16. Mould and M.E - A Different World

Avoiding mould in buildings and bad locations has made a big difference to my health. Here I explain where the idea comes from and why.


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Hello! In my last video, I talked about how a lot of people I know with M.E have felt a lot better when they were in different locations. In one place, they could be almost bed-bound, in severe pain, dizzy, with blurred vision and unbearable headaches, and just can’t think. Somewhere else, within a few days, they might be able to walk a bit, feel a lot better, and the pain might be only a quarter of what it was. And I experience that myself - not quite so dramatically - but in some places, the ‘exhaustion after exertion’ and the brain fog and so on start coming back - and in other places, they don’t.

The person who told me that some people with M.E don’t get that awful exhaustion after exercising, if they’re in certain locations, is Erik Johnson. Erik became so ill after the Lake Tahoe outbreak of severe M.E, that at one point in 1998 he was almost bed-bound, with seizures, paralysis and unrelenting pain, and could only struggle to crawl to the bathroom. His doctor said that most people who were as ill as that would have taken their own lives. Instead, he managed to drag himself to his truck, and camped in the Californian desert. Just six months later, he hiked over 20 miles to the top of Mount Whitney, the tallest mountain in the contiguous USA. With his military training, some experimenting, and a refusal to accept people saying that something couldn’t be true, just because scientists hadn’t considered it yet, he had been the first person to develop a strategy that he called ‘Extreme Mold Avoidance’. You can read his real-life story in the short book ‘Back from the Edge’, written by Lisa Petrison, on Kindle. Erik has helped dozens and dozens of severely ill M.E patients to follow his protocol, with all of them reporting substantial improvements to what they could do and how well they felt. I hear of more of them almost every week now. Like them, Erik doesn’t call it a ‘cure’ for him, but a ‘control of symptoms’ or ‘functional recovery’, maybe up to 80% or 90%, where he’s been able to work full time and even exercise regularly, ever since, while he keeps ‘avoiding mould’.

When Erik contacted me two years ago, I couldn’t see any connection at all between my decade of M.E and mould. I had already recovered quite well, thanks to rest and pacing, as well as chiropractic treatment, good food and having to avoid gluten and dairy, a handful of nutritional supplements (magnesium, ubiquinol Q10, fish oils, vitamins C and D, and aloe vera), and stretching and breathing exercises. But also, Felixstowe, here where I live, was always renowned for having some of the healthiest air and driest weather in England. And the anecdotes and the science both intrigued me, and I still wanted to be as well as I could, as soon as possible. Avoiding mould has made a big difference to me, which I’ll tell you about in a minute.

Mould is a fungus that grows in damp places, like the black stuff around windows with condensation or in bathrooms; or brown streaks on walls in buildings that are damaged by water, long term damp, flooding or leaking pipes; or under carpets and floorboards, behind wallpaper, and in ducts; in gutters and sewers; on rotting leaves, trees and timber; green-grey mould on cardboard; or all sorts of coloured moulds on foods. Having mould doesn’t mean that a home is dirty, it just means that there’s moisture, and something for the mould to grow on. These moulds, and their spores which they release into the air, give off tiny toxins - which are called ‘mycotoxins’. Some algae on lakes can give off similar toxins, and so can some bacteria and mycoplasma. Mycotoxins from certain moulds on foods are known to be very poisonous, for example aflatoxins, which when eaten can cause immune and neurological diseases, and even death. And breathing in toxins given off by some moulds in buildings has always been recognised as being able to cause ill health sometimes, like breathing problems, bronchitis, asthma, allergies, skin diseases, and some infections, and even eye problems and depression.

