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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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My Visit to Cleveland Clinic: Do Mast Cells Cause ME/CFS?

I recently went to the Cleveland Clinic functional medicine group and consulted with Dr. Alice Prescott. A patient told me that Dr. Prescott helped him a great deal. Dr. Prescott believes that I have MCAS mast cell activation syndrome, which I had suspected but since neither my hematologist or allergist locally are familiar with it I kind of forgot about it. So I was pleasantly surprised when Dr. Prescott brought it up. She ordered test but in the meantime told me to increase my antihistamine, start Quercetin Ascorbate 500-100 2x a day Designs for Health, and Saline wash 2x-3x a day and add 1 drop 5% lugols iodine to the saline wash. She said the AA ascorbic acid that I take is a mass cell stabilizer. She also said to read Dr. Afrin's book “Never Bet Against Occam.”

You can learn about MCAS on the TMS website https://tmsforacure.org It seems to be comorbid with ME/CFS and CIRS chronic inflammatory response syndrome. Some physicians believe it may cause ME/CFS. Others believe that mold causes MCAS. You follow the trail: Mold > MCAS > ME/CFS... it is not definitive, just a hypothesis.

Here are useful articles on ME/CFS + MCAS:

https://me-pedia.org/wiki/Mast_cell_activation_syndrome
https://solvecfs.org/theoharis-theoharides/
https://www.healthrising.org/blog/2016/05/09/activated-mast-cell-activation-syndrome-mecfsfm/
https://www.healthrising.org/forums/tags/mcas/

And I highly recommend reading this one: http://simmaronresearch.com/2018/09/brains-mast-cells-causing-chronic-fatigue-syndrome-mecfs/

Also within the functional medicine group, I have an RD who put me on an elimination diet, and I have a health coach who is an RD.

The Cleveland Clinic Functional Medicine Group takes insurance!!!! I have not found a single FMD who does, so yeah for me! After the initial visit in person I can do Skype-like virtual visits. These are not covered by my insurance but they certainly are convenient. The health coach is FREE and I Skype with her once a week!
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I AM
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