Saturday, 23 February 2013

Update 25 - Survey Results Part 12

This is the last part of the original survey, based on the 300 from August 2012:

I asked about the ability of people to return to work:

 To my untrained eye this looked a bit wrong, so separating GBS & CIDP you get:

Now this really did not make sense.  If GBS is an acute condition and 80% of people with it make a good recovery, then I would expect 80% of those to be back at work (so I expected a 20% - No, 20% - Limited and 60% - Fully), whereas for GBS we have a 50/50 split.  So, whilst I am happy with the CIDP figures, the GBS ones seem to be far too high, is it because:

  • I asked the question in the wrong way? "Are you able to return to work? (Yes - Fully, Yes - Limited or No)"
  • Are people being mis-diagnosed with GBS when they have CIDP (because GBS is more known about?)
  • Does it relate to previous slides about fatigue and this causes them not to be able to return to work
  • Are the previous thoughts on this for GBS wrong
  • Should other factors be considered:
    • like people are older and recover less fast
    • were much fitter before so will struggle afterwards
    • generally in the before and after they can do less
  • Is GBS not an acute condition!

I do not know the answer. From my position, with CIDP, I have returned to work fully (with modifications to my car and job), but I suffer massively from fatigue and can (and have) over do it and cause issues, but as I need to earn money, I have little choice.

Looking at how healthy people now are, we get:

What we can clearly see is that GBS sufferers are much more healthy than those with CIDP, as stated before this is entirely expected. Once again though, I would have presumed the numbers for GBS would be substantially higher?

The final chart shows this direct comparison off better:

So people with GBS are healthier than people with CIDP, but the difference from the people who filled in my survey is not that distinct.

These are my last charts.  On my next submission I will try and draw some conclusions, then I have to re-incorporate the 500 results (ish) I now have and work out how to display the results in an easier form for you to digest (and one that won't take me 6 months to publish!).

Saturday, 9 February 2013

Update 24 - Survey Results Part 11

This is the penultimate set of results of my survey (based on the 300 completed originally).  These are about where nerve pain is and how tired people get:

This graph tends to follow the trend of all the other "feelings" charts, whereby the extremities are most affected with the feet/toes being marginally ahead of the hands and fingers.  I presume the toes are slightly less than the feet because, unlike the fingers which are the most used parts of the body, the toes are not used - well that certainly applies to me (no pencil picking up ever again!).  We all know immediately if our fingers have issues.

By comparing GBS & CIDP the relationships between the areas is more or less the same, but the numbers are higher with CIDP, which is to be expected, as people (me included) still get pain.

Comparing men and women, as with other charts, seems to bear out the theory that men complain less?  Though why is it the one area that men complained more was around the stomach?? (must be to do with food!)

This next part is concerned with how tired people get:

As you can see the vast majority do!  From a statistical viewpoint, noting the age of the people filling in the survey, would they not be getting more tired anyway? Maybe I should look into this more closely??

From a GBS versus CIDP viewpoint:

It is clear there is a difference and as a person with CIDP, I can agree that I am exhausted at the end of each and every day - and really don't know where the energy has gone - when comparing myself to before the illness .

My follow on question to the GBS sufferers (and I suppose to CIDP as well) is "Is the pain and tiredness still there?"