Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Thursday, February 28, 2013

How important is heavy metal detox?

After nearly completing Dr. Yakso's book, I'm wondering if I underestimated the importance of heavy metal detox in recovery from ME/CFS and other neuro-immune conditions.  Dr. Yakso seems to think it plays a major role.

Back in late November, I wrote about the improvement I experienced beginning in early October, and which mostly continues even today.  I attributed that improvement to the FIR sauna, mainly because it was the nearest major change in my treatments.  Now I'm seriously questioning if the DMSA-based heavy metal detox regimen that I did in September wasn't a factor.  I'd previously disregarded the importance of heavy metal detox because I simply didn't know much about it.  I had reluctantly agreed to a month-long detox protocol only at the insistence of Dr. W. 

It's interesting to note now that the heavy metal detox was even closer in time to the beginning of my improvement.  Whereas I started the sauna treatments in early August, I began the heavy metal detox in early September and completed the protocol just as my improvements were beginning in early October, 2012.  Coincidence?  

I'll eventually learn more about how critical the detox protocol was to my improvement.  According to Dr. Yakso, there is much more detoxification to be done.  So if I try again and I improve even further, I'll have a better understanding.  But, since all of the steps in Dr. Yakso's plan must be implemented in a certain order, I won't get to the heavy metal detox again for many months.

If anyone is interested, below are the ingredients of the detox supplement I took last time (along with a multi-mineral, which is essential to replace beneficial metals that are also excreted in in the process.)  It's mostly a DMSA and EDTA-based detox.  

Wednesday, February 27, 2013

Stevia may not be ideal for ME/CFS patients

Admittedly, I'm a fan of stevia and use it (or products with it) at least 3 or 4 times a week.  But for those PWMEs with low blood pressure and/or POTS/OI issues, you may want to avoid stevia or, at least, use it sparingly.  Stevia lowers blood pressure, and this can be a problem for people who already have low blood pressure.  [1] [2]

Stevia, it turns out, also helps lower blood sugar and is sometimes used as a treatment for those with hyperglycemia.  Since my blood sugar tends to run a little high even after switching to a low carb diet, I will continue to use stevia in moderation.  Incidentally, my blood pressure normalized after the first 6 months of having ME/CFS, so I'm more concerned about blood sugar than blood pressure, but I realize many of us have the opposite concern.

Tuesday, February 26, 2013

Added "Follow By E-Mail"....again

I added the "Follow By Email" feature back to the sidebar on the right.  Previously, people told me it didn't always work and they weren't receiving emails when I posted.  I tried, but I was never able to solve the problem, so I just deleted the feature.

I decided to add it back however, hoping that Blogger may have worked out the kinks in the feature.  If you decide to follow by email: first, thank you.  Second, could you please let me know if the feature works?


On a mission

Do you ever get in one of those cycles where you're sort of reinvigorated to research treatments?  Ever since I started reading Dr. Yasko's book on methylation treatments, I seem to have caught a 'second wind.'  I wish I could stay home from work today and spend all day finishing the book and organizing a step-by-step plan to implement Dr. Yasko's treatment program, tailored to my genetic results.  When I catch on to something that I truly believe will help me take another step toward improvement, it becomes hard to get it out of my mind.  I'll write more on it later, but I am convinced that methylation (or lack thereof) is a key to improved health for me.

I'll explain why soon....

Friday, February 22, 2013

How to win an argument about ME/CFS on the internet

The ME/CFS community is playing an image tug-of-war with ignorant people.  Every time an ME/CFS article is published in a major internet publication, we have a chance to make or lose points in a public perception game.  These chances often occur in the comments section of an article, or in other public forums where ME/CFS is discussed.  Make no mistake, comments sections do influence public perception.

Overall, I think we're ever so slowly making progress.  But along the way, it seems we sometimes say things that unintentionally harm our cause.  Well-meaning PWMEs sometimes type quick, emotional responses that, I believe, damage the public perception of ME/CFS.

