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TOPIC: MCS as Mast Cell Activation Disorder

MCS as Mast Cell Activation Disorder 2 years 10 months ago #19

  • Jodie
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Hiya Maff.. Do u know at what level of officialdom MCS & EHS are now accepted? WHO seems to be the ultimate authority. I 've heard that MCAS (as opposed to MCAD) is up for some sort of WHO coding this year. MCAD is pretty much accepted, tho it still seems to depend on which doctor you see. Some doctors are in the habit of simply refusing to look at or consider solid evidence, even if their peers are agreed on it, its quite bizarre.
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MCS as Mast Cell Activation Disorder 2 years 10 months ago #20

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The MCS and EHS recognition is coming from the World Health Organization (WHO) Jodie, so it's a very big deal! They've had multiple discussions on the subject according to a a number of articles I've skimmed the past few months. I am hoping to post a news articles on it after I've done a bit of proper reading. The ultimate official recognition is when they assign specific codes in the International Classification of Diseases (ICD) - do I hope this is the case (I think it is!) with MCS, EHS and mast cell disorders. The only caveat is that they need to place them all within the appropriate physical illness categories, the last thing we'd need is them classifying them as psychosomatic or similar!
If you are going through hell, keep going - Winston Churchill
Last Edit: 2 years 10 months ago by Maff.
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MCS as Mast Cell Activation Disorder 2 years 10 months ago #21

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Ah interesting.. Many of us have been lobbying the EU Parliament for years to get WHO to acknowledge MCS & EHS . I'd given up following it, the EU & WHO sites are practically impenetrable, I couldn't make sense of them. It will be a huge step forward if we get WHO acknowledgment, I'm sure there will still be massive resistance but the walls will start crumbling, I feel like the sun might be coming up after years of dark winter!
Last Edit: 2 years 10 months ago by Jodie.
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MCS as Mast Cell Activation Disorder 2 years 10 months ago #22

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Dr. Lawrence Afrin who is a world expert on mast cell disorders has written what he says will be his one & only book - recently published & I'm told is very readable, if anyone's interested - www.amazon.co.uk/Never-Bet-Against-Occam...12383d4f3eb3669b6170

Here is a review which is actually a pretty good write up of MCAD also: www.prohealth.com/library/showarticle.cfm?libid=28935
Last Edit: 2 years 8 months ago by Jodie.
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MCS as Mast Cell Activation Disorder 2 years 10 months ago #23

How can I help? I find new research all the time when searching for answers. New studies showing different methods would it help to post those here would it help to share information ?my mom ,brother and I all are allergic to everything from birth mom had kidney problems my brothers turned into schizophrenia mine is the autoimmune /fatigue mother effected her lungs and she died in 2012 from asthma attack . I'm not OK with settling for treating the symptoms the more we talk about things the more things come to surface. I live in Tennessee and there are no doctors here that know anything about mast cell activation. My immunologist infectious disease doctor cardiologist and primary care doctor all thought it was a crazy idea when I mentioned it (Mast Cell Activation)
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MCS as Mast Cell Activation Disorder 2 years 9 months ago #24

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Hi there! Yes of course post research etc., that's what this board is for. :) I had not thought to add any, but there's plenty available. If you want a doctor in yr area of the US I wd ask on one of the Facebook groups as they are very up to date - try this one www.facebook.com/groups/486532874778463/
Last Edit: 2 years 9 months ago by Jodie.
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