Watched "Unrest" the Movie

I was beginning to feel guilty that I hadn't seen the movie Unrest yet, even though it's been available to stream for several weeks.  It almost feels as if it is the duty of every ME patient to see it and so my wife and I watched it last night on Amazon Prime for $0.99.  (Also available on PBS.com for free.)

First, as in most posts on my blog, I assume you're either an ME patient or an advocate, and you're generally familiar with this movie even if you haven't seen it yet.  Let's skip the usual introduction/summary.  Suffice it to say, Unrest is a documentary film written, directed, and starred in by ME patient Jennifer Brea about ME.

The filmmakers speak to two completely different audiences simultaneously: ME patients and those who have no real knowledge of ME.  Unrest seems aimed more directly to the latter (non-patients), with satisfying undertones that only patients will recognize.  The film neatly accomplishes this dual-level communication without losing direction.  The reviews from non-patients, mostly professional reviewers, have been  universally positive. It has a 100% Rotten Tomato critics score.

As a patient, this was a different viewing experience from almost any other film.  Normally, I sit down to a movie and my attitude is just: "Entertain me, Movie!"  With Unrest, I felt almost nervous.  The focus is on severe patients, as it should be. (I am not in the severe category.)  But, this film and the severely ill patients depicted in it will carry the flag for all ME patients.  Unrest will speak for all of us even if that wasn't the intention.  I worried that it could present the disease differently than I would have hoped--every patient has a slightly different perspective on how ME should be be presented to outsiders.  So how did it do?   

The challenge in trying to present ME to the uninitiated is, "how far down the rabbit hole do you go?  How far is the audience willing to follow before they say, this is crazy, and tune out."  Brea and her team chose to go pretty far down some rabbit holes (the camper in the desert, the mere mention of fecal transplants, for example), perhaps realizing that this was necessary to capture and maintain a general audience's interest.  They needed a hook. At the same time, they always manage to pull the perspective back and make the point that, one, they are aware this seems crazy, and two, they were only driven to these extremes as last resorts, by the unbearable frustration of having so few resources for care, treatment, and research available.  Every time the filmmakers started down a path that made me begin to question their choice (Is this rhetorically counterproductive?), they ultimately justified their choice through the strength of the overall narrative.

It is astonishing that Brea and her team were able to pull off a movie like this.  As long as I've been a part of the ME community, there have always been various attempts to raise broader awareness for ME, many of them moderately successful but seeming only to reach others in our community.  Over time, it's tempting to think that this is a cursed disease and nothing will ever change.  I would not have thought it was possible to create a movie of this quality about ME and to achieve the broad distribution, awards, and promotional backing of Unrest. That's the real accomplishment.  A large number of people outside of the ME community are actually seeing this movie.

Unrest will pay dividends for ME patients for many years to come. The next time there's, say, an NIH hearing about the future of ME research, this movie and its successes can be referred to as evidence of a growing public demand.  Nobody's going to want to be the next Per Fink (hopefully), standing in the way of medical progress.  On an individual basis, if a patient's family member or doctor doubts them, they can refer the person to this movie.  (Even if the referred person never watches the movie, its mere existence lends credibility.)

This movie should be mandatory viewing for every ME patient and their family members and caretakers (if they're willing).  It is an emotional experience and it will be difficult for many patients to be reminded of how much they've lost.  But it is unquestionably worth it (if you can handle it).  I can't say enough how impressive it is that Jennifer Brea and her team were able to pull this off.  Brava.

Did we just take a HUGE step toward a unified model of ME/CFS?

It seems as if every day there's an article discussing new research findings and treatment theories in the ME/CFS blogosphere.  In the first year or two of my illness, these articles excited me.  I read every single article and blog post about new theories and treatments.

Then, after a while, I started to realize that most often nothing becomes of these promising leads.  We never hear about them again.  In the past year, I reverted to simply skimming the headlines and surmising the gist of most articles.  I look for anything that sounds like a true breakthrough...or anything that "connects the dots" with prior research.

After this year's IACFS Conference, I felt conflicted again.  All the information I'd absorbed sounded so promising, and yet, we still had dozens of different theories, each of which only seemed to explain a portion of the disease.  There was no serious attempt yet to synthesize the various research findings into a unified model.

