Mould, CIRS, & ME/CFS

Now this is a can of worms.  There are two schools of though around mould: the Shoemaker Brigade, and the Mould Paranoids.

The Shoemaker Brigade follows the teachings/research of Ritchie Shoemaker, a doctor who has, over the past few decades, gradually developed the idea of Chronic Inflammatory Response Syndrome (CIRS).  Basically, he reckons that a subsection of the community is genetically susceptible to biotoxins (e.g. mould toxins, but also Lyme and algae), which they can't detoxify, and they develop a chronic inflammatory response which makes them Really Fucking Sick.  He reckons CFS actually is a sub-type of CIRS.  He has a set of criteria for diagnosis, including some blood tests, and a clear treatment protocol. However, there's not point treating it until you're not being exposed anymore, which requires testing your house for mould (which is another can of worms).  There are only a few Shoemaker-trained doctors in Australia (the main one is on the Sunshine Coast), and some of the most diagnostic blood tests aren't available in Australia (but they can't be sent there for $$$s).  The evidence base for all of this is not terrible (they have a few decent peer-reviewed papers), but it's mostly from the one group of researchers, and some of the assertions aren't well documented (though others are).  I've been thinking of writing up something to summarise everything I've learnt on my mould journey, as it's hard to find solid information.

I've attached a couple of documents that give a detailed overview of CIRS [1, 2].  Let me know if they are too much and I can find something simpler.  Also worth a look is the http://www.toxic-mould-support-australia.org/ website, which is pretty good and has a strong community behind it, which you can find on Facebook.  Though the CIRS crowd seems to have more nutcases in it than the CFS crowd!

Which brings me to the Mould Paranoids, who think that things are much worse than even Shoemaker thinks.  They practice extreme mould avoidance, and experience significant symptoms whenever they go into a mouldy building.  They find that they react to items that have been in a building, and the effect can takes years to wear off - many items cannot be remediated at all. Some people go to the extent of throwing out all their things and starting from scratch in a new house.  This all started with Erik Johnson, who was got CFS in the Incline Village epidemic in the 80s.  He found that he felt better in certain places, and using some toxin-avoidance protocols he learnt in the army, he worked out that the problem was mould exposure.  You can read about his story and how to practice mould avoidance here: http://paradigmchange.me/erik/

This all sounds pretty wild at first, but there is a strong community of people who go to great lengths to stay mould free, and that is probably only because it actually works for them.  One way to work out if this is your issue to to go on a Mould Sabattical: go to the desert for a few weeks, with *none* of your current belongings.  If you feel better, or crash big-time when you return, then mould might be a problem for you.  There is a guide on this here: http://paradigmchange.me/avoidance/  This is all pretty challenging for sciencey types like us, and the article below does a brilliant job of exploring the issue. It's written by a science writer, and she even does a double-blind experiment to prove that she actually is responding to items from her house.
http://www.slate.com/articles/health_and_science/medical_examiner/2017/06/be_skeptical_and_don_t_take_anything_at_face_value.html

I'm open to the mould hypothesis because I first got sick shortly after spending a few nights in a very mouldy caravan, and I later spent more time in another caravan and tent which could have been mouldy.  On the flip side, most of the time I've been in Hobart I was gradually improving, and was living in a dodgy rental that had obvious roof leaks and mould damage (though was very well ventilated).  But then I started going downhill and relapsed after moving into our own place, and I have identified a couple of mould problems here (one of which we've fixed, the other I just found (mouldy roof beams!)).  It's a slow jounrey working my way through all of this, but I'm gradually getting less panicked about it and just doing the best I can.