearly 2 hours, and I learned much in that time. I want to share some of that information in case it helps others get a diagnosis or treatment. Please read the following with your own appropriate level of skepticism. This is only one doctor’s opinion. Note: If you’ve already read Dr. Teitelbaum’s book FFTF, much of this is review. BUT, I found it interesting to note where my doctor disagreed or altered the recommendations of Dr. Teitelbaum. What exactly is ME and what causes it? You can drive yourself crazy wading through all of the conflicting information about ME in the internet and in books. It seems there are 4 or 5 common theories: (1) It’s a chronic viral infection, usually involving EBV, (2) an immune system defect, (3) a defective hypothalamus, (4) a hormonal imbalance (HPA axis), or (5) mitochondrial dysfunction. I wanted to know if there is a unified theory that ties all of this together. The doctor said, yes: It is believed that ME is usually triggered by either a virus or a hormonal imbalance, which causes the hypothalamus to become defective. The hypothalamus controls your immune system, hormone levels, and mitochondrial function. After your hypothalamus stops working properly, your immune system is compromised, and you become more prone to other infections (both viral and bacterial, especially candida). So, infections can be both a cause and a symptom. Same with hormonal imbalances. The hypothalamus is the lynchpin in the middle of all this. Prognosis: The good news is that “most” people (according to Dr. W), with proper treatment, are able to manage their symptoms and live a more-or-less normal life. [3/28/2012 edit: Wow, this seems WAY off the mark!].   The goal with treatment is to force the ME into remission. Sadly, there is no cure at this time. But, indefinite remission is possible. Everyone responds differently to treatment. Promising research is being done with stem cells, so it’s possible we may see a cure in the future. Diagnosis: For me, the doctor diagnosed CFS in several ways. First, he looked at the ½” stack of blood work printouts that I have collected over the last 6 months. He noted that thyroid levels, while technically “in range,” were at the far low end of the range. I had brought this to the attention of previous physicians, but they dismissed it as irrelevant. (This problem of erroneous “normal ranges” is echoed in Dr. Teitelbaum’s book.) The doctor then confirmed the low thyroid levels through a “Thyroflex test.” This is a reflex test that measures the level of thyroid hormone in your tissues, which is better than a blood test. This test involves placing sensors on your hand while tapping your elbow. The sensors are then read by a computer. This test confirmed low thyroid levels. I also have very cold hands and feet, which is another indicator of hypothyroidism. Second, ME was diagnosed by simply looking into my mouth. Candida overgrowth was apparent by a white film on my tongue. Candida apparently often follows after someone develops ME, due to the weakened immune system. Third, my blood tests showed high levels of EBV antibodies. And fourth, I meet the general CDC guidelines for CFS diagnosis, and my past blood tests had already ruled out everything else that could cause my symptoms. XMRV: I asked if the XMRV theory of ME was considered dead. Based on what I have read recently, I thought the research community had debunked that theory. He said no, it remains an open question, but there isn’t any point in testing for it. It is an expensive test and there is nothing they can do about it if you test positive. Lyme: He said he treats many Lyme patients and my symptoms are not consistent with Lyme. I previously had the Western Blot test for Lyme, which was negative. (While the Western Blot is better than the old ELISA test, it is still severely flawed. According to Dr. W, there is a brand new test for Lyme that is expensive, but worth it if you have the symptoms). Recommended Treatment. Diet: As of two weeks ago, I had already changed by diet to a low-carb, low-sugar diet. I did this after reading the book “Recovery from CFS: 50 personal stories.” The book is exactly what the title suggests: 50 short stories from people who claim to have recovered from ME. [Edit: I have some major criticisms of this book, but they don't detract from my point here]. I read the book specifically to see what remedies were mentioned most frequently. The most common recommendations were variations on low-carb, low-sugar diets. No less than 5 of the authors recommended a book called: “Life Without Bread.” So I read that book too. I found the evidence in “Life Without Bread” to be very convincing. Dr. W emphatically agreed with this. While a low-carb diet isn’t a cure-all, it seems to be a key piece of the puzzle. Hormomes: There is no doubt that Dr. W will be giving me hormone treatments. But the types and amounts will depend the results of a new set of blood tests. Supplements: I know many here are jaded by the endless recommendations of supplements. Dr. W emphasized that I need to not give up too early, and stick with this full regimen for at least 4 to 6 months. The full regimen is: 1. A multivitamin powder, 2. Acetyl-L-carnitine 3. Coenzyme Q 4. Vitamin D3 5. D-Ribose 6. Immune system support. They have their own proprietary brand called ImmuneStim 7. Pro-biotic, to balance intestinal bacteria and get rid of candida. 8. And melatonin for better sleep. Needless to say, I will be a pill popping machine for at least the next 4-6 months. Exercise: Dr. W said I should not try to exercise until “we get things under control.” I don't think I could anyway. Final Thoughts: I don’t know if this will work, but I do believe that the key to sending ME into remission is “getting all of the puzzle pieces into place at the same time,” and then sticking with it long enough to recover.