I'm not trying to tell anyone how to conduct themselves.  Ultimately, you will type whatever you want.  But I believe PWMEs should be mindful that when they post in a public forum as a PWME, like it or not, they represent the entire community.  At least, that's how it's perceived by the average reader.

In my 10+ years of practicing law, I've gradually learned how to better-and-better handle an argument.  Basically, arguing is what I do for a living.  I write persuasively.  I try to win arguments and influence decision makers with the written word.  When I'm not doing that, I'm often preparing witnesses to give testimony, advising them how to maintain credibility and avoid verbal traps.  So let me humbly offer a few "Do's" and "Don'ts" for internet arguments.

Do Be Mindful of the Entire Audience

If you respond to an ignorant comment, be aware that you're not conducting a private debate with the ignoramus.  On larger internet publications, hundreds or thousands of people will read your exchange. And it stays there forever. Most likely, the ignoramus is beyond hope and nothing you can say will change his/her opinion.  Instead, think of your exchange with the ignoramus as a public debate.  You must present yourself as more appealing, more humble, more informed, more level-headed, and thus, more likable.  Forget about what the original poster thinks.  

You can act like you're addressing the ignoramus directly, but really you're addressing everyone else.  It's not unlike a lawyer cross-examining a witness at trial.  The lawyer engages the witness in a type of conversation, but the real point is to influence the jury.  

Don't Show Emotion

Who would blame us for occasionally lashing out?  Our illness is such an emotionally heavy topic, and we're treated so unfairly at times, it often requires a feat of willpower not to respond angrily.  

Don't. This means, don't use strong words, name calling, personal attacks, CAPS (even for one word), and don't overuse superlatives. Stay cool and factual.

An emotional argument is one of the lowest forms of argument.  For PWMEs it's especially dangerous because there is a group of people who want to make us seem crazy, cuckoo, nutty, crackers. (I'm looking at you, British psychiatrists,...among others.)  Any written communication by a PWME showing the slightest bit of emotion will be seen by them as confirming that notion.  No, it doesn't make sense and it's not fair.  But because of an unfair prejudice by some, we need to hold ourselves to a higher standard of conduct.  Disadvantaged groups have arrived at this realization since time immemorial.

Some people fall into the trap of thinking that their strong, angry words will bolster their credibility.  They think: "If the reader can sense how angry I am, they'll see that the anger comes from the conviction of truth."  If you thought that, you'd be wrong.  There are many conclusions readers draw from emotional words, and truth is pretty far down the list.  Most likely they'll perceive it as a character flawthat you're too dramaticor as a way of covering up weaknesses in your argument.     

Do Acknowledge Fakers and the Misdiagnosed

One of the most common statements we see from ME naysayers goes something like this: "My neighbor has CFS and he's just the laziest person I've ever met.  He's a faker, just like the rest of you."  Or a variation goes: "My sister thought she had CFS for 10 years, but it turned out she had an autoimmune disease.  It's just a wastebasket diagnosis for stumped doctors."  How are you supposed to respond to that?  We can't verify the neighbor's situation.  We don't even know if the sister really exists.  But it does seem that those who have the strongest opinions against ME/CFS usually offer an anecdote like this.

There's no sense in defending the neighbor (we don't know him), but I also don't think this type of statement should go unchallenged.  We should be willing to acknowledge that, while exceedingly rare, there are a few frauds who hide under the diagnosis of CFS.  (Even Dr. Chia acknowledged this in his interview with Lewellyn King, although noting it is extremely rare.)  By acknowledging these exceptions, and distinguishing them from the vast majority of us, we disarm the anecdote and expose it as an outlier.  I'll give an example below.    

