Carl Sagans ECREE may have been stated with outer space in mind, but it surely points out the important principles of all scientific disciplines. Under all circumstances, one could also say that LP have some outer space touch to it.
ECREE = Extraordinary claims require extraordinary evidence.
When dealing with LP we have the nerves and slippery tongue and words of snake oil salesmen. They claim that a study from UK proves that LP works. Among other obscure things, a minor qualitative study from Norway some years ago supports that claim. There are claims, speculation, faith, whatever, but there are absolutely no evidence whatsoever.
Then they promote LP as some sort of cure to everybody again and again. They’ve done it long before any study at all on LP. Last few years they can point to a couple of studies that have no evidence to it.
When confronted with unsubstantiated propaganda, they will at some point, it takes a lot to get there, finally back down and say something like, “it works for someone”. The response is, why must you be vexatious activists? All we have done is that we first say that LP works for everybody, which is not true, which you vexatious patients points out, so then we say that LP at least works for somebody. And they don’t understand why patients react? Obviously they do. It is cynicism to perfection, always adjusting wording just as it pleases them.
They also have this final ace to sort of stop any discussion. If confronted with what is meant as constructive opinions, like what we actually do know of harm, concerns regarding methodology and other concerns. If such things are brought to attention and they don’t have any arguments left, they do this magical switch from we have studies showing this and that, to suddenly:
We just don’t know. We need to check this out. We cannot continue to discuss the efficiency of LP, meaning that almost any study imaginable on LP are legitimate! That’s how we get rid of vexatious patients, all ethical concerns, everything! It is almost just as magical as LP itself.
At the moment I think it is fair to say that these people claim that LP helps everybody. As above, there are inconsistent arguments. If challenged, they will at last back down and say “works for someone”, but the impression they give and want to get across in public, is that LP is some kind of cure for ME patients in general. So what they make is this extraordinary claim. If so, and if the study sees light of day, what should one demand when it comes to extraordinary evidence? I can think of a couple of things.
- that long term severe patients that have been trying but deteriorated over years, bounce back to full work. Measured and followed up for at least 3-5 years.
- that long term severe patients that have little physical capacity and experience serious PEM suddenly bounce back to do whatever activities without experiencing any PEM.
- that long term severe patients bounce back to do whatever it takes that is considered normal for that age group.
And so on.
