New research linking CFS/ME with mould mycotoxins

Many on this site are aware that thyroid and endocrine problems generally can be closely linked with CFS/ME. Chronic fatigue can often be a lingering and major problem despite every effort to optimise endocrine and other supplement replacement. I have in the past posted information about the key role that mould mycotoxins can play in endocrine dysfunction.

New research has now highlighted a distinct connection between CFS and mould mycotoxins: cfspatientadvocate.blogspot...

An abstract of this study can be found here together with a pdf. link to the full text of the study:

For those of you for whom chronic fatigue is a continuing problem this may just be the glimmer of light you are seeking.

I am currently investigating the availability of testing in this country and will let you know when I have more information.

Jane x

16 Replies

Hi Jane, have you already asked Dr M re: availability of testing in UK? (probably you have :D )

Yes, I have asked her, but not available I'm afraid. Am checking further though. x x

That's really interesting, thanks!

Hi Jane, Yes, really interesting! More research needed and then perhaps many patients with ME/CFS will be diagnosed! x

I would be really interested to hear about any testing in the UK. I have been recently diagnosed with CFS after what appears to have been a period of glandular fever. This has all happened in the past 12 months, after we moved into an old house that turned out to have a quite severe mould issue. We only discovered the mould when we removed a large hanging from the wall and found it absolutely covered in mould. The hanging was fairly new so this appeared quite suddenly. Another room started to show signs of mould appearing all over the walls. I am still searching for the root cause of my illness and I am fairly convinced it is linked to the mould in our house.

I will post on this site as soon as I have any further information as regards testing. Jane x

CFS is CIRS - essentially i nearly died in a bedroom I later found out had black mould and aspergillus growing on the wall behind wallpaper... my heart, brain, lungs were packing up, I could barely walk - I still have eye problems and memory problems and confirmed in MRI (neuroquant). My son missed 3 months off school etc... we needed help via Dr Shoemaker who did the diagnosis (cheaply) and found Questran via a GP privately who prescribed it - that helped bind it out of our bodies - as we are one in 4 people who cannot (HLA-DR/DQ gene test proves this). You must get out of the mould in the house, get professional remediation - dump porous items... and high wash / dry clean what you have to keep. Then take a path of healing... you will be forever sensitised to it. DO NOT expect to get help from Env Health Dept OR NHS - they are keeping people in the dark. You must seek professional help outside of this. 1-4% of moulds are highly toxic and cause mycotoxins to be inhaled which then go into the blood stream and settle in major organs and cause all kinds of de-regulation of the immune system... can lead to Alzheimers, Parkinsons, Fibromalgia, SIDS, ME, MS, CFS, RA..... Cancer.... this is a huge factual situation not even remotely guesswork. I have all scientific data and reports medically and domestically and left the private rental - was actually evicted for asking for mould remediation. Its been a journey from hell but we are surviving it now. just.

I know mould is a major trigger of asthma, along with house dust mites. I had allergy testing to identify my trigger (dust mites) & as all the immune type things have close links, maybe that sort of testing could be a starting point?

Mould allergies should not be confused with Mould Biotoxin illness although many allergies can be caused by MBI as can countless others symptoms and damage to bodily systems. More information here: Jane x

Hi Jane,

I have been ill with hyperthyroidism, fibromyalgia, severe vitamin D deficiency and chemical sensitivity for 6 years. I have a multi-nodular goiter that won't uptake so my only alternative is taking PTU until it eventually burns itself out. I have seen numerous doctors that tell me there is an underlying problem but they are baffled as to what it is. Last year after having fluoride treatment at the dentist I was so ill I was bed ridden for a couple of months. I was tested for porphyria as that was the only thing the doctor could think may be causing the symptoms. I tested positive but then had further investigations at the porphyria clinic a couple of months later, and then tested negative. 6 years ago I was an archivist and we had a water leak at work. It was only discovered after a room full of documents was discovered covered in mould. My job was to dry it out and clean it off. My illness started 4 weeks later beginning with sudden allergy to penicillin, epinephrine, ciprofloxacin and an anaphylactoid reaction to injected corticosteroids. I initially lost 10kg in 3 weeks and doctors couldn't work out what was wrong - told me it was in my head. Finally after 3 years I was diagnosed with hyperthyroidism and put on carbimazole but I was allergic to it so 3 weeks later I started PTU. I decided as doctors couldn't find out the underlying problems, to get tested for mycotoxins, in December 2013 (sent a urine sample to a lab in America). It came back positive for trichothecenes. I have since spoken to a mould expert who told me that trichothecenes do damage the thyroid, necrotise the adrenals and damage the myelin sheath around nerves, as well as cause various other problems. Life has been a living hell for the past 6 years. The mould I was dealing with was probably statchybotrys chartarum which lets off trichothecene mycotoxins. Unfortunately there are few experts around the world as this is supposed to be rare, but I do wonder how many of us are affected by them. Things as so bad that I can't walk into a supermarket without becoming dizzy and disorientated. Shopping malls have a similar effect. I wonder is it's the yeast they use in the bakery or mould in the airconditioning ducts. I also have visual problems and haven't been able to drive since getting sick. My daughter was only 7 when all this began and I feel it has robbed me of her childhood as I had to stop taking her to all the activities we used to do together.