Don't Use Anecdotes...Except to Support Facts

Don't fall into the same trap that you just exposed above.  Personal anecdotes are basically worthless on the internet.  In real life arguments, anecdotes are already far down the list of persuasive devices, but they can have some value because they are often supported by the credibility of the speaker.  For instance, if an acquaintance is telling me about his illness (one I'm unfamiliar with), I can rely on visual cues, body language and my knowledge of the person generally to judge his words.  But on the internet, we sometimes forget that the reader doesn't know us.  We're just another nebulous screen name.

If you must use an anecdote, for God's sake, don't use the most extreme examples.  We've all heard of those people whose ME/CFS is so severe that they can do nothing but sit in a dark room all day with no sensory input.  So it's tempting to think," if I mention those severely ill patients, it will highlight the seriousness of this disease."  But in reality, this example is simply not credible to most people.  (I've personally seen it mocked several times).  Unless the reader has some personal experience with the severity of this disease, they won't believe it.  Attorneys know that sometimes you have to withhold facts that would otherwise be favorable to your client simply because the facts, while true, stretch credibility.  Extreme truths can sometimes harm your argument.

One exception to this is anecdotes that are used to back up a factual argument.  Hopefully, by the time you drop your anecdote at the end of your argument, you've already built a measure of credibility with your stronger arguments.  An example would be "....and I can personally vouch for these studies because my own Natural Killers Cells tested below normal range." 

Do Ask Critical Questions

Sometimes when I'm cross-examining a witness, I want to ask a question that I know won't be answered.  I know that when I ask the question, the opposing attorney will object and the judge will likely sustain the objection on a technicality.  I'll have to continue on and ask my next question without getting an answer.  But usually I ask the question anyway because I want the jury to think about what the answer might have been.  Often it's sufficient just to get the audience thinking critically about something they've previously accepted on faith. 

It's maddening when you see someone post an obviously incorrect statement as if it were scientific fact.  We see this frequently from ME/CFS naysayers; something like: "Cognitive Behavioral Therapy is the only proven method of treating people with ME/CFS."  Sometimes a post is full of these false "facts," and you don't even know where to begin.  You could write an entire dissertation debunking each one.

One of the best ways to challenge someone's "facts" without writing a thesis is to simply ask the person where their information comes from.  Or ask them to cite their sources.  Most likely they won't respond, but you've already put doubt into the reader's mind.  Then you cite a few sources of your own, and you've automatically trumped their credibility.

Do Get Specific About Test Abnormalities

I'm not a fan of PWME posts that reference generally to the "100's of bloodwork abnormalities" that scientists have discovered in PWMEs.  It doesn't matter if you provide a link.  While we know the list of abnormalities to be almost endless, frankly, it sounds incredible.  We also know that it's just a matter of time before researchers identify and agree on one or two key biomarkers, but until then, I think it's important to cite the leading candidateswhatever you believe them to be.

People who don't know about ME/CFS need to read something specific to make sense of it.  Personally, I favor mentioning two abnormalities: natural killer cells and methylation block, but whatever you choose is not as important as giving the reader specific, digestible bits of information.  It does us no good to overwhelm readers with generalities, which only raises their suspicions.

Do Acknowledge the Complexities of ME/CFS and the Limits of Our Knowledge

In our enthusiasm to combat bogus "facts," we shouldn't pretend we have all the answers.  The reader will rightly surmise that if the scientific community fully understood ME/CFS, 100%, the disease would have much greater public awareness (and probably a better name!).  To save credibility, it's best to acknowledge, briefly, that some aspects aren't yet fully understood.

Do Consider Keeping a Well-Drafted, Stock Response on Hand

If you're one of those PWMEs that goes around the internet defending us on various forums, why not keep a carefully written response saved in your computer, and paste it when necessary?  This will save you the boredom of typing essentially the same arguments over and over, and will help prevent you from getting frustrated and firing off a few angry diatribes now and them.

Don't Feed Trolls

If you're not familiar with internet trolling, you should be.  It is a phenomena of the 21st century where a certain subculture of people (trolls) post on internet forums with the sole purpose of making others upset.  It's a weird game to them.  And they are everywhere.