With that, I've completed the portion of this blog where I catch up on past history.  All posts from now on will focus on the present and future.  

From Onset to Diagnosis – 6 Months (Cont.)

(Continued from post below)


Fourth Month
By month four, I had all but given up on the doctors in my local practice group.  They'd been given their chance to get it right--to diagnosis me correctly--and they failed.  At about this time, a family friend recommended a hospital in Santa Barbara (the Sansum Clinic) that, supposedly, specialized in hard-to-diagnose cases.  After discussing the costs with my wife, we decided to visit the clinic.  At that time, we didn't have a "plan B," so this was my best and only option.

I took a few days off from work and we made a small vacation out of it.  This would be our first road-trip with our daughter, and the trip luckily coincided with one of my better weeks.  Even now, the trip remains one of the few good memories from that pre-diagnosis period.

At Sansum I met with two doctors, a GP and a rheumatologist.  Ultimately, neither were able to diagnose me, but they were able to explain, clearly and understandably, why many of my concerns (auto immune disorder, Gilbert's syndrome, cancer, and others) were "ruled out."  In the end, this freed me up to continue my search for a diagnosis in other, new directions.

The other positive aspect of this trip was that the Sansum doctors were the first to consider M.E. as a realistic explanation of my symptoms.  They freely admitted that their knowledge on the subject was limited, but the GP explained that ME is not yet fully understood and that research is ongoing.  He also cited a couple of promising recent studies.  This would become important later.

Back home, I visited another rheumatologist in my home town.  This appointment had already been scheduled before the Santa Barbara trip and so, I figured 'why not?'  I didn't have any better ideas.  This doctor, ordered tests for stool samples to rule out celiac's disease and gastrointestinal parasites.  Both were negative.  I had struck out again.

Fifth month

Out of other ideas, I decided to stop looking for a doctors who could explain all of my symptoms, and simply find someone who could treat each one individually.  At the same time, I held out hope that one of these specialists would discover something that would explain all of the other symptoms.  And so I met with an Ear, Nose and Throat specialist (ENT) about my sore throats, and a pulmonologist, about my shortness of breath.

The ENT was useless.  Enough said.  The pulmonologist, at least, had some interesting theories.  He ruled out Valley Fever through blood tests, and ordered an exercise test that would evaluate my entire cardiovascular system while I rode a stationary bicycle.  In the end, I passed this test in the upper range of the expected.  And while the test caused me to "crash" the following day, at least I learned how far I can push my physical endurance.  As long as I am willing to put up with the subsequent crash (which lasted a week this time), it's nice to know that I can do it if I need to.

Around the beginning of this month, I also began to keep a daily health log, to see if I could determine what caused me to continually improve and then regress.  I gave myself a grade for my overall health each day, along with recording my daily diet, activities, weight, blood pressure, temperature, amount of sleep, nausea, and fatigue. (I still do this.)

Sixth month
By this time, I had a stack of lab results and medical technician reports almost a half inch thick...and nothing to show for it.  And so, I started researching M.E. because, well, we'd ruled out everything else.  I hit the blogs, message boards and books.  I read a book by a self-styled M.E. "specialist," Dr. Teitelbaum [edit: who I would later discover is not held in high regard] and soon knew without much doubt that I had M.E.  It was a huge relief to finally read accounts from people who's experiences matched mine so closely.  Above all, reading about the cyclical nature of M.E.'s symptoms was a bit of an epiphany.  Few other illnesses follow this mercurial pattern.

In the next several weeks, I researched treatment options and, eventually, found a local doctors' practice group that specializes in M.E.  I made an appointment.  By the end of the month, I finally had a diagnosis.

