Treatment at OMI

[Ninan]

Does anyone her know (or know where to find information about) how the OMI institute treats severe (the most severe) cases of ME?

 

[Hip]

Yes, at the Open Medicine Institute you have people like Dr Kogelnik who treats patients. At the Open Medicine Foundation they research into neuro-immune diseases, with particular current focus on ME/CFS.

You'd think knowing that ME/CFS patients suffer from brain fog, they would not choose such confusingly similar names!

 

[Mary]

@funkyqueen was given rituximab at OMI - I think it helped her initially and then stopped helping. (http://forums.phoenixrising.me/index.php?threads/my-rituximab-experience-for-me.38239/)

Actually, I think what happened was she unable to continue treatment where she lives, the above thread is rather long and goes into more detail.

@Gingergrrl also has been to OMI. She is very ill, though she may not have ME/CFS. I believe she's currently taking a break from the board but hopefully will return and you could ask her about her experience.

I'd consider myself medium sick - not bedridden, and not extreme POTS or OI, but my life is seriously disrupted - I can't work and am quite limited in my daily activities. I went to OMI, they did a lot of testing but were unable to help me.

So I think it's a mixed bag, depending on your symptoms, etc.

 

[IreneF]

I had rtx at OMI. Remission was brief.

CFS/ME has no cure, and very limited treatments. Still.

 

[Ninan]

Thanks @Mary and @IreneF

Did you get to continue rituximab, IreneF? Still stopped working?