The hallmark of a troll is a one-line nasty invective (usually with horrible grammar and spelling); something like: "Your all worthless and week fakers."  Trolls usually don't take the time to craft thoughtful comments.  

Realize that trolls don't actually hold any opinions.  Their point is not to express an opinion, but simply to bait people into an emotional response.  If you respond emotionally to a troll, you have "fed the troll." The troll wins.  

The usual advice is to ignore all trolls.  After all, they don't deserve a response.  But some studies suggest that even trolls influence public perception, so it may be worthwhile to respond thoughtfully even to trolls...for the benefit of the audience. 


Let me offer an example of what I might suggest as a response to a typical ignorant comment challenging the reality of ME/CFS.  The exact content of the offending (fictitious) comment doesn't matter...they're often fairly similar. At first you think, "this idiot doesn't even deserve a civil response."  But then you remember all the other people that will read your exchange and you write something like:


What are your sources for this information? These beliefs about ME/CFS were in the minority even 30 years ago.  Your information was disproven long ago, and you'll be on the wrong side of history if you continue thinking this way.  Despite its inaccurate name, so-called chronic fatigue syndrome is a debilitating neuro-immune disease, not unlike multiple sclerosis.  Literally thousands of studies confirm this, including dozens of peer-reviewed studies from renowned medical journals demonstrating deficient natural killer cells (a type of white blood cell) and an inability for our bodies to produce a critical molecule called glutathione.  The exact cause of these abnormalities is unknown, but we are getting closer every day.  The days when someone could seriously question the legitimacy of ME/CFS are long gone--buried under more evidence than you could read in your lifetime.

There are undoubtedly a few people who, for whatever reason, find ME/CFS a convenient cover for laziness.  It's difficult to detect these people because the tests for ME/CFS's abnormalities are rare and expensive.  There are also some poorly educated doctors who don't understand ME/CFS and who misdiagnose it.  But it's simply not intelligent to allow these exceptions to prejudice your view of the vast majority of us who all have the exact same symptoms and the same test abnormalities.

I'd be happy to educate you more on ME/CFS if you have any questions.  

Now, I know this isn't a perfect response by any means and I'll probably wake up tomorrow and decide I hate it, but for now, just compare the likely impression left by the above to:

 ScreenName123, why don't you crawl back under the rock you came out from and die, you idiot.

By the way, anyone who agrees with my suggestions is free to copy, paste, and liberally edit my sample into any response of their own.  To anyone else, feel free to express your disagreement as I've often revised my posts here based on points made by others.

[Edit 3/5/13:  I'm not suggesting that all responses need to be as long as my example.  Shorter responses can be effective too, depending on the circumstances.]

Tuesday, February 19, 2013

Quick personal update

Ever since the day after I announced (about 10 days ago) that I had successfully prepared for and litigated a trial without adverse affects, I've been malingering below my baseline.  Not exactly crashed, but teetering between crashed and baseline.  If I were the slightest bit superstitious, I'd think I was jinxing myself with blog posts.

It reminds me of the time back in November when I sort of "announced" that I had taken a step up in my "baseline" and was about 10% better.  I'd been feeling noticeably better for about 2 months at the time.  A couple weeks later I went right back down.

I think in the future I'm going to hold off announcing these sort of triumphs [sarcasm].  Not because I'm superstitious, but because I feel a little foolish later when it turns out I didn't get away with it.

Ah well. Lesson learned.

I hope you are doing well and staying warm.

Friday, February 15, 2013

Oddball 23andMe survey question

I'm having fun sorting through the mountains of information that 23andMe provides about my genetics.  They also ask you to complete various surveys to help contribute to research .  Apparently they match your answers to your genes and determine which genes lead to which traits.

Most of the questions are pretty banal, like "do you smoke cigarettes?" or "have you ever had LASIK surgery?"

