public affairs @PensionBee | cofounder @goodmoneygirl | Pensions Doctor @Telegraph | #money journalist | author #ESG | lately, #longcovid #longcovidkids

South East, England
Joined December 2008
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 🥳
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📻 Full interview with Dr Binita Kane on BBC Radio 5 Excellent discussion on ME & @BethDobbin that looks at: 🔹why ME has been dismissed 🔹 why it's seen as psychological 🔹 the sickest patients have no NHS care.
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Rebecca O'Connor retweeted
That toxic combination of Covid and EBV. Another athlete, another life, devastated. Not even touted as a mystery this time. Will people try harder to reduce Covid risk because of this front page article which did actually mention Covid? bbc.co.uk/sport/athletics/ar…
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Rebecca O'Connor retweeted
My son's 12th bday(ME & #LongCovid),we'll go out for 2 hrs & then he'll have to rest Because he's excited for presents, he'll crash for dys after his bday ME=The disease where kids get punished by their bodies for excitement/big feelings cause they use up too much energy! #pwME
My son developed #LongCovid and #MyalgicEncephalomyelitis at age 7. He is now 11 He doesn't remember what his body felt like when it was healthy. @HSELive, please help our children; provide services for #pwME & #LongCovid now @DrMaireadDB @brownecfm @MEAdvocatesIre @TomKindlon
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Godspeed to these people, who are doing vital, truly potentially lifesaving work (and may it translate into work across the pond, too)
A subset of people diagnosed with severe psychiatric illnesses may actually have immune-mediated brain diseases. Properly diagnosing and effectively treating these patients is an important area of discovery in the mental health space. I had a deeply interesting and informative time visiting researchers at the National Institute of Mental Health yesterday, who are working on cutting-edge approaches to that issue and many more.
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Rebecca O'Connor retweeted
Replying to @brownecfm
Most people including doctors would do well to read this 2026 WHO/Europe campaign against the myths on long COVID... who.int/europe/event/myth-bu…
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Rebecca O'Connor retweeted
That is as daft as saying Nick or indeed MPs should be paid with a benefits card because their pay is taxpayer money. Claimants are legally entitled to the money the DWP provides and once transferred it is theirs as much as wages.
It's not their money. It's taxpayer money. It's quite nice to hear these things said aloud again...
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This is excellent
I wrote about The Telegraph’s ableist piece deriding so-called “Sickfluencers”. I examine the state's interest in discrediting the growing wave of newly-disabled young people as the state continues to deny the long term harms of repeated COVID infections. thegauntlet.news/p/covid-not…
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Rebecca O'Connor retweeted
Only 3% of #employers surveyed said they had hired young people with a “mental health condition or cognitive impairment”, while just 4% reported hiring young people with a “physical health condition or impairment”. And here is your problem. #Disability #NEET #employment
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Shocking BBC headline. There’s no doubt that some of this is caused by PANS PANDAS. My Son had sudden onset of most of these symptoms but still most Drs and hospitals have never heard of PP. It’s a tragedy for these families and young people. bbc.co.uk/news/articles/cn5d…
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Rebecca O'Connor retweeted
How many of these are being screened for #PANS #PANDAS ?l/Likely none!
Children as young as six going to A&E in mental health crisis bbc.co.uk/news/articles/cn5d… Difficult to comprehend a 6-year old in crisis necessitating needing hospital. Also: "some of those in emotional crisis become aggressive or have challenging behaviour"
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Gosh I know so many people who need to better understand this, sadly
Stop shaming ambulatory wheelchair users. Many disabilities make it difficult to walk or stand for long periods of time, and a wheelchair is an accessibility tool. It’s a way to conserve energy and protect the body. It doesn’t make a person any “less” disabled.
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Rebecca O'Connor retweeted
A huge part of my parenting philosophy is understanding that children literally do not have the cognition of adults. And I think a lot of parents lose their fucking minds because they forget that. They expect a 4 year old to think through a situation the way a 35 year old would. They assume that because a child technically “knows” a rule, they should be able to remember it in the moment, override an impulse, regulate their emotions, think about the future consequence, and then make the rational choice. That is a lot of cognition. And little kiddos simply do not have all of that online yet. So parents start assigning adult motives to developmentally immature behavior. They call it disrespectful, manipulative, selfish, lazy, defiant, or whatever. Sometimes it is just a tiny person with poor impulse control doing exactly what tiny people with poor impulse control do. Your child is not a miniature adult who is inexplicably bad at being an adult. They literally do not have the capacity to do adult thinking yet. And I’m not saying kids should have no boundaries or consequences. Obviously not. I’m probably stricter than a lot of people in that regard. But there is a massive difference between teaching a child the skills they are developing and becoming enraged because they do not already possess them. The other major part of my parenting philosophy is that we cannot control other human beings. That includes our children. We can guide them. We can teach them. We can set boundaries. We can create consequences. We can tell them what behavior is acceptable in our home and what is not. We can remove ourselves, remove privileges, or change the environment when a boundary is crossed. What we cannot do is make another human being obey us. And I think a lot of really ugly parenting comes from refusing to accept that fact. The parent decides the child must comply, and once compliance becomes the goal at all costs, coercion starts getting justified. Yelling, humiliation, intimidation, hitting, fear, whatever it takes to force the behavior they want. I fundamentally reject that. I do not think having more power than another human gives you the right to harm them into submission. And being their parent does not somehow make that less true. My job is to raise a person who can eventually govern himself, not a person who behaves only because someone bigger than him might punish him. Children need structure. They need limits. They need parents who are willing to say no and mean it. But they are still separate human beings with their own minds, temperaments, emotions, and eventually their own values. I can influence that. I can shape the environment. I can teach. I can model. I can hold boundaries. I cannot own another person’s will. And I think parenting gets a lot healthier once you stop confusing guidance with control.
