Guys,
I'm going to refrain from going head to head with the study, but something to consider is the statistical validity of same machine results over time, i.e. most of us get the majority of our results from one Hema and one type of platelet analyzer.
If I read the study correctly the issues with accuracy, for the least reliable machine, made the results statistically unreliable about 16% of the time. Again, from the worst performing machine.
And, the error rate, as a ratio, was predictably worse for people with low platelet counts than high platelet counts.
So, even if the machines used in the UK study are analogous to the machines in use here in the U.S., the vast majority of the time in the vast majority of the cases, platelet count would still be a statistically reliable data point when corrected for the machine's error rate.
But here is possibly a larger point- there seems to be a subtext of low expectations, resignation, and acceptance for people on this forum.
I don't agree with that. I don't agree that ITP comes out of nowhere and that no improvement in diet, lifestyle or environment can positively affect or even correct it.
I grew up in a very provincial part of Central Pennsylvania and the atmosphere of diminished expectations (which British forum members might recognize as well) was quite prevalent. It probably goes without saying at this point that I find this attitude unfortunate and dispiriting.
I am a big fan of reality, and I understand that most people won't solve their ITP riddle, and that for many people it may not be solvable. But suggesting that a possibility doesn't exist, no matter how much experience you have, how much hope you've seen dashed, or how many dead ends you've run into, is not compassionate. It's counterproductive.
I was wrong about the specific math of platelet counting (which Sandi correctly called me on), but my theory, that in some cases (which is all I've ever claimed) platelet count data can be statistically evaluated against external stimuli, is absolutely valid, and the study actually supports this.
I absolutely believe that in cases where the platelet changes (plus or minus) exceed the statistical margins of error and the results are statistically durable (i.e. occur over a long enough period of time to be legitimate)that the results can be compared against changes in diet, lifestyle, environment, etc. for clues to factors that may affect severity.
If it's understood and accepted that the common cold can affect platelet counts, why would it be unknowable that something else (gluten, mold, any specific allergen, etc.) does the same?
Finally, I offer this via Apple:
Here’s to the crazy ones. The misfits. The rebels. The troublemakers. The round pegs in the square holes.
The ones who see things differently. They’re not fond of rules. And they have no respect for the status quo. You can quote them, disagree with them, glorify or vilify them.
About the only thing you can’t do is ignore them. Because they change things. They invent. They imagine. They heal. They explore. They create. They inspire. They push the human race forward.
Maybe they have to be crazy.
How else can you stare at an empty canvas and see a work of art? Or sit in silence and hear a song that’s never been written? Or gaze at a red planet and see a laboratory on wheels?
We make tools for these kinds of people.
While some see them as the crazy ones, we see genius. Because the people who are crazy enough to think they can change the world, are the ones who do.
So here's the thing: call me crazy, but I think that for some ITP sufferers that the causes are knowable, and the riddle is solvable.
If you read back to my very first posts, I stated this, and nothing I've seen in 3 years with ITP has changed my perspective. If anything, I feel more certain about it now.
I'm not even saying that I'm one of the people for whom this is true, but that lack of certainty will not keep me from trying.
The status quo sucks. Hemas are focused on 'treatments' that have efficacy, but frequently come at great cost. The treatments are either about hobbling your immune system so you kill platelets (and disease and illness) less effectively or growing additional platelets to compensate for accelerated platelet destruction, which I liken to putting more paint on a rusty spot.
The cause matters. The cause in knowable, and we should all believe this is possible.