Then I came across this one:

Gee, 23andMe, I'm not quite sure how to answer that.  I mean, yes it does really, really annoy me.  So much that I would say its a particular pet peeve of mine.  But rage?  

I guess my answer is "I'm not sure."  

After you answer each of these questions, you're shown a graphic displaying the percentage of people that gave each answer.  I don't want to get in trouble for giving away information from behind a pay wall, but let's just say, WOW.  A lot of people have rage issues.    

Thursday, February 14, 2013

Got my 23andMe results

I received my 23andMe results yesterday.  For those that don't know, there is a company in Mountain View, California, called 23andMe, that has widely commercialized genetic testing.  For $99 they will send you an empty vial by mail.  You spit into the vial and mail it back.  Within about 30 days, they provide a detailed breakdown of your genetic composition.  You can use a secure online account on the 23andMe website to interpret the information and receive a personalized breakdown of various aspects of your genes.

23andMe is being used increasingly by PWMEs to guide their treatment.  But before we get into that, let's discuss a few other interested features of the service:

General Interest...stuff

There are many different reasons people use 23andMe.  Some are interested in their ethnic background.  One can, for instance, determine if her family's claimed ethnic background is accurate.  This topic happens to be a source of debate on one side of my family, so it will be interesting to delve into the details and settle the dispute once and for all.

If distant (perhaps, unknown) relatives have used 23andMe, the service will connect you with them, as long as you and the relative have both enabled that option.  

Another feature is that clients can learn what percentage of their DNA is Neanderthal.  About 30,000 to 50,000 years ago, modern humans existed side by side with their closest hominid species, Neanderthals.  (Neanderthals are classified as a subspecies of homo sapien, so technically, we are the same species.) These two races of humans were running around Europe competing for resources for tens of thousands of years before the Neanderthals went extinct about 30,000 years ago.  Apparently there was some interbreeding in the mean time, the traces of which survive in modern humans' DNA.  So most modern humans are between 1% and 4% Neanderthal.  The average 23andMe user is 2.5%. 

It turns out I am 3% Neanderthal, which puts me in the 96th percentile!  When I told my wife, she couldn't stop laughing.  Apparently, many many aspects of my personality suddenly make sense. Frankly, I'm not surprised either.  It's no wonder I adopted the paleo diet so enthusiastically.  I'm practically a caveman.  

Does anyone remember the old Saturday Night Live skit called "Unfrozen Caveman Lawyer"?  That's me.  I use my caveman common sense to appeal to the jury's simpler sensibilities   

Picture from

Another reason people sign up for 23andMe is to discover what disease predispositions they may have.  23andMe tests for dozens and dozens of predispositions.  It turns out I have a slight predisposition for type 2 diabetes.  Apparently, 25.7% of males of European descent will develop type 2 diabetes between the ages of 20 and 79.  My odds are slightly higher, at 32.2%about 6.5% increased risk. 

But genetics are only a part of the equation.  According to 23andMe, environmental factors, such as diet, play a larger role.  So here comes the good news: the lifestyle changes I've made because of ME (and I'm mainly talking about diet here) should help ensure that I don't get diabetes.  So if I ever needed to find the thinnest of silver linings in my struggle with ME/CFS ... BAM, right there.  

The other two diseases of which I showed a slight increased risk (and, here, we're talking about a tiny fraction of a percent) are Restless Leg Syndrome and Multiple Sclerosis.  But since there's nothing I can really do to help stave off these diseases, I won't worry about them.

