Rebecca O'Connor

Happy New Year! And so excited to kick things off with some personal news. I start today as director of public affairs at @pensionbee. Couldn't be happier and just can't wait to get going 🥳

How Covid impacted a healthy teenage boy, from Chelsea Barton-Ellab (chelseaschaos) on TikTok: “For those who didn’t believe COVID was real..here is my very healthy and active 15 year old...”.

Lotte has lived with #LongCOVID for 6 years. At her worst she spent 22 hrs a day in bed and was unable to hold a conversation. She worries about her future as the Dutch government doesn’t treat it as a priority and not enough is being done to help her take part in society again.

@BShapiroMD @awgaffney Reason I’m asking is because in my 26years experience at an academic hospital my experience is the exact opposite. I see lots of patients who have be misdiagnosed - often for years - with “anxiety” or “chronic stress” when they’ve actually got neurocardiovascular dysautonomia 1/

Professor Chris Ponting on the 116 blood molecule differences his team found in people with #MECFS “This is not a psychological disease” people did not alter their blood molecules just to “spook the psychiatrists”. Clip from @hope4mefibroni 2026

Part 2/3: Families of ME/CFS. “You’re only doing as well as your least well child.” ME/CFS is a disease that takes over a home. The noise has to stop. The light has to go. The world has to get very, very small for everyone in it. And families do all of it. Because what else do you do? This is #NotJustFatigue. #mecfs #pwme #longcovid #millionsmissing

We’re starting a video series on the families of people with ME/CFS. This vicious and life altering disease deeply impacts the person living with it, but also everyone in its wake with its potentially extreme symptomology. We’ll hear from different members of the family of people with ME/CFS, and how it’s affects them as well. We deeply believe in a better future for people with ME/CFS, one that includes FDA approved treatments, research funding equity, clinician education, and true understanding from the public. The absence of these things is what allows the endless and extreme suffering, the lack of quality research and advances, the myriad of misdiagnoses, and the lack of belief and empathy from the public. This is what we’re fighting for. This is #NotJustFatigue.

Powerful clip @johnthejack on the BPS model for #MECFS It meant he was “an unreliable witness” to his own body, he could get better if he just changed his thinking and his behaviour. People viewed him differently and the responsibility to recover was put onto him.

It's so heartbreaking to see parents of #pwME speak about the intense suffering their children are forced to live with @wesstreeting @SharonHodgsonMP @tessamunt @DHSCgovuk this cannot continue, urgent, radical change for #pwME is desperately needed. #MEAwareness

I’ve spent the past weeks talking to #ME patients and carers in Wales. There is a spectrum of severity, but there are thousands in dark rooms across the country, unable to walk or talk. Tomos is one of them. Watch/listen/read on BBC Wales news today ⬇️ bbc.co.uk/news/articles/…

The Telegraph: Chronic fatigue [syndrome] left me bed-bound. TMS therapy was a lifeline The Telegraph has published an opinion piece about a personal experience with using transcranial magnetic stimulation (TMS) for the treatment of ME/CFS. Read Dr Charles Shepherd, MEA Hon. Medical Adviser's response on the blog: meassociation.org.uk/or2b #MECFS #pwME #MyalgicE #TMS

For #LongCOVID Awareness Day, we’re calling out the myths. Misconceptions about Long COVID still hinder care. With the EU, WHO/Europe co‑created Long COVID Mythbusters with patients and experts—pairing harmful myths with real stories. 👉 Mythbusters: bit.ly/3O6Ji3X

Tonight our spire is Teal to raise awareness of Long Covid, a multi-systemic disease following a COVID infection, this includes severe, mild, or asymptomatic infections. There are currently no proven treatments or cures for Long COVID. longcovidawareness.life​ #LitForLongCovid

How many people have #LongCovid and is it a ongoing risk? Prof Danny Altman explains 👇 🦠🦠🦠🦠🦠🦠🦠🦠🦠🦠🦠🦠

The Cullen Viaduct is glowing teal for #LongCovidAwarenessDay, helping shine a light on the lasting impact of Long Covid. Thank you to Cullen Christmas Lights and Davie Smith. Across Scotland, landmarks and organisations are lighting up to raise awareness. #LitForLongCovid

“It’s been devastating… it’s capsized my life as a mother.” Jane had to give up her 18yr career to care for her child with #LongCovid MP Jo Platt, who has #LongCovid and #MECFS warns we’ve stopped counting cases so don’t even know the extent of the problem. Clip from ITV News.

Crying happy tears!!!🥹 This is beautiful. I absolutely love it. 😍 #LightUpLongCovid #LongCovidAwareness

incredibly exciting news from @PutrinoLab not by chance the best doctor in the field and one of those linked to patients! #longcovid and hopefully we can try it to #mecfs

Reality: Yvonne has lived with it for 5 years. Long COVID is not just stress or anxiety. See her story: bit.ly/3O6Ji3X #LongCOVID #HealthInformationIntegrity #healthsecurity

#LongCovid is decimating lives of people of all ages, health statuses & ethnicities. It doesn’t discriminate! No one is immune from #Covid and it’s impacts on your Organs, Brain 🧠 and quality of life! This poor young child was 12 when #SARSCov2 took her life & dreams away 💔