Sunday, September 19, 2010

Beware who you trust online.

The popularity of CCSVI discussions have as much to do with the “how” as it does to the” why”. My first hint of what was to come began with a quick note from a Twitter friend. Research into this new to me theory would have to wait until I could climb out of my cog fog long enough to form an intelligent opinion. Skepticism is still weaving its way through the entire community of neurologists, MS Societies and main stream media. My personal journal is a permanent record of my on again off again flirtation with this medical breakthrough. Never before has social networking become such an addictive pastime for me and countless other people with MS. Before long, most of my time was employed by my quest for liberation. In the beginning I limited myself to articles on the internet and a peek or two at a few medical websites.
For two years the only website for MS I was interested in was Patients Like Me. Some of the members there assisted me through a time when I was very ill. Like many people, I was attracted to PLM for its friendliness and understanding. The members on the forum were a lifeline between me and sanity. Cognition affects up to 80 % of people who suffer from the symptoms of Multiple Sclerosis. I think it’s fair to say that cognitive problems and fatigue can be likened to torture. Very few of my friends there were interested in CCSVI and in fact were very open about their disdain for the whole idea. In time, even they could not deny the evidence in front of them. Many hours of any given day were spent learning about Chronic Cerebrospinal Venous Insufficiency and reporting those findings on the website. Most people appreciated the efforts of the handful of people who did most of the leg work. On the other hand, personality conflicts and personal perceptions began to clash and it was clear that my years with PLM were coming to a close.
The dynamics of social websites make for an interesting study. They each serve a purpose and the atmosphere is dependent upon the members and the moderator. Medical support websites have given many people the knowledge and psychological boost needed to expand their comfort zone. Armed with better information and knowing they can report back to friends online, patients can be more assertive with their doctors and take control of their health care back from the medical establishment.
What is the difference between a not for profit and a for profit website when it touches people’s lives? There are many groups and websites devoted to Multiple Sclerosis. Most websites either charge for their use directly or by advertising. Patients Like Me is an innovative website that gathers information from people with lifelong illnesses and sells it to researchers and Pharmaceutical companies. On the surface, this seems like a win win situation. PwMS have the opportunity to discuss symptoms, treatment options and personal experiences. The website can help research think tanks. It is open to members only, preventing wholesale garnering of very profitable information straight from the horses‘ mouth, so to speak. Drug companies learn which medications have unexpected positive results as well as harmful side effects. At last patients were given voice to their complaints and successes. There is somebody listening. Doctors can begin to understand MS from the point of view of many people rather than their own limited practices.

From the member’s prospective they are drawn to a free website with no advertising. MS is a disease that is very difficult to understand unless you know it up close and personal. Some of the more popular topics are related to relationship issues. On the forum there is a limitless treasure trove of knowledge and wisdom from men and women who have “been there”. I could find someone with experience in any aspect of living with Multiple Sclerosis, from diagnosis to disease modifying medications. An extra perk is the camaraderie and sympathy derived from associations there. So far it seems like many other internet sites where people of like minds or interests can forge friendships, offer their own support, and tap into a rich resource of knowledge and compassion. I literally stumbled on the website about two and a half years ago. It was a time of rapid progression in my MS symptoms. Cognition was a travesty to deal with day in and day out. I needed contact with other people who could understand what I was going through. My husband and children were not prepared to deal with a wife and mother who simply wasn’t “there” anymore. I had been the proverbial ‘glue’ that held my family together. Soon I couldn’t put thoughts together and I was at a loss to find a way out of the cognitive hell I found myself living in.