ITs a huge problem - read my post earlier - I had Stacybotrys and ASpergillus and it nearly killed me - doesn't show on blood tests - did find in urine but NHS clueless.... completely. Insurance Co, Landlords and Gov also don't want people knowing although it is a class 1 hazard in WHO eyes. There are ways forward - UK must catch up wth USA - its epidemic here. is pioneer in this field.... there are other certified physicians in USA and not one in UK though a Dr Panjar in Hertfordshire Clinic understands treatment and protocol.

24% of us cannot produce a mould antigen and so the build up in the body causes huge issues - my best advice is buy ASEA redox cell signalling water it provides acceleration to cell signalling and anti oxidisation for the body and repairs cells destroyed by mould... bacteria and parasites..

Hi Jane

Have just come across this old post while searching for how to test for mycotoxins in the UK. Did your investigations find anywhere in the UK to test for this please?

I'm interested in any update too

Well well well - here we are.... I've just found this post and have been posting on this site when my hashimotos first diagnosed and trying to find the magic naturopathic mix. Recent events saw me having to relocate and rent a new home. I moved into a 2/3 bed flat / maisonette in August and by end of September was chronically bed ridden and ill - with a CFS.ME type illness that I seriously thought was going to kill me. I could do very little, not carry a bag of shopping to the end of the road or even climb stairs without collapsing. I had brain fog, weakness, eye fuzziness, chronic inflammation and weak adrenals, palpitations, dizziness, finger tremors, and arthritic joints.... a product called Asea literally saved my life and I have been taking it ever since. It is anti viral anti fungal and anti bacterial... redox cell signalling molecules. Theres a lot of info about it, but within 3 days I felt much better and got my life force back from the edge. I had written up funeral plans and care taking plans for my son I could just feel my life slipping away. Then I get well enough to take a holiday, and return home to a mouldy car, then see the black mould in the carpets that was always there - but I had ignored as had to move quickly and find a place in the tiny catchment area of my son's new school - so took it without worry. Then I awake at 1am this morning with the mould word in my brain and google CFS and mould. And lo and behold uncover this incredible connection. Why aren't Drs informed about this? A brilliant website surviving explains the connections between auto immunity, inflammation, and various problems that have arisen by a % of the population with mould fighting difficulties who have been exposed to water damaged buildings. Incredible. I applaud all the research done here. Thank you... please do keep sharing. I shall test myself for mycotoxin exposure (but don't know where to go for this?!) and test the black mould in the stair carpet and side of the carpets. Have alerted the landlord and got a dehumidifier round for the back bedroom where I am. Have alerted landlords... but now I understand it all seems to make perfect sense. The immune system, the gut, the thyroid, the adrenals, the brain damage, the central nervous system damage.... wow, I'm gutted to discover but also relieved as I have found something that works and know I have to move and or get the place treated... but also my son has been suffering a bit of a dry cough too... its been a horrendous journey of health issues for me and my son but I feel I'm finally hitting the bedrock of the problems.

CFS is CHRONIC INFLAMMATORY RESPONSE SYNDROME - mostly caused by mould mycotoxins... spread the word . Proven, factual, and water damaged buildings are at the root.... along with a whole host of other issues they can cause through mould growth not always detected but burdening immune systems especially in those who cannot produce mould antigens (24% of population!)

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