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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Treatment at OMI

Ninan

Senior Member
Messages
523
Does anyone her know (or know where to find information about) how the OMI institute treats severe (the most severe) cases of ME?
 
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Mary

Moderator Resource
Messages
17,321
Location
Southern California
@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.
 
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