Time for advocacy and change?


Senior Member
It's been quite a revolutionary time recently for ME/CFS news and research, with the new NICE guidelines finally being released, long covid slowly growing in the world and now a few promising treatments emerging, eg HELP-apheresis (and associated treatments), potentially the autovaccines, increasing amounts of various peptides and drugs, etc.

It seems like this momentum has been ramping up gradually over the last year or so, and we're at an all-time high in terms of global understanding and interest in ME/CFS.

I very strongly feel that we should keep building this momentum, encouraging more research into the area, more news coverage, and overall increasing the exposure of this illness as much as we can.

Does anyone know how we can help to push this forward? Maybe there are some of us that are mild/moderate that have links to mainstream media or highly viewed social media accounts and could speak out? Should we petition for change like what is being done in Germany?

It seems like we have a great opportunity here to make some permanent change in terms of increasing the visibility of ME/CFS and driving the commitment of the world to finding a permanent cure of all potential sub-types.

I hope there are at least some of you with some experience in this type of arena! Let's try and make a difference somehow, for all of us who are ill and for all of those yet to fall ill.