Saturday, December 19, 2009

Patients Like Me, or not

A few years ago I, like many other people with chronic diseases, was asked to join a site called "Patients Like Me". I joined it and put in all my data about me and MS. It was a lot of information. I thought that it might be interesting to be part of community around MS. I have thought this in the past and tried various forums and boards and have invariably gotten turned off and left. MS is funny - there are just such evangelical points of view on treatments. I get tired of reading all the posturing and crabbiness and just drop out.

I'm also not a huge fan of drama, and I have developed a very bad attitude towards those who embrace the drama of their disease. I try to have compassion but fail a lot of the time. I would guess this is because, for the most part, I don't allow myself to dwell in the drama of MS. Not for very long, anyway. I used to in the beginning - I was quite scared, and I didn't know enough. I've learned a lot. And I do tolerate it in, and have compassion for, the newly diagnosed. I will keep working to be more tolerant of others (I don't have high hopes).

I kept up with the "Patients" site for a few months. I thought it was going to be cool, in the beginning. I got a few "I'm thinking about Tysabri" questions from people, which is fine. But I didn't feel like there was much benefit, nor that I was being very useful.

I have a Google alert set up for Tysabri. I was reading through the email this morning and it had picked up a press release from the "Patients Like Me" site, from about a year ago. It was a report on how Tysabri patients viewed the news about the recent (at the time) new cases of PML. To me, it read like a pharmaceutical advertisement. Sort of a "hey, everything's fine!" And, sure, maybe everything was fine, but is seemed pretty one-sided. It got me wondering - who funds "Patients Like Me"? Since it was 7 am on a Saturday morning and I don't have anywhere to be for a few hours, I decided to follow up.

I read through their corporate FAQ. I think they started out with very good intentions. They are brothers or friends of a young guy who was diagnosed with ALS. They saw him go through his disease, and decided to start a site that would provide community for people with 'life-changing illnesses'. Well, I feel for them there. ALS is probably the worst disease process someone can go through. I appreciate their intention around community. Here's the blurb on how they are funded:

"How does PatientsLikeMe make money?

We take the information patients share about their experience with the disease, and sell it in a blinded, aggregated and individual format to our partners (i.e., companies that are developing or selling products to patients). These products may include drugs, devices, equipment, insurance, and medical services. We do not rent, sell or share personally identifiable information for marketing purposes or without explicit consent. Because we believe in transparency, we tell our members exactly what we do and do not do with their data.

By selling this data and engaging our partners in conversations about patient needs, we're helping them better understand the real world medical value of their products so they can improve them. We are also helping companies accelerate the development of new solutions for patients. Our end goal is improved patient care and quality of life. "

I hear them say they are transparent - I guess I was a little naive and never thought to read their FAQs. I guess it's fine that they sell their data. I don't think they go out of their way to tell you that, though. And I don't care what the original intention was - selling my data changes the agenda you have with me. My main issue is that I haven't updated my data in quite a while. So my data does not tell the full story. The data is very quantitative, not qualitative. I don't think they could possibly explain to any company how I feel about anything, and I'm skeptical about how rigorous the data-gathering process is. Whatever they are providing to companies is anecdotal at best, from my amateur sociologist point of view.

The bottom line for me is, I really, really, really don't want to part of something that is helping pharmaceutical companies with misguided PR. I felt a little burned by the obfuscation of the "Tysabri truth", ie, that the odds of developing PML are radically different for people on Tysabri for long periods of time (1 in 600) than they were stated right after the trials (1 in 1000). But I never heard that from Biogen. I read it in the Wall Street Journal. Biogen stopped reporting new cases of PML many months ago - the bad PR affects their stock, you see. And I know Biogen has my phone number - they called me one week after I had missed my last scheduled infusion to find out if I need anything. I bet they were mostly concerned about the missing $7,500 that month.

I wrote to 'Patients" and asked them to remove all my data from their database, and close my account. I don't like being part of, well, bullshit pharmaceutical research. I'm also very aware of the danger of my life becoming the MS. Every few years, I go through a research cycle to decide what my next move is, in terms of treatments. That's ok - I've been in one for a few months now. But I don't want to be living a life about MS. I want to live my life in spite of MS. When I'm having an episode, then yeah, I'm living IN my MS. But when I'm not, I need to deal with the deterioration I've had, but not dwell in it.

This morning I bailed out of the "Patients" site, and I also stopped my Tysabri alert. I'm not on it anymore, I don't need it in my face every day. I will keep reading about LDN, since I'm on it, and keep an eye out for what the mainstream neurologists are doing. My attitude towards the mainstream MS stuff, though, has really soured. The biggest improvements I've seen in my day-to-day life have been from following the MS-Diet, taking a well-thought out & guided-by-a-professional supplement program, and now, LDN. My mainstream neurologists never told me about any of those things.

And I'm fond of Tysabri - I think Tysabri did a great job stopping the plaque progression in my brain, and in the beginning gave me a energy boost for a few weeks after the infusion. But I had one of my worst episodes while I was on it, and I still struggled with fatigue and energy. But two years+ was enough. I still have my cognitive issues, my bladder issues,my balance issues and occasional sensory things. I feel lucky that during those two years, I found the diet and my 'other', more holistic, neurologist. And I've noticed a huge difference in my energy since LDN. Tysabri didn't do this for me. LDN costs me $30 a month. Maybe that's why no one promotes it. My mainstream neuros laugh at me. But you know, I'm doing as well as or better than anyone else I run into who's been diagnosed as long as I've been. So while they are laughing, I'm going to keep doing what I'm doing.


Lisa Emrich said...


Thank you so much for speaking your mind here. I've been cautious to try not to discuss PatientsLikeMe in a negative way. About a year ago, I deleted all of the "data" from my profile and then undertook the painstaking task of deleting hundreds of posts I had made to the forum section.

It was other patients, their bullying, rude, and cliquish behavior which turned me off. It was PLM's unresponsiveness to follow their own guidelines in determining inappropriate behavior which really soured me.

Then it was the difficulty I had in obtaining the Tysabri Sentiment Report, and the contents I found inside, which really made me question what was the true motivation behind the corporate partnerships involved.

It is not hard to influence and control the conversation when there are 1-2 extremely vocal advocates who lead in the discussion. On PLM, if you are someone who disagrees with a viewpoint or simply has a differing viewpoint, you may be pushed into silence (especially if you do not like conflict). I believe that this happened in the Tysabri discussions following the July 2008 announcement of reported PML cases.

Also, I find it hard to believe the objectiveness of select patient quotes and "sentiments" when the discussion is being led by a company stock-holder who happens to have MS and use the product. But that is the type of detail which would never show up in the details.

PatientsLikeMe is proud of the numbers of folks which they have had sign-up, but I know positively that some individuals have signed-up more than once under different screennames. When folks ask for their accounts to be closed, the numbers do not go down. Just now I logged in and searched "trrish" - you are still there.

On a related note, I have a friend/acquaintance who is a consultant to pharma. She has made the MS community one of her special interests and after a few discussions we have become friends. I asked her recently - "from the outside looking in, what does PLM look like to the pharma partners?" Her quick response - marketing research.

Not research into how to improve the lives of their consumers, the patients. Not research into how effective their products might be or where there might be issues involved, but how the products are perceived by patients.

PLM likes to tout that they are conducting patient-led scientific research. That may have been true in the ALS community, but I don't see it as accurate anywhere else.

The data is biased and incomplete at best. My perception of where my disability is might be different than an objective guideline. Whereas someone who is newly diagnosed, and might be experiencing the very same difficulties as I, may report severe difficulties with something, I report them as moderate because I am more awareness of what severe really is in observation of others.

At least in surveys such as the ones conducted by NARCOMS, there is also a clear reference as to how different symptoms might affect your ability to conduct everyday activities. That keeps everybody on the same page, I think.

