Connie’s

05/10/2026

October is Dysautonomia Awareness Month!

Dysautonomia is an umbrella term for conditions where the body’s automatic systems, like heart rate, blood pressure, temperature control, and digestion, don’t regulate as they should.

For people with hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD), this is especially common. Many experience dizziness, fainting, fast heart rate when standing, “brain fog,” and stomach or bowel issues.

People with EDS and HSD can experience several forms of orthostatic intolerance (symptoms that happen when upright and improve when lying down). The three most common are:
1️⃣ Postural Orthostatic Tachycardia Syndrome (PoTS) – when standing causes the heart rate to jump by at least 30 beats per minute (or 40 in teens), bringing symptoms like dizziness, palpitations, or fatigue.
2️⃣ Orthostatic Intolerance (OI) – similar symptoms when upright, sometimes without dramatic heart rate or blood pressure changes.
3️⃣ Orthostatic Hypotension (OH) – a significant drop in blood pressure within a few minutes of standing, which can lead to light-headedness or even fainting.

This month we’ll be sharing posts on how it affects the gut, and what management and treatment options look like. Learn more here: https://www.ehlers-danlos.org/info.../autonomic-dysfunction/

05/10/2026

Fatigue is such a devastating symptom of ME/CFS, yet it is profoundly misunderstood. ME/CFS-related fatigue is not everyday tiredness, nor is it normal fatigue experienced by healthy people. It is a crushing symptom that weighs individuals down and can be felt throughout the entire body.

We are deeply grateful for the insights shared through our recent Symptom Saturday survey, and have drawn together some of the common themes about the experience of fatigue: https://tinyurl.com/fatigueimpactME

Whilst it is not possible to feature every response in a single article, every single account is vital. They help shape future biomedical publications, convey the realities of ME/CFS to researchers, supporters, and the public, and guide our internal organisational education.

27/09/2026

Scientists discovered a surprising energy paradox in the brain during REM sleep, the stage most closely associated with dreaming. Blood supply to the brain begins increasing even before REM starts, but neurons’ immediately available energy, measured as ATP, then drops. The finding suggests that dr...

22/09/2026

Remember a loved one

14/09/2026

"I wanted to raise money because I know how important better support and specialist care is for people with Parkinson's."

Chester resident Anna, 59, recently took part in Walk for Parkinson’s in Wrexham, helping to raise vital funds for our Nurse Appeal.

"The condition isn't always well understood, and many people can feel like they're managing on their own. I also think it's vital to raise awareness so more people understand the experiences of people living with Parkinson's. I'd encourage anyone who can to come along and take part.

"I try to keep myself busy and active, and I'm determined to stay positive and not let Parkinson's define me.

"Sometimes our plans have to change, with shorter walks or earlier evenings, but my family are always understanding and supportive. I feel very fortunate to have them."

A huge thank you to Anna, and all of our walkers, for taking part and helping raise vital funds for Parkinson’s nurses and specialists.

14/09/2026

WAMES (The Welsh Association for ME/CFS Support) are hosting a webinar in which Swansea Bay Health Board’s Adferiad Service will be talking about how their service can support people with ME/CFS to self-manage.

Register online here: https://tinyurl.com/4ejcpra4

14/09/2026

Dare we say it??? There are 14 weeks until Christmas and our Advent calendars and Christmas cards are selling well.

Snap yours up today at any of our charity shops, you can find your nearest here. www.severnhospice.org.uk/support-us/our-shops/ or buy yours online.

Send the gift of care to your friends and families this Christmas, spread some festive cheer and support the care we provide year round.

14/09/2026

14/09/2026