Profile avatar
cfsresearch.bsky.social
Interested in research into ME/CFS/MECFS, FND and related conditions. https://medium.com/@cfs_research
448 posts 443 followers 77 following
Regular Contributor
Active Commenter
Posts 11 Comments 39

Is the "New Brunswick Neurological Syndrome of Unknown Cause" actually a new disease? The data out strongly suggest NO. We must carefully study and share data on clusters of 'unknown' cases, and especially those cases that draw intense attention from the media. Examine and use pathology.

submitted 3 days ago • 1 comment

A suspected deadly, undiagnosed neurological illness that has afflicted hundreds across New Brunswick and other provinces may not be a new disease, but rather a collection of misdiagnosed, known ailments, a new study published Wednesday suggests.

submitted 5 days ago • 2 comments

1) A new publication from the Dutch Lifelines cohort estimated how disorders such as ME/CFS aggregate in families. For ME/CFS, the variation attributable to familial effects was 42% which is substantial.

submitted 9 days ago • 1 comment

1) Another interesting study Gemma Samms and Chris Ponting. They looked closely at data on ME/CFS in the UK biobank and found that some of these may not be very reliable.

submitted 12 days ago • 1 comment

Some people do not fully recover from an acute viral infection and experience persistent symptoms or incomplete recovery for months or even years. This is not unique to the SARS-CoV-2 virus and history shows that post-viral conditions like post COVID-19 condition, referred to as LC, are not new 1/7

submitted 19 days ago • 8 comments

1) This study argues that the heart rate threshold for an active standing test should be lowered because it is less sensitive and diagnoses less patients with POTS than tilt table testing. I think this reasoning is flawed.

submitted 17 days ago • 1 comment

Multidisciplinary collaborative guidance on the assessment and treatment of patients with Long COVID: A compendium statement onlinelibrary.wiley.com/doi/epdf/10....

submitted 19 days ago • 0 comments

Paul Garner has posted his full long covid recovery story: www.ive-recovered.com/recovery-sto...

submitted 19 days ago • 2 comments

Today for #ToolkitTuesday: a new website called Partnering Pain! Built by people with pain FOR people with pain, this website is full of top tips, including a ‘flare up panic button’ if you ever need it. Visit www.partneringpain.co.uk

submitted 27 days ago • 0 comments

Wearable heart rate variability monitoring identifies autonomic dysfunction and thresholds for post-exertional malaise in Long COVID www.medrxiv.org/content/10.1...

submitted 28 days ago • 1 comment

1. Something I’ve noticed as I’ve progressed in my recovery: I can now do way more physically. But try to repeat it two days in a row? I crash. Hard. Could my nervous system still need recovery time, even when my muscles and energy feel fine? 🧵

submitted 31 days ago • 1 comment