Re: Testing for CFS/M.E.

[Guest guest]

WHY?

That's easy:

Go for the lowest cost and least risk first.

Ampilgen is not low cost. As for risk -- because of low case history, it is an

unknown at best.

The other deciding factor that I would LOVE to get hard numbers on is the

incidence of " positive tests " versus time since onset of CFS.

For example: Nicolson has observed higher and higher numbers of

different mycoplasma when charted against time since onset. I don't know what

Berg's experience is with ISAC (hopefully he'll publish or make available soon

-- I suspect that he is nearing the point of having a sufficient sample showing

the incidence of each type of coagulation versus time since onset [i suspect

severity of coagulation increases with time]). For RNase-L testing, I am in the

dark - my theoritical model suggests that positive RNase-L will like be rare for

those with CFS < 1 year but common for CFS > 10 years. I am very aware that any

such numbers are likely to be very bias in terms of sampling techniques - but

not so much to be useless.

This information may provide a 'best choice of test/treatment' for MDs treating

CFS. Any chance of doing a few emails (with your splendid contacts).... I'll

gladly do the statistical analysis if you can get people to release the

essential data [time since onset, test result].

Ken M. Lassesen,

RASC, BS(Statistics), PC (Educ), MS(Commerce)

Microsoft Certification Contributor

---- Original Message -----

From: Schweitzer

From: Schweitzer <schweit2@...>

lists tests that should be gotten for CFS/M.E.:

> And then (and only then)

> RNase-L deficiency

WHY?

[Guest guest]

There's more to the RNaseL test than just getting Ampligen -- it gives

an etiology for the disorder. The 37kDa discovery was made

independently of Ampligen -- it's just been a coincidence that it has

turned out to be a useful marker for the subset of CFS/M.E. patients who

do well on Ampligen. But what it IS is a condition in and of itself.

But we were talking at cross-purposes -- you meant right now, given the

frustrating reality that most of these tests aren't covered by

insurance. I was talking of the future, and in the future I believe

Suhadolnik's discovery will be critical to understanding CFS/M.E. for

the bulk of patients who have it.

Schweitzer

mailto:schweit2@...

[Guest guest]

I suspect you are very right.. a lot of my interest is the early CFSer,

having had it (or something that matches CFS as we now know it) twice - and

well on my way to a second recovery (26 yrs between). Some of the stuff

like Whey and alkaline blood is making better sense of my first recovery [my

MD put me on a high protein, low carb diet for weight not too long after my

" mild " onset 26 yrs ago - I now suspect that it was a significant factor in

my recovery then]

I suspect (off my model) the RNaseL characteristic is not a pre-CFS or early

onset symptoms -- but is a consequence of the degradation of the blood

transport and digestive systems of the earliest stages. Those degradations

also results in the RNA changes (environmental adoption/evolution).

Unfortunately, after 6 months of the degradation (the time to CDC

definition), the ability to detect the chicken and the egg is impeded.

- remember my model is just a model to me [an explanation that accounts for

the most observations with the least complexities and has predictive

abilities].

My emotional concern is the many who are financially and mentally weak due

to this illness, and trying to find 'the best suggestions' for them. I

believe a 'model' that appears to explain symptoms and behaviors helps them

feel better in control (less victimize) and likely helps in the recovery

process.

Ken

----- Original Message -----

From: " Schweitzer " <schweit2@...>

> But we were talking at cross-purposes -- you meant right now, given the

> frustrating reality that most of these tests aren't covered by

> insurance.