Here's what I wrote after the IACFS Conference:

The next big breakthrough in ME/CFS research. ... will be the first. 

As sobering as that is, we can't point to any one finding over the last 30 or 40 years that truly qualifies as a "breakthrough."  I'm referring to a breakthrough on the order of the XMRV discovery....had it turned out to be correct.   

We have nothing like that.  So when I read accounts of the IACFS conference, or the daily articles that make the rounds in our blogosphere, I have mixed feelings.  A few dozen dedicated researchers are working on their pet theories and all seemingly churning out important findings.  It all sounds positive...we are surely making "progress"!  Right?

But it raises the question: Is one of the researchers correct, and the others wrong?  I think, almost certainly not. There are too many confirmed physiological abnormalities found in ME/CFS patients that are, by now, beyond debate.  In the immune system alone, there is a constellation of problems, and that's just one part of the disease.  We know with absolute certainty we're dealing with a complex multi-system disorder. And so each of these dedicated ME/CFS researchers is probably focusing on what will turn out to be but a small piece of the puzzle. 

When a true breakthrough finally occurs, it will look like one of two things:  Ideally someone will suddenly discovery the etiological cause--the one event that sets off the long chain of subsequent physical derangements.  Then we'd have a true focus for treatment research. 

But barring such a "homerun" discovery, true breakthroughs will begin to occur when someone with a mind toward the "big picture" starts making connections between the various derangements.... and proving them.  Someone has to start linking these findings in a causal chain so that we can begin to create a comprehensive model of this impossibly complex disease. 

It appears that one of our beloved ME/CFS researchers is finally starting to do just that--to look at the big picture and develop a unified theory.  If you haven't yet read Cort Johnson's article summarizing Dr. Lucinda Bateman's recent pronouncement, you really should.  The one-sentence version is that Dr. Bateman has developed the beginnings of a unified theory, where ME/CFS starts with inflammation in the limbic part of the brain.

It's true that others have proposed general theories before about how everything fits together, but I don't believe it's been done with this level of clarity and confidence -- and by someone who is respected as a leader in ME/CFS research.

I've been a strong proponent on this blog that a unified theory will start and end in the brain--the hypothalamus specifically. (Examples 1, 2)  That of course isn't my theory, but it's the one that always made the most sense to me because it is the only one that could explain all the myriad symptoms and derangements we experience.  Bateman is now saying it's not just the hypothalamus but it's inflammation in the entire lower portion of the brain.  More importantly, she's gone beyond the stage of idle speculation and has actually coalesced the research findings of her colleagues into a well thought-out hypothesis that makes a lot of sense.

What We Need to See Next

Obviously we're still a very long way from solving this disease, but here are a few things I'd like to see happen to push us closer to that goal.

1.  Naturally, the hypothesis needs to be tested... extensively.  This will be a long and expensive process (maybe a decade or more?) but I truly believe that it will be confirmed, if not refined a little in the process.  

2.   The theory needs to be expanded to explain some of the other derangements we see in ME/CFS patients, especially in the immune system.  Dr. Bateman speaks of auto-immunity (overactive immune response).  But what about other aspects of the immune system that are under-active in ME/CFS patients (specifically Natural Killer Cells, and usually, one or more IgG subclasses)?  Any unified model must explain immune deficiencies too.

3.  Where do pro-inflammatory cytokine storms fit?  Are they upstream or downstream of the brain inflammation?  Do the pro-inflammatotry cytokines cause the brain inflammation, or does the brain inflammation lead to immune dysfunction and, thus, cytokine storms?

4.  Of course, it would help if someone could actually explain the external cause of ME/CFS, but I suspect we already know about as much as we'll ever know.  It's generally accepted that there are probably many doorways into ME/CFS: viral, bacterial, stress, traumatic injury, genetics, exposure to environmental toxins.  I think it will be a very long time before we're able to be more specific than that.

5.  Now that someone has developed a credible unified theory that actually makes a lot of sense (in my opinion), and after it's been tested, we've got to ensure widespread support for it from other ME/CFS experts.  We've got to somehow get all or most of these experts pulling in the same direction.  That step would require the concerted effort of an organization like IOM, or it would require one of the big-name researchers like Bateman to become a leader and rally the others behind her (if that's even possible).  This would likely be a very long process too.