The diagnosis came with mixed feelings.  Gone was any possibility that this was all some big misunderstanding--that there was a simple diagnosis, and simple cure, that we had all overlooked.  But at least I could finally move on to the next phase...treatment.

(More on my doctor's diagnosis in the next post...)

From Onset to Diagnosis – 6 Months

First Month – Confused But Not Worried

If I would have known that June 4, 2011 was the last day I would feel well, possibly ever, I would have spent it doing something other than installing an attic ladder. But, sadly, that's the last thing I did as a fully healthy person. I got sick that night with what felt like the worst flu I'd ever had. I call it "the worst" because it came with seemingly every symptom associated with flu, all at once. Fever, nausea, headache, sore throat, swollen glands…basically all 15 of the symptoms listed on my "Symptoms" post.

When I didn't improve after a week, I visited my family doctor (GP), who prescribed antibiotics (Cipro). In the meantime, my standard CBC blood panel came back negative. What a relief, I thought, I'll be back at work in a few days. But the Cipro didn't help. I returned to work anyway, and my coworkers remarked how pale and sickly I appeared.  I felt dizzy every time I stood up.

After another course of antibiotics failed to cure me, my doctor referred me to an infectious disease specialist, Dr. S.A. Doctor S.A. ran her own set of blood tests, checking for a handful of scary viruses, including HIV! Again, nothing. On my return visit, she said I probably had "an unidentified virus." "There are hundreds of viruses that can make you feel this way, and we can't test for them all," she said. "But, usually it clears up in about a month. Six weeks, max."

Second Month – False Relief

More or less as Dr. S.A. predicted, I started to feel better after 5 weeks. It was just a really nasty bug, I thought, but it's behind me now. Only, it didn't go away completely. I improved to about 95%, but still my body was telling me, "don't go back to your workouts yet." I was functional again, but I could sense that there was something still lurking. I figured that my body simply needed a little extra time killing off the last hold-out colonies of that nasty virus.

Then, after three weeks of life at 95%, it all came back. I woke up one morning and, all my symptoms were back. It was like someone had reset the clock to June 5^th again.

I returned to Dr. S.A., who promptly dismissed her former "virus theory." "A virus doesn't behave this way," she explained. "Once your body kills the virus, it's gone. It doesn't come back."

"What is it then?" I asked.

"I don't know," she said. "Let's run some more blood tests."

The blood tests, of course, all came back with what Dr. S.A. said were 'normal' results.

Third Month – Panic

The third month began with a couple of trips to a new specialist, a urologist. One of my symptoms was (and still is) this strange discomfort in the area of my kidneys. It's not pain exactly, but an internal swelling. The urologist ordered a CT scan of my abdomen, but everything appeared normal. "Check back with your GP," he said.  In the meantime, I also visted an Immunologist, who tested for Lyme Disease and prophyrria.  Negative.

My GP literally threw her hands in the air. She didn't know what to do with me. Her only other idea was to run another CBC panel, "just to see if the last one missed anything."

Around this time, I decided that 'my doctors are clueless,' and 'I need to take matters into my own hands.' So I began Googling my symptoms. This is one of the worst things you can do. Little did I know at the time, but Google has a tendency to list "Cancer" at or near the top of just about any search result involving medical symptoms. This misunderstanding is not Goolge's fault, really. It's a by-product of Google's algorithm. We've all come to trust Google implicitly, because it's usually so accurate at predicting the correct answers to our questions. But we forget that Google isn't in the business of giving us the "right" answer. It's in the business of serving up the links we are most likely to click. When people search complex sets of symptoms, they want to rule out cancer first. So, over time, "cancer" links rise to the top of medical search results.

So, I became, if not convinced, then at least suspicious, that I had "the big C," specifically, lymphoma. Other factors contributed to this misunderstanding. For one, the only other condition that consistently showed up on my Google searches of my symptoms was ME/CFS/CFIDS.  But every time I asked one of my doctors about it, they'd brush it aside with a dismissive gesture.

Another factor was that my GP didn't flinch when I asked for a referral to an oncologist. On some level, I was hoping she'd laugh in my face when I asked for it. "Cancer," she'd say, laughing. "Get out of here. You're letting your imagination get the better of you." Instead, she deadpanned, "well, I hope it's not that," and handed me a referral.

