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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Thursday, February 28, 2013

Ethical Dilemma: Friday Tidbit

At a rheumatology medical conference in the mid-80's, one of many, talking to two rheumies...

Today I have a truly horrid feeling in my stomach.  I had planned to write an "up, up, up" post, knowing that I've not laughed much in the past month. I've written entirely too many medical posts lately.  Worse, I've been complaining a bit too much about my health.  OK, not complaining as much as reporting but it makes me feel a bit too self-absorbed. But today I had a fit!  A complete and total fit.  

Today I read a tweet on one of those Internet newspapers/newsletters that come out each day with various "articles," which are actually links to various blogs/websites.  These links are to writings which deal with CFIDS/ME/CFS and/or fibromyalgia that come across on twitter, depending on which newsletter, etc.  These various newsletters have been a boost to my blog and I appreciate that, more than I can ever say, believe me. A few of them publish an almost embarrassing number of my posts, just as they publish other people's posts. They do a pretty good job of getting hold of some rather great blogs/websites which I've read. They try to publish links to doctor's posts and even links to medical links if those are on their radar and are thought to help others.  

With all of that said, I want to make something VERY CLEAR because I have a huge BUT coming.  It is a HUGE but and I really don't know how to word this in order to convey the levels of concern - and more than a little outrage - that sometimes hit me.  

There are a few issues that are inherent in this age of "information."  I have hesitated to say anything at all for fear of being misunderstood and because I have found much social and emotional support with some of the people, and dare I say "friends" with whom I tweet.  And I LOVE twitter for that reason.  I have even found ideas for living life as a person with my fibro, CFIDS and the bucket load of medical conditions that I've managed to accumulate.  I've had great laughs.  I've had company in the middle of the night when the rest of the world sleeps. 

On the other hand, I do have a problem with some of the chatter on twitter.  And when I say this, understand that this complaint includes MYSELF as much as anyone else.  I hope I'm being clear here.  Stay with me because, as many of you know, I sometimes have to write more than seems necessary - but I want to cover all bases, crossing every "T" and dotting every "I" and I want people to know that this is a problem that I normally just dismiss as an annoyance.  However, today, for many reasons, that tiny percent became a big deal.

First, I want to know, what the heck are doctors doing on twitter?  If these doctors are any good at all, why are they advertising on twitter, because when it comes down to it, that is exactly what those doctors are doing: they are advertising and marketing themselves.  Actually I want to say they are "whoring" themselves, but I'll refrain from that.  

Instead I have a few questions:

  • What decent doctor even goes to the trouble of doing such things?  Shouldn't a doctor be reading medical journals or seeing patients, or even returning calls to patients about their lab results, renewal of prescriptions and the other million little things that would actually involve patient care? 
  • If a doctor really has valuable advice wouldn't the right thing be to publish it in a medical journal or at the very least have a letter written to the editor of a medical journal? These letters tend to be published if the doctor makes an interesting point to his peers on various concerns about patients.
  • What responsible doctor gives out medical advice on the Internet or even face-to-face at a cocktail party or at church to the person sitting next to him in his pew?  That would be totally irresponsible because patients need a thorough evaluation and THEN given medical advice.

I have to wonder if the doctors on twitter went to an inferior off-shore medical school and if they even got beyond an internship in this country (the bare minimum required by law in order to practice) in some Godforsaken prison with the worst scumbags in the world?  I have to wonder are THEY twittering from a prison themselves?  I have to wonder the following as well:

  • a) what is their agenda?
  • b) how good are they?
  • c) can they not make a living and therefore have to sell themselves?

Second: who are the people who write blogs?  And this is where I have problems with blogging in general. 

Let me say that I suffer over each and every post I write.  The medical ones give me huge stomach aches and make me physically nauseated when I am finally ready to hit "publish."  I have worked on those posts for at least a day and even longer - and I'm talking at least 8 hours if not MUCH longer for the most primitive form of my more complex posts - in order to make sure that I have all the correct medical information.  I consult with impeccable sources and then I do a little bit of research to see what I can find on the Internet.  I tend to check out places like the Mayo clinic or other sites that I know have more or less accurate information.  Heck, I've even found mistakes there.  They aren't God, after all.  I'm not God either - but at least I know it! 

