Monday, January 16, 2012

Seven Blind Men, an Elephant and a Weasel


A Short Fable for Martin Luther King, Jr. Day

Seven blind men and a weasel checked out an elephant that was confined in a cage in the zoo.

Each blind man felt a different part of the elephant and came up with a different description of the animal.

The weasel asked the elephant, "how do you feel?"

The elephant replied that it was tired of being trapped in a zoo, tired of being felt up and probed by blind men, didn't care to talk to a weasel and would like to return to its former life in the jungle.

The weasel said, "Are you kidding? I would love to be the center of all this attention. You must be crazy."

And because the weasel happened to have psychiatric credentials, it was concluded by all that the elephant was crazy.

Because it was a mad elephant, it was necessary to keep it in solitary confinement until it ceased its irrational thought habits.



The moral of this story is, Let my people go!

Thursday, January 12, 2012

Patients for Sale

Beware: market research corporation masquerading as patient forums.

A lot of things could be called a Patient Forum. There are some set up by patients, for patients. Others are set up by organizations, for patients.

Still others are set up by blood-sucking leeches, for their own profit. Callously capitalizing on your catastrophes, they invite you in to tell your story, with an invitation to write in a "blog" like this one on M.E.

Leading questions invite you to divulge personal information, and the invitation is, oh, so sympathetic and full of suggestions of vague helpfulness.

With questionable punctuation because they're too cheap too hire a competent editor, and they think you're too sick to notice, they make yourself at home:

The forums allow you to interact with other people in your situation and share information and experiences. Thus helping you on your journey through your or a loved one’s medical problems and challenges.
There's something odd here, you might notice. A couple of things are more off than the punctuation.

For one, there's this odd paragraph inviting comment on the difference between M.E. and C.F.S.:

Interestingly the terms Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (CFS) are normally seen as being synonymous but Sir Donald Acheson* noticed that CFS and ME may be distinct, however reference to this difference is very rare.  If you know more about this please do share your knowledge in the comments section below.
Wait though, you can't post any comments until you join something called "The Patients Voice."

Before that, there was the even odder pair of paragraphs about another thing to join, "The Patient Experience."

We have covered the subject in a couple of previous blogs including one about Medicalinsider – a CFS informational site (http://www.patient-experience.com/index.php/medicalinsider-chronic-fatigue-syndrome/).  Also a rather aging general discussion blog whose comment disappeared when we changed servers.  If you must you can find it here http://www.patient-experience.com/index.php/chronic-fatigue-syndrome-blog/.

 "If you must you can find it here?" A "rather aging" blog, and its "comment disappeared." Don't you wonder why its comment disappeared? I do. I wonder also, why do they say, "if you must?" Do we have a mole in there, planting odd turns of phrase to clue us in?

New comments have been added to replace the "disappeared" comments. (Disaperecido: disappeared, is an ominous word. Comments, opinions, efforts to communicate, disappeared in a mysterious move from one holding place to another.)

The new comments are heart-wrenching stories by real patients. Either they aren't, really, but are written by cynical marketers to lure you in and elicit your trust; or they are real true comments left by real true patients, in which case, they're made of real blood and tears that are being sold as market data, and you're invited to share (give away free) your thoughts, too.

Go ahead, contribute to this effort to help patients inform the medical community! Your efforts will be sold back to you as an expensive pharmaceutical, targeted to your exact patient profile, and sold to your doctor through information they've harvested about him in similar "blogs" and "forums" designed to reap the inside information of medical professionals, the same way they're reaping and selling patients' information.

Let's see what happens behind Door Number One, shall we?


In Step 1, they get your basic data: name, contact information, gender, number and ages of children, medical conditions of children, and/or age and medical condition of person for whom you're a caretaker.

Step 2: tell them every medical condition you have, from acne and aneurism, to zits and zoomorphism, so they can match you up with appropriate surveys.

Step 3: tell them where you go for medical advice.

Click the button to complete your registration and they'll try to send a confirmation email to the fictitious address you gave them to check it all out without receiving their spam.

As you finish the registration process they'll show you some photos of models posing as people. When I was a 60-year-old man named Fie Woh (wack the keyboard to create your new name) they showed me a photo of two women of about 60 with hideous makeup and styling.

