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TOPIC: Survey of MCS

Survey of MCS 4 years 11 months ago #13

  • Jodie
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Yup ... and all the above would be helped along *enormously* if MCS were properly acknowledged as a disorder. The EU has tried to get WHO to do this & failed, tho I hear they will keep trying..at which point all of these countries www.who.int/countries/en/ wd be obliged to have a protocol to deal with sufferers. As it is, instead of being helped , those affected are told they are nuts & end up living as outcasts, often in dire conditions. ES sufferers are in an even worse situation, literally worse by the day. This is very inconvenient for 21st century society since it runs on the very stuff that makes us sick , so don't think serious acknowledgement will happen easily, even with more understanding of the biology - the emphasis will still be to say that there's something wrong with us rather than society, there's too much at stake huh? I think you were very lucky with the housing Mr Maff, tho I don't think in Europe generally we are treated quite as badly as our US friends, just something I've noticed..
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Survey of MCS 4 years 11 months ago #14

  • Jodie
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The other point I was trying to get across I guess is that if there is physical damage (i.e. in my case mast cells are apparently damaged and with Mastocytosis there is a proliferation of mast cells) then the remedy is not Gupta, it is to stabilise the mast cells, tho Gupta might help it is not a priority as a remedy. It would be a bit like trying to cure the symptoms of lacerations & broken bones with mind training. Might help around the edges of the problem but doesn't address the real issue. I'm sure there are a lot of similar disorders with MCS, for instance Porphyria is thought to be very under diagnosed and there are probably subclinical versions of other diseases causing MCS type symptoms + they haven't really got diagnostic tools for allergies 100% sorted yet, apart from maybe IGE reactions.
Last Edit: 4 years 11 months ago by Jodie.
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Survey of MCS 4 years 11 months ago #15

  • Kiahjo
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Re: your question regarding other illnesses: I think it's complicated and I certainly don't profess to know the complexities. I suffered severe asthma as a child and young adult. To this day, I'm 100% certain it was NOT related to my overactive limbic system or activated by stress. And I'm sure all the retraining in the world would not have helped. Multiple ER visits and hospitalizations and weeks in bed ~ and I only got better when they came out with the newer inhalers and medications. So point well made. That's what I mean about "necessary but insufficient" in some cases. Brain retraining techniques may have helped at those moments of life or death panic, but using it as the only treatment? Wouldn't be here.
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