Furthermore, I dig and dig and dig until I come up with what is the most accurate information that I can without a healthcare degree.  I wasn't an English PhD student for nothin'.  (And let me make it clear I did NOT get that PhD because I had to drop out mainly for health reasons but got impeccable recommendations which led to jobs in two "major" publishing houses in New York City.)

Back to the way I write my posts: more often, especially in the beginning when I was wetting my feet, I would simply write more about my personal experiences.  When I would venture into anything medical I was especially careful.  That's when I'd check unimpeachable sources to see if my idea for a post was even valid. My "unimpeachable sources" include physicians who have published in medical journals and have even been declared expert medical witnesses in court.  When I tackled complicated concepts, like DHEA or Adult Human Growth Hormone deficiency, I would even vet my information with nationally-recognized specialists in the field.

Furthermore, I know that everyone knows that I'm not a physician - you'd have to be pretty brain-dead to think I'm a doctor.  I also don't give out medical advice.  I report what I know and what I've lived through and even at that, I get my records checked out to make sure that I'm not even giving you the wrong date.

So where am I going with all this?

I have read certain posts which report the opinions and finding of various doctors, many of whom are misrepresenting the facts.  I realize that everyone is entitled to their own opinions, but NO one is entitled to their own set of facts!  

And today, I finally hit my limit of bull in what I read on the Internet.  Why?  Because today I saw a link to an article that caused me to have a fit.  I knew it was not accurate the moment I saw the title.  I got really curious and read the article and I saw the name of a doctor whose name is EXTREMELY familiar to me and not in a good way, whatsoever.

That's when I'd finally had it.  I have tried to be discrete, in part because I don't want a lawsuit on my hands.  There are other considerations as well, but if I keep on we'll never get done with this post.

However, now I have an ethical dilemma.  What  do I do?  Do I report some of the names which I know are absolute sh*theads or do I let it go by me?

On the other hand, if I give out names of doctors who are actually wolves in sheep's clothing that makes me as bad as some patients who will sabotage a doctor's reputation on those idiotic doctor's ratings sites on the Internet, upset because they didn't like to pay for their healthcare or were upset that a doctor kept them waiting too long.  

Too often patients don't even know if their doctor is really any good.  When our daughter got sick, I had no idea who the best people in the Crohn's/Ulcerative Colitis field were.  We had to go into it all semi-blindly and rely on friends of friends who had a bit of "inside" knowledge.  I freely admit that I've had the champagne of care for my own medical problems, going from New York City and working myself south and west, geographically speaking.

I knew when the doctors treating my daughter were wrong with her pain management, but when it came to her unique and never-seen-before case of vicious and sudden onset of Crohns/UC, we were basically clueless as to whom we were trusting.  And to give credit to her doctors who dealt with her case in the disease situation, these doctors (and there were literally scores of them) freely admitted that they had no idea what was happening to her precisely. 

I, personally, have been to more doctors than I can ever remember.  I do have contacts - excellent contacts - in the medical world.  I've come across great doctors who knew their stuff, at least one who has testified in front of congress, mediocre doctors (the ones you forget) and awful doctors who are out there advertising the stuffing out of themselves.  Yet I've never besmirched anyone by name.  I know that people are loyal to doctors.  I know that doctor/patient relationships are complex but are also sacred, often a matter of you love one or hate one.  

I've had only one doctor whom I've seen that I can say that I absolutely LOATHE on my own behalf and I have complex feelings about the one "major medical center" which saved my daughter's life, but also put my daughter's life in jeopardy.  Had I not been by her side 24/7, with a relief of a family member if one was around, she might have very well died.  If anyone's a very careful reader of this blog, a great detective, they can figure out who these people are, because there's always a trail left behind.   

Yes, I HAVE withheld personal information, but I have never actually lied to anyone on this blog.  I don't lie in life.  I don't hang around with liars.  I don't lie here.  I can be outrageous.  I can be wacko, and I can be a lot of other things, but I have never lied here.  I have a HUGE bugaboo about lies.  A real "thing." 

