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?
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:
Please let us know if you have ME/CFS and have also been diagnosed or investigated for a mast cell disorder.
Information provided by The ME Association should not be construed as medical advice. Don't assume any new or worsened symptoms are simply the result of having ME/CFS or Long Covid. We recommend that any information you deem relevant is discussed with your NHS GP as soon as possible. It is important that you seek personalised medical advice from the GP who is in charge of your care and who knows you well.