Re: that protocol

[Guest guest]

> So what's happening with that protocol-

> Is there ANYONE that's be able to get off the tiny abx doses

> and stay improved for longer than 5 minutes?

> Barb

> \

I don't know that anyone's gone off abx. However, I feel like there are

a fair number of people over there with very impressive results.

Which means nothing, unless you know how many people tried it. Suppose

43 people try the Vanderbilt protocol and 1900 people try the MP: there

would then be way more success stories from the 1900 people who tried

the MP, even if the Vanderbilt were more effective.

How many people tried the MP for (say) at least 4-5 months? It's very

unclear. If you've been watching them for the last 2.5 years like I

have and you don't think the uh, " culture " over there might often serve

to discourage some people from reporting non-progress -- well, I think

you're nuts. Personally I think many hundreds of CFS patients probably

tried it for at least 4-5 months, but I don't have evidence for that.

Anyway, there is a small minority of ultra-responsive cases in CFS and

many of the other diseases. I know two reports of total remission of

CFS on doxy alone (which is a Terribly weak regime).

If you really want to see what's going on... you have to observe the

people who came on the boards /and posted/ as " abx virgins, " before

starting treatment. What percentage of them quit, got better, got

nothing? People who have huge gains are obviously likely to become

advocates for therapy, so observing them means nothing - nothing beyond

anecdote. When new people suddenly appear and say, " hi I started XYZ 3

months ago, and just wanted to post to say I'm experiencing this this

and this " -- that is also an anecdote: there are others (possibly way

more) who had no improvement and never posted anything, at all. So you

don't have a scientific sample, and learn nothing solid about the

success rate.

When 15 people get on the boards who /haven't/ ever taken abx before...

and you watch them to see whether they do things properly, and how many

of them get better... then, and only then, are you learning something

material about an actual /rate/ of success.

Or, you can look at consecutive cohorts, like Donta's published

observational treatment studies. Same thing. No controls, so, just like

observing people online, you don't know if you might sometimes be

observing placebo effect or spontaneous remission. (However, there is

some study I haven't read showing that the placebo effect, which is

strong in major depression, is generally weak in CFS.)

People who have no results and quit don't stick around posting about

abx, obviously. What the culture of the board is, then comes into play,

as it makes a big difference whether or not they are going to directly

state their treatment failure before leaving. It also makes a

difference in whether or not people who don't post will ever get on and

say, " hi, I've never posted before but I have just tried this for 8

months, and I'm quitting. "