Yet part of me feels that in withholding names it feels as if I'm lying.  Of course there are quite a few things that I've left out that don't give a complete picture of who I am.  This is not a blog for my most personal details!  I AM entitled to my privacy, be it because of good taste, or other reasons.

Why is it then that today, however, I feel like I am lying?  Excuse me as I go take a bath to wash the brown stuff that got on me today when I read some real rheumatology, and more specifically, fibromyalgia sh*t.

As always, I hope everyone is feeling their best, only better.  Ciao and paka.

(Did you enjoy this post?  Please subscribe to my blog and you'll never miss anything.  It's easy: see the directions on the right hand corner of this page.  And BTW: I'll never sell, share or rent your contact information.  I don't even know where to find it, so it's a firm promise!) 

(For full disclosure: Why was "Friday Tidbit" published technically on Thursday, by 69 minutes?  Because it would have been 13 posts for February - it's now March 1st as I add this - and I've been superstitious about 13 (especially Friday the 13th) since that was the day my daughter's nightmare with her IBD began so suddenly. It had always been a good luck number before, but not now!  But it WAS actually Friday somewhere over the Atlantic.  This is as close as I've come to a lie.  But when your kid... well, you know!  69 minutes seemed the heavy investment, though hubs and I discussed it for hours as to whether or not it was ethical.  I was about to wait for Saturday, but I also try to keep my promises and Friday Tidbits was a bit different today, hence "Friday Tidbit" with no "s" coming after the "Ethical Dilemma" part. Plus now I've added this note on Friday.  I almost sound like a Jesuit priest, appropriate for this day when the Pope relinquished his job. (Hey, I'm neutral guys!)  And you wonder why NO family member EVER wants to get into my head?  They are the sane ones! ;))


  1. I really get what you are saying, what you mean by feeling suspicious or at least very reluctant to take anyone online serious at all. That goes for doctors, too.

    That said, doctors DO have a home life of some sort too. Surely they are entitled to it. Also, Twitter and most common social media sites are extremely common these days. Everyone uses them. I cannot imagine that anyone who does use Twitter does NOT also use it for the professional lives. Or visa versa.

    While I personally try to share information and stories about being chronically ill or having chronic pain, I also have other interests. So those that follow my twitter account are can be pretty diverse. This, too, is common.

    I also know that more and more doctors are using social media to *connect* with their patients. Additional access to your personal physician, even. This seems to be something that is "catching on" in a big way. I see a great deal of doctors using Twitter. I follow a few, and they follow me back.

    As for the legitimacy of it all? Who can ever be sure of what is said online? Or if the person you are talking to is a "real" professional (insert industry here). You cannot.

    Lastly, about trying to "do the right thing" or pointing out the glaring errors. You cannot "fix" the internet hon. Don't even try. It's not worth your effort. I am very much like you, I cannot abide a lie or a liar. However, one must pick their battles when one has a chronic illness and very little energy (me). So no matter how much it pisses you off (or because of it!) don't waste that precious energy on something you cannot possibly control.

    Light and love, as always <3

    1. Hi Shannon! Respectively, I think we can agree to disagree. Social media is just that: social, not professional. xx

    2. Seriously? I know hundreds of professionals who use Twitter for business every single day. While you may find doctors doing business over social media distasteful, or even "unprofessional", social media IS the way of the future. We live in an instant-gratification society. Social media is teaching everyone everywhere how to connect with people right now, live and immediately. Not via telephone tag or snail mail.

      If you want information about anything what do you do? You go online to find out, usually via your cell phone. Instant information. Social media + ask a question = near instant answer, depending on where you go, and that means instant gratification.

      I'd be more concerned on not to being left behind. Did you know that in Japan (for instance) they don't even carry cash or debit/credit cards anymore. They use their cell phones to do *everything*, including payments for whatever they are doing, wherever they are.

      Granted, they don't share technology and find it difficult to function outside their country.. but while in Japan, that is how they do business. Period.

      Just sayin' :)