Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Pub Med new paper: Describes a case of CFS recovered by avoiding mold

Discussion in 'Latest ME/CFS Research' started by Countrygirl, Aug 2, 2016.

  1. Countrygirl

    Countrygirl Senior Member

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    http://www.ncbi.nlm.nih.gov/pubmed/27165859


     
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  2. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I think this is an advert for Mr and Mrs Gunn's non-validated tests to be honest. The American Journal of Case Reports seems to publish anything you like. The abstract does not qualify as science. From what it says the patient might have got better with the VIP replacement or the 'implementation of a mind body intervention-relaxation response program'. There is no such thing as chronic inflammatory response syndrome as far as I know.
     
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  3. Gingergrrl

    Gingergrrl Senior Member

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    CIRS is a real illness as is MCAS, MCS, ME/CFS, POTS, Lyme, etc. I hate seeing posts where these illnesses are flat out discounted as not being real. I guess one has to actually experience it to know which is unfortunate.
     
  4. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I am not denying people have real illnesses Gingergrrl, but chronic inflammatory response syndrome, as far as I can see, is a made up term used by people who do not understand the scientific basis of medicine to pretend to patients that they do. You do not have to experience ME to know that people have severe illnesses that are reasonably put under that name label. But chronic inflammatory response syndrome is a bogus category designed to sell pseudo-scientific tests as far as I can see. They mention a high TGF beta and that is said to be an anti-inflammatory cytokine so it is a bit hard to know what they think they mean anyway.
     
  5. Valentijn

    Valentijn Senior Member

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    Their HLA claims are relying on Shoemaker's past publications, which are methodologically completely useless. There's no indication that any HLA type would be of particular relevance.

    I have to agree, this sounds like a sales pitch. At the very least, the researchers are incapable of evaluating the quality of the research they are citing.
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    I wasn't defending the authors of the study or their products vs. that the idea that mold and biotoxin illnesses like CIRS seem to be so easily dismissed as unreal on PR when they have affected so many people. I don't have it in me right now to defend it, it just gets tiring to read repeatedly why it's not real when it is such a serious trigger of illness with wide ranging effects.
     
  7. Esther12

    Esther12 Senior Member

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    It can be hard to be clear that being unsure about a particular label doesn't mean one is dismissing people's health problems. (Ugh... I felt like I was close to sounding like Wessely there).

    Personally relieved if this paper is weak, as we have a problem with damp that we just cannot resolve, and I think that might play a role in sinus trouble I have... really don't want to feel I have another reason to be doing 24/7 scrubbing of mold growth. The idea of moving again makes me shiver with fear too.
     
    Last edited: Aug 3, 2016
  8. Gingergrrl

    Gingergrrl Senior Member

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    Esther, thanks and you don't sound like Wessley LOL. Just hard to distinguish someone saying this is a bad study vs. "CIRS/mold or environmental illness etc" is not real and does not exist.

    Stachybotris Chartarum (which we had at unseen before high levels in our former rental) has caused babies to die from bleeding in their lungs.

    My family was able to clear it from their bodies b/c they were in good health (even though it caused them some minor health issues) but I could not clear it b/c I was already immunocompromised from having mono/EBV about 7-8 mos before moving in.

    I also test positive for the gene that you cannot detox mold and now have nodules in my lungs that all docs agree are from the mold exposure plus other as yet to be identified lung nodules.

    It's a losing battle (as with all these illnesses) if discussing with someone who does not believe in them. I get that and have to get ready for an appt shortly so will stop. To those who have been affected, they know it's real.
     
  9. Dufresne

    Dufresne almost there...

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    Perhaps clinicians don't make the best scientists, but it seems the scientists have difficulty investing their resources in anything that will actually help sufferers anytime soon. If only scientists could learn from the docs on the front line we might all save a lot of time

    Younger 'discovered' a correlation between leptin and fatigue and everybody thinks this is interesting; he's boy wonder. Yet Shoemaker made the connection over a decade ago. Or how about Cheney identifying the diastolic problem ten years before Miwa and Newton?

    Both these guys have been trying to help patients for a long time and I think they deserve credit for their innovation and compassion. Don't get me wrong, they're also deserving of whatever scientific criticism they have coming to them. But I think it's foolish to think there isn't anything potentially useful in the sincere work of doctors who've seen thousands of patients, even if you have to sift through the junk.