But it is now becoming apparent that breathing in toxins from some particular types of mould, like Stachybotrys and Aspergillus and others, can do even worse things. Biologist Dr Joan Bennett’s research has shown that toxic volatile compounds emitted from mould found in buildings can cause the same inflammation in cells in the body that can lead to neurological disease. It seems that these moulds could interact with other toxic chemicals either in the materials that they are growing on and ingesting, or in the air around them. We don’t know yet exactly how moulds might interact with chemicals like: fire retardants (which are in furniture and mattresses and electronic gadgets, and they’re also sprayed onto some forests); pesticides (in our foods, or if we’re living near to farms or parks, or in our sewers); fungicides; formaldehyde and other chemicals given off from particle boards, MDF, plasterboard, and so on; heavy metals; aluminium; and some of the neuro-toxic, hormone-disrupting chemicals in most household cleaners, toiletries and cosmetics, especially some synthetic ‘fragrances’; or the solvent trichloroethene; or various industrial chemicals. But a combination of mycotoxins and other toxins or pollutants could possibly be having an effect which is far more potent or poisonous even than ‘just’ the mould toxins or ‘just’ the chemical poisons on their own. It is known that some of these moulds can process other substances down into nanoparticle size, and cross the biological barrier between our blood systems and our brains, so-called ‘leaky brain’. Which means that mould toxins and poisonous chemicals could now be being delivered directly into our brains and nervous systems, and poisoning them.

Dr Ritchie Shoemaker, who has been pioneering research into mould illness, suggests that the inflammation that is triggered by the mould toxins could also affect the hypothalamus gland in the brain, and the hormones, as well as the immune system, being both on ‘overdrive’, trying to fight something but it doesn’t know what, but also being ineffective to deal with infections. Between them, these are all of the things which can give the symptoms of M.E. But even with the body in this state, it might often be a bad virus, which the weakened immune system can’t deal with, which could be the final straw which pushes it into M.E. But that part of the possible jigsaw hasn’t been researched yet.
The ‘mould avoidance’ that I’ve been doing hasn’t been as extreme as many other people have experimented with. I’d already recovered fairly well anyway, and I might never know how much of that - if any - was simply because of living in a relatively un-mouldy environment. But, I started to bath, and wash all my clothes, immediately after going into any building that smelt as if it might have had any mould in it. Or, at the least to rinse my face and hair, and put my shirt or jumper into a sealed bag until I washed it. I’ve found a message I posted just a few weeks after I started trying it, when someone asked me how it was going. I said: “I have been sleeping very well - especially if I rinse my hair and face before I go to bed, and change my pillow case regularly, - and many of my symptoms are much less common. When people ask me how I am, I now often find myself saying “OK” or simply “tired”, rather than thinking of a list of a dozen ‘post-exertional malaise’, ‘neuro-toxic’, ‘POTS’ and ‘immune’ symptoms.”

Then last year, I was fortunate enough to be able to move house, into a place where I knew for certain there had never been any mould, nor particularly bad chemicals. I bought the only new mattress I could find that legally has no fire retardant chemicals in, and have used some organic materials and almost all non-toxic, genuinely natural household cleaners and toiletries. The more ‘clear’ I got, the better I felt - and the more I could sense mould toxins in certain buildings, or occasionally even outside. I somehow just started to notice in some places a very strong ‘musty’ smell (actually I can almost taste it, more than smell it), which seemed to bring on the classic ME-type symptoms - some of them immediately, some over the next couple of days, - I’d have a spinning head, feeling out of it and spaced out, racing heart and the orthostatic intolerance (that’s the dizziness when standing up), a feeling of anxiety but not about anything in particular, a sore throat, headache, needing the loo, and the ME-exhaustion, and so on.

I used to think I was too well recovered to be at risk of a big relapse of ME, unless I ridiculously overdid it far too much. But now I’ve been in several people’s homes where I strongly believe that if I were living there, my ME would get worse again. And they’re not always places where you can obviously see any mould. I went into one building which was so bad that my brain actually lost the ability to think - I genuinely couldn’t remember the reason I’d gone in there. I had to open the window and stick my head out for a couple of minutes, to be able to work out why I was there. That was scary. I got home as soon as possible, and ended up making myself late for an appointment, because I knew I desperately needed to shower this stuff off me first. Never in my life has a shower felt so good, and I felt fine again afterwards! But recovering like that from a flare-up depends on how bad the place was and how long was my exposure to it, as well as how quickly and how thoroughly I decontaminated. As I mentioned last time, a day in London can bring on my ME symptoms for the next couple of days, especially the exhaustion and brain fog - unless I bath as soon as I get home, and then I’m fine. I’ve found that there’s one London Underground station that’s particularly bad at the moment and completely floors my brain. And someone else with ME has said the same thing to me about that station!

