INIM (NSU Institute for Neuro-immuneMedicine) webinar - 'Understanding ME/CFS Today: A Clinical & Research Approach' May 2020

Amw66 said:
Daughter diagnosed with sinusitis later year, took various meds, didn't really get rid of it.

She often says it feels like her nose has cement in it, and is uncomfortable at bridge/ junction between bone and cartilage.
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Dry nose may occur in Sjogren's Disease. Other possible symptoms in Sjogren's are dry skin, dry mouth, dry eyes and dry ears. Arthritis can occur because of dry joints. I'm sure there are other symptoms, but the ones I've mentioned are all I can remember off the top of my head.

Edit : There is a product called "Nasogel" which is available (or was) from Boots.

Code: 
https://www.amazon.co.uk/NeilMed-GSP30-ENG-INT-30ml-NasoGel-Spray/dp/B004QDS7UM

Amazon product ASIN B004QDS7UM
I've bought it and it does help but it was too expensive for regular use for me.
 
Amw66 said:
Interesting. Daughter diagnosed with sinusitis later year, took various meds, didn't really get rid of it.

She often says it feels like her nose has cement in it, and is uncomfortable at bridge/ junction between bone and cartilage.

If mucus genetics are in play does that indicate lungs and gut too ( both of which have issues) ?
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All epithelial barrier tissues have tight junctions, with tight junction protein complexes and a lot of other proteins involved in regulating them. Disturbed tight junctions makes these tissues more permeable to germs and other substances that are not supposed to cross them. I can think of two studies where the epithelial barrier in the gut seemed compromised in ME/CFS.

The proteins are also found in the blood-brain-barrier and at least here some of the factors that negatively impact them are the same for those found in the gut. If this is the case in the nose I can't say.

I have intermittent rhinitis, it comes with other flu like symptoms when I get those. But I've a hustory of rhinititis since I was a child so I haven't connected it to my ME.
 
Ravn said:
Their hypothesis, in my oversimplified words: disturbed nasal microbiome and/or lack of normal mucus protection leads to irritation of nasal cells which leads to immune response which can be propagated in the blood which leads to aggravation of ME symptoms elsewhere in the body. Alternatively irritants and pathogens can get directly into the brain via the nose if the mucus defenses are disrupted.
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Amen to that. I'm definitely one with a background of chronic nasal symptoms and related medical history, preceding my ME/CFS. I had allergies and rhinitis from childhood and was prescribed nasal steroid spray and Fucidin cream (an antibiotic cream) from age 14 into my early 20s. I was prescribed Minocycline antibiotics for acne as a teen; then Isotretinoin (Roaccutane brand in UK) as a young adult, which dried out my mucous membranes. I still have chronic nasal congestion, pressure in my sinuses, tinnitus, and feeling of dry, coated, mucous membranes in my sinuses.

About the one treatment I've found that helps with this (only temporarily unfortunately) is a course of Mupirocin (Bactroban) nasal ointment. This improves cognitive function, hearing, vision, it has a systemic impact to reduce inflammation and joint pain, and increased energy levels. Very interesting!

I remember Dr White and Dr Shoemaker suggesting something about coagulase negative staph and neurotoxins, and thought something along those lines could be implicated. A toxin or superantigen producing systemic illness.
 
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Midnattsol said:
So vulnerable mucus barriers?
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Not sure. I don't understand how these genetic variants would affect mucus barriers.

Alterations in MAIT cells, zonulin, LPS and increased intestinal permeability following exertion have been reported in ME/CFS.

In some ways ME/CFS resembles a persistent infection but nobody can find the pathogens... maybe they're just blending in with normal microbiome and happen to be problematic due to there also being some mucosa and gut barrier problems and whatever the equivalent is for the nose and sinus area.
 
The article is based on the talk by Craddock in the webinar.

I'm afraid I got distracted by Cort's spelling:
Simply put, mucus is a noun and mucous is an adjective. So, the actual fluid that comes out of your nose when you are congested is mucus and the linings in your body that secrete mucus are mucous membranes. ... '
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strategist said:
Not sure. I don't understand how these genetic variants would affect mucus barriers.

Alterations in MAIT cells, zonulin, LPS and increased intestinal permeability following exertion have been reported in ME/CFS.

In some ways ME/CFS resembles a persistent infection but nobody can find the pathogens... maybe they're just blending in with normal microbiome and happen to be problematic due to there also being some mucosa and gut barrier problems and whatever the equivalent is for the nose and sinus area.
Click to expand...
The barrier problems could be caused by mucus problems. Some bacteria/viruses/allergens can change the expression and organization of the tight junction proteins that keep the gut epithelium barrier (or skin barrier, or blood brain barrier) together. With a change in the mucus it would be easier for the bad stuff to get access to the epithelium and its tight junction proteins. Since we've been talking about polyuria on another thread, these proteins are also found in the bladder.
 
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