    I also believe Shoemaker was onto C4a before it was fashionable. Perhaps a study could show how C4a rises with exposure to toxic buildings and then drops with avoidance. I know many patients who've charted their C4a and seen a correlation. They also often see improvement in their PEM with avoidance. And of course C4a has been shown to be elevated after moderate exercise in PWME while unchanged in healthy controls. All very interesting, and nobody's doing jack shit about it.
     
  10. Dufresne

    Dufresne almost there...

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    We have ME/CFS, CFIDS, SEID, MCS, EHS, MSIDS, CIRS, etc. Basically they all mean something and I think I understand what people mean when they use them. Whether they're recognized by mainstream doctors isn't really relevant as far as I'm concerned. And the science seems dodgey on all of them, no? They're clinical diagnoses. So what's wrong with labeling a theory so we know what we're talking about? I personally think Horowitz's MSIDS describes my situation better than any of the others.
     
  11. Gingergrrl

    Gingergrrl Senior Member

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    Thanks @Dufresne and you explained it better than I could! Just found out my TGF-b1 went down from 9400 last summer to 2150! Am certain all the mold treatment and glutathione helped reduce this inflammation.

    ETA: My MCAS doctor ran the second test at hospital lab (no connection to mold doctor and different lab) so I know that the numbers truly went down. He uses many markers of inflammation and has no knowledge or connection to Shoemaker's tests.
     
    Last edited: Aug 6, 2016
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  12. Groggy Doggy

    Groggy Doggy Senior Member

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    Amen. There is a thing called 'reverse engineering', maybe today's medical scientists don't understand the concept? Could you imagine an electrical engineer being handed an iPhone 6, 20 years ago? People in high tech would know exactly what to do. But medical scientists seem foreign to the concept and would probably toss the iPhone 6 in the trash (the equivalant of ignoring treatments that help ME peeps). I just don't get it, but then that's why I spent a career in high tech and avoided the slow and clunky field of health care (MD, medical research, etc) and its politics. Huge high tech global companies are flexible and can turn on a dime; they are afraid that their unreleased products will be stolen, because they know another company could easily reverse engineer it. (I could easily write 5 pages on this topic).

    Amen again. My busy front line doctor has a leptin treatment he wants to study, metreleptin, but gaining support to enable this is another matter. The issue seems to be more about NIH (not invented here). So if 10 - 15 years from now, after $100M+ is spent, and some scientist wins the nobel prize by coming up with treatments (similar to the 3 my doctors uses now), I will count up the number of people that have died in our community between now and then, and send this person a personal letter. But my letter may end up in the trash, just like the concept of 'working together' to solve ME.

    GD :dog:
     
  13. Forbin

    Forbin Senior Member

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    I don't know about the details of this paper and its theory, but I am increasingly suspicious of a link between gut inflammation (such as seen in Chron's disease and chronic uclerative colitis), the fungal component of the microbiome, and ME/CFS symptoms - at least in some patients.

    Ian Lipkin apparently suspects that fungi may be a problem in some ME/CFS patients.
    http://simmaronresearch.com/2015/12...ears-to-solve-chronic-fatigue-syndrome-mecfs/

    Dr. Hornig also mentioned that the CII would be looking at fungi in ME/CFS for the first time ever.
    http://simmaronresearch.com/2016/06...tigue-syndrome-mecfs-project-dr-hornig-talks/
     
  14. Gingergrrl

    Gingergrrl Senior Member

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    I agree with you @Forbin and I think there is a connection between mold not just with the microbiome but with inflammation and allergic reactions in general. Since moving away from a rental with toxic mold, I have had improvements both in my MCAS reactions and my inflammation markers. I am still very ill, and probably always will be, but am glad that researchers are looking at mycotoxins in addition to viruses and bacteria as a source of illness.
     
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  15. Chocolove

    Chocolove Tournament of the Phoenix - Rise Again

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    @Gingergrrl @Fighttolive There is a very interesting blog by a woman who recovered from Addison's (generally not thought possible) which may have been caused predominantly by mold in the home. See:

    http://livingwithaddisondisease.blogspot.com/2014/01/i-had-never-thought-about-how-mold.html#more
    http://livingwithaddisondisease.blogspot.com/search/label/Adrenal Recovery
    To think that she might not have discovered the mold had they not decided to remodel the house ...a very real possibility.

    How many here are suffering from mold exposure I wonder?
     
    Last edited: Aug 14, 2016
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  16. taniaaust1

    taniaaust1 Senior Member

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    hi ginger, I too have what is apparently the worst genotype as far as mold goes.

