Discussion in 'Recruitment into current ME/CFS research studies' started by Andy, Sep 5, 2019.
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Would it not also be worth running a simple study to question peoples histories? Collect data from a large number of pwME and a large number of healthy people, and see if a significantly higher number of pwME were exposed to mould before (and possibly up to) the time they got ME, along with duration of exposure? It is a possibility for my wife.
It's a possibility for my family too.
But the problem is that those of us with ME/CFS have had lots of time and motivation for reviewing our histories to find all possible causes for our illness. We've already remembered the various times when we might have had mould exposure. Healthy controls are much less likely to remember them, or attach any significance to them. I can't see how a questionnaire could be anything but biased.
why only female test subjects just seems wrong to do a study that only uses a female only study group .
I suspect if you've been exposed to it for years, possibly without realising the possible health risks, then you would have a memory of it. Mouldy walls are pretty memorable.
So... could mycotoxin producing fungi in the gut be a source of constant exposure?
I know Ian Lipkin has mentioned looking into booth fungi and viruses in the microbiome, in addition to bacteria.
Mould can also be hidden. I know somebody - perfectly healthy - who had no idea they were living in a mouldy house until they started on some renovations and uncovered the problem. The mould was tested and declared toxic. The renovations became rather more extensive than originally planned...
I don't know how common that is but I doubt many people, healthy people especially, can be relied on to correctly recall past exposures unless they were extreme.
Now, if they can find any mycotoxins in their laboratory testing, that would be much more convincing.
Valid point. I'd not really cottoned onto that, but obvious once you point it out.
Would mycotoxins show up in metabolomic studies?
Another study for CureME if funding etc permit, especially as they have MS samples?
This looks like bad methodology to me. A study like this needs to be done on a strict population based cohort with matched controls from the same population. It worries me that research groups are setting up projects in this way.
Does anyone know of an accurate, precise and reliable toxic mould home test kit where the samples are sent off to an accredited lab for analysis in the UK?
I would be interested to be able to tick off "mycotoxins" as a perpetuating factor in my decades with this disease.
I don't think anyone even knows what should be measured. We all get exposed to moulds. That may mean being exposed to mycotoxins but that does not necessarily mean measuring mycotoxins in samples means anything. If mycotoxins caused ME I think we would have clues from clusters of cases in poor damp housing areas or farming areas or something.
And then the whole family living in same dwelling would get sick.
@Jonathan Edwards I'm sure you've probably answered it elsewhere so apologies if so (and I know it can't be answered definitively obviously) but what do you think caused, say, the Incline Village outbreak?
I don't have any clear idea. I assume the trigger was some sort of virus but I don't know enough to say more.
Not sure that's necessarily true - what if ME results from a combination of factors which could include genetics, exposures to environmental toxins, other factors such as a history of infections, age at exposure, etc
I agree, and random factors in the immune response could come in. Illness would not necessarily show up in everyone in a family. What should show up is a correlation with Zip Code or equivalent. There has been a recent study indicating, if I remember rightly, that ME does not correlate with Zip Code at all, which is interesting. That points a lot to genetics and random factors.
Perhaps. But depending on the study design, it could also point to a meaningless "CFS" cohort based on bad criteria and/or the use by the medical community of "CFS" as a wastebin to dump clinical cases of unexplained fatigue. That's the likely explanation for the four-fold increase in prevalence in the CDC risk factor survey
In the case of water damaged buildings, I could imagine some clustering of that factor by zipcode but could also imagine a wider and more random distribution.
I think with a big epidemiological study environmental signals would show up despite quite a lot of dilution. As for the GWAS proposal I am much less worried about dilution than I am about spurious associations coming uo because of internet based trawling.
Water damaged buildings would be distributed with by zip code and other ways, yes, but that is implicit in the methodology - there should be some weighting. Water damaged buildings are more common in down at heel districts in the eastern seaboard than in Phoenix Arizona for instance! For the illnesses related to micro-organisms that we know, geographical location comes up like a sore thumb on prevalence data.
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