Epigenetics for PWMEs

The main reason people with ME/CFS get genetic testing is to guide their supplementation and other treatments.  This is sometimes referred to as epigenetics or nutrigenomics.  One brilliant, enterprising person has created a website and program that will upload your 23andMe raw data and provide you with an explanation of all of your genetic mutations (SNPs) that affect your methylation cyclethe body's detoxification mechanism that appears to be broken in most PWMEs (as well those with Autism, Fibromyalgia, Lupus, Chronic Lyme Disease, and MS).  The website is called Genetic Genie

My Genetic Genie results are here

Truthfully, the Genetic Genie results merely scratch at the surface of the treatment protocol necessary to address these issues.  This will take months and months of additional research before I develop a plan to address these genetic mutations.  The good people at Genetic Genie recommend that you study your specific SNP using two sources: a website called and Amy Yasko's book Austim: Pathways to Recovery.  (And of course, they say you should consult a doctor, *wink, wink*).

Apparently, one must not only identify the correct supplements to address his/her genetic mutations, but the supplements must be implemented in the correct order.  It all seems overwhelming right now, but I plan to take it slowly and do it correctly.   

As the Genetic Genie results explain, we were most likely born with our genetic mutations.  We cannot change them.  But, it is possible, through lifestyle changes and nutrition, to change the way genes are "expressed," minimizing the effect of these mutations.  

I still have many unanswered questions about how genetics and the methylation cycle ties into the immune defects common in PWMEs.  They are apparently connected in some way, I'm just not clear how. 

The good news for me is that I can (hopefully) stop guessing which nutritional supplements to take in what amountsthat is, after all, the point of epigenetics.  I could have spent years experimenting with these supplements without even coming close to the right combination.  Now I have specific genetic information to guide me.  

So this is the beginning of a long journey. 

Sunday, February 10, 2013

I Survived a Trial - Literally

For those of you who don't know, my ME is apparently only "moderate" (so they tell me), which allows me to continue to work full time in my job as a lawyer.  It's often a struggle, and I take sick days here and there, but I've haven't yet thought that I needed to quit.  However, I hadn't yet had to conduct a trial while ill...until last week.

Throughout my ten year legal career so far, I've averaged about 1.3 trials per year.  Statistically, less than 10% of cases make it to trial.  Most are settled out of court or are dismissed, either voluntarily or by the judge.  So trials are comparatively rare.  When they do occur, they are a big deal for the lawyers involved.

The preparation leading up to the trial is chaotic.  This usually involves 10 to 14 hour work days and loads of stress.  Then when the trial itself begins, the pressure increases another notch.  Often I am the only thing standing between my client and financial ruin, and the client doesn't let me forget it.

As it would happen, the longest gap between trials in my career happened to coincide with my contracting ME.  This was pure coincidence.  I did nothing to avoid trials over the last 20 months, it just worked out that way.

The hiatus came to an end last week, when I finally had to get my feet wet again.  But fortunately, this latest trial was scheduled to be a very short and simple trial.  It was scheduled to last only half a day, whereas some trials last for several weeks.  So it would be a good chance to see if I could still handle it without a major crash.

I started my preparations for the trial much earlier than I would have prior to ME.   Fourteen hour work days are no longer an option, so I knew I would have to pace myself by starting early.

As the trial date neared, I figured that as long as I was at my "baseline" or above on the day of the trial, I would be fine.  I can speak lucidly enough when I'm at my baseline and I don't have brain fog.  As I typically do, I over-prepared for the trial so that, when nerves set in, and the battle heats up, I can deliver my facts and arguments without much trouble.

The problem, however, is that I have no control over when I crash.  I knew that if I crashed on the day of the trial, I'd be in trouble.  My plan was to wake up on the morning on the trial and, if crashed, gauge just how crashed.  If I was functional enough to give my client the best representation possible--regardless of how I felt while doing it--I would go forward.  If I felt I might compromise my client's position by going through with it, I would beg the judge for a continuance. Luckily, it never came to that.

I felt fine on the morning of the trial, and continued to feel fine throughout the day.  I gave it my best and argued as well as I could.

In the end, we lost the trial.  But I don't think there's anything more than I could have done.  Sometimes your opponent simply has better facts.  No matter how good your arguments, it's difficult to overcome bad facts, and that was the case last week.   And I knew that heading into the trial.