But can tiny amounts of mould toxins in the air really be so bad? Well, just a tiny amount of peanut in the air is enough to give an anaphylactic shock reaction to someone with a severe peanut allergy. Now, neuro-immune mould disease isn’t the same thing or the same mechanism as a mould allergy. But then just a few grammes of hydrogen cyanide in a room is fatal, and some nerve gases are a hundred times more poisonous than that. And maybe some people’s bodies struggle more to process and eliminate mould toxins, if they have impaired detoxification - Dr Shoemaker suggests that one in four people might have a genetic predisposition to that, - or maybe if they have been sensitised by a really bad exposure to mould at some time before they actually got ill. It also seems that the mould toxins can stick to clothes and hair, which is why - if such small amounts can have such big effects - decontaminating after being in an environment with any mould toxins at all, is so important, as well as living and sleeping in a completely clear place.

If someone is constantly living in a place with mould toxins, it is probably harder for them to see if there’s any possible effect. It’s like when I first experimented to see if I reacted to eating gluten, I had to stop eating any gluten at all for 2 weeks - when I felt a lot better in some ways. But it was only then, when I went back to trying to eat a bit of gluten again, that I experienced just how bad even a tiny amount of it was for me. But before I’d cut it out, it had always been there, the cause was ‘masked’. In the same way, for someone who is living in a place where there are bad mould toxins, they could probably only start to test mould avoidance for themselves by going to somewhere that’s clear - a good location, possibly abroad, right by the sea, in a desert, or up a mountain, and a zero-mould house or hotel - or even camping! They would also need to make sure they didn’t take any clothes, furniture or books or anything from a mouldy environment, which could be contaminated and take the toxins with them. They might or might not feel any better to start with, but it’s the reaction when going back to a bad mould toxin environment which could be a clue. I’ve known some ME friends to feel better when they’ve been away, and then got a lot worse 3 or 4 days after going back - but they’ve assumed it must have been because they’d overdone it when they were away, or they’ve just had an idiopathic relapse, for no particular reason.

Mould avoidance can mean a huge upheaval and lifestyle change for some people, - and especially for those who are severely ill and without support, there are lots of reasons why it might not be practical at all. I have been very fortunate. Erik was very desperate. Now, the science has to consider the neuro-immune effects from mould toxins, and how that might be connected with ME. Avoiding mould in England isn’t easy, and perhaps that’s why people often feel better in France, southern and eastern Europe, parts of America, and parts of Africa. But living in a house with bad mould toxins probably isn’t a good idea for anyone with chronic chest or heart illness, or neurological or immune diseases, perhaps especially ME. And living in a less bad house could at least mean a lower toxic load, maybe a better chance of other treatments helping, and maybe over time an improvement not a decline. Possessions taken from inside a bad house may still be contaminated, though.

And the latest official best practice for getting rid of mould is *not* to use fungicides or bleach, which could make them even more poisonous, and that even dead mould can still cause problems. The only thing that could be effective would be the complete removal of all mould (maybe cleaning non-absorbent surfaces with a mild, natural soap, and completely taking away any porous materials that have had mould on them); and removal of virtually all mould toxins (as if they were like nerve gas); and of spores; and eliminating the damp conditions where mould colonies could otherwise start growing again. But even this sort of remediation can make mould toxins in the environment much worse for some time after disturbing them, so someone who is made ill by mould might need to be well out of the way, while someone else, who doesn’t react to it, removes it, wearing a protective mask and disposable clothing.

I still can’t point to any definite connection between mould and how my ME started - although there are 2 or 3 possible explanations. But my health has thankfully improved a lot more now. And almost every mini relapse or crash I’ve had - which I would have used to try to put down to ‘overdoing it’ or ‘coming down with a virus or bug’, or even ‘too much stress’, - I can actually very easily trace them to ‘bad’ or mould toxic environments that I’ve been in. To be honest, I wouldn't have believed it either, but I know what I - and so many others - have seen!