Some of you, reading the article in the Handbook I wrote on CFSi/ME & Cpni, know that I'm not a fan of Cognitive Behavior Therapy (CBT) for fibromyalgiai and chronic fatigue/ME. I believe that what originally began as trying to provide better coping tools has been coopted by the medical establishment's tendency to blame the victims of disease for their own disease when medicine is impotent in helping these serious disorders.

So, on seeing Dr. Teitelbaum's report of a study in the Netherlands exposing the harm created by CBT for CFS/ME patients, I had to bring it to our readers attention. Below Dr. Teitelbaum's summary and the link to his excerpt from the research report translated from the Dutch.

New folks here to Cpnhelp, we need your help.

This site is full of wonderful, generous folks, who are sick too, who spend a lot of time seeing to questions and making sure people get the help they need. We will do our best to help you through the confusion. I've seen few community websites like it.

But for some miraculous reason we have had a huge influx of new people lately, and we are getting swamped, especially with having to answer the same questions over and over again with each new person posting. We are glad you've found us. We are a bit overwhelmed with the bounty.

I've had a few questions and concerns raised lately about some of the recommendations made to people asking for help with protocolsi, treatment reactions, and other questions. This suggests it is time to restate some of the "rules of the road" here. Old-timers may drift in recalling the need for more cautious or measured tone, and newer members may not be familiar with the care we need in responding with our own impressions.

We have a lot of new members here. This is great, as it means we are reaching more people. We also have a wider variety of illnesses and co-conditions being represented here than ever before. Some people may be using protocols which are different than typical CAPi treatments, and there may be important reasons for those differences.

It would appear that there are doctors out there willing to treat using a Combination Antibiotic Protocol. I know that some have been using this site as a resource and sent patients to us as well. A year ago when we tried to gather information about doc's willing to treat Cpni this way, we got no response. We chalked it up to the whole thing being too new and to professional caution. But maybe it's getting a bit more acceptable?

I want to thank everyone who has made a donation to www.cpnhelp.org recently, and to those who have encouraged donations. I haven't had time to give personal thanks to each donor lately, but am deeply appreciative that people value this site enough to help maintain it.

You should all know that we really are doing fine and currently have more than enough to support any current website maintenance and upgrading. This community has been quietly and regularly helping out as we go along. It's quite amazing to me. Even a number of quiet "lurkers" who have not posted have shown their monetary appreciation. So don't feel pressured or worried, and give only if and when it suits.

Well friends, expect another rush of interest in Cpnhelp.org. I sent the link to my recent article on CFS/FM & Cpn to Immunei Support, who publish a regular newsletter on CFS and FM topics. They were very interested in the article and published it, with some introductory commentary, in their Patient Opinion section of the CFS newsletter. You can find the article at:

http://www.immunesupport.com/library/showarticle.cfm?id=7938&T=CFIDS_FM&B1=EM042507C

Outed again!

There has been some venting and discussion of concerns about treatment modifications from some patients of one of our Cpni doctors here lately relating to pharmacologic doses of Vitamin Di. While I promised myself to step back from the site for a bit and give myself a break, I would rather make some comments now then have to head off a snowballing problem. I can just see it coming. So my commentary ensues.

Editorial-

I've just posted Red's blog story in the Patient Stories section, as it is such a wonderful chronicle of the Cpni journey. Red also typifies the intelligent, questing and experimental mind which drives many people here to not settle for standard medical approaches to "incurable" diseasesi. He also stepped boldly into the scene here, the only member at that time who displayed Rosaceai as his main symptom, so he was in many ways a lone pioneer working at the edge of knowledge in his exploration of the CAPi for treating his condition.

I am tremendously proud of what we have formed here: the Cpnhelp community, whose openess and encouragement supported his explorations, and of Red who has been able to take his experience of the CAP Cpn treatment to his community of Rosaceans and to further contribute to our knowledge and understanding here at www.cpnhelp.org.

Editorial (Rant?)

This is one of my own pet medical peeves, stimulated recently by a thread here on Lyme tests and what bands meet criteria, etc. It relates directly to the difficulties with negative tests for Chlamydia pneumoniae. Yes, I know it's a complex issue, but the basic rule is really a simple one:

A serologyi test, either negative or positive, does not a diagnosis make!

