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

https://www.youtube.com/watch?v=QfrCF2atQxI

(I haven't watched it)

 

Started to watch the first speaker but found all the general functional and integrative medicine stuff less than interesting.

Skipped forward to speaker #4 (1:54:52) "Travis Craddock, Ph.D. - Director of the Clinical Systems Biology Group The Potential Role of Ocular and Otolaryngological Mucus Proteins in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome".

Move over gut microbiome. Make way for the the nasal microbiome.

It appears chronic rhinitis is common in ME (I certainly have it but never really connected it to ME).

The team found a number of snps in mucus related genes. Referred to this study: Perez M, Jaundoo R, Hilton K, et al. Genetic Predisposition for Immune System, Hormone, and Metabolic Dysfunction in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Pilot Study. Front Pediatr. 2019;7:206. Published 2019 May 24. doi:10.3389/fped.2019.00206

Not sure if that is the much maligned Klimas 23andme study or a different one (@wigglethemouse)? Either way, if I understood correctly, they looked at the data again and what's presented here is different from the data in the paper.

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.

 

I don’t even want to watch it.

Also, environmental approach- geez. If environmental doctors do not even touch the most ‘environmentally-related diseases’, why is it that ‘some’ doctors claim ME and FM are environmental illnesses? It simply stigmatizes these diseases further. When sick with ME, one should not have to list all of the product for personal care they use or state the level of pollution they are exposed to. The more ‘holistic’ it gets, the less i want to hear these people talking. It is not based on solid science. It is based on promoting ‘treatments‘ that are not based on evidence.

 

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) ?

 

Time for a poll? I have chronic rhinitis, but I didn't think everyone had it.

 

My nose is constantly stuffy and it's annoying.

 

Does it get worse with PEM for you? Does for me. Also makes it hard to lie down and relax.

 

Rhinitis is intermittent with me, but does often occur without any obvious infection or environmental trigger and is a feature of PEM for me.

Didn’t we have a poll on this before or am I making this up?

 

Freaking reporting for duty. I've had that since early in the year and been trying to figure out what is causing it and it's incredibly annoying. I don't have the fight in me for yet another pointless attempt at figuring out and solving one, just one, problem.

That and basically what feels like "sun burns", especially on my face and hands. Even after a decade this stupid disease keeps throwing new things at me.

 

My ME trigger in April 2017 was sinusitis / pressure behind the eyes / forehead congestion.

I never had a flu-like feeling, temperature, cough, etc.

 

Yes, and I've always wondered why!

 

Yes that is the study. I did email Travis Craddock about the issues with the paper, and Solve as he presented on their YouTube channel, but neither responded. There is likely good data buried in the data they have. But a lot of the papers conclusions were downright wrong based on miscalls, or mistakes in analysis (such as allele frequency or mixing v4 and v5 data). Hopefully this new info is based on a reanalysis.

Watching videos is tough for me, and I've lost a fair bit of respect for them what with the genetic paper and I also thought their modelling paper was poor (for example no validation set, very little actual data). So thank you for summarising the key part.

EDIT to add : A user on PR (creator of Genetic Genie) offered to do the reanalysis, and I passed that on to Travis Craddock, but again no reply.

 

Same. Which makes it very hard to breath through face masks I wear when going to get water in the kitchen in my building. Using very thin cloth ones, cause can't breath with a better filtering one.

 

The Stuffy Nose Syndrome seems to have struck a chord so here are the articles cited in Craddock's presentation - some are quite dated - about rhinitis in ME.

Have only skimmed the abstracts but it looks like rhinitis is a Baraniuk interest that hasn't really caught on. He appears to view it as more of a neurological issue, something like autonomic dysfunction which would likely be one of the many annoying downstream effects of ME. By contrast, Craddock's hypothesis of a defective mucosal barrier allowing unwanted molecules entry into the body or brain could potentially be causal. I can see how it could lead to low level inflammation but not how it would fit with PEM.

Baraniuk JN, Clauw DJ, Gaumond E. Rhinitis symptoms in chronic fatigue syndrome. Ann Allergy Asthma Immunol. 1998;81(4):359‐365. doi:10.1016/S1081-1206(10)63129-8
https://pubmed.ncbi.nlm.nih.gov/9809501/

Book chapter: Baraniuk J.N., Merck S.J. (2009) The Nonallergic Rhinitis of Chronic Fatigue Syndrome. In: Pawankar R., Holgate S.T., Rosenwasser L.J. (eds) Allergy Frontiers: Clinical Manifestations. Allergy Frontiers, vol 3. Springer, Tokyo
https://link.springer.com/chapter/10.1007/978-4-431-88317-3_5

Baraniuk JN, Zheng Y. Relationships among rhinitis, fibromyalgia, and chronic fatigue. Allergy Asthma Proc. 2010;31(3):169‐178. doi:10.2500/aap.2010.31.3311
https://pubmed.ncbi.nlm.nih.gov/20615318/

And also https://www.healthrising.org/blog/2019/10/14/phantom-nasal-congestion-chronic-fatigue-fibromyalgia/

 

There's also this thread on non-allergic rhinitis:
https://www.s4me.info/threads/non-allergic-rhinitis.8163/

 

Are MAIT cells relevant here?

 

Considering I did not experience this, besides runny nose anyway, for a full decade of illness, it's probably one of those extra-hard to identify things because occurrence is a bit chaotic. This is what happens when no budgets are ever allocated for longitudinal studies. All those small snapshots in time don't work at studying a complex disease that fluctuates heavily over time.

It's like doing security but only checking a few screenshots during the shift. That's just not how any of this works. Failure is a choice here.

 

None of his conclusions ever really sat with me, however, I admit I have never read the full papers as they are not easily findable and so I don't know how strong his evidence for the following is and I have relied on Cort for the summary.

I do recoil at the word sensitization being thrown around, even though clearly Bararniuk is trying to find objective measures. TRP channels could be relevant. I don't think even peripheral sensitization happens in a vaccum, and I'm not sure how I feel about blaming the ANS for everything.

One concern I noticed was from the Cort article

I would often tell drs about my NAR and about half of them refused to acknowledge significant inflammation. At the same time I couldn't breathe through my nose at all! This was something I could look at my own face, see the swelling on the side and have it refuted by a GP.

Anyway, I'm not sure that I'm a fan of the idea this causative theory since a good chunk of people don't have this symptom at all.

 

Sigh. I'd prefer them to investigate ME-specific issues – such as why the neck lymph nodes swell up after exertion in many patients – rather than start developing new theories about a very common and widespread problem, which could just as easily be connected to air pollution (or several dozen other features of modern life).