Abstract
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and fibromyalgia (FM) are two chronic complex diseases with overlapping symptoms affecting multiple systems and organs over time. Due to the absence of validated biomarkers and similarity in symptoms, both disorders are...
Thank you for all of your efforts, I and the rest of the team deeply appreciate it. Please note that, when we appeal to the community to do what they can to spread the word about the study, we aren't hoping for people such as yourself to take on board that message, as you obviously are doing...
Prevalence of ongoing symptoms following coronavirus (COVID-19) infection in the UK: 2 February 2023
1.Main points
An estimated 2.0 million people living in private households in the UK (3.0% of the population) were experiencing self-reported long COVID (symptoms continuing for more than four...
KEY POINTS
People diagnosed with ME/CFS must manage extreme fatigue, and their experiences have implications for those with long COVID.
A challenge of managing an illness like ME/CFS is its invisibility to others, despite its severe impact on a person's ability to function.
Ensuring people feel...
Abstract
Purpose
Craniocervical junction instability in a paediatric population presents a formidable challenge to the neurosurgeon. With a variety of anatomical variations, diminutive bony and ligamentous structures, possible superimposed syndromic abnormalities, the craniocervical junction is...
Trial By Error: My Article About the Life–and Preventable Death–of Maeve Boothby O’Neill
"Last week, Codastory.com published an article I wrote about Maeve Boothby O’Neill, a 27-year-old in Exeter, England, who died in October, 2021, from complications of ME. The specific cause appears to have...
From an NIH email.
"Plans are underway for an ME/CFS Research Conference to be held in-person at NIH and virtually on December 12-13, 2023, with a Young Investigator Workshop on December 11th. Additional details coming soon! Information about the conference will be shared via this list serv and...
I'm not sure what the highest number of questionnaire responses ever is but I'm certain that 9000 DNA samples already represents the largest ME/CFS genetic data set collected by any research group anywhere.
We've been discussing the impact of the questionnaire results on the genetic analysis...
Abstract
New clinical observational studies suggest that Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a sequela of COVID-19 infection, but whether there is an exact causal relationship between COVID-19 and ME/CFS remains to be verified. To investigate whether infection with...
A quick Google search gives these (I have given the forum thread where we have it)
Provision of Social Support to Individuals With Chronic Fatigue Syndrome, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3693568/
Impacts of online support groups on quality of life, and perceived anxiety and...
Immunologic prediction of long COVID
In addition to the acute phase of SARS-CoV-2 infection, a significant percentage of patients experience a prolonged illness with varying symptomatology. Longitudinal SARS-CoV-2 patient-centric immunologic, inflammatory and metabolic data collection has...
Abstract
The biology driving individual patient responses to severe acute respiratory syndrome coronavirus 2 infection remains ill understood. Here, we developed a patient-centric framework leveraging detailed longitudinal phenotyping data and covering a year after disease onset, from 215...
Background
Acute health events, including infections, can trigger the onset of functional neurological disorder (FND). We hypothesised that a proportion of people with long-COVID might be experiencing functional symptoms.
Methods
We performed a systematic review of studies containing original...
Extended to further datasets and clinical cohorts at population scale, this immune repertoire analysis strategy offers a strategy for disease definition refinement and diagnosis, as well as improving understanding of immune response features such as autoreactivity that are shared across...
Abstract
Clinical diagnoses rely on a wide variety of laboratory tests and imaging studies, interpreted alongside physical examination findings and the patient's history and symptoms. Currently, the tools of diagnosis make limited use of the immune system's internal record of specific disease...
We obviously hope it is still possible to hit our target but we only have funding for a set period, so there may come a point where we have to close recruitment to allow for analysis of all of the samples that we do have. We are grateful to everybody who has already shared details of the study...
From an NIH email.
NIH ME/CFS Newsletter, Feb 2023
"This newsletter provides updates and information about new and ongoing activities at the NIH related to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)."
See attached file. I don't think there is anything in it that hasn't been...
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