Why not use us as a study group?
AnonymousFebruary 5, 2009 at 12:20 pm
I am continually reading the posts by those of us who have suffered from GBS and CIDP. Why in the world hasn’t some institution or doctor asked for our participation in a study? My Gosh, I have learned more about the long term effects of GBS on this site than I could from 50 doctors. I know that GBS and CIDP are rare, but as I often tell people, ” when it is you, it isn’t rare.”
AnonymousFebruary 5, 2009 at 2:41 pm
It’s a great idea but I think some dr’s don’t like patients who know more than they do.
I know that I know more about CIDP than all of Emily’s dr’s combined. Not a single one of them has a problem with it. We did have 1 neuro who didn’t like it so we stopped seeing her.
But I do agree with you that this site would make a GREAT study group!
AnonymousFebruary 5, 2009 at 5:21 pm
There was a study of about 300 people with CIDP done through the GBS/CIDP Foundation. I think the “population” was all people that had written for information about CIDP and said they had it. The problem with using only people that participate in a Forum is that it may not be representative of the whole population since one is more likely to be active if you have medical issues. If someone is doing well (or the caregiver of someone doing well), it is natural to be out doing other things. this does not mean that this would not be a great group about which to gather information–it is just that the questions that are asked have to be such that that was considered.
WithHope for a cure of these diseases
AnonymousFebruary 5, 2009 at 7:35 pm
[QUOTE=WithHope] The problem with using only people that participate in a Forum is that it may not be representative of the whole population since one is more likely to be active if you have medical issues.
WithHope for a cure of these diseases[/QUOTE]
A group on a forum would be fine to use depending on the study. It all depends on what type of study you wish to conduct. Unfortunately studies require money in large sums and they are not always conducted properly or even assessed properly.
AnonymousFebruary 10, 2009 at 4:14 pm
Sadly many of the studies are funded by drug companies who are driven by greed. I have been researching the drug industry and it has opened my eyes. They are not into finding a cure because this would take away their monthly profits. They want drugs for CHRONIC conditions. And the money they say they are using for research is really used to pay doctors for trips, dinners, and under the table money. Many of the studies are ghost written by public relations firms and then they pay a doctor to put his name on it. When they find a drug that might work, the other companies change it a little and use it.
As for doctors. the nice ones naively believe the drug reps and the not nice ones are taking the money and risking their patients’ lives. I have wracked my brain to figure out why the doctors aren’t reading the studies I am reading – why they are not checking out this site. It is easy to find.
I think we are on our own on this one. But we can do it. I would find out how many of us were under stress prior to our GBS, what our blood types are, how many smokers or drinkers, what past diseases we have had, how many are hypothyroid, what medications we are on……I believe that answering these questions would get us alot farther than we are now. In prior posts I have tried to ask our members their blood type….but now I am wondering if hypothyroidism is common in many of us. I do not want to get this a third time…….but I know I was successful in staying out of the hospital. Still much paralysis..and really scary….but I followed my intuition. Instead of following what the AMA said, ” so nothing to stilmulate the immune system……” I took 15-20 grams of vitamin C to help the immune system…and was glad I did.
AnonymousFebruary 11, 2009 at 8:41 pm
I was wondering the same thing. I think it seems like such a valuable place for information gathering, even if it’s not a statistically valid group selection. You would think someone who is really interested in furthering the research would tap in to that.
Certainly this site has people from a wide geographic area, you would think that would be helpful.
AnonymousFebruary 17, 2009 at 12:46 am
I agree.I have learned so much on the FORUM about CIDP and IVIG infusions even the neurologist/clinic nurses said they weren’t familiar with.
My pain management doctor keeps asking me when my CIDP is going away.I just look at him and say does MS go away??
Doctors need to know more about the rarer demyelinating diseases.
AnonymousFebruary 17, 2009 at 11:00 am
I am with all of you and like boomerbabe had GBS many years ago with residuals flaring up now years later. I would like to see a study done on the long term effects of GBS as I think there are many of us out there who struggle periodically with the residuals. If I had known then what I know now, I would have done many things very differently…and I know hindsight is 20/20…but had there been more info around what the future could hold for me, I would have had a refernece point for how to manage my life. Food for thought….
AnonymousFebruary 19, 2009 at 2:34 pm
I spoke to Dr. Cornblath a few years back about somthing similar, i was lamenting the fact that there seems to be many of us, specially with bad residuals decades later, who would benefit from studies. We are quite a rare group, and those with long term residuals are even more rare, according to him. One cannot do a blanket study, it has to be specific i.e. cause, varient, residuals etc. So therefore the interest and numbers involved become even smaller. Money, money, money and an interest “high up” in government (i.e. a family member with debilitating GBS or CIDP) could possibly prompt more ‘involved’ studies. The duch doc’s seem to be doing quite a bit of research tho.
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