Learnings from international CH boards ?

[Archimedes]

Hi guys,

Sorry if this is a stupid question or done already. I would assume there are similar boards then this one here around the globe but posting is very likley not in English. 

I mean like new patient driven findings discussed in Mandarin, Russian, Indian you name it. We can't count on users from there popping up here (just like the other way around )

Like busting or D3, someone might have discovered something else recently and it may take time until it spreads as you sure agree.

I remain on my theory that this whole condition isn't as rare as we think - we are just few who experience it more painfully due to some other condition-mix on top, but that could still mean there remains common ground earlier in the chain where some undiscussed  (hopefully non pharmaceutical) treatment options could arise.

Again apologies if this is done already by (multilingual) board members. I can help sharing German stuff but the main CH page is a pretty much dead board. 

[Pebblesthecorgi]

Your point is well taken.  Those who cruise these sites regularly are probably the worst of the worst or professional patients.  Ideas bounce around and back and forth but it remains anecdotal.  We need  decent studies so we don't end up with a little bit here and a little bit there.  Treatments need a proper protocol to evaluate efficacy. The psilocybin study will go a long way in evaluating that form of treatment either validating it or dismissing it.  I guess what I am saying is it would be great ot get a world perspective on things but in the end we need a cohesive way to evaluate the effectiveness of treatments.  This includes proper diagnosis and properly applied interventions.  

[CHfather]

As I understand it, there are active Facebook groups in some countries.  I believe that for example the Finnish group, led at least in part by Tony Only, has been quite active, at least at one time.  Tony has been good (on and off, at least) about sharing ideas and learnings from there.  I believe that that group engaged more with the licorice root protocol than this group did, but I have no idea whether that interest faded or remained strong. Certainly the US Facebook group "Cluster Headaches" was more focused on DALT than the folks at ClusterBusters.  Guess I'm just saying that there probably are ideas and experiences out there that are not fully captured within this group, whether they are in English or in other languages, and it surely would be good to have some "clearinghouse" to be sure that all valid or even potentially valid knowledge is as available as possible.

[Archimedes]

Thanks both. Ah Pebbles , you got me wrong. I didnt mean such sites promoting snake oil or whatever, I really just meant regular boards on the same topic like this one here.

Someone around the globe might have recently discovered something similar like MMs , D3 or whatever. Yes, this will make it onto here at some point if valid but it may take awhile. I am not interested in taking risks either and research is key as you say. Still and at least for additional theoretical input it may be there is new stuff around we haven't heard of (yet) due to a language barrier.

As you say it is / will be bits and pieces but why not. Up to everyone themselves to consider if BS or an actual piece of the puzzle