6.  After general acceptance among ME/CFS researchers, this new model would expand and gain general acceptance among ME/CFS clinicians, and from there, spread to the greater medical community in general.  True, acceptance in the general medical community seems like a pipe dream now, but if there were a complete model that explained all of our symptoms and could be tested and confirmed, it would gain traction fast.  

(Remember the trajectory that the XMRV theory was on?  Imagine how quickly that knowledge would have spread among the general medical community if the findings had been confirmed.  They'd already be teaching it in medical school).

7.  I believe that only after there's a model of ME/CFS that truly gains acceptance in the general medical community will we ever see the major drug companies take a serious look at this disease and begin to develop drugs, in earnest, specifically for ME/CFS.   

Wild Speculation About the Future

When you consider all those steps, it can be a little discouraging.  Even if Bateman is 100% correct, it could still take as long as 20 to 30 years or more for these steps to occur.  Then again, sometimes progress doesn't occur in a linear fashion.  Progress sometimes builds momentum exponentially.  

Looking at the epidemiology of other diseases, often when one key connection is made, others are made very rapidly afterwards.  Imagine what would have happened had XMRV been confirmed.  Research money would have started pouring into our bare coffers.  Drug companies would have been racing to beat each other to the market with an XMRV anti-viral.  Our small circle of ME/CFS researchers would have likely expanded as other virologists and epidemiologists all over the world would have turned their attention to ME/CFS.  Progress would have accelerated very quickly for us. 

At any moment, we're just one breakthrough away from a rapid acceleration of progress.  Could Bateman's theory be the breakthrough?  Probably not because it's not a research finding...yet.  So far it's just a hypothesis.  But if and when it is tested, I believe it has the best chance yet of any hypothesis we've seen of being the breakthrough.

For now I'm simply glad that someone in a lab coat is finally looking beyond their own pet theory and trying to make sense of what their peers are doing too.  More of that, please!

An open letter by top ME/CFS doctors to HHS

By now everyone in the ME/CFS community (in America anyway) is familiar with the controversy over the U.S. Department of Health and Human Services (HHS) hiring an outside contractor to develop a new definition of ME/CFS.  If you've somehow missed everything that's occurred on this front in the past month, here's the 50 peso version:

HHS announced that they were going hire an outside contractor to, among other things, redefine ME/CFS and create diagnostic criteria.  The leading candidate was a company called the Institute of Medicine (IOM).  IOM had previously been hired to conduct similar work related to Gulf War Syndrome and, by most accounts, completely botched the job, leading to much frustration by GWS sufferers.  Knowing this, the ME/CFS community launched a grass roots email campaign to stop the IOM contract.  Not long after, HHS announced that they cancelled their plans to hire IOM. The ME/CFS community breathed a sigh of relief. Several days later, HHS reversed course and hired IOM anyway.

Now a group of leading ME/CFS doctors and researchers have published an open letter to the director of HHS imploring her to reconsider the entire project and, particularly, to adopt the Canadian Consensus Criteria (CCC) definition of ME/CFS.  The letter is direct, forceful and is cosigned by all the big names.  It will be interesting to see if HHS has the guts to ignore this (but history tells us they will).

The letter is republished here on ProHealth.

Some ME/CFS projects in waiting

Ever since I started this blog, I've felt that I had at least one other ME/CFS-related project in me. Whether it's an advocacy project, or some other kind of community building activity, I feel like I have something else to give.  Of course, I'm taking the long view on this, and not necessarily going to dive into something right this instant.  Then again, if the stars align, maybe I will.  For now I just want to get down a few of my ideas in writing.

1.  An ME/CFS Podcast or Webcast

At first this idea seemed daunting—like it would require an immense amount of technical know-how and expensive equipment.  But after a little research, I'm now convinced that it could be done fairly cheaply and with minimum technical skill.  There are apparently several brands of inexpensive software to help amateurs produce a podcast with relative ease.

I envision it working like this:  First, I would not attempt it alone.  I would want at least one co-host, but preferably two.  A mix of genders would be best.  We would meet online remotely for the show's taping, which amounts to a glorified conference call but with better audio quality.  We would produce one show per month—any more is unreasonable to expect of chronically ill people.  