At times, I became so convinced that I had cancer, I moved beyond the question of "if" and began planning as if I'd already been diagnosed. I found myself researching treatment options. I considered videotaping a few words of advice to my infant daughter, in the event that I died. I'm embarrassed to admit this now. It seems a little hysterical. But there was a certain logic behind it. I mean, the oncologist didn't exactly balk when I explained my symptoms.  He had to wait for his own set of blood tests before ruling in out.  And even then, he said, "you can never 'rule out' cancer."

But alas, after two more trips to the oncologist, more blood work, and another CT scan, I was finally convinced that I didn't have cancer.

Now, whenever I start feeling depressed about ME, I think back to when I thought I had cancer.

(To be continued…)


 

My Symptoms

They say that, other than fatigue, every PWC experiences a different set of symptoms.  But from what I've read on CFS message boards, most of us share the majority of our symptoms.  We just list them in different orders.  Everyone lists fatigue first.  After that, some list IBS, others sore throats, others insomnia, and on down the list.

Here's my list, cut and pasted directly from the list I gave to my doctors:

100% of the time
1.  Fatigue.  Amount of sleep has no effect.

60-80% of the time
2.  Kidney area swelling/discomfort.  Bilateral
3.  Shortness of breath.  Both at rest and walking.
4.  Sniffles.  Post nasal drip.
5.  Sore throat.
6.  Low blood pressure.  Dizziness on standing.
7.  Loss of appetite.  (Lost 15 pounds in first month.)

Occasionally
8.  Insomnia – once or twice a week.
9.  IBS-type symptoms
10.  Swollen glands.  Neck and right armpit.
11.  Loss of concentration.  Forgetfulness.
12.  Tenderness and swelling in the abdomen.

Rarely
13.  Headaches
14.  Groin pain
15.  Muscle twitches

Why I'm publishing pseudonymously

My real name is not Patrick W. Calvin.  That's a pseudonym.  (The picture, though, is real.)  I settled on that name after reading one too many articles that refer to CFS patients as "PWCs" or "persons with CFS."

It don't like the idea of publishing this blog under a pseudonym because, in some sense, it devalues the whole endeavor.  The appeal of a blog is that it is personal, often intimately so.  As readers, we trust information when the author backs it up with his or her own identity.  Or rather, we distrust those who hide behind screen names, because they can say anything they want with impugnity.

But I don't have much choice.  I am an attorney and a partner in my law firm.  (I know, I know.  But I swear, I'm one of the honest ones.  Really!  I am!)  I'm lucky in that my case of ME is currently mild enough that I've been able to continue working without missing much time.

Clients are very thorough when vetting their potential attorney hires--and they should be.  It's an expensive proposition.  I can't have potential clients searching my name and discovering that I have some sort of condition that they've never heard of and don't understand.   I have not allowed ME to affect the quality of my legal work, so in my view, it's none of their business.  In some ways, the changes I've made to my lifestyle have actually improved my legal work.  But the clients have no way of knowing that.  So, unfortunately, I have to adopt this other identity.

Couldn't I use my first name only?  Not with my first name.  I'm not a "John" or a "Matt"; my first name is pretty unique.  Had I used my real first name, a potential client could easily find this blog by typing in my first name a few other known facts about me.

Why I started this blog

The web already contains plenty of blogs about ME/CFIDS, some of which are, apparently, award winners.  Most have already been in existence for years.  Would mine just be white noise?  Probably.  Would I just be giving myself another assignment at a time when I should be reducing my responsibilities?  Yes.  But I decided to go through with it anyway, for a few reasons.

1.   I've been obsessive about researching ME and its treatments, but the available information is scattered, confusing and, often conflicting.  This is my attempt to organize and digest my own findings.  Sure, I could keep a regular log, but the illusion that someone might actually read my Blog will, hopefully, keep me motivated.

2.  I've been sending regular email updates to my family and friends without knowing whether, at times, it's too much information.  I don't want my family and friends to feel like it's a homework assignment; like they have to read it.  This way, they can check in with the blog when/if they want.

3.  It will be cathartic.

4.  I don't see any other ME blogs by 35 year old male attorneys from California.  So I've got that demographic locked down!  Kidding.  

5.  And finally, I'm trying to make lemonade out of a rotting pile of manure here.  Most of my former hobbies, like surfing and jogging, involved levels of activity that are now impossible or, at least, unwise.  So I need to replace those things with static activities, and sitting at a desk typing happens to be something I can still do.  So here's to a new "adventure"!