My survey into GBS & CIDP will stop running in 1 week (on the 10th of March 2013). Please can anyone with GBS/CIDP who reads this and hasn't filled it in, do so. I have around 500 completed results and would like as many more as possible. The link is:
http://gbs-cidp.questionpro.com
Conclusions
As I am not a medical person and the sole "experience" of GBS/CIDP is based on what has happened to me. What I conclude below is based purely on how people have responded to my survey and the feedback I have been given to the results:
- The age range of people contracting GBS/CIDP is around 35 to 64 - which is lower than generally assumed (this could be countered by the fact that younger people use computers therefore are more likely to fill in something on-line)
- The actual fitness levels of the people who get GBS/CIDP have nearly 90% as active or fairly active. Is this because they have more active immune systems? or because they travel more and expose themselves to more hostile/less sterile environments? or have more injections.....
- It is definitely the extremities that are mostly affected, with the feet being slightly ahead of the hands. However CIDP has a higher affected area all over the body than GBS (more areas affected by around 20%)
- IVIG is the most proscribed treatment and seems to have a reasonable success rate, plasma is an alternative in some countries and steroids are more effective against CIDP than GBS, but all treatments have a fair degree of uncertainty about whether they will work at all and there is no miracle cure!
- Men seem to complain less than women (that is a generalism about illness and going to doctors anyway). However women seem to get on with things and cope with pain better!
- A high number of people with GBS are still stating they have after effects/major issues. The areas this has shown up in are getting around, nerve pain, how healthy are they now and ability to work. So if GBS is acute and a one hit illness, people should be able to return to a reasonably normal life afterwards? It is commonly stated that 80% of people make a full recovery from GBS and 20% from CIDP. Whilst the results certainly back up the latter, there seems to be a lot less people making anywhere near a full recovery from GBS and as for being acute (it is certainly not "a cute" condition!), a significant number appear to be having long term residual effects. I would suggest that the boundaries and differentials put in place between GBS & CIDP need re-examining and that the leas than 4 weeks - GBS; over 8 weeks - CIDP is not as accurate as the medical people think and there is always the people in between......
The final conclusion is that there needs to be more research and understanding, however, I hope, at least more is known from a patients eye view now than before.
Presentation
The GBS Support Group in the UK have an annual meeting, this time near Liverpool on the 20th of April 2013. I have been given a 20 minute slot to present some of the results from my survey (as I don't have time to do them all) and then answer questions. The presentation will be based on the final survey number, around 500. I will happily send the final version to anyone (after the 20th of April) who may want a copy, so please email or facebook me.
I hope the presentation will be illuminating & interesting and I will represent the findings in a fair and accurate manner. I will also put in a number of the conclusions from above and try and get the opinions of the medical people at the meeting to my results.
Thank You
I would like to say a great big thank you to all the people who filled in my survey and have made it into the successful venture it has become. When I started out on this I had no idea how it would be received and what would come out. I wish I had phrased some of the questions better and maybe asked others, but I hope that publishing real information based on our experiences, this has assisted people in understanding how others are affected and provided some insights into the nature of GBS/CIDP.
It was a shame that, apart from minor curiosity from certain medical people and individual support from one or two sections of the GBS/CIDP community, not one of the formal groups actually assisted me in any way or even sanctioned that what I was doing. Yet thanks for your efforts and support.
Now all I have to do is publish the results to the web for the 500!.....