I thought that was a little odd. I went back and became Fie Woh, the 21-year-old woman. She got an extra photo for some reason: two photos, one a 20-something woman with her presumable mom and the other a couple nearing retirement age and considering their financial options. You know them. You've seen their picture on the wall of your local bank branch.

I suppose marketing research has proven that 60-year-old men are interested in mature women made up to look like hideous old bags, while mature people---and her interaction with them, perhaps as family members---are relevant to the interests of a young woman.

We ought to see the picture of the mad cynic who dreamed up this site, on the wall of our local post office.

I want to share more I've found of this story so far, and it would be revealing to go ahead and make a dummy account from a dummy email address to get under their skin a little---three accounts really: one as a patient, one as a medical professional and one as a health care products client. I could count up the spam I receive in each account and try to calculate how much money they're earning from clients to compose and send so many badly-written emails.

(See, that's what I'm really on about, probably, right? You were thinking that, perhaps? I'm just jealous of some hack who earns a living writing what fills my junkmail box.)

I could have so much more fun in their Wonderland but I can't, right now. It's 3:00 am, I've had two hours' sleep and of course there are a thousand other things I should be doing instead of this if I must be wide-awake.

(Parenthetically, it's so unjust: while the sickness is stealing sleep and sapping energy, completely disabling us, the system simultaneously piles on the paperwork, and the sicker you are, the more paperwork there will be, until you're considering retirement on the wall of somebody's local bank branch, while a 21-year-old named Fie Woh watches you from her internet, and wonders what she will do, as caregiver for her ailing parents, children or self.)

So just real quick for now I'm going to give you a couple more of the interesting links and quotes, and then leave you, perhaps to return to this story later ... although there are so many others to tell, in other wee hours of the night, equally astonishing. Quickly, now, before I give out, here are leads to more of the Healthcare Landscape story.

There's this link: http://www.patient-experience.com/index.php/chronic-fatigue-syndrome-blog/ their same pitch as the M.E. "blog" (do they know what that word means?) but this time they're calling it "C.F.S."  Again, you are invited to register and comment.

There's this one: http://www.patient-experience.com/index.php/medicalinsider-chronic-fatigue-syndrome/ where you can connect to this one: http://www.medicalinsider.com/ where you learn this:

Health-Spy.com rebranded
a.k.a. , as of 29th January 2011 has been rebranded to Medical Insider (medicalinsider.com).


These guys used to call themselves "Health Spy." What a more honest name that was, sort of like "Blackwater."

Why is a company that has in its very name declared itself mostly interested in M.E. (before changing that name) using odd turns of phrase that particularly bait responses from people who are enthusiastic about explaining the difference between M.E. and C.F.S.? And why does it ask if they feel discriminated against?

There's only one reason these people do anything. There has got to be money in it.

The parent company is http://www.healthcarelandscape.com/ where you can enter as a patient, a healthcare professional or a client.

The health care professionals are sold the same menu as the patients---give us your data for free and we will sell it---albeit sold with a garnish of sesquipedalian jargon.

The Client tab is interesting: here, you can pay to receive the information given freely by patients and doctors.

We learn from the Coverage and Costs tab that they're operating on every continent except Antartica and Africa where there's no money to be made as a for-profit, and in the Client tab, under Patient Research, they describe for clients how the guinea pig farms or "forums" work:

These communities of respondents are pre-screened for medical conditions and degrees of severity. We also have details of Rx and OTC medication as well as demographic information. Our unique resource encompasses 400 therapy areas.
There's good money in demographics, and OTC medication too. Under Physician Research, the pitch reads, in far more medicotechnical polysyllablubber:

With over 40,000 respondents (and rising) across virtually every therapeutic area these panels will allow you to fulfill your qualitative and quantitative data collection needs across all research methodologies.

You have got to love research methodologies, when there's data to quantitate. It makes you feel smart enough to have earned that M.D. or maybe that research grant. So much more scientific than the way one should talk to patients, who are told:

It would be really great if you could share your story with us and comment on the experiences of others if you can.



Was I going too far, I wondered, thinking this site was a cynical exploitation of the chronically ill and our caregivers? I worried that I'd already nearly violated Godwin's Law, with allusions to Disappearing and Blackwater. Attacks on capitalism, accusations of more corporation than cooperation, and allegations of cynicism, are really unfair and small-minded of me when these honest people are trying to make an honest buck helping us by selling us to ourselves and everyone else.

I was already annoyed and ready to rampage when I saw the Wikipedia article on Myalgic Encephalomyelitis, earlier today. It must be carefully maintained by the NHS and the CDC. There you are, another conspiracy theory: NHS and CDC editors busy editing Wikipedia to keep neuro-immune disease in its place. It's as wild as my conspiracy theory that marketing corporations are out to make money.

Another project for another time: conspire to make and keep that Wiki thing on M.E. accurate.

As for M.E. versus C.F.S., my personal position is that ALL neuro-endocrine immune diseases by whatever inadequate name (all names being inadequate until a pathogen is positively identified) require increased research funding to develop better definitions, diagnostic tests, and while we're busy in the lab, what about effective treatments?

Research can be funded under the umbrella term of neuro-endocrine immune disease, and face it, most researchers are just going to be practical and apply for grants under whatever name the granting agency or foundation will support. Until science provides better name(s), quibbling about it only divides and conquers us.

I hate these crashes where the brain won't shut up. I'm going to try to sleep again, really, but I want to share one piece of news first.

My shrinking brain was energized by a very successful patient effort that hit the press these past few days. At last, inroads are being made against the UK's vicious cutbacks in disability benefits under the guise of reform, and the catalyst appears to be the Spartacus Report.


Congratulations to all the Spartaci who took part: People with disabilities pooled their efforts, providing case data, researching, writing and publicizing. The report was just released two days ago and already it has gotten results. The House of Lords defeated three government "reforms" that would further impoverish the disabled poor. The Spartacus report precipitated this victory in the House of Lords, demonstrated government's disregard for due process, and offered a brilliant template for action.

This is what we can do by cooperating, and focusing efforts on actions that have a chance of making a difference. Compared to Healthcare Landscapes' pathetic pitch to use the patient population for profit, I'm so gratified to see patients too smart to fall for propaganda, sharing data ourselves and using it ourselves in ways that actually improve our lives and chances of survival and improvement.
I hope this is just the beginning of what could become actual reform. Imagine people receiving respect and needed assistance.

On that happy note, I'm off to sleep. 


(Parenthetically, again, I do not advise using insomnia hours to complete official paperwork related to your benefits, or anything else that might have lasting impact, if you can't read and follow instructions. I could not, when I started writing this four hours ago, have instead completed bureaucratic paperwork because that uses a different and more shrunken part of my brain than does writing. I could not now that I've been thinking for four hours write the blog you have just read. I cannot, now, even read it. I could certainly not follow the three steps required by Healthcare Landscape to register and give them my data, which gives you a little idea of how the site passively culls the respondent population. Most of us, on many days, or after any activity, would not have the energy and cognitive skills to register or comment. Therefore their data are slanted, as are most studies', toward the less-seriously-ill and the misdiagnosed.)



* Healthcare Landscape doesn't bother telling you who this mysterious peer, Sir Donald Acheson, might be, but a quick Wikipediaing will tell you he was the doctor who coined the term "Myalgic Encephalomyelitis" in 1955.  He died 10 January 2010, a year and two days before this writing. He served 8 years as Chief Medical Officer of the UK, ending in 1991. During that time, officially-recommended medical practice on M.E. patients in the UK was, and remains since that time, more harmful than good. Why is that? Anyone want to tell me in the comments? Where did he stand on the nature of the disease he named, and why didn't Dr. Acheson stop the Psych Lobby Sectioners? Just wondering, history...

P.S. Patients Like Me is a similar marketing farm "forum," which might be more subtle in its approach but still looked fishy enough to fellow patient Carole Carrick to cause her to click a few links and learn that they're no real patient forum, with concern and caring for patients, either. Please, chronic illness victims, withhold your personal data from these vultures. Thanks, Carole, for the inspiration and information.