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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Response to doctor who tells me the pathogenesis of ME is unknown

anniekim

Senior Member
Messages
779
Location
U.K
Thank you everyone for the support and help, it's greatly appreciated. The replies confirm to me that I was right in thinking if Pots Is diagnosed the treatment for it may well only have a marginal improvement in my functioning and not enough to outweigh the risk of a hospital trip. I did refuse a hospital trip and chose to have this doctor visit me at home to see if I could access some POTS medications in the small hope they may help. However, as said, I did try florinef which I believe should boost blood volume and it had no effects on me.

I continue to feel the sane approach here in the UK is to have very low expectations that there is anything the doctors can do and many will still have a very skewed and ill informed view of the illness.
 
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