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Action Alert! Tell your Senators to VOTE NO on proposed 57% cut to Research Programs
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Details:
Introduction
Long COVID is a life-limiting condition that affects 65 million people worldwide. It devastates lives with uncertain illness trajectories, and yet, there are many research uncertainties as there is a lack of understanding of its causes, effective treatments and management plans. We...
“I feel like a ghost.” How included to children and young people with chronic conditions feel in their education, and what can we learn from their lived experiences?
As a parent of a young person with ME/CFS, as well as a special education teacher, I bring these two aspects of my identity...
Hello,
As part of my psychology Masters at Oxford Brookes University I'm conducting research into the motivations for complementary and alternative medicine use in those with chronic illness. One of the subcategories I'm particularly looking at are those with ME/CFS.
If you're a UK resident...
Link
Medford MA, February 22, 2024 – PolyBio Research Foundation, a global collaboration convening the world’s leading chronic disease scientists, today announced the second phase of its LongCovid Research Consortium (LCRC), including the distribution of $15M to fund scientific research...
Hi everybody, I finally have the ethics in place to begin recruiting for our recently funded Mason Foundation study.
ICC criteria. Healthy controls and pwME in VIC, Australia. Involves some questionaires and a blood and feces collection. We will home visit severely affected people.
Primary...
There's a new program that will pay folks who have found errors in scientific papers.
I immediately thought of this forum, and all the smart folks here who have found errors! So I thought I'd share it here.
I heard about it on this Science Friday segment (about the last 2 minutes)...
NYC To Study Long-Term Outcomes of COVID-19 Among New Yorkers
https://www.nyc.gov/site/doh/about/press/pr2024/nyc-to-study-long-term-outcomes-of-covid-19.page
The Department of Health and Mental Hygiene is launching a multi-year research study of long-term outcomes among adults infected with...
Muscle Abnormalities Contribute to Post-Exertional Malaise in Long COVID
A poster presentation of the very soon to be published work by Rob Wüsts team has been uploaded to Twitter.
Paper now published, see post #8
by Ong, et al in Innov Aging.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10714916/pdf/igad070.pdf
Five weeks of positive affect training vs a control group of reporting emotions. 43 in each group, mostly female, older than 50, 80% white.
Internet training modules: identifying personal...
Effect of the subjective intensity of fatigue and interoception on perceptual regulation and performance during sustained physical activity
Aaron Greenhouse-Tucknott ,
Jake B. Butterworth,
James G. Wrightson,
Neil A. Harrison,
Jeanne Dekerle
Abstract
Background
The subjective experience of...
Reduced diversity and altered composition of the gut microbiome in individuals with myalgic encephalomyelitis/chronic fatigue syndrome
Abstract
Background
Gastrointestinal disturbances are among symptoms commonly reported by individuals diagnosed with myalgic encephalomyelitis/chronic fatigue...
Developing, optimising and implementing a blended digital self-management tReatmEnt for FatigUe in multiplE scLerosis (REFUEL-MS)
https://fundingawards.nihr.ac.uk/award/NIHR203290
https://www.refuel-ms.com/
Chief Investigator(s):
Professor Rona Moss-Morris
Co-investigators
Start Date...
biopsychosocial model
cbt
cognitive behavioral model
digital therapeutics
fatigue
funding
get
kcl
london
moss-morris
multiple sclerosis
nihr
refuel-ms study
researchresearch methodology
uk clinics
A thread to collate studies and reports on the historical (or current) level of ME/CFS research funding in the UK. I'm primarily interested in public funding, but reports and studies on charity funding can also be included here.
I'll start with the UberResearch/Action for ME report from 2016.
Long COVID: The impact on language and cognition
Louise Cummings
Abstract
COVID-19 continues to have profound health and economic consequences around the world. Aside from the large number of deaths from this viral infection, there is a growing population of individuals who have not made a good...
Paywalled Financial Times link
Source blogs (first 2 published entries of 4) —
[109] Data Falsificada (Part 1): "Clusterfake"
[110] Data Falsificada (Part 2): "My Class Year Is Harvard"
New thread created by collecting posts from a number of other threads
If someone's in a listening mood, there's no transcript. 30 minutes with the NIH Recover initiative lead:
Direct link: https://www.nejm.org/action/showMediaPlayer?doi=10.1056/NEJMdo006435&aid=10.1056/NEJMe2201619&area=.
"Our foundation supports nationally and internationally recognized research projects, non-profit organizations to support those affected and charity projects to combat diseases such as myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) and related diseases.
"We can build on a network...
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