“When healthcare providers can’t give treatments and when research is going slowly or barely exists, it is not surprising that people who have extremely debilitating symptoms and impacts to every aspect of their life are going to start researching on their own,” McCorkell says. “We become experts not because we necessarily want to but because we have to in order to have a chance at recovery.”
Simon Spichak in The Guardian 2023
(UPDATED: 11/24/2025)
This page will have links to resources and research I have found that relates to ME/CFS and long COVID. There is an emphasis on the microbiome, and overlapping conditions of fibromyalgia and chemical/sensory sensitivities. I have had issues with all of these since developing CFS.
My page on food will help with a deeper understanding of causes of dysbiosis. Also see my page on CO, as low level chronic carbon monoxide poisoning can be a cause of CFS and is not detected by home CO detectors.
My CFS was caused by two years of low level chronic carbon monoxide poisoning from 2 gas appliances in my home. I was severe/moderate at one time, but now function at about 80 percent of normal most days (11/14/2025 Update: luckily I’m about 90 percent of normal now). (see my CO page) When I experience stressors (viruses, allergies, stress) the severe fatigue and accoutrements return. I write about my recovery process here.
This page will be updated often as I find more information.
Articles
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome from the CDC
Does the microbiome hold the key to chronic fatigue syndrome? (2023) The Guardian
Did an Immune Hole in the Gut Open the Door for ME/CFS (and long COVID)? (2022) “The gut problems preceded the exposure to the Epstein-Barr virus; that is, the people who later developed a more severe form of ME/CFS… experienced more gut symptoms and lower levels of IL-13 and/or IL-5 when they were healthy.”
ME/CFS Websites
Phoenix Rising. A Community for People With Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
Health Rising. Finding Answers for ME/CFS and FM
MEpedia. “MEpedia is a project founded by The MEAction Network, powered by the patient community, and built by volunteers including patients, students, and researchers. We are crowd-sourcing a knowledge base on the history, science and medicine of ME, CFS, and related diseases. Jump in!”
Stanford Medicine. ME/CFS Initiative
Dr, Sarah Myhill. She has an extensive knowledge base for chronic fatigue on Wiki. Her CFS checklist is here. While she is a controversial figure, honestly I have found much of her information helpful. I mention her book on my recovery journey page. She also has YouTube videos.
CFS Remission. A fellow blogger with a similar mission, to find remission for ME/CFS, chronic Lyme, FM, IBS, etc. He possesses a few more IQ points that I do (to put it mildly). Posts are fascinating and research is provided to back it up. Great read!
LCAI – Long Covid Advocacy Ireland THE VOICE FOR LONG COVID IN IRELAND. We are an advocacy group comprised of Long Covid patients fighting for change in Ireland.
ME/CFS/Long COVID & the Microbiome
(Added to 11/14/2025)
Chronic fatigue syndrome is a puzzle. Your gut microbiome may hold the key. (2023) National Geographic. “New research reveals connections between certain gut bacteria and chronic fatigue syndrome, an ailment often connected to long COVID.”
More Clues into ME/CFS Discovered in Gut Microbiome. (2023) “progress on this research front from two NIH-funded ME/CFS Collaborative Research Centers. The findings, published in two papers from the latest issue of the journal Cell Host & Microbe, add further evidence connecting ME/CFS to distinctive disruptions in the trillions of microbes that naturally live in our gastrointestinal tracts, called the gut microbiome”
Deficient butyrate-producing capacity in the gut microbiome is associated with bacterial network disturbances and fatigue symptoms in ME/CFS (2023) “Butyrate is an important health-promoting bacterial metabolite with diverse beneficial properties, including its role in host energy metabolism…deficiency in this intestinal homeostatic metabolite could contribute to a range of detrimental physiological disturbances including a weakened epithelial barrier and enhanced intestinal inflammation. Evidence for disruption of intestinal barrier function is supported by prior research showing elevated levels of plasma lipopolysaccharides in ME/CFS, indicative of microbial translocation.27“
Gut and airway microbiota dysbiosis and their role in COVID-19 and long-COVID (2023) “Microbiota homeostasis plays a role in human health and disease, and that applies to SARS-CoV-2 infection as well. During the last 2 years, several studies reported dysbiosis in COVID-19 patients for both gut and lung microbial composition. The main microbiota alterations that have been observed during COVID-19 were (a) significant reduction in α-diversity, already during the early phase of the disease and especially at the gut level, “
The Gut Microbiome in Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) (2022) “The aim of this review is to explore and discuss the current state of knowledge on the interplay between ME/CFS and the microbiome, to identify potential diagnostic or interventional approaches and finally to describe areas where further research is needed.”
