There’s certainly good reason to connect mold exposure with chronic fatigue syndrome (ME/CFS). The symptoms are very similar and if you stick around long enough you’ll hear of chronic fatigue syndrome (ME/CFS) patients who were disabled by mold or who got better through mold avoidance. (Health Rising has a couple of remarkable mold recovery stories in its database.)
Many ME/CFS patients don’t do well in moldy environments and they may have other issues going on as well. For me, living in the desert did improve my symptoms nor did living in the more moldy south make them worse but I definitely have to limit my exposures to moldy houses. Mold is in play for me; I’m just not sure where.
Many doctors use the concept of ‘total load’ to describe what they think is going on in ME/CFS. They believe ME/CFS is not due to one virus or one toxin or one species of gut bacteria ; it’s the virus plus the toxin plus the gut bacteria that causes this disorder and they treat the disorder by attempting to ‘reduce the load'; ie by getting rid of the toxin or the allergen or the mold or whatever is that is depressing your system.
If you’re not one of the lucky people who found mold was it for them, mold may still very well be in the picture.
As welcome as it is to finally get a study on mold issues in chronic fatigue syndrome, this study had some issues.I recently had a long talk with someone who ripped ME/CFS research studies a new one because of poor study designs, etc and since then I, with my limited knowledge of study design, have been looking at them a bit more closely.
The participants, all ME/CFS patients, were asked if they’d been exposed to water-based building damage and were given a urine analysis to determine if mycotoxins were present in ME/CFS patients. Their test results were compared to healthy controls presenting at a Midwestern infectious disease clinic who had not been exposed to water-based building damage.
The mycotoxin results were extraordinary with 93% of ME/CFS patients testing positive for at least one mycotoxin compared with 0% (yes, 0%) of the healthy controls. Over 90% of ME/CFS patients had been exposed to water-damaged buildings while none of the controls had. That got my attention.
Very, Very High Rates of Mold Exposure in the ME/CFS Community???
It turned out that the healthy controls were selected in part because they’d reported no prior exposures to water damaged buildings. That enabled the researchers to highlight the effect that type of exposure may have but made it impossible to be able to state that ME/CFS patients are more likely to be exposed to water-damaged/moldy buildings than healthy controls.
Several factors suggest the 93% rate of positive mycotoxin tests in ME/CFS may not be reflective of the general population.
- The authors defined ‘water-damaged’ buildings broadly enough (leaky pipes, window leaks, roof leaks, plugged up drains…) that many people must have been exposed to one. (Two of the houses I’ve lived in in the past two years had water damage. One was surely very moldy and I had to limit my time in it, but I also lived in a house with water damage to the kitchen (no problems). They did note, though, that ‘many’ (why not give a percentage?) of the ME/CFS patients had lived or worked in a building with visible mold – an indication of a mold problem that went beyond a plugged up drain or a window leak).
- This study also emanated from a infectious disease specialist apparently with a focus in mold issues which means he may be gathering a distinct subset of mold exposed patients and this makes sense given the report that many of the study participants had lived/worked in buildings with visible mold.
- The most common type of water-based damage to residential dwellings occurs in basements and most of the participants came from the Midwest where basements/cellars are probably more common than in the western and southern states. People from these locations may be more likely to be exposed to high levels of mold.
To sum up….
- It’s impossible to say based on this study that mycotoxin levels or mold exposure is more prevalent in ME/CFS patients than the general population
- It’s impossible to say that mycotoxins caused the illness present in the ME/CFS population
- It is possible to say that mycotoxins are associated with severe illness and high rates of exposure to water based damage in this group pf patients.
Mycotoxin levels could very well be more prevalent in the ME/CFS population; given reports of increased levels of pathogens and anerobic gut bacteria, one might expect increased levels of fungal attack. It’s also very possible that mycotoxin presence is associated with severe illness in ME/CFS. We simply need different types of studies to prove those things.
