Dysautonomia Awareness Month
Throughout October, ME Research UK marked Dysautonomia Awareness Month. Dysautonomia is an umbrella term for conditions that affect the autonomic nervous system, of which there are many, such as postural orthostatic tachycardia syndrome (PoTS), orthostatic intolerance and vasovagal syncope. Individuals with ME/CFS often report debilitating dysautonomia-related symptoms, which add an extra layer of challenge to daily life. As part of Dysautonomia Awareness Month, ME Research UK also marked PoTS Awareness Day.
Best Poster Award – Jelle Huijts
Many congratulations to Jelle Huijts who was awarded the Best Poster Award at the prestigious International Union of Physiological Sciences (IUPS) conference in September this year. Jelle presented his work on skeletal muscle alterations in patients with ME/CFS and long COVID, which is part of an ME Research UK-funded project led by Dr Rob Wüst at Vrije University Amsterdam.
Update from Daphne Jackson Fellow – Dr Alkisti Manousaki
ME Research UK has received an update from Dr Alkisti Manousaki, who was awarded a Daphne Jackson Fellowship at the University of Leicester, for a project – jointly funded by ME Research UK and the Medical Research Council – investigating the genetic and cellular clues that may explain why ME/CFS affects more women than men.
Articles
Mast cell activation syndrome and ME/CFS
Mast cell activation syndrome (MCAS) is a condition, which can co-occur with ME/CFS, where mast cells (usually quite helpful immune cells) work against individuals by producing too many chemicals like histamine (which contributes to inflammation). MCAS has many symptoms and many triggers, such as stress, caffeine, certain foods, and exercise.
Orthostatic intolerance and ME/CFS
We could not go through Dysautonomia Awareness Month without mentioning orthostatic intolerance – a common issue for people with ME/CFS – where the body fails to properly compensate for moving to an upright position, which can result in various symptoms. A subset of those with orthostatic intolerance also meet the criteria for PoTS.
Small fibre neuropathy and ME/CFS
Small fibre neuropathy (SFN), a type of peripheral neuropathy where damage occurs to small nerve fibres, is characterised by severe pain typically beginning in the extremities. Whilst it is a lesser-known entity and therefore requires a greater scientific evidence base, research suggests that SFN occurs more frequently in ME/CFS and certain other conditions associated with dysautonomia than in the general population.
Other topics explored in October include Ehler’s Danlos syndromes (EDS), gut disorders and dysautonomia, Westminster debate on PoTS, specialised care for people with severe or very severe ME/CFS, NHS Freedom of Information requests, and development of a blood-based ME/CFS biomarker.
Big Give Christmas Challenge – Get ready!
Thanks to our wonderful supporters, ME Research UK has a Pledge Pot of £19,100 available to match-fund donations received during the Big Give Christmas Challenge which runs from 2nd to 9th December 2025. Updates to follow before December’s event!
Cardiff Marathon – Thank you Brind Family
We want to say thank you to the Brind family – Clarissa, Charles, David, Mark, and Jamie – who ran the Cardiff Half Marathon 2025 to raise funds for ME Research UK. The Brind family’s incredible effort reminds us of what’s possible when people come together.
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Christmas cards
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