Submitted by Jim K on Wed, 2008-03-26 17:22

These are two informal surveys done a couple of months ago to get some quick answers about treatment response. They are both small numbers, hence called informal.

We had done larger surveys in prior years but the last one was too ambitious in scale and too difficult to analyze and correct errors in. I'll try again eventually with a more modest survey.


These were done as "quick and dirty" polls to get some sense of responses to CAPi from those active on the site at the time. Note that both are small numbers, so any individual's extreme responses will affect the percentages a lot. Keep that in mind. I'm always cautious about poll results on websites because the sampling is not at all random (we are a self-selected group) and results are easily distorted by numbers, errors in reporting, e-vandalism, etc.. i.e. lack of scientific controls.

Having viewed posts on this site longitudinally over quite a period of time, as I started the site, I can say that the majority of people who have done the CAP for Cpni have reported improvements in their disease condition. Mileage varies. Improvement for some means being able to work or write again, and for others... that they are not dead. Hard to assess the scale of it, so the surveys leave it subjective.

The time needed on treatment needed to have appreciable improvements appears to be dependent on bacterial loadi (indicated by strength of initial negative reactions to CAP antibioticsi/agents): the more severe the reactions the longer it takes as well as the slower one must go. As the course of treatment appears to be on the order of 2-5 years, and Cpnhelp is only 2 years 31 weeks (really!) old we don't have many who have completed treatment altogether (although there are quite a few who have been treated by Dr. Wheldon, Dr. Stratton, Dr. Powell, etc who have completed treatment and were never involved in this site). 

We have only had one definitive report of someone with MS (who I believe was around for this survey) who did a full CAP for over a year, and whose MS continued to worsen with no apparent effect on the course. There probably have been others who we don't have reports on. I think we have at least two "Former MS patients" (Sarah and LifeontheIce) who have completed CAP treatment and are medically considered free of their original disease. I report these so you have some sense of the range of responses. 

The results for the MS group:

MS CAP treatment results


Followed by the CFS/FM group results:

CFS Quick Survey results