On PLM I found acceptance and willingness from other members to commiserate with me on many different levels. I read the policies of the website, but gave them little thought. Some things began to bother me. Who could access my information from the many charts I filled out? More troubling is the amount of potentially damaging information given openly without consideration for the affect that knowledge could be used against the authors. We talked about many things. We were like a big cyber family who shared everything from MS to our hobbies and other interests. No topic was truly off limits. A person might well lose a job, consideration for SSDI or become entangled with child custody and other legal issues. Many times, very intimate conversations were pursued. Nothing is actually taboo. We could talk about divorce, abuse, trauma, personal habits, income information and sexual habits. It all seemed to be acceptable because we felt safe there. Those words are often used when members discuss the website itself. We were encouraged to write everything we wanted to talk about on the forum. We were discouraged from using private messaging. When I left, they would not delete my information. I was told it was for the continuity of the threads. However there have been a number of times that threads were deleted without notice. Members who became threatening were deactivated, also without notice. When I left, I had no way to defend myself and was not allowed back to even delete my email address that I was shortsighted enough to post therein the first place.
After I had the angioplasty procedure I began to look at the website differently. My trust in drugs to treat MS was totally gone. Although I had taken DMD’s only the first year after my diagnosis, I didn’t have an argument for anyone else to do so. I began realize how poorly the site was moderated. Over the top rudeness and language was allowed by what we were told was a “light touch approach”.
I have a real concern about what is in my opinion, nothing short of using individual members as pawns. Private messages could be, and I believe were read by the administration for a long while before I realized this was occurring on a regular basis.
Real names and addresses are sold to the highest bidder. Conversations to aid patients, often cognitively impaired are openly scrutinized and the well being of the patient is compromised. There were numerous occasions when an obviously troubled person would come for support. Some were very depressed and even suicidal. When they left, often in desperation from in house fighting, the website did nothing to ascertain their safety. The moderator would not stop the member battering or unfairness. They try to foster an atmosphere of friendship and support knowing full well that the individual means little or nothing to them.
For those who are careful about what they say and fully understand that they are providing revenue for corporations and organizations some may find objectionable, much insight can be gained from associations there. That may not be true for people with cognitive or mental disability. Patients Like Me and other entrepreneurial ventures that utilize web technologies and social networking can transform health care. But there's a substantial risk of corruption by the money that can be made and the social danger to individual members.
I am quite aware that others may have differing opinions about this subject. My intent is not to denigrate, but rather to be aware of places and situations where disabilities can be exploited. Regardless of the positive results of this business model, it does not make reparations or amends for the personal damage it may inflict.


Unknown said...

Woman - you stay strong. I never thought you would leave PLM.

I have been coming here several times in the past few weeks to read your words; longing for the "mental support" I felt from you at the beginning of my CCSVI journey in PLM.

Your photo presentation about those who touched your life brought tears to our eyes as my DH and I saw that we were your first picture. Thank you for posting it here temporarily!

I'm going to ask Kardan if she needs to get rechecked after her September 1st liberation when I go for my procedure two months later and maybe we can share a room in Albany!

I know that we are all connected by the common bond of CCSVI, and it warms my heart to learn what you may do for mamadawna when she gets liberated.

BTW my PM's NOW request another PLM member to write to me at my gmail address first; then I send them the adress you have for me at so I know who they are from their screen names!
I have the same concern about PM's in PLM too.

I wrote your e-mail addy, but no reply so I was worried when I saw no update here for weeks. Stay healthy and happy!

Lady Gazelle

You wouldn't believe the comments about this song I posted to PLM - most good one saying CCSVI is could kill you. lol

Lisa Emrich said...

I'm trying to catch up on my blog reading after several incredibly busy weeks. I'm not even sure if I've committed here before or not, but I do follow.

You have expressed many of the same observations and opinions which I have in the past (actually almost two years ago). The outright rudeness from "bully" members and cliques, and the lack of PLM/moderator support to close threads or take some sort of action against behavior which went against terms of use policy, encouraged me to be one of the folks who painfully deleted every forum post and delete profile information.

As an MS blogger who has attracted the attention of various companies, I have a great interest in how individuals and entities which to support, manipulate, empower, inspire, profit from us, or whatever. I take my role in this position very seriously, even sharing my views at a conference yesterday in Philadelphia.

I truly appreciate that the number of patients with first-hand experience regarding CCSVI are sharing that experience online. As I have not delved as deeply into the science and do not have personal experience, I do not discuss the subject on my blog. It would seem inappropriate to me, and not genuine (for lack of knowledge depth).

I'm so glad that you are continuing to do so very well. It is inspiring to follow. I know a little how you feel.

Last fall I switched medications with the agreement of both my rheumatologist and neurologist. I asked about Rituxan due to research conducted and the fact that my MS was simply not behavely appropriately and I had been relapsing and progressing TOO much in the previous 1.5 years.

I started in Rituxan last November and stopped Copaxone in October. I still take methotrexate and symptom meds. I felt immediate improvement in my RA and my MS symptoms were lessened. Although MS is still active, I haven't had a huge relapse in a year. I have had smaller relapses or rather week-long "episodes" not requiring steroids.

It feels good to actually be feeling better even though I still have all the permanent damage from every previous relapse. It does kinda make me feel differently about the potential of pharmaceutical treatments. (I had doubts that Copaxone was really working, but I always knew the methotrexate made a huge difference with my RA.)

Anyways, I just wanted to say "hi" and thank you for this post.

Anonymous said...

What a nice post. I really love reading these types or articles. I can?t wait to see what others have to say.

Anonymous said...

Very nice indeed I’ll probably download it. Thanks.