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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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Treating OI/POTS and MCAS to improve CFS?


Senior Member
Recently I am pretty confused about some comorbid diseases (especially dysautonomia [OI/POTS] and MCAS). Both of these diseases are causing similar symptoms to CFS (?) but seem to be somehow treatable? Did I get this wrong somehow or is it the way to go to treat those conditions if you are affected by them? I guess that this will not cure CFS of course, but it could help a ton?

Many thanks for clarifying!


Senior Member
It's all pretty complicated. There are a handful of conditions that commonly overlap. So they must be connected and there's growing understanding of the connections but still a lot not understood. An example would be.... understanding the connections between connective tissues (when they are not working right in EDS), mcas, dysautonomia, spinal instability (from connective tissue problems), and other neurologic problems (like ME).

For improving versus curing ME, I guess right now I think of it like, 1) reducing system burden or reducing certain processes can help improve PEM, potentially. 2) some find that treating certain problems/conditions/diseases, eliminates their PEM.

There's so much unknown about the processes inside of us that cause various symptoms like PEM, in one individual to the next. Examples of how PEM has been cured in some: autoimmune dysautonomia, instability in the spine, reducing exposure to mold (like a story the other day). If you look at recovery stories, there's sometimes uniqueness, sometimes similarities.
Individuals can be cured, but there's no guaranteed treatment or set of treatments that will do it, and no guarantee at all. We will get closer with more and more people able to be cured, through whatever means, at some point....

With mcas my doctor explained it like, if my body is spewing out inflammatory chemicals constantly like prostaglandin, leukotriens, histamine, it's gunna be harder to heal from anything, harder for the immune system to come back to better regulation, and can make other conditions progressively worse. Mast cells are part of the immune system. Clinically he's found it's one of the barriers to treating infections if it's not being managed.

Definitely everyone should treat all the conditions they can, if only to have a better life, but also because it can all contribute to reducing or eliminating ME symptoms. Some connections are more known and theorized about, with research and recovery stories. So some things are going to have better chances in improving ME symptoms than others. I.e. fixing a kidney not a high chance versus treating an autoimmune neurological disorder.

That's my perspective. Hope it helped :)
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