Write a letter to your MP.
Raise a complaint to the NHS
The basis for each letter could be along the lines of:-
Symptom list being ignored
Doctors not acknowledging the condition
The destruction to your life
Scientific data confirming the existence of PFS.
Ask that the drug safety be reviewed.
Ask for it to be escalated to the health minister.
Ive also contacted an American organisation who looks at injustices. I got a reply saying they would like to help but are currently swamped with work.
We need to try to do something ourselves as time does not stand still unlike things on here.
As said before this forum is a closed dark room we need to step outside of it and try to make a difference.
My neuro physciatry dept stated yesterday that it mostly seems like a mood disorder, I raised the prospect of contacting the NHS ombundsman as it’s bordering on neglect. Within minutes she decided to send a referral to a neurologist and ordered another brain scan.
If we make noises / shake cages outside of here it’s a start. Instead of being a bunch of desperate sad men fumbling around achieving nothing some fortunately recover with time but thats not down to any progress as a unit. This was happening over a decade ago.
I’ll ask again can you consider doing a video for the YouTube project.
Sitting on here complaining will get us nowhere.
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