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

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

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. 

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.]

18 comments:

  1. Thank you for sharing this. Best regards from Norway.

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    1. Thank you. Your blog must have a lot of followers because the link you posted brought a wave of traffic here. Thanks. I wish I could read it, but I can't read Norwegian.

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  2. Good thoughts, Patrick. My approach is generally to keep things as brief as possible when I do respond, and I generally try not to unless there's something very specific I can address in brief...I feel like the longer a comment I leave, the more likely it is that someone will seize on one tiny part of it, and if I give them a bunch of possible avenues, I always remember that they will undoubtedly have more energy than I, and I'll end up worse for wear if I try to engage at length. So I keep a few things on my mental pinboard about this: xkcd, Penny Arcade, Jim Benton. :D -Jocelyn

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    1. That makes a lot of sense, J. I happened to see one of your comments to the recent SF Examiner article and agreed with how you handled it. Thanks for being one of the people who represents the community well.

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    2. I think this post is great and I hope people to take it to heart. I read it because a FB friend shared it. I plan to pass it along. It really is essential that we learn to harness our precious energy by communicating clearly and effectively both on the Internet and in other arenas.

      My first advice to people, when the subject comes up, is usually just to avoid comment unless it's going to make a difference. Some Internet forums aren't going to be seen by enough people to warrant discussion. It may be difficult to resist the urge to set someone straight, but engaging in a flame war can be draining and energy is something that's in short supply for most PWMEs.

      My second piece of advice is usually to keep it short. If it's more than a paragraph or two, nobody's going to read it. I think this is especially important when people are responding to petitions or when they're writing to government officials. It's heartbreaking to see people submit page upon page of personal testimony, knowing that all that work has been for nothing.

      I think it also makes sense to avoid references to controversies within the ME/CFS community. References to the name issue, CBT, GET, the British psychiatric cabal, the ME vs CFS debate or the idea that ME/CFS is a form of AIDS will make no sense to anyone unfamiliar with these issues and they could make the writer sound unhinged.

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  3. I like the quippy one-liner. It saves a lot of brain energy.

    Thanks for the outstanding post. I'll remember it whenever I make a public comment about ME/CFS.

    One of the things I like about ME/CFS is that I get a chance to see what other people do for a living. A trial lawyer sounds so cool.

    Best to you.

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  4. Patrick,

    Thank you for this post, and for your wonderful blog, which I just discovered. I think the points you make are so important. While people with ME/CFS who are doubted and dismissed are surely suffering from the ignorance of others, the question is what to DO about it. I believe it DOES matter what we say and how we approach it if we are ever to have the chance of being heard and understood.

    I'm posting your wonderful piece on my Facebook page! Thanks for all you do.

    Lisa Myers
    http://livingwithcfs.com

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    1. Thanks for the kind words Lisa. Made my day. I'm off to check out livingwithCFS.com....

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  5. A well reasoned argument. Thank you.

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  6. This comment has been removed by the author.

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    1. Heidi, I can imagine how frustrating that must be. To not be believed when you know you are correct is absolutely maddening.

      I very much appreciate your comments and knowing that others find this information helpful. I nearly deleted the draft of this post before I posted it. I wasn't sure if it came off as too preachy (which was not my intent.) So thank you for the reassurance.

      Best of luck to you on your SSA battle.

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  7. Thank you Patrick for these pointers. I will especially heed the one about not coming from an emotional place. This is hard to do when the subject matter is so personal. Not only is it personal but our own honesty and morality is many times questioned. It is a good idea though to take some time to detach, compose our thoughts, read and re-read our comment before sending it out.

    Thank you,
    Gabby

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    1. Hi Gabby (Nielk), it's been a long time. Nice to hear from you. I hope you've been feeling well enough lately to get some painting done. Sadly, I've been too busy, but I have a good idea for my next one.

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  8. May I second the suggestion that patients write a pithy, well-reasoned response that can easily be amended to fit the situation and keep a copy to be used as the situation warrants. I probably use this timesaver several times per week.

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  9. I show people that the new syndrome of CFS was coined BECAUSE the CDC saw Cheney, Peteron, Komaroff and Caligiuri's evidence of low NK cell function.

    What kind of person would treat a syndrome, or "illness" as if it were devoid of the evidence that gave it a name?


    http://www.ncbi.nlm.nih.gov/pubmed/2824604

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  10. Hi Patrick,

    Thank you for this well thought out blog - can we share the link through our Facebook page so that others can benefit from your wisdom?

    Just one thing that I don't completely agree with. Severe cases have to be mentioned when talking about ME because this disease is potentially extremely severe and severe cases by no means rare - but perhaps there is a need to indicate that there is a range of disability. Most diseases are known by how sick the sickest are - while ME is not. If the public knew how truly devastating ME can be, they would be horrifed. But perhaps I am approaching this from public relations point of view and how to win hearts rather than how to win an argument :-)

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    1. Hi ME Awareness Pics,

      I think you make a valid point, and there are certainly times when it is appropriate to discuss the very severely ill. I was generalizing, but I think it can be inserted effectively especially, as you say, if you note that ME comes in a wide range of severities. I feel that we need to take small steps in this public image battle, taking what gains we can reasonably get then building off of those gains in the future. Sometimes the most extreme cases can raise doubts in people's minds, even though we know them to be true. But this raises a difficult dilemma, because those most severely affected by ME deserve, perhaps most of all, to be known and understood. There's no good solution, I think we just have to use our best judgment in each situation.

      Thank you for you interest in my post, and for your excellent contribution to the discussion. Please don't hesitate to share the link on Facebook.

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  11. The CFIDS Assoc of America posted this on FaceBook today - FDA will host a 2-day workshop on drug development in CFS and ME on April 25-26. It will be webcast and there are opportunities for patient participation. Registration is required to attend in person or by webcast. Federal Register notice: http://1.usa.gov/Y4ytgz

    We'll post info about this meeting and why YOUR participation is so critically important on our Research1st site. We will also be providing some educational opportunities so you can learn more about the drug development process in preparation for the workshop.


    Patrick, thanks again for your informative blogs. On the last one that I read, you talked about Dr. Yakso and methylation treatments. I was excited to ask my doctor about that when I went to see her. She smiled and said those are only done out of the country. We have tried Glutathione injections alone, and Glutathione injections with antiviral medications. Neither helped. I am now trying injections of Glycyron plus and AMP/B6/B12.

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