    Mold is one of the several things which is probably implicated in my first getting ME (I was living for years in a badly affected mold house due to a water issue in the walls and seepage up throu the wooden floor boards. I developed ME while living there) and I have had trouble with it ever since.

    Interesting my sister who drank out of my glass and ended up with ME/CFS too, she too was living in badly mold affected house at the time.. she had a leaking pipe under her kitchen sink in which here landlord just left and everything in that cupboard area and cupboard was all affected by mold. (my unaffected 2 sisters have never lived in mold affected houses).
     
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  17. Gingergrrl

    Gingergrrl Senior Member

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    I suspect this happens all the time and is not rare. It took us 2-3 years to finally discover the level of mold that was being circulated by our A/C unit in our prior rental.

    Yes, I have one of the worst ones, too, which did not surprise me at all.

    I agree and for me, the mold exposure was the final trigger and I moved into the moldy rental shortly after I had "recovered" from mono. I think if my immune system would have had more time to recover from the mono/EBV without having to breathe in toxic levels of mold, I probably would never have reached this level or have developed the MCAS.

    I agree, that is very interesting!
     
  18. Chocolove

    Chocolove Tournament of the Phoenix - Rise Again

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    From http://articles.mercola.com/sites/articles/archive/2011/09/03/molds-making-you-ill.aspx
    This article has video links that include the account of a family in the USA suffering from a variety of illnesses caused by mold.

    Just think about all those closed buildings that don't even have windows to open for fresh air.

     
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  19. SueJohnPat

    SueJohnPat Sue

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    Hello, I was officially diagnosed via 2 separate day exercise studues. One at Ithica College (Betsy Kelller and one at Georgetown (James Baranuik) at the time I was fighting my disability insurer. Finally just settled for about 1/2 of what I was owed. I am persuing " mold" avoifance.

    Previously i did do 3 treatments that helped. - valtrex/ Celebrex for 6 months got rid of intense fibro pain-, bio identical hormones ( I am 52, ) Xiafaxamin for ibs ( short remission) high doses of probiotics vsl3 and mutaflor, methylation protochol.

    I have read Erik Johnsons book , studied Shoemaker read Lisa Petison' and Erik Johnson's beginning mold avoidance handbook. I was generally having some improvement but still had excessive urination. Pots like symptoms and of coarse pem.

    I went too Tecopa California ( outside Death Valley) . I rented a car and bought all new things. After 2 weeks No longer needed clonazepam to sleep. Hiked 3 miles on a rugged trail at Zabrinski point. No pem. I was overjoyed.My home in NJ had a lot of mold in the basement ,had it remediated while I was gone. I have been taking cholestyramine since August. .i did improve with cholestyramine while living at home , just never went down the basement so I don't think my house was that problematic.


    I have no scientific proof of coarse. I plan on trying to gut it out here in NJ but if I get sicker I will head to Tecopa again. After feeling well can't go back. I definitely think that mycotoxins / interface perhaps between the environment and man made chemicals , even enf's effecting those that are sick are in play.

    Then I flew back home to Philaelphia. I live right off the Delaware river in NJ.

    I felt like a 20 year old for a month, then Cfs creeping in. I am still able to be more active physically then before but at times an having pretty debilitating neuro cognitive symptoms. Emotional outbursts feeling spaced out. Then feeling " normal", overall more Wired feeling. We changed our cordless phones to corded ones. I feel really weird and spaced out after a(whatever the hell it is in NJ) exposure. I never felt this way in Tecopa. I did have a bout of pem after hiking in Red Rock canyon. I was ion Las Vegas at the time. Walked by a perfume section in a department store and felt freaky, ran away. My husband did not believe in this at all. But after observing my symptoms he is on board. I am " decontaminating whenever I go outside . My symptoms always got much worse in the fall. I had tried uv therapy ect but symptoms were just unbearable as I am sure we all know.
    I think in the least this should be looked into. If I was a new patient I would go to a pristine location for a few weeks and follow this protocol.
     
    Last edited: Jan 2, 2017
  20. geraldt52

    geraldt52 Senior Member

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    I couldn't agree more. It seems a common tactic nowadays to "label" something, and then proceed as if something is actually "known".

    The CDC certainly has gotten a lot of mileage out of "CFS", which as near as I can tell they know absolutely nothing about to this day, and aren't trying too hard to find anything out. Obviously they don't make any money on bogus tests and treatments, but they do employ a lot of people to pass paper around, go on junkets, and pretend they're interested.
     
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