(More) unknown causes of ME/CFS: mold

Wall with (dark) mold.

If ME/CFS is suspected, some obvious causes are excluded, and then the examinations will soon stop. After all, the cause of ME/CFS is unknown, so further investigation is considered futile.

If you are willing to look further, then indeed all kinds of possible causes for ME/CFS will appear. A number of them can even be treated properly! Although that isn't always possible in the Netherlands. Mold is one of these examples.

Mold and moisture

Mold is spread by tiny mold spores, which are present everywhere in nature. They float through the air, and end up in your home through an open window or door. The mold spores need moisture to be able to grow. So everywhere it is moist (long-term), mold can develop. Common places are the bathroom, basement/crawl space, kitchen, bedroom, or a damp meter cupboard.

If mold appears in your home, you can be sure you've a moisture problem. To combat the mold effectively, you won't only have to tackle the mold, but also the moisture problem.

Mold and health

In the Netherlands we have a rather limited vision on how harmful mold can be. The prevailing opinion often thinks mold is annoying, but not really a big problem. And if it does pose a problem, then it would mainly cause allergic symptoms or problems for people with respiratory problems. According to this vision the solution is simple: kill the mold, and the problem is gone.

The reality is much more complex. Not only you get sick from mold and mold spores, which mold shoots into the air. The toxins (toxic substances) secreted by mold are the most harmful to our health. These can cause illnesses like ME/CFS and mast cell activation syndrome (MCAS). And it is dying and dead mold that release the most toxins! Certainly if they have first been processed with chemical (cleaning) agents.

Not always visible

Sometimes mold is very clearly visible in your home, but not always. You can't always smell mold as well. Therefore it is possible your home is full of mold, without you being able to see or smell anything.

That's why it is good to test for mold if you suspect your health problems started (relatively) shortly after a flood, leakage or other moisture problem. Or if you started te have complaints (relatively) shortly after moving house or renovation.

Test for mold

Good mold tests aren't easy to find, certainly not in the Netherlands. Here only air samples are carried out, and that provides a (very) limited picture of the situation. Mold spores are (relatively) heavy and therefore don't float in the air, but descend on the floor, on cupboards, etc.

The US EnviroBiomics, Inc has various (mold) tests, taking dust samples. A good mold test, especially for an initial inventory test, is  ERMI. ERMI has been developed by the US Environmental Protection Authority. With this test you'll receive a kind of swiffer cloth, which you'll have to sweep across different surfaces in your home, and then return. They then test which fungi are present in your house.

Whether Dutch authorities will take the results of this test seriously is unknown to me.

In any case, the home insurance of a friend found the outcomes sufficient reason to engage a company for further investigation. This research hasn't been done yet, so it's as yet unknown what kind of research that will be, and whether that research will yield anything.

Remove mold

Removing mold is quite difficult, because the pesticide(s) will never reach the very cracks where the fungi are living as well. (So as a defense the fungi will excrete even more toxins, and your problem will therefore increase.) Cleaning only helps when it comes to non-porous surfaces, such as glass. You'll have to remove and replace all objects with porous materials (wood, paper, plastic, textile, etc) that have been affected by mold.

An example of a 'remediator' is the US  Bio-Balance.

In principle, you also could engage a building biologist to have mold removed. But that same friend hasn't been able to find anyone who actually works with mold. Because most building biologists focus primarily on radiation.

More info

To conclude, two recommendations for those who want to know more about mold:

  1. Ritchie Shoemaker, MD: www.survivingmold.com
    Shoemaker is like the 'godfather' of mold. His website contains a lot of information, among other things about symptoms, diagnosis, treatment, and much more. Shoemaker also has written several books about mold.
  2. Neil Nathan, MD: “Toxic. Heal Your Body”
    Nathan wrote this excellent book about mold and other biotoxin diseases, Lyme disease, Multiple Chemical Sensitivities (MCS), Chronic Inflammatory Response Syndrome (CIRS), and other ME-like disorders. More info and his other books: www.neilnathanmd.com.
    You can order the book here, for example. As far as I know, the book hasn't (yet) been translated into Dutch.


So I am from the Netherlands and I was wondering: is there a mold / mycotoxin test in The Netherlands available? Like, to test mold in the body? I also suffer from CFS, and a lot of symptoms related to Histamine Intolerance and Leaky Gut etc. Really want to exclude mold as a root cause!

Dear Alexander,

I can imagine you would like to have a good research on mold as the root cause of your health problems! Unfortunately, in het Netherlands we don't take mold seriously enough. I am not aware of more information than this blog provides. Therefore, if you want to be sure, I can only advice the test above.

Hi Jochem, 

I you mentioned that you can get the air in your apartment tested. Can you advise on how to do that? Does home or health insurance cover this if someone got sick and would need to determine whether there was some in the indoor air that can cause it? 
Thank you in advance! 

Hi Marta,

Unfortunately I can't tell you more than this article tells you. For more information, please check the references mentioned.

I don't know if your home or health insurance will cover any costs. In the Netherlands this will be very difficult, as the usual point of view is that mold can't cause serious health issues. How this is in other countries, I wouldn't know...

Wish you all the best!

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