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Prevalence of Aspergillus-Derived Mycotoxins (Ochratoxin, Aflatoxin, and Gliotoxin) and Their Distribution in the Urinalysis of ME/CFS, 2022, Yu Wu

Discussion in 'ME/CFS research' started by Andy, Feb 13, 2022.

  1. Andy

    Andy Committee Member

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    Abstract

    Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a known complex, multi-organ system disorder with a sudden or subacute onset. ME/CFS occurs most commonly among women between 30 and 50 years of age. The current diagnostic criteria of ME/CFS, as defined by the Centers for Disease Control and Prevention, includes: profound fatigue and post-exertional malaise (>6 mo) unrelieved by rest, persistent cognitive impairment or orthostatic intolerance, and chronic unrefreshing sleep. Despite reported associations between ME/CFS onset and exposure to infectious agents (viral, bacterial, or fungal), the pathophysiology of ME/CFS remains unknown. In this prevalence study, we investigated the rates of Aspergillus-derived toxin levels, Aflatoxin (AF), Ochratoxin A (OTA), and Gliotoxin (GT), in the urinalysis of 236 ME/CFS patients with a history of chronic exposure to mold (i.e., from water-damaged buildings).

    Among ME/CFS patients reporting chronic exposure to mold, we found evidence of exposure in 92.4 percent of patients, with OTA being the most prevalent mycotoxin. Mold distributions (OTA, AF, and GT) in the urinalysis all demonstrated right skewness, while the distribution of age of ME/CFS patients diagnosed showed no deviation from normality. This study aims to provide preliminary, epidemiological evidence among ME/CFS patients who were diagnosed in South Florida with a history of exposure to mycotoxins. Based on these findings, we proposed how future control studies should approach investigating the association between chronic mold exposure and the diagnosis of ME/CFS.

    Open access, https://www.mdpi.com/1660-4601/19/4/2052
     
    Simon M, TigerLilea, Sean and 7 others like this.
  2. strategist

    strategist Senior Member (Voting Rights)

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    The patients had a "concurrent history of mold exposure". It's not clear to me what that means. Were the patients living in moldy buildings? Were they living in them at some point in their lives, maybe years ago?

    There also needs to be a control group because it could be a situation where almost everyone in the population has some exposure to mold. We would want to know whether that exposure is causing health problems.
     
    Simon M, TigerLilea, Hutan and 7 others like this.
  3. Trish

    Trish Moderator Staff Member

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    I think the main problem is the title of the paper which doesn't mention it's a highly selective subgroup, so says nothing about prevalence in ME/CFS in general.

    The authors make it clear it's a preliminary study with no funding other than what the patients' insurance or personal payment covered for the tests, so not a proper epidemiological study with random sampling and control group. I think the idea is that they showed the presence of mycotoxins in the urine for a lot of this subgroup, and suggest this is worth investigating further to see whether it relates to symptoms and prognosis, and how widespread it is in ME/CFS patients. They describe the biological effects of the specific mycotoxins.
     
    Simon M, Hutan, alktipping and 9 others like this.
  4. mariovitali

    mariovitali Senior Member (Voting Rights)

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    No control group as @strategist mentioned :

    Question : If controls were found to have elevated levels just as the MECFS group, would it be wise to dismiss this study as not having found something of use?
     
    Hutan, alktipping, MeSci and 2 others like this.
  5. CRG

    CRG Senior Member (Voting Rights)

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    There's a problem of prior plausibility - simply saying here's something that's associated with disease - in this case mycotoxins - isn't a foundational hypothesis. There really should be some attempt to pose the question "what is it about mycotoxins that might be expected to play a role in an illness with all the characteristics of ME/CFS ?"

    This lack of scepticism is concerning because the authors make a point about the geographic distribution of their results, something which would be supporting of an unspoken bias, that of environmental relevance - southern Florida being more humid and therefore supporting of a 'mold hypothesis'. This is compounded by an unfortunate 'switch' where the article, while at various points noting the very serious pathological impacts of mycotoxin exposure, goes on to conflate the most common source of disease causing exposure, which is ingestion of contaminated food, with the far less certain impacts of respiratory exposure. As a measure Urinalysis has a very obvious confound - diet, the authors really should have asked about cereal and nut consumption, and not just rely on some unqualified question about exposure which the trial participants were free to interpret however they wished.

    If mycotoxins play a role in ME/CFS researchers don't need to start looking at populations in the affluent north where exposure is rare, there are large populations across the world especially in the poor south whose mycotoxin exposure is consistently high and would therefore be expected to display far higher rates of ME/CFS of mycotoxins are causal.