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People with ME/CFS often face disbelief, stigma, and psychologization. Research has shown this creates epistemic injustice, meaning patients aren’t trusted as knowers of their own illness. A new philosophy paper argues the harm goes even further. Persistent disbelief also damages patients’ emotional lives through affective injustice (emotional harm from social power (doctor, patient) imbalances). Key patterns include: - Emotional responses minimized or silenced - Pressure to “think positive” or push through, even when it harms - Valid feelings (grief, anger, fear) pathologized as anxiety or poor coping, or gaslit as “all in your head” - Stereotypes pressuring patients to be “good” (optimistic, compliant) or risk being labeled difficult/militant - Extra emotional labor: constantly explaining, managing others’ reactions, or packaging suffering to seem “acceptable” These aren’t just personal frustrations; they’re patterned by medical and social power imbalances. They deepen isolation, self-doubt, and barriers to care. Justice means the right to be ill without disbelief or having to dress up your feelings for others’ comfort. Care should not demand emotional performances of “deservingness.” If this resonates with you, please share. For more content like this, follow us here: braininflcollab.substack.com… Read more: link.springer.com/article/10…
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Rebecca O'Connor retweeted
25% of #ME patients are bedbound, can’t walk and can’t take care of themselves. 75% are mostly housebound and can’t work. Most struggle with socialising. Scientists say #MECFS has been triggered in about half of #LongCovid cases. No treatment no cure. #MyalgicEncephalomyelitis
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Rebecca O'Connor retweeted
🚨 Huge that @NYMag did a story on PANS. UNBELIEVABLE that the medical community remains “skeptical” about a serious, life-altering neurological condition that affects way more than 12,000 kids per year & leaves entire families battered in its wake. For the uninitiated, PANS is Pediatric Acute-onset Neuropsychiatric Syndrome. It looks like a switch flipped inside a child’s brain…suddenly…often during/after an infection like strep, Bartonella, lyme, Covid, sometimes triggered/complicated by exposure to neurotoxic mold. What it looks like is terrifying behavioral changes; rage, OCD, refusing to eat most foods, suicidal ideation, refusing to go to school, screaming at family members, crippling anxiety, depression, lost interest in all the things they loved. These kids are almost always described as happy, healthy, good students, social before PANS. Are these skeptical doctors suspect about diabetes? Cancer? HIV? What is it about seeing something THAT YOU DON’T UNDERSTAND that makes you dismissive? Medical “beliefs” don’t often = biological reality; they are compatible with incuriousity and dogma. PANS, Chronic Lyme, toxic mold illness—these aren’t religions. Your “belief” doesn’t change the fact that they are real. And to you skeptical MDs, let me tell you from personal experience…these issues will eventually touch your own life and it’s better to be informed before it happens. I’ve seen this again & again over the years. Infections (not just strep!) & mold/toxins largely drive PANS, in my experience of hearing from endless numbers of these families over the years and interviewing MDs/ scientists about it. @StevePhillipsMD & I covered many cases & presented the science (there’s a lot!) in our book, CHRONIC. These kids deserve compassion, an excellent eval to find the cause, and treatment. Sometimes the cause is multifactorial.
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Rebecca O'Connor retweeted
The immune systems of people with long Covid may remain locked in a prolonged battle with remnants of the coronavirus, producing inflammation while failing to effectively eliminate its source, new research suggests. bloomberg.com/news/articles/…
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This article thetimes.com/comment/columni… would deservedly prompt a letter to the editor from @ISLCPAIS to inform readers that covid infections cause chronic symptoms that map onto the author’s observations. Psychosomatic arguments can’t be allowed to seep into the spaces left 1/2
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by a lack of public awareness and education of the biological reality - as backed by science - of what the virus does to young bodies, long term. Also, these issues affect males too. And non LGBTQ+. The consequences of this uninformed view going unchallenged are profound 2/2
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Rebecca O'Connor retweeted
The public has NO IDEA about SarsCov2, Covid and Long Covid. If the information is not on the TV news or news websites or in their newspaper it doesn’t exist for them. People don’t Google any of it. When you tell them things they ignore because it’s not in the news they see.
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