"It is likely that this illness can be triggered by a heterogeneous group of forces and circumstances." Prof A. Komaroff MD, 1990 1/ #pwME#MyalgicE#MEhistory
"An attractive model is: immune dysfunction is produced as a consequence of exogenous lymphotropic viruses, environmental toxins, stress or depression; the immune dysfunction leads to the reactivation of dormant, latent infectious agents;" Prof A. Komaroff MD, 1990 2/ #MEhistory
"...the reactivated infectious agents produce morbidity through cytodestructive action; the immunologic response to exogenous + endogenous agents, such as the elaboration of various cytokines, may also produce some of the morbidity of the illness..." Prof A. Komaroff MD, 1990 3/
"Over the past 100 years, the medical literature has included descriptions of several ill-defined clinical syndromes that produce chronic fatigue: neurasthenia, postviral fatigue syndrome,chronic mononucleosis, severe chronic active EBV infection,myalgic encephalomyelitis..."4/
"... and more recently, chronic fatigue syndrome. In recent years, there has been much speculation that these syndromes may be secondary to chronic viral infection." 5/
"The syndromes go by different names, but share so many clinical and laboratory features that some believe they may be the same illness: that is, they may share a final common pathogenetic pathway." 6/
"In my judgement, the similarities in the clinical descriptions of patients in all these groups are more impressive than the differences." 7/
"This acute illness never seems to fully resolve. While its character may change over time, and its severity may vary, a state of chronic ill health ensues." 8/
"In our experience, two particularly remarkable findings are post-exertional malaise and recurrent, often drenching night sweats." (NB Night sweats are often mentioned in the literature but I think this might be the earliest reference to PEM I've seen. Pls correct me if not.) 9/
"Most patients seeking medical care for 'chronic fatigue' probably are suffering from a primary affective disorder (depression and/or anxiety), and probably 'do not' have CFS." (My italics) 10/
"At the core of CFS, I suspect, is an immunologic disturbance that allows reactivation of latent and ineradicable infectious agents, particularly viruses. The reactivation of these viruses may only be an epiphenomenon." 11/
"However, I feel it is more likely that, once secondarily reactivated, these viruses contribute to the morbidity of CFS - directly, by damaging certain tissues... and indirectly, by eliciting an ongoing immunologic response." 12/
"In particular, the elaboration of various cytokines (eg interferon-alpha and interleukin-2) as part of this ongoing immunologic war may produce many of the symptoms of CFS." 13/
"Whatever the course, the symptoms of CFS lead to some degree of debility in every patient." 14/
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🧵 1/8 Continuing her impressive work with AI, @JennyWi04810918 asked ChatGPT to devise a treatment plan based on "all the confirmed published research that has been replicated in M.E., starting from 1955 to the present day." Here's what it came up with...
🧵1/11 Jenny Wilson (@JennyWi04810918) is obtaining some fascinating results using AI to interpret test results of anonymous, severely ill #MyalgicEncephalomyelitis patients who have been dismissed by their GP. In this case, Jenny didn't mention ME.
🧵 A selection of #MECFS and #LongCovid research papers published in 2024:
1/ 'Physical exertion worsens symptoms in patients with post-COVID condition : Post-exertional malaise in patients with post-COVID condition' scienceopen.com/hosted-documen…
3/ 'Dysregulation of extracellular vesicle protein cargo in female myalgic encephalomyelitis/chronic fatigue syndrome cases and sedentary controls in response to maximal exercise' isevjournals.onlinelibrary.wiley.com/doi/10.1002/je…
The medical community is failing #pwME badly right now. From GPs who deny patients medication for treatable symptoms to consultants who deny appropriate feeding arrangements for severely ill patients in hospital. 1/4 #MECFS #MyalgicEncephalomyelitis
Change is being blocked by bad faith actors who occupy positions of strategic importance in the medical hierarchy. The new NICE guidelines only seem to have reinforced their determination to retain the fallacious biopsychosocial model of #MECFS in the healthcare system. 2/4
This is undoubtedly a low point for the #MECFS patient community. Even somewhat better media coverage hasn't budged the dial. Ideally we would take visible direct action, but since that isn't possible, we must continue to speak out against the prejudice and maltreatment. 3/4
The long-awaited NIH Intramural Study of ME/CFS, led by Avindra Nath, has finally been published in full.
🧵 "Considering all the data together, Post-infectious ME/CFS (PI-ME/CFS) appears to be a centrally mediated disorder." 1/ nature.com/articles/s4146…
"We posit this hypothetical mechanism of how an infection can create a cascade of physiological alterations that lead to the PI-ME/CFS phenotype. Exposure to an infection leads to concomitant immune dysfunction and changes in microbial composition." 2/
"These immune and microbial alterations impact the central nervous system, leading to decreased concentrations of metabolites, including glutamate, tryptophan, spermidine, citrate, and the metabolites of dopamine (DOPAC) and norepinephrine (DHPG)." 3/
Nath's back, finding a chronically activated immune response causing neuronal injury in the brains of #pwLC. It explains why it's taken him forever to publish his big #MECFS study, but the good/bad news is he thinks the same thing's happening in #pwME. 1/4 healthrising.org/blog/2022/07/1…
This looks very similar to what Komaroff et al suggested was happening in #MECFS 30 years ago: "patients may have been experiencing a chronic, immunologically mediated inflammatory process of the central nervous system." 2/4 pubmed.ncbi.nlm.nih.gov/1309285/
Nath also found the same widespread punctate hyperintensities in the microvasculature of brains which first started showing up in MRI scans of #pwME in the 80s (see J. Goldstein) and were routinely dismissed by neurologists as insignificant. 3/4 healthrising.org/blog/2021/01/2…