Medical diagnosis is a complex art which includes serologyi, clinical history, symptom patterns, treatment history, and other medical tests. True, some serology carries more weight in the clinical equation that others and may be taken almost defacto as diagnosis. For example, one is treated for many diseasesi on the basis of positive serology, such as for TB or STD's, even if you are asymptomatic and have nothing obvious in your history.

I am sitting in a wonderful pool of natural hot spring water in a lovely and simple spa near Guadalajara called Rio Caliente. It is what one of the forefathers of CPNi treatment for "Rickettsial infection" (we believe an early reference to Chlamydia pneumoniae) for Multiple Sclerosis, a French physician named Le Gac, would have called "balneotherapy." Paul Le Gac, reporting in 1960 before the actual bacterium of Cpn was discovered, used balneotherapy to counter the inflammatory and porphyric side effects of antibiotic treatment. The fancy sounding name was basically soaking in hot mineral water.

So, it is literally soaked with this deep therapeutic tradition, that I may take stock of our first birthday of www.cpnhelp.org. It has been a year since I started Cpnhelp with the web mastership help of Bleu and the savvy medical assistance and enthusiasm of our "research maven" Marie Rhodes. At this juncture, we are facing a very new era in the reality of Cpn treatment for a wide variety of diseasesi. When I began the web site we had only the historical examples of Dr. Stratton and Mitchell's research subjects, many of whom recovered significantly from MSi, CFS and FMSi, and the "MS/antibioticsi poster child" of our dear Sarah Wheldon who had made a rather miraculous recovery from rapidly degenerating MS. There were others starting the Combined Antibiotic Protocol (CAPi), but few had been on it long enough to show any real results.

Now it's a different story. We have people who have gotten their lives back; people who are experiencing return of function, which medical science says should not be occurring; we have people with chronic hypertensioni normalizing their blood pressure and no longer requiring blood pressure medication; we have people with long histories of Chronic Fatigue, such as myself and Raven, coming back to life and those of us who have been in unrelenting chronic pain from Fibromyalgia seeing our pain diminish and disappear. And none of this should be happening, according to standard medical "belief" (I hesitate to credit it as "science").

Some of you may not know the history of how this all came about. Since birthdays are often a useful time for reflection and taking stock, I'll indulge for a moment in recounting how www.cpnhelp came to be.

I've had CFIDSi and then Fibromyalgia for, perhaps, 25 years. I have always struggled through. I completed graduate school, worked my profession, even wrote two books despite my illness. But it was always up-hill. As the years passed it got harder and harder to squeeze out another drop of life force from my diminishing energy and increasing pain. Like many, I've tried everything over the years and managed to find various medical and alternative sources which helped me manage and work, but nothing that cured what ailed me. I constantly searched the Web, and was a member of various email lists discussing all sorts of things related to CFIDSi and Fibromyalgia, looking for answers. The only thing that was clear was that there were a lot of us, more and more every day, suffering as badly or worse than I, and that medicine had nothing significant to offer us other than palliative care or, more commonly, blame for our illness.

Finally, by Spring 2004, I was at the bottom of a 2 year long decline and becoming desperate to find a new resource. I fortunately found a new Fatigue clinic opening in my area which had a broad integrative view of these illnesses. They did a plethora of diagnostic blood tests in their assessment. Among other things, they found that I had high titers of bacteria called Chlamydia pneumoniae, Cpn. It was a bug I'd not heard much of before. Their protocol for treating this was 3 months of tetracycline.

One of the best sites on Chronic Fatigue is http://www.phoenix-cfs.org run by Cort Johnson. It is this site that Astrodiana's story of recovery from CFS via treatment in 1998 with Dr. Stratton. Our site was given nice mention in this month's newsletter and research report:

http://www.phoenix-cfs.org/PR%20X%20June%2006.htm 

"HOT LINK OF THE MONTH– If you were intrigued by Diana’s rather amazing recovery after suffering from CFS for several decades then check out this beautiful site on Chlamydia pneumoniae http://cpnhelp.org/. There lots of information you can't get anywhere else and there is a link to Diana’s story on it."