What we can say is that this group of patients was very ill, had tried numerous other treatments unsuccessfully and had high rates of positive mycotoxin results. That’s worth notice, particularly since we know that getting away from mold does work really well for some people with ME/CFS.
Some mold doctors believe a genetic component is important and a genetic component would allow one family to live safely in a house with mold and a second family to fall apart. If a genetic component is present it could explain the ‘whole family syndrome’ which occurs when whole families come down with an ME/CFS like condition after a) moving into a new house or b) after water damage occurs. Examining the living environment of 18 of the ill patients revealed the same mycotoxins present in the patients urine were found in the house.
The Hit and Run Syndromes?
Mold-induced ME/CFS, toxin triggered Gulf War Illness (GWI), trauma associated fibromyalgia, toxin initiated Environmental Illness, Borrelia triggered long-term Lyme disorder and perhaps infection-triggered ME/CFS may all have one thing in common; a single trigger which if removed does not relieve the illness! Some people with mold-induced ME/CFS do recover by removing themselves from the moldy environment but others do not. Accident triggered fibromyalgia does not resolve itself once the injury is healed. GWS patients are still sick decades removed from the Gulf War. The pathogen issue in Lyme and ME/CFS is more complicated but it’s possible that for many, the initial infections were resolved , but the illness remained.
Some sort of system reset appears to be occurring in all these disorders.
Mold Problems in Dwellings
The New York State Department of Health states the key to preventing mold growth is to control all moisture problems and warned to be on the lookout for these common sources of moisture:
- Roof leaks
- Plumbing leaks, drainage problems
- Damp basements and crawl spaces
- Steam from the bathroom or kitchen
- Condensation resulting from poor or improper insulation or ventilation
- Wet clothes drying inside the home or a clothes dryer venting indoors
- Poor or improper ventilation of combustion appliances
They state that mold problems can usually be seen or smelled and that the best way to find mold is to examine areas for visible signs of mold growth, water staining, or follow your nose to the source of the odor. It may be necessary to look behind and underneath surfaces, such as carpets, wallpaper, cabinets, and walls.
This is a quick overview of some treatment possibilities if you have been sickened by mold exposure. Others surely exist.
Dr. Ritchie Shoemaker
Dr. Shoemaker has proposed neurotoxins and problems with detoxification lay at the heart of ME/CFS and other disorders.
Shoemaker’s Mold Survivor’s website is the most complete site on biotoxin/mold illnesses I’ve found. His treatment protocol is a step by step process which begins with lab tests, doing mold testing in buildings, patient withdrawal from moldy areas, using Cholestyramine or Welchol to detoxify and then correcting lab abnormalities. He’s created a physician training course to educate physicians in his approach.
Dr. Shoemaker on Biotoxin Illnesses
General Treatment Suggestions Gathered From the Web
Avoidance – so that the body can detoxify itself and return to health. Avoidance works for some people and others need more help.
Cholestyramine (Questran) – New Uses for Old Products – Cholestyramine is an old cholesterol reducing prescription medication that has been largely superseded by more newer, more effective meds which can bind to the mold toxins in the gut and remove them from the body. A well test medication its has side effects other than constipation and heartburn.
Other Detox Methods – Limu -Muoi Modifilan, zeolite, saunas (infrared is best) all employ different means of detoxificaiton. Dr Shoemaker reported he has not found success with charcoal, zeolite or herbal preparations. For more on these from a patients website, click here.
The first study I found that was focused explicitly on chronic fatigue syndrome and mold, this study wasn’t able to tell us much about rates of mold exposure/illness in ME/CFS but it did suggest that mycotoxin presence in ME/CFS may be associated with severe illness and increased exposure to water based building damage. Dr. Shoemaker has developed a detoxification protocol to address mold toxicity.
Share your pain, make friends, find new treatment options, check out recovery stories and more in the Health Rising ME/CFS, FM and Chronic Pain Forums here