This thesis is from a student, Sanne Rodenburg,in the Netherlands, and so I would assume that English is a second language. I would therefore assume that the intention of using "normal activity" in that description was to attempt to describe how PEM can potentially be triggered by any possible...
From https://www.parliament.uk/about/mps-and-lords/members/apg/rules-on-appgs/
21. Groups must be transparent about their nature, membership and funding. In particular, they must avoid presenting themselves in a way which could lead to confusion with Select Committees. They must make full...
And I'm suspicious when the only results reported by patients, at least on that figure, were "No effect" or "Improved". 91 patients and nobody at all reported worsening of any measure? Again, hopefully the preprint explains this.
The COVI workshop on Long Covid: a brief summary
On 9 March, a workshop on Long Covid was held in the European parliament. Various invited experts and Members of Parliament highlighted a link between ME/CFS and Long Covid.
https://europeanmecoalition.com/the-covi-workshop-on-long-covid/
"IACFS/ME Public Business Meeting
March 31, 2023, at 2 PM EST (New York City, USA time)
Zoom Meeting Link: https://stonybrook.zoom.us/j/96941533324?pwd=WkF4U3VQOXpEckJLb2xmZGhDYmVCZz09
Purpose: Educate and update members and the public about IACFS/ME's status and activities
Topics: Board...
"Endometriosis is excruciating. But the medical scale for pain is tragically flawed, leaving women in particular to suffer
On a scale of zero to 10, with zero being no pain at all and 10 being the worst pain imaginable, how is your pain?
Because pain is impossible to diagnose objectively...
Abstract
Objective
The heterogeneous conceptualizations and classifications of persistent and troublesome physical symptoms impede their adequate clinical management. Functional somatic disorders (FSD) is a recently suggested interface concept that is aetiologically neutral and allows for...
Abstract
Some survivors of humidifier disinfectants (HDs) complain of chronic, inexplicable fatigue, and post-exertional malaise (PEM). Two-day cardiopulmonary exercise tests (CPETs) performed 24 hours apart (2-day CPET protocol) are increasingly employed to evaluate PEM and related...
So pesky patients should be deflected into, most likely, pointlessly emailing whoever controls the IAG account, while people they really care about should actually email Cochrane. I don't understand quite what is so difficult about giving an update statement, even if it is one that is admitting...
The paper says this about the questionnaire.
"A PEM questionnaire (Fig. 1) was administered online to people who were seeking clinical care for Long COVID at Bateman Horne Center. The PEM questionnaire was originally developed for clinical use by Bateman Horne Center providers and was used in a...
"Thastum et al. developed a treatment strategy in chronic post-concussion syndrome applying the idea of negative illness perception and maladaptive illness behaviour intended to break the vicious circles of excessive rest due to fatigue by gradually changing attitudes and slowly increasing...
Background
Fatigue is a highly prevalent and debilitating symptom among patients in the chronic phase of aneurysmal subarachnoid haemorrhage (aSAH) with no identified effective treatment. Cognitive therapy has been shown to have moderate effects on fatigue. Delineating the coping strategies used...
BACKGROUND:
There is limited information on what acute factors predict more long-term symptoms from COVID-19.
OBJECTIVE:
Our objective was to conduct an exploratory factor analysis of self-reported symptoms at two time points of Long COVID-19.
METHODS:
Data from patients with Long COVID-19...
BACKGROUND:
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating chronic illness that impacts pediatric populations.
OBJECTIVE:
The current study aimed to better understand adult perceptions of their experiences leading up to their diagnosis of ME/CFS.
METHOD:
Patients...
From Chris Ponting on Twitter.
"Free to use: UK #LongCovid proposal (£3m). Fell at final hurdle last week. Co-production, PPI, genetic ancestry, recovery… We’d like to freecycle genetics aspects w/ researchers worldwide. Do get in touch!"
Abstract
Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) is the RNA virus responsible for the coronavirus disease 2019 (COVID-19) pandemic. Although SARS-CoV-2 was reported to alter several cellular pathways, its impact on DNA integrity and the mechanisms involved remain unknown...
Trial By Error: GET/CBT Ideologues Revive 1991 Oxford Criteria as Core Definition for Long Covid Research
"The Collaborative on Fatigue Following Infection, or COFFI, was formed in 2015 to promote the theories and treatment approaches embodied in the now-discredited and arguably fraudulent PACE...
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