     
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  6. Milo

    Milo Senior Member (Voting Rights)

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    It is a study that looks at whether patients who reported chronic mold exposure were right in thinking that. They also happen to have ME/CFS

     
    Peter Trewhitt and Trish like this.
  7. Creekside

    Creekside Senior Member (Voting Rights)

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    It doesn't show whether it's a cause or an effect. ME-affected bodies are abnormal, so there's no reason why it can't result in less ability to remove various toxins.
     
    glennthefrog, Milo and Peter Trewhitt like this.
  8. Hutan

    Hutan Moderator Staff Member

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    Yes, and it's quite possible that they do. There are hardly any studies of ME/CFS incidence in populations on low income countries. I have heard quite a few people from high income countries who report getting ME/CFS during or immediately after a trip to a low income part of the world.

    My impression from my googling is that everyone is exposed to these toxins to some extent.

    I thought this was an important point.

    Clearly mycotoxins cause disease and there's a lot to be found out about them yet. To me it seems possible that mycotoxins are part of a multi-hit etiology given that some of them are reported to affect immune function and endothelial integrity. Perhaps a mycotoxin makes it easier for a bacteria or virus to set up a permanent presence in tissues. Or something. But, if so, then ongoing levels of mycotoxins may not be particularly relevant, as the damage has been done.

    Googling, I see that it seems that tests for aflatoxins in urine can find positive results in virtually everyone. There are quite a lot of problems around these tests, and the interpretations that are put on them. Some people even think that a negative result is more of a problem, as it shows that the body is not doing its job in excreting the toxins. (Maybe I'll make a thread to discuss the tests. Edit, I did,
    Testing for exposure to mold/mould/mycotoxins)

    Given that, I feel rather concerned about an ME/CFS clinic that is having their patients do the tests, and then are prescribing an (unevidenced) treatment based on the results of the test.
     
    Last edited: Feb 14, 2022
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  9. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Though it might currently be of interest to test for mycotoxins, I agree with our present knowledge it makes no sense making that a basis of treatment, for example I have noticed that the vast majority of adults with ME are more than four feet tall, but I would not suggest shortening their legs as a treatment for adult ME or growth inhibitors as a treatment for paediatric ME.

    This study has not even demonstrated an association, let alone a causal relationship.
     
    cfsandmore, Wyva, Hutan and 2 others like this.
  10. Hutan

    Hutan Moderator Staff Member

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    It's not really even a study. It's a report of medical records. Which, in itself, is fine.

    Yes, the prescribing of unevidenced treatments based on a test that is almost certainly irrelevant is a problem. But the testing is also a problem.

    The clinicians convinced people to have their medical insurance pay for an unvalidated test. People without medical insurance may have been left worried that they were missing out on some important information and may have even paid out of their own pocket.

    The majority of those who had the test done were told that they have levels of mycotoxins that required treatment. That might have caused them to move house, go live in the desert, have extensive house renovations done, throw out all their possessions. I remember reading of people on Phoenix Rising who did those sorts of things - expensive things, things that make family members and medical professionals believe the person has gone crazy, things that end marriages.

    Convincing a desperate person that they need a mycotoxin test and then convincing them that the levels of mycotoxins found have contributed to their ME/CFS symptoms and then convincing them that they need to follow an unevidenced treatment protocol... none of it is harmless when there's no solid ground of evidence to base it all on.
     
  11. Milo

    Milo Senior Member (Voting Rights)

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    While i did not read the paper as of yet, i really like to read the peer review reports. The first peer is Dr Ken Friedman and his review is really sharp.
     
    Peter Trewhitt likes this.
  12. mariovitali

    mariovitali Senior Member (Voting Rights)

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    I wonder if mycotoxins are in the case of ME/CFS patients a trigger that constantly activates the immune system. If this is indeed the case, this study is helpful in my opinion
     
    Peter Trewhitt likes this.
  13. Hutan

    Hutan Moderator Staff Member

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    I think the second reviewer (anonymous) gets to the heart of the issue with the paper better, the issue that forum members also identified as the key problem:
    Edit - although I take on the board the point some have made that it is possible that people with ME/CFS might have an abnormal reaction to levels of mycotoxins that are similar to those of healthy people- a sensitivity or allergy. But in that case, there needs to be some data presented that supports that idea. For example, in individuals, the level of reported symptoms correlated with mycotoxin levels over time.
     
    Last edited: Feb 14, 2022
  14. Milo

    Milo Senior Member (Voting Rights)

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    I had not gone that far in my reading- thank you for pointing it out. I found it interesting that the second person opted to be anonymous and seemingly i was more interested by the person that wasn’t worried about naming himself- however that said, he is retired and employment or reputation may have played in the second reviewer’s anonymous status. I am not sure whether it means they are also anonymous to the authors.
     
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