Tuesday, May 27, 2014

Advice given for free and believe me it is worth the price you pay (The advice if you do not want to read the whole post is DO NOT FORGET TO LIVE!)

I have been sick for a long time but the past four years I have been so sick it has changed me life dramatically.  When I was diagnosed I found a lot of comfort in hanging out in online support groups.  There were people in these groups that knew exactly what I was going through and in the meat space world there was no one who could fully relate.

After four years of hanging out in online support groups I have discovered something that should have been obvious.  When you get a group of people together for any reason you will find there are differences from person to person and the anonymity offered by the internet will bring the asshole in everyone to the surface. I do not need anonymity to be an asshole, I have no problem being an asshole in person or over the internet.

After four years (yes I know I am starting this paragraph the same way, shut up I am sick) I have mellowed considerably and I do my best not to treat everything as though it were a formal debate.  I fail sometimes: especially when people are disregarding the scientific method but I am more and more tolerant as time goes on.

The next little bit is cliche but not all cliches are bullshit.  Being diagnosed with a rare disease that the cause is not known and that there is no treatment for let alone a cure you will begin to grieve.  Your life as you know it has ended and while not as dramatic as actually dying (I am assuming) it is none the less painful and plenty dramatic on its own.

When people grieve no matter what they are grieving for there is always that stage of denial.  It comes in many forms.  My denial came in the form of strength, I am so strong, so tough, so tempered by the world that I will impose my will over the disease and I will live my life how I want.  That was my denial (by the way I am mostly out of denial, mostly) and I have met many people along the way who I have denied in the same way I denied but there are different strokes for different folks.

The most common form of denial I see is that there is a cure but nobody has done the right research or the right research has not been funded or the right research was funded but was not followed up on or even conspiracy theories, big pharma has a cure but they will not give it to us because they want to make money off the sick.  Of course these are all wrong but the big pharma one is the hardest to explain to people why it is wrong because big pharma does want to make money.  The economics of sarcoidosis is there are not enough of us that are sick that it would make any sense to hold back a cure.  The publicity for finding a cure for a rare disease is worth much more than what is gained by giving people fifty year old generic drugs that do not really work that well.  One thing about denial, the truth will never be relevant, denial will carry on in the face of the truth!

Below is one of the response I wrote to a guy recently trying to explain to him why a six year old Italian study with 12 participants is not really relevant.  He became quite insistent that melatonin was the next big treatment for sarcoidosis.  This was my response and I thought I would share it here with all of you.  I think I was nice and thoughtful and hopefully made someone think but you know what?  Denial, it ain't just a river in Egypt.

Some of this might be a little out of context but I think it flows, if you have any questions leave me a comment.

Some studies are funded by large Pharma, not usually the ones for sarcoidosis they are usually from a government grant because the people in need of treatment for sarcoidosis is so small they have no interest in it because there is no money to be made. That is an unfortunate fact of having a rare disease. Publication bias applies to any small study regardless of the subject. I would recommend everyone read about publication bias. Separate issue, the specifics of the Italian study dealt with massive doses of melatonin and no one is probably taking that amount on a daily basis. The reason it is so crucial that studies about sarcoidosis include a large number of subjects is that sarcoidosis comes and goes on its own and with a small group it is hard to say. I have no dog in this fight and do not want conflict. The last person that I tried to help from this group was either trying to sell me something or was a little unhinged so I have no interest in being an altruist on a personal level at this point. I have a genuine interest in seeing people not experience the same trauma and pain that I have and so I will throw out some lessons I have learned. I spent four years with the help of some amazing resources and finances and lets not forget some amazing people. At the end of that four years having tried every treatment with the smallest amount of scientific evidence, what can I take away from that time? Go to National Jewish Medical Center in Denver or better go to the Cleveland Clinic, if you can not go to either of those facilities find the nearest university that has anyone doing any research and go see them. I can tell you after traveling this country and subscribing to medical journal after medical journal and following every single study that even made a little bit of sense, after all that I wish I had spent that time my wife. I have nothing against being aggressive, I have tried all the treatments that have been in favor and then almost as quickly fallen out of favor and if something is having positive results with patients at the Cleveland Clinic I will try that as well but in the meantime I can tell you from my perspective the time I spent chasing down a six year old Italian study on Melatonin and that the fact that I studied it over and over again to the point that I can recall all this off the cuff, that time and energy would have been better spent with my wife and that is just for me and take it with it is worth. I will not follow anymore comments on this thread, my wife will be home soon from work and I do not want spend time away from that. Do not spend all your time chasing the cure, do not forget to live. Thank you all and good night and I sincerely wish you well and I do not wish to argue, I know a lot of people will argue after I have stopped following (prednisone makes you angry) but please remember to live and maybe if you are at that point listen to some who has been there.