Question

I’ve read on the internet that there is a condition called mast cell disease that has a number of symptoms that overlap with ME/CFS. Mast cell disease can also cause allergic symptoms. I’ve asked my GP about this but she doesn’t seem to know anything about this disease. Is this something that I ought to pursue?

Answer

Although mast cell disorders have a number of symptoms and triggering factors in common with ME/CFS, and I know of a small number of people with ME/CFS who have been diagnosed with mast cell disease, or are being investigated for this condition, there isn't any research evidence to indicate that it is linked to ME/CFS or that it is more common if you have ME/CFS

There is, however, some research evidence to indicate that mast cells could be implicated in the pathogenesis of ME/CFS. And this connection could help to explain why tricyclic antidepressants such as amitriptyline can sometimes be of benefit in ME/CFS.

From a research paper abstract:

Mast cells and their mediators have been implicated in inflammatory diseases, including ME/CFS. Mast cells are located perivascularly (= in blood vessels) in close proximity to neurons (= nerve cells) in the thalamus and hypothalamus, (= parts of the brain), especially the median eminence where they are juxtaposed to corticotropin-releasing hormone (CRH)-positive nerve processes.

CRH activates mast cells to release vascular endothelial growth factor (VEGF), which could participate in neurogenic inflammation and contribute to the pathogenesis of ME/CFS. Such mediators may be released locally in the brain or may cross the blood-brain-barrier, which can be disrupted by stress, subsequent to mast cell activation.

Given the above, we hypothesised that tricyclic antidepressants may be helpful through inhibition of mast cell release of pro-inflammatory mediators:

Research paper can be seen here

More information on mast cell disorders

Please let us know if you have ME/CFS and have also been diagnosed or investigated for a mast cell disorder.