Mast cell disorders and ME/CFS (BBC medical item)

[charles shepherd]

MEA website follow up to a BBC medical programme item which referred to a possible link between mast cell disorders and ME/CFS:

http://www.meassociation.org.uk/201...wing-last-nights-bbc-programme-16-march-2017/

Dr Charles Shepherd
Hon Medical Adviser, MEA

 

[keenly]

I agree 100

 

[Ravn]

If mast cells are implicated in ME then treating for mast cell activation could conceivably help ME symptoms. In theory. Does anyone have personal experience with this? I have both diagnoses, ME and MCAS, and so far mast cell meds have resulted in notable improvement in the more allergy-like symptoms (flushing, dermatographia) but no help at all for the classical ME symptoms like PEM. But have only been on the meds for a couple of months.

 

[mdb55]

If mast cells are implicated in ME then treating for mast cell activation could conceivably help ME symptoms. In theory. Does anyone have personal experience with this? I have both diagnoses, ME and MCAS, and so far mast cell meds have resulted in notable improvement in the more allergy-like symptoms (flushing, dermatographia) but no help at all for the classical ME symptoms like PEM. But have only been on the meds for a couple of months.

Do you mind sharing which medications? I've tried over the counter ones for allergies.

 

[Ravn]

H1 & H2 anti-histamines at very high rates plus sodium cromoglycate plus vitamin c (all as prescribed by doctor).