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

Sly Saint

Sly Saint

Senior Member (Voting Rights)
INIM Webinar - Understanding ME/CFS Today: A Clinical & Research Approach
Speakers:
1. (0:08:17) Maria Vera-Nunez, M.D., MSBI, DABOIM, IFMCP - Physician An Introduction to the Functional & Integrative Medicine Approach to ME/CFS

2. (0:31:55) Irma Rey, M.D., FAAEM, DABEM, DABIM - Physician An Environmental Approach to ME/CFS

3. (1:22:26) Irina Rozenfeld, MSHS, MSN, ANP-BC, APRN - Nurse Practitioner Nutrition as a Therapeutic Approach in Patients with ME/CFS

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
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(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.
inim webinar screenshot.JPG
 
Ravn said:
...found all the general functional and integrative medicine stuff less than interesting
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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.
 
Ravn said:
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.
View attachment 11051
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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) ?
 
Ravn said:
chronic rhinitis is common in ME
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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.
 
Ravn said:
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.
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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.
 
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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.
Abstract

Background: Atopy and allergic rhinitis are thought to be increased in prevalence in chronic fatigue syndrome (CFS).

Methods: To investigate this hypothesis, 51 CFS (CFS), 34 normal (N), 27 allergic rhinitis (AR), and 17 patients with other rheumatologic diseases filled out an Airway Symptom Severity self-report questionnaire to determine the frequencies of nasal, sinus, and chest symptoms, and a Systemic Complaints self-report questionnaire to determine the frequencies of complaints referable to neurologic, rheumatologic, gastrointestinal, and other systems. All subjects received a standard set of allergy skin tests, and were subdivided into those with positive and negative results.

Results: Allergy skin tests were positive in 35% of CFS and 44% of N subjects (difference not significant by Chi2). Significant rhinitis complaints were present in 83% of skin test positive CFS, 76% of skin test negative CFS, 74% of AR, and 23% of N subjects. Systemic Complaints scores were significantly elevated in skin test positive (94%) and negative (94%) CFS groups compared with AR (35%) and N (6%) groups. This score could significantly discriminate between CFS and N subjects.

Conclusions: These data indicate that in this CFS population, 24% had no significant rhinitis complaints, 30% had positive skin tests suggesting the potential for allergic rhinitis complaints, and 46% had nonallergic rhinitis. The mechanism of the nonallergic component may offer insights into the pathogenesis of CFS.
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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/

Chronic fatigue syndrome (CFS) is an enigmatic and often disputed illness. The initial cases were described as rapid onset fatigue with flu-like symptoms of malaise, myalgia and a sensation of feverishness that were detected in infection-like epidemiological clusters. Almost 74% of CFS subjects have nonallergic rhinitis of probable neurogenic origin. Other potential pathological mechanisms such as allergy, infection and immune deviation are unlikely to play causative roles. These subjects are likely to find their way into our offices making it imperative that we learn to recognize the condition and its allied syndromes, and develop an empathetic but structured approach to their long-term care.
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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

New information about the pathophysiology of idiopathic nonallergic rhinopathy indicates a high prevalence in chronic fatigue syndrome (CFS). This article shows the relevance of CFS and allied disorders to allergy practice. CFS has significant overlap with systemic hyperalgesia (fibromyalgia), autonomic dysfunction (irritable bowel syndrome and migraine headaches), sensory hypersensitivity (dyspnea; congestion; rhinorrhea; and appreciation of visceral nociception in the esophagus, gastrointestinal tract, bladder, and other organs), and central nervous system maladaptations (central sensitization) recorded by functional magnetic resonance imaging (fMRI). Neurological dysfunction may account for the overlap of CFS with idiopathic nonallergic rhinopathy. Scientific advances are in fMRI, nociceptive sensor expression, and, potentially, infection with xenotropic murine leukemia-related virus provide additional insights to novel pathophysiological mechanisms of the "functional" complaints of these patients that are mistakenly interpreted as allergic syndromes. As allergists, we must accept the clinical challenges posed by these complex patients and provide proper diagnoses, assurance, and optimum care even though current treatment algorithms are lacking.
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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/
 
Ravn said:
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/
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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.
 
Ravn said:
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/
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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.

While he acknowledged that localized activation of mast cells or (entopy) could possibly contribute to the facial pain in ME/CFS and FM, he asserted that peripheral and central sensitization, and nerve and autonomic nervous system issues were more likely the cause.
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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

Analgesics, antibiotics, and intranasal steroids are usually ineffective.

Baraniuk, however, was unable to find any evidence or swelling or blockages in the noses of ME/CFS patients that could explain their feelings of pain, heaviness and congestion.
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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).
 
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