Before each show's taping, the hosts would circulate and collaborate on an agenda.  The show would have three segments.  In the first segment, the hosts read and discuss a few of the major headlines from the ME/CFS world from the previous month.  The banter would be a mix of informative (based on the hosts' research), but mostly personal perspective and friendly debate among the hosts.  As the show grows, we would try to bring in occasional guests for interviews.

The second segment would raise topics of a more "social support" variety.  There are literally endless numbers of life-with-ME type topics that could be gleaned right from the ME/CFS message boards.  In the final segment, we would read select listener emails and discuss whatever topics the listeners raised.

The overall idea would be to generate a good mix of information and entertainment content - especially for those PWME's who have visual or neurological issues that make extended computer use difficult. Obviously, there are a number of logistical hurdles that would have to be overcome to get this project going, but with the right partners, I think it would be a fun, worthwhile, and hopefully valued by a certain segment of our community.

It also occurred to me that, rather than doing a  true "podcast," the show might be accessible to a wider audience simply uploading it as an audio file to YouTube.

2.  Annual Awards

As far as I know, the ME/CFS community doesn't have any awards to....um...award.  I've seen a few bloggers who have won general "health blogger" awards, but nothing for our community specifically. In my view, the awards wouldn't have to be limited to just bloggers.  We could award researchers, journalists, foundations, doctors...whatever we can think of.

I haven't decided yet how the nomination process would work (maybe open submission by email), but I would want the final voting to be open to all members of the community.  That way, the winners can have the satisfaction of knowing that they were chosen by the community at large.  The website could briefly profile all of the nominees before voting begins.

I wouldn't want to present the awards, alone, from my humble little blog.  Rather, I'd either set up a separate foundation with it's own website, or partner with a site that has more name recognition in the community.  As for the name of the awards, most likely, we might simply take the name of my partner's organization and add an "s" to the end, ala Emmys, Grammys, Tonys, etc.

No money would come with the awards—just an honor.  At first, the awards might not mean much to the recipients, but as the years pass, I hope the name recognition would catch on and the recipients would receive it with pride.

Off the top of my head, a few categories to consider:

-Achievement in ME/CFS research
-Excellence in ME/CFS patient care (by a doctor or other health care professional)
-Patient advocate of the year
-Blog post of the year (journalistic style)
-Blog post of the year (personal/opinion)

I haven't decided yet if the awards should include some sort of tangible plaque or trophy, or if we would simply inform the winners of their recognition and maybe forward an electronic badge or emblem that can be posted on their website.  I'm leaning toward the latter because, well, it's free.

3.  Supplement Exchange

I of course can't take credit for this idea.  It has been talked about on forums a few times that I can remember.  But as far as I know, it has never gone past the "idea" stage.

There are an enormous number of us with large boxes of unused supplements at home. Often we've tried one or two capsules from a $30 bottle and realized we don't react well.  If that occurs two, three, four or more times, suddenly we've got a lot of money tied up in inventory.  Wouldn't it be great if we could all exchange our inventories for something else we can use?

Ideally, we'd want a separate website just for this function, as opposed to a messy sub-forum or some other site that's not tailored to this particular use.  Each user has an account profile, which they populate with the names, expiration dates, and approximate quantity remaining of each spare supplement they have.  If one is looking to make a trade, they log in, search for someone with the supplement they need and propose a trade.  Both parties simply pay to ship the supplement to the other person.  

Naturally, there would be a temptation by some to list and exchange prescription drugs, but for legal reason, this would not be allowed.

A downside to this idea is that I have absolutely no computer skills, so I'm really just posting this in the hopes that someone might take this idea and run with it!

Meet an MD with ME...

Due to a recent commenter on my blog, I was alerted to a new blog by an MD with ME.  In fact his/her blog is called "MD with ME."  I wish I had a name to call him/her, or even a gender, but so far his/her blog is anonymous (which I completely understand.)  Even though the ME/CFS blogosphere is pretty crowded, I think a blog from the perspective of "the other side" (doctors) while at the same time also being on "our side," could add a valuable and unique perspective.

