Erin M
@ErinAPN1
Audaciously committed to hope. Mum of severe Long Covid Kiddo. From Journo to law. https://bsky.app/profile/erinmg.bsky.social
Nick’s recovery dependent on PRIVATE medical help…..
“We didn’t even see his eyes for over a year.” “It was like dealing with someone almost in a coma.” Clip from Channel 4 News: Nick Benton (@BentonNick18437) and his family on life with severe #MECFS — as the government finally releases its delivery plan.
This will happen again and again until the NHS & medical institutions learn about #MECFS #LongCovid and other energy limiting conditions. In 2022, a CAMHS psychologist told me I was causing Anna's illness by my own "anxiety". That's quite a powerful weapon I apparently wield!
Clip Sarah Boothby on todays BBC Breakfast segment on the UK government's new #MECFS Delivery Plan “I was accused of fabricating Maeve’s symptoms right up to the point in which she died. Two days before she died, we were subject to safeguarding investigations.”
Too Many Of Us Are Dying I see people protesting the rights of many marginalized groups and important issues. I see people up in arms over injustices faced by people all around the world…BUT WE ARE DYING. Not to mention suffering endlessly from symptoms that are often only…
For the next few weeks I’ll share stories from my photo project about #MECFS Before Hillary became ill she was an entrepreneur, running companies, sponsoring motor racing, making music and living a full life. Updates on exhibition & book: tinyurl.com/58khuv8z #MEAwareness
My daughter died from ME. This new plan fails her and others like her. thetimes.com/uk/healthcare/…
Fixed it for you‼️‼️
Covid-19 cases per million people, 2020 - 2025
The Final Delivery Plan for ME/CFS has been released today. The full report was shared with some organisations and media outlets late yesterday. We’re waiting for it to go online. A short 🧵with some thoughts… (1/)
I can point to tests that show the profound physiological nature of my child’s illness. So could the clinicians who tried to take her away from us. But still they tried, at great cost to my daughter, and our family. We are a pattern, not an anomaly. There is unthinkable…
Clip Sarah Boothby on todays BBC Breakfast segment on the UK government's new #MECFS Delivery Plan “I was accused of fabricating Maeve’s symptoms right up to the point in which she died. Two days before she died, we were subject to safeguarding investigations.”
“I honestly just did not realise that it was possible, in the UK in 2025, to be as sick as my husband is & for there to be basically no specialist NHS services to provide any kind of support” Our co-founder @KarenLHargrave on Radio 4 WATO 👇 (Recording via @ABrokenBattery)
This 'plan' changes nothing for my 18 yo daughter who is bedridden & tube-fed or the many others with severe / very severe #MyalgicEncephalomyelitis. Bottom line: No funding and some warm words after decades of neglect of #pwME. We need an NHS and parliamentarians #ThereForME
June 30 + 22… 🥳 I’m hugely relieved that DHSC is apparently publishing the Final Delivery Plan today. But it’s contemptuous that it is only being released as the long Summer Recess starts, depriving MPs of the opportunity for proper scrutiny. tinyurl.com/5zf6h89p
I’ve spent 3 years photographing people with #MECFS, a condition I’ve lived with since 1987. 50 people. Invisible & incurable illness. The work shows at Oxo Tower in September. Updates & book info here: tinyurl.com/58khuv8z #InvisibleIllness #PhotographyForChange
"The whole system comes at you with such speed and velocity..." It sure does. When you ask (education, healthcare, social care) for help but instead they close ranks, do a 180, and point the finger of blame directly at you. It's intimidating and terrifying. #longcovidkids
Really grateful to @GMB for bