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.
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.
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