Here's a small excerpt that I found interesting:

I went to a few more local doctors who could not figure out what was wrong with me even though they had to admit something was wrong since normal people don't have a 60 beat per minute increase in their heart rate from lying down to standing, but they were downright unwilling to listen to anything I had to say regarding ME or even postural orthostatic tachycardia syndrome (POTS), which was blatantly obvious! Those doctors had never heard the term ME and clearly thought people with CFS were in some sort of gray area that they didn't really know what to do with, even though when questioned, actually had no idea what CFS really was other than that it involved "fatigue" in some way 

So, as it turns out, even a fellow MD has difficulty getting his/her medical colleagues to take ME/CFS seriously.  Makes you wonder what hope the rest of us have.

Meet Ryan Prior

This story has been making the rounds of the ME/CFS forums.  A young would-be filmmaker and PWME, Ryan Prior, is making a film about ME/CFS.  His Opinion piece from USA Today College is worth reading.

Reactions to his effort seem to be mixed--everything from unfettered support to cautious skepticism. Anytime someone tries to capture this complex and poorly understood illness in single work, there's going to be concerns about under-representation of severity levels, origin theories, etiologies, symptoms, and treatments options.  In some sense, under-representation is probably inevitable.  But it seems Prior has been fairly successful at convincing people, so far, that he will present a broad picture of what this illness is all about.

What impact does ME/CFS Awareness Day have?

Did we make an impact?  Isn't hard to know whether the message is spreading outside of our community or if we're just passing the message around inside our own echo chamber.  I have to believe that we're making small but steady strides, but it's hard to make a big impact on public awareness when there's so much noise competing for people's attention.  And if we do get people's attention, what exactly is our message?

I'll get to that in a second, but first let me back up.

Sometimes I feel like there's more that I could be doing to help our community.  Other times I wonder: isn't it enough to just be looking out for myself and my family?  After tending to my own health issues, I'm not sure how much more of me is left to give to community issues.  I suspect that's a feeling that many of us face.  So if we're all struggling to get by, how do we build an impactful movement? 

And yet we all see these large, grassroots efforts being undertaken by other patient communities.  (Think MS, with its huge charity bike rides, funding drives, etc.)  Aren't MS patients in a similar situation, with little leftover energy to give to the community?  

I suspect that the major awareness and fundraising efforts put forth by other patients communities are driven, in no small part, by the work of doctors, nurses, family, friends and loved ones who support the patients -- not just the patients themselves.  So it begs the question: why not us?  Why haven't we organized the same support network that would be essential for larger awareness and fundraising drives?  

Part of the reason is that our illness is so poorly understood that many of us can't even get our own families to take it seriously (not counting me).   There's this kind of frustrating circularity to our problem here.  

ME/CFS is very poorly understood in the medical community--->Why is it poorly understood in the medical community? --->  Because researchers can't agree on the root cause or biomarkers? --->  Why can't researchers agree? --->  Because there's no research funding to chase promising leads ---> Why is there no research funding? ---> Because there are no major funding drives/charities/organizations --->  Why are there no major funding drives/charities/organizations? ---> Because ME/CFS is not viewed as a "serious" illness by most ---> Why is it not viewed as a "serious" illness by most? --->  Because ME/CFS is very poorly understood in the medical community ---> [Back to the beginning.]  

So the challenge is to break this cycle.  These awareness campaigns are designed to break the cycle at the second to last step above: the "serious illness" step.  In theory then, having solved that issue, the remaining problems would gradually solve themselves in the reverse order, working backwords to the beginning of the list.  

But the thing to keep in mind is that the awareness campaign is only the first half of that step.  Why?  Because it's not enough to just make people more aware of something.  People are never motivated to act on something merely by being aware that it exists.  An awareness campaign basically just primes people's minds to be more receptive to the full message that follows.  It makes people curious enough to want to learn more.  

Then the question is, what are we doing to follow up on the awareness campaign?  What are we doing to educate people once they've become receptive to the message? 

So the next challenge is to develop our actual message.  Because you have to admit, we don't really have a unified message.  We all have different levels of functionality, different theories of etiology, and we all seem to be pursing different treatments.  We confuse ourselves with our own cross-talk, so how are we supposed to present a unified, intelligible message to the average, healthy Joe?

That's the next step.  That's the challenge that I believe we need to be working on now.  

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 flaw—that you're too dramatic—or 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 candidates—whatever 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. 

Example

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:

ScreenName123,

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.]