OK, now I'm just ranting (and becoming overly dramatic in the process). I am just cautious as to what I've said regarding PLM, as they are the Health2.0 patient community sweethearts right now....and rising.

Off my soapbox. I hope that you have a great weekend. I'm looking out the window at about 18+ inches of snow. The drift is so high in front of and over my car that I can't see the front of my car. Quiet day here at my house. :)

sherri said...


Very interesting... I also signed up on PLM and entered all of my information. I never posted any comments. Quite honestly I was a little put off by the e-mails I was getting welcoming me to the group. I bet I received two at least every day from different people. I found that a little strange, and well, desperate-acting for strangers to beg me to talk to them. I never replied back.

Like you, I didn't read the FAQ section. I didn't find it until I started looking on the page for more information. It's off to the right-hand side of the page, but how would people know? I mean its white text on a powder blue banner. It blends in with all the other stuff.

I just deleted all of my information and sent an e-mail to them to cancel my account. Thanks for bringing this up. I think it's important for others to know!

I'm glad you're doing well on the LDN. :)



trrish said...


Great comments. I remember a while ago you mentioned having those problems.

Well, I'm glad I wasn't too far off. While I was driving around this morning (on my way to the "Big Hat" party I went to), I wondered if I was being too harsh. I value your point of view.

I must be stupid because for the life of me, I could not figure out how to delete all my account information myself??

Enjoy the snowstorm. Sometimes it is fun to have a day of enforced 'homebodyness'.


ps. I didn't think you were too dramatic :-)

trrish said...

Hi Sherri,

See, you are smarter than me - I could not figure out how to delete my stuff. Must be all that time on LDN :-)

I think I am getting a handle on the LDN. I dropped my dose down just a little bit to see if it would help with the sleep problems. My holistic neuro told me to ditch the mega-melatonin (it promotes inflammation) and instead use theanine. So I'm going down that route. It's been two nights on the reduced dosage and I've slept much better. I guess you could say I'm now "very low" dose naltrexone. My friend Paul joked that if I wasn't careful, I might end up on NDN - "no-dose naltrexone". Heh. There is a Yahoo Group called "Very Low Dose Naltrexone", it turns out.

I think I'll stay on the lower dose (it's about 1.0 mg) for a little while and then see if I can bump back up to 1.5 without disrupting sleep.

I have had consistent energy - not manic energy, just a slow-burn kind of thing. What an amazing thing to have after 15 or so years of not having it.

I also break out more, although that might be all the gluten-free, dairy-free, NOT SUGAR FREE brownies and cookies I've been making :-)


K. said...

Very nice post, Trish.

I had an MS scare ten years ago: Numb on one side of my body, unable to walk unassisted, double vision, the works. I was pretty scared: I had a wife and two kids depending on me and had no idea where my life was headed. But damn me if I was going to give in to the drama! It was more fun making gimp jokes, anyway.

Mercifully, I appear to have dodged a bullet: No recurrences since and the MRIs have been clean. But my heart goes out to all of you.

trrish said...


Glad you dodged that particular bullet. It's a frustrating and strange disease. I've actually improved a great deal in the last couple of years, and I'm considering myself to be very lucky. I appreciate a normal day's worth of energy as if I won the lottery or something.

sherri said...

Trish (and anyone else on LDN),

I'm not trying to highjack this thread, but I didn't know how else to reach you.

Linda Elsgood - who is a huge advocate for LDN - is working on the 2010 LDN Awareness Week eBook. She needs 101 people to tell their LDN stories. I am helping her collect stories for the book. Would you or anyone else be interested in participating? You don't have to give your name; you can give initials if you like.

If interested in helping, please post your story to my e-mail address, and I will pass them along to Linda. Be sure to include the nation where you live, your diagnosis, how long you've been taking LDN, and a bit about the changes you have observed in your condition since beginning LDN.

Thank you so much for your help!


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