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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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The Elephant in the Room - Jamie's new blog


Senior Member
Thanks currer - never thought it did having come through the worst (encephalitis) with recognition etc loss and though other problems persist my memory etc is better than those about me now.


Senior Member
Yes, I've been ill thirty - odd years and I dont think that my memory problems are progressive.
It just depends on how much I use it. As with everything it seems to get worse the more I use it/the more I do.

I'm glad that you are finding the same thing, Enid. Wouldn't it be nice to have some proper longitudinal studies of this disease, instead of no studies at all (hardly!)

I'm glad to see that Dr. Deckoff-Jones is still interested in MLVs and still writing about them.