As I have said, I don't want to be a complete wet blanket, but I doubt the people involved in producing MEpedia material are really aware of just how difficult a task this is. The scientific literature is full of rubbish these days. Finding people who can give a genuinely balanced overview is hard. Flagging pages as hypothesis or speculation may help, as a minimum, but the downside is that legitimises including what may be very misleading material.
I agree, but we need to be careful not only to weed out the bad but to make sure we don't throw out the good.
I think there are important differences. For Wikipedia there are dedicated moderators who systematically filter material. They are not always the right people but most are OK. Also for Wikipedia every expert in a field is likely to feel a duty to try to help get balance. I have rewritten four or five large Wikipedia pages and taken many hours over it because they deal with my own specific areas of expertise. I think it is unlikely that anyone with the relevant expertise will do that for MEpedia. Wikipedia does run into trouble with contentious topics and the problem for ME is that almost everything is contentious, except the symptoms and epidemiology.
There is an old axiom, build it and they will come, if we don't try because of what might happen we won't accomplish our potential.
Sorry, but I don't think that is true,
@Alvin. I said nothing about conclusively proven of course but I am talking about findings that are replicable and have a very plausible interpretation in terms of what is going on. Lack of replication does not hold up medical science.
I partially agree, though the replication crisis shows what happens when things are not replicated and weren't, those things held up fine till the replication was finally attempted recently.
I would love to see everything replicated in triplicate by independent teams, we don't have the money or resources or researchers. If we did then i support this fully. In fact in all of medicine i would like to see money specifically put towards replication. Medical research could even have teams who specialize only in replication. They would likely be more objective since they have little skin in a particular outcome.
In the cases where new findings over the last thirty years have proven reliably replicable, maybe half a dozen major examples a year, massive replication has usually occurred within weeks or at most months. When a new autoantibody pattern was found for Wegener's granulomatosis or Helicobacter was identified in stomach ulcers routine labs in university hospital throughout the world repeated the test as soon as they had read the paper and got the reagents and found the same thing. So in the great majority of cases everyone can talk about cast iron results by Christmas. There simply is no problem for findings that really stand up.
But ME/CFS is a niche area, as i just said our resources are minimal and this is not happening for our disease. I would love for this to change.
The reason why findings in ME have not been replicated is mostly that they are not replicable or that other scientists have not thought the original report was going to lead to anything significant enough to be worth replicating.
I suspect the more likely reason is that there are so few researchers working on ME/CFS to do the replication and derivative research. Chicken and the egg, if we say the research is thin so we can't come to conclusions or talk about the results we do have or build on it then it will stay thin and unbuilt on. We need to break this cycle, get more people and more money on our disease. This is likely one of the many goals of MEpedia. I seem to recall
@JenB saying she has been contacted by researchers who read technical info on MEpedia.
Should we put disclaimers where needed, you better believe we should. As an aside i personally do not think enteroviruses have much to do with our condition, beyond perhaps a trigger, probably one of
many. That said we should look at what we have and we should look at where we want to go next. If the link turns out to be minimal then we should find that out, if it turns out to be a key piece, we benefit from proving that.
I am often reminded of the
streetlight effect, i wish we could avoid it.
But this isn't how Wikis work. It's an open publishing platform. We can't stop people from creating new pages, nor should we.
All of these conversations were had 13-15 years ago re: Wikipedia.
Well said.