I have been scanning the new members and was surprised to see quite a few new usernames on the list. Many of you are taking your time to look at what is here on the site, and we have not yet heard from you. Please don't be shy. Lot's of experienced people about who happily answer questions!

One pleasant surprise in checking your profiles is that so many come from the non-English speaking world. I see new members from Nigeria, Iran, Czech republic (thanks Lala and Jan), Turkey (likely thanks to Guner's translation and post on sites there), and elsewhere. We are grateful that you have found us here, and hope this site can be helpful to you.

Please know that your profile information does not pop up unless we seek it, so the best way to get noticed is to post a forum question or blog.

Today is Memorial Day in the USA. A day to remember those who served and those who have fallen. I certainly honor the soldiers who sacrificed in duty to country. My dad served in the Navy during WWII, and I think of him today with appreciation and knowledge of the trauma he carried with him, back from the war.

But there is another group of fallen and sacrificed more on my mind right now. Chlamydia pneumoniae has taken countless lives through many disabling diseasesi. It has stolen the quality of life and life force, literally the ATP life energy, of it's victims. And also, literally, killing others. Cancers, heart diseasei, organ failure from "autoimmune" disease, high blood pressurei, immune dysfunction which leaves one open to other more deadly infectionsi. So many have been victims of this bacterium. So many have been sacrificed unwittingly.

When I first started www.cpnhelp.org one of my dreams was to be able to gather some real data about users experiences and results on cpn protocolsi. I know from my training as a psychologist that having such a ready data pool is a priceless opportunity. It would allow us to go beyond mere anecdote to some real, statistically relevant results. I was joined in this by Marie Rhodes whose training and intelligent understanding of medical research gave her an interest in gathering some "hard" data, i.e. medically sanctioned measures such as EDSS scores, blood results and the like.

But when I started the site 33 weeks ago and put up the first survey, we had only 4 people who had met the three month criteria and could fill out the survey. It took us 8 months to make for reasonable numbers that I felt were worth reporting on. The results of that survey can be found at Survey #1 Results.

Since that report, I've seen others referring to it, like me grateful to have some kind of data they can point to.  We aren't just going on our personal impressions any more.

Having been worried about the lack of data, now I'm getting worried about how data is being used and misused. In case you haven't gathered by now, I'm a worrier by nature. This could be a genetic defect on my part. You've heard the joke about the Jewish mother who gives her son two ties for his birthday? The next morning he comes down proudly wearing one of them, and she says "What's the matter, you didn't like the other one?"

My worries- that these very preliminary results will be referred to as firm findings. The data group is so small (23) that anything in this survey is merely suggestive. And barely that.

This is even more true with any results derived from breaking down findings into subgroups, like the MS/CFSi-FM groups. In that case we have even tinier groups, and less validity to draw on. Such fndings are even less generalizable because each group is now so small that any large differences by any one member within the group will skew the results of that group.

I almost regret having broken the results down this way, especially with those damned charts of which I was so proud, because the charts make everything look so official. Slick presentation impresses us beyond the actual validity of the data itself.

However, our numbers are growing every day. I put up a poll up recently to get a clearer idea of how many people are actually doing the protocol: 35, plus 3 people additional actually done with the thing! Thirty-eight is not bad. When we hit 50+, we might even have some data worth doing statistical analysis on. Getting closer to that every day.

The results of this first survey have inspired Marie and I to take the next step, and build a survey which is much more detailed and will include some hard measures of functioning in it as well. It will take time to develop, but it's coming.

In the mean time, I want to ask everyone to please be cautious about how you refer to any findings of the current survey. If you refer to these findings, please, please use qualifiers like "It looks like..." and "preliminary survey results have suggested..." and the like.

It's good to be enthusiastic about the CAPi's and your own personal experience, but be tentative about how firmly you make claims based on this data. Make sure newbies know that, while the survey found one thing, their own results may differ, and that there is a big range of response within the survey reports.

Thanks to everyone who contributed to Survey #1. I'll be relying on you all to provide even more data next time!