It's now been two days since the trial ended and I haven't crashed from the exertion or the stress, so I just might have gotten away with it.  It's a relief to know that's possible.

It's not likely that the next trial, whenever that may be, will be so short and simple.  But I won't worry about it until it nears.  For all I know, by the time the next trial arrives, I might have improved enough that I won't have to worry about crashes as much.    

Wednesday, February 6, 2013

The absolute worst symptom

I've spoken with a few PWME's about their scariest symptoms, and the answers vary widely.  

For me, without a doubt, it's brain fog.  I rarely get serious brain fog, and when I do, I usually know the reason.  Often times it's when I've increased vitamin B12 intake without increasing potassium.  The last time, it was when I tried a Pregnenolone/DHEA supplement (100mg/50mg).  So when it does happen to me, it seems to be more of a side effect of treatments rather than a direct ME/CFS symptom.  But I wonder, if I had taken those same supplements before getting ME/CFS, would I have had the same brain fog?  Almost certainly not.    

I dread brain fog because it's the one symptom that profoundly interferes with my mood.  I could be having terrible flu-like symptoms, or crushing shortness of breath, and still manage to be in a good mood...more or less.  But brain fog is different.  When I have it, I'm just not myself.  The simplest mental tasks become challenging.  I struggle to find the right words to form even basic sentences.  That leads to more frustration.  

I've always suspected that I have naturally high levels of seratonin or dopamine, or whatever it is that makes us happy.  I've been a traditionally happy-go-lucky person, for the most part.  And on days when I'm not feeling particularly happy, I can often consciously redirect my thoughts to more positive territory, turning a bad day good.  But on those rare occasions when I'm hit with brain fog, none of that seems to work.  I've tried to consciously control my mood on brain foggy days and find that it is simply impossible.    

Nothing in my pre-ME life prepared me for brain fog.  I've experienced flu-like symptoms before.  I can even relate shortness of breath and other symptoms to various pre-ME experiences.  Brain fog, on the other hand, is completely foreign.  I wouldn't know how to begin to explain it to someone who hasn't experienced it.    

When other patients tell me they have brain fog on a daily basis, my heart goes out to them.  And I hope they're not talking about the severity of brain fog that I get.  I can't imagine living with that every day.  

(By the way, if I had to choose a second-worst symptom, it would be the nerve problems I occasionally experience in my hands and feet.  I lose coordination in my extremities for a day or two at a time, and I have no idea why).

I'd be interested to know what symptoms rank as the worst for others...

Has anyone found any success controlling brain fog?  For me, it seems to be about getting my electrolyte and mineral levels balanced, but this is just a working theory.      

Sunday, February 3, 2013

Photography is a great hobby for PWMEs (including me)

Back when I wrote this post in April, 2012, about low-key activities for PWMEs, I had informally polled a number of PWMEs from various message boards about their favorite ME/CFS-friendly activities.  By far the most often mentioned hobby was photography.

Since it was mentioned so often by other patients (especially long-ill "veterans"), I started taking more of interest in it myself.  I had to find something to replace surfing and jogging.  It so happened that I had the right tools at my disposal because my wife already had a good quality SLR camera.

I'm not going to pretend that I have any kind of talent for photography.  I rarely even venture off of the basic "auto" setting on the camera.  (Cameras are so sophisticated these days, one rarely needs to).  But that's the beauty of photography - if you click the shutter enough times, you're bound to come up with a few gems.

In this post, I wanted to share of few pictures from a mellow walk on the beach with my family this morning.  As we walked along the shore, I tried to take it slow and keep my heart rate under my AT.  I don't know if it worked.  Of course, the true test will be how I feel tomorrow.  At least if I pay a price, I have a few photos to show for my efforts.

These were taken with  Nikon D90 digital SLR camera.  (You can click on any of the photos to see a larger version.)