Gut dysbiosis in severe mental illness and chronic fatigue: a novel trans-diagnostic construct? A systematic review and meta-analysis (2021) “Gut dysbiosis biomarkers were increased in patients vs. controls and associated with more severe symptoms of sickness behavior across diagnostic categories, independent of medication status…The pooled estimates showed that patients, when compared to controls, had increased circulating levels of the tight-junction protein zonulin, the endotoxin LPS, the gut-related systemic inflammatory proteins LBP and sCD14, antibodies against endotoxins, and the acute phase protein A-1-AT…Zonulin is a tight-junction protein and key regulator of intestinal permeability, with increased circulating levels suggesting a compromised intestinal barrier” (see more about Zonulin on my gut page)
From IBS to ME – The dysbiotic march hypothesis (2020) “The main findings among 1100 consecutive patients with IBS are an extensive past medical history (on average 26 years), during which 80%–90% of the patients, in addition to IBS, developed joint/muscle pain and chronic fatigue, and 65% developed ME.”
Long COVID & the Brain
(Added 3/26/2025)
Melatonin regulation of phase separation in Neuro-PASC: out-maneuvering Janus-faced amyloids (2025) “Exogenous melatonin not only prevents mitochondrial dysfunction but also elevates ATP production, effectively augmenting the solubilizing effect of the adenosine moiety to ensure the timely, optimal disaggregation and clearance of pathogenic amyloid aggregates in the prevention and attenuation of Neuro-PASC.”…”Many viral infections are associated with elevated risks in the development of NDD.”
CFS, Fibromyalgia, & Multi Chemical & Sensory Sensitivity
Chronic Fatigue, Fibromyalgia, and Chemical Sensitivity: Overlapping Disorders (1995) No Abstract Available
Recent insights into 3 underrecognized conditions (2018) “recently released the interim report1 of a task force charged with providing recommendations on 3 symptom-based conditions that have both shared and distinctive features: myalgic encephalomyelitis–chronic fatigue syndrome (ME-CFS), fibromyalgia (FM), and environmental sensitivities–multiple chemical sensitivity (ES-MCS).2“
Environmental Medical Syndromes (2017) “Environmental medical syndromes comprise sick building syndrome (SBS), multiple chemical sensitivity (MCS)/idiopathic environmental intolerances (IEI), electromagnetic hypersensitivity, chronic fatigue syndrome (CFS), burnout, fibromyalgia, and the candida syndrome. There is also some overlap described in the literature. “
The non-specific environmental syndromes MCS (Multiple Chemical Sensitivity), IEI (Idiopathic Environmental Intolerance) and SBS (Sick Building Syndrome) (1998) “These syndromes are very controversial discussed between scientific medicine and “clinical ecology”. In addition, they have fundamental similarities to Chronic Fatigue Syndrome (CFS) and Fibromyalgia.”
Health outcomes of sensory hypersensitivities in myalgic encephalomyelitis/chronic fatigue syndrome and multiple sclerosis (2023) “here were significantly higher percentages of people with hypersensitivities in the ME/CFS sample compared to the MS sample. Regardless of illness, participants that exhibited both hypersensitivities reported greater symptomology than those without hypersensitivities.”
Carbon Monoxide Poisoning and Multi Sensitivity (2016) “As well as impairing oxygen delivery, CO can destabilise blood sugar levels, dysregulate the autonomic nervous system to disturb heart rate, respiration, blood vessel tone, upset mental function (learning and memory), disturb sexual function and trigger sensitisation to smells, light, sound, touch etc.”
Miscellaneous
Non-Diseases or CO Poisoning? (2002/2015) Albert Donnay, Toxicologist. “I think it is very telling that more than half the disorders on your list of “non-diseases” are characterized by common–but also commonly
overlooked–symptoms of carbon monoxide poisoning…”
Book: Chronic fatigue and its syndromes (1999) by S Wessely, M Hotopf, M Sharpe.
The Foggy Noggin' Diner 