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.

7 comments:

  1. Creek you have exposed SO much there. I've read it through once but will have to read it properly again. Thank you for persevering with this. I knew there was something dodgy too. Thank you Sharing.x

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  2. Wow! What an eye opener. Thank you to Carole and Creek for looking into this and bringing it to the patient communities attention. Perhaps we, the patient community, might want to "play" with these folks a bit till they decide they don't want to "play" with us anymore!

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  3. Take a look at http://www.meactionuk.org.uk/ M E and other ''Medically Unexplained Illnesses'' have been used , in collusion with medical insurance companies, Unum in particular, as guinea pigs for Biopsychosocial medicine . The details of government meetings deciding what to do with ME have been put under a 70 year seal of official secrecy. Suffice it to say Psychiatrists had their fingers in the pie.
    One of the founding fathers of the UK ME association , Dr A Melvin Ramsey was quoted as saying , when psychiatrist Simon Wessely expressed interest in joining . "Over my dead body". Sadly this has happened. The whole of the NHS treatment being offered is as much use as a one legged man in an ass kicking contest , and we now have a government whose health policy is dictated by Unum . HEAVEN HELP US!

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  4. Thank you, Carole, for sharing the dodgy link in the first place and joining me in following up to see just what they were up to.

    Michele, I love your idea of "playing" with them a bit. I definitely feel up for some fun.

    Anonymous, I knew about the 70-year freeze but not that it had been confirmed that it's connected to the insurance companies and psych researchers. I'm having some trouble with the link you gave but will look around at ME Action soon as I get a chance, and I can see that I will learn a lot as I search for the bit on the freeze.

    We definitely have a lot to talk about, come May 12.

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    1. Do try to get to MEAction website, Margaret Williams , plus other academic researchers who are far more knowlegable than me , are well worth reading. The political , academic , and financial macchinations alone are eye opening to say the least . The depths to which these people will sink is totally shocking in the light of the sheer weight of biomedical evidence available.
      Try the Hummingbirds Foundation for ME if you haven't already found it. Lot of info there.

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  5. You seem to have gotten the wrong end of the stick about the patient-experience.com. The web site is now discontinued in any case, but was run by some friends of mine. I bumped into them on myspace.com and ran a CFS and ME forum on their sister web site (for no financial reward) for about a year or so before it fizzled out. There was no actual financial element involved in the patient-experience.com, although I understand they were trying to build up a brand to potentially launch as a commercial web site - no more exploitative than many other health-related web sites and indeed medical practitioners. I think you have completely misrepresenting them.

    I am not sure if your comment ‘There's only one reason these people do anything. There has got to be money in it' is directed at the patient-experience and/or medicalinsider.com, nor the following comments. Clearly there wasn’t any money in what they were doing as both patient-experience.com and healthcarelandscape.com have ceased to exist.

    I am the owner of the medicalinsider.com web site. Yes I admit I made many mistakes along the way with domain names, I didn’t really know what I was going and was rather restless. I used the ‘ME’ domain extension because it was new, but in hindsight it was a bad idea as the web site was focussed primarily on CFS and it may have caused confusion. However, I always explained that the site was mainly about CFS but also related to a large degree to ME and Fibro. I hovered between the 'me' domain name and health-spy.com for a while (which I chose as it had a health detective flavour about it) and eventually decided to use the name ‘medicalinsider.com’ which isn’t perfect either. I have for the last 5 years or so had a page discussing the differences between the different terms for CFS and also the basis of the terminology for M.E and their limitations. I did this to diffuse any confusion on the subject. I realise the name of the site caused some confusion which I regret.

    The content of my site has only been written by me, there is not more than one individual involved. It has taken many years of my time to write. You refer to my site as a company. This is not correct. It has never been a company, just a private, patient's/enthusiast's web site. It has also absolutely nothing to do with market research. It has also been non-profit from its inception, selling nothing, collecting no data from visitors or anything in that vein, and only in the last couple of years have I added Google Adsense adverts at the top of most pages in order to offset the costs of running the web site. I have not come close to recovering my costs and am still a four figure sum out of pocket overall. I don't mind that, as it's always been my intention to help people and spread information.

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    1. Thank you for pointing out that you did not profit from the pain of patients. Further than that, thanks for not doing so in a world where so many do. Of course we expect to have to pay for health care in this country---that's a whole different sort of medical profit and another discussion entirely--- but this scenario is different and I am glad to hear that you were not taking advantage of patients in this way. Good for you.

      There are a few sites mentioned here. Yours appears to have merely been peripherally associated, maybe just linked. The problem at the root was the website healthcarelandscape.com, which was offering patient information for sale to those who could profit from it; while simultaneously offering patients a place to freely share their personal information. It was like putting up a sign saying "dump your manure here, free!" and then another sign on the other side of the field saying, "Manure For Sale."

      Your site, medicalinsider, appears to have come up only as a sidetrack within a winding tangle of trails leading to http://www.healthcarelandscape.com/ whether those folks paid you for info or harvested it for free, or never even bothered with your site.

      Thank you for the clarification.

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