For people wanting to discuss the contested syndromes, here are a couple of the threads:
Mast Cell Activation Syndrome (MCAS) - discussion thread
EDS and ME - is there a connection? hEDS
@Tilly, it would be good to hear on those threads what you have witnessed and lived through that makes you certain these syndromes exist.
As always, we start with confusion, opinion, and a determined effort to not accept the possibility and to treat. What are the long-term outcomes of not treating or diagnosing Mast Cell we don't know.
My personal experience is that I have issues from time to time with rashes and skin complaints but my Son had rashes during viral periods that were different to my other two older children. These rashes increased with certain foods, exercise, sun/fresh air, grass etc but were random.
When my son became very sick and was then diagnosed as having somatic CFS and given GET, these rashes became more violent, along with all sorts of symptoms we all recognise.
I looked somatic CFS and found a confusing mish mash of nonsensical garbage that made no sense to what I saw in my son, yet drs thought this was the right diagnosis for him and dismissed all his symptoms.
I then began to look up the charities and found AFME children's groups, where I soon became aware of these patterns in other children - Viral symptoms, rashes, gut issues and the connection with EDS and POTS.
It was not until Angus was diagnosed with celiac disease, that I was introduced to Mast Cell.
I became aware of celiac, diabetes, hEDS, EDS, POTS and autoimmune connection for mast cell and histamine intolerances.
Over the last 10 years and belonging to many groups who have parents struggling with some awful situations, the pattern of PEM, Mast cell/histamine, Viral symptoms, rashes, gut issues and the connection with EDS and POTS has remained steadfast. This reaches into the thousands of hidden children not treated by NHS.
Those that get treatment for Mast Cell from private means, mostly do much better than those that don't. With some altering their diet also get some good results. The rule of thumb is give low histamine foods a go and record the differences you find. I have to say the Visable app makes this a lot easier. If you see a positive change find some support and help.
Those that go into hospital and are recognised as needing treatment for Mast Cell do better, until the psychologists come in and take the treatment away. They then flounder, but the connection is never made as PEM, Mast cell and POTS are difficult to tell apart when dealing with the most severe. The times I have been left in despair, as yet again you can point out the simple fact patients came in walking and certain treatments made a small improvement and when it was stopped patients became so unwell they could no longer tolerate sitting up in bed or food. Somehow the professionals think their knowledge and understanding of science and the PACE trial Trump their own eyes and charts.
However those that are treated for POTS, Mast Cell and PEM is understood again do much better, so this is also worth looking at more deeply, regardless of the opinion of doctors? lessening suffering has to be acknowledged as a good thing? Sadly because of the attitudes of those that dismiss out of hand Mast cell, instead at looking at the evidence through the lived experience cause so much stigma it is difficult to get the understanding needed.
I do not understand why people are not tested for mast cell or treated for it, surely it is worth it to stop the suffering we hear of on a daily basis? However as we know the NHS drs do not do the correctly tested or in the correct way and it is never timely. If more research into testing was put in, we would know a lot more, but again Mast Cell is dismissed. We should also look at the connections in menopause and during periods, as more women have ME and the issue of mast cell is more pronounced at these times, it may give us more clues on how to diagnose and treat.
Angus was given 1 histamine test which showed histamine intolerance and many skin prick tests where he reacted to everything. His prescribed mast cell treatment was denied him by his GP, as so many others have too. Do we look for the damage done to our hidden young people?
I have done the best I can with his diet and the over-the-counter products, which have undoubtably made a huge difference (I say huge, but even the most slight positive difference is welcomed) but I do wonder what his life would have been like if he had been given what was prescribed for him many years ago.
For all those that are still struggling/suffering and those who have lost their lives through ME and Mast cell I hang my head in the shame of it all. What is the harm of giving the prescribed medication, tracking the outcome to see if there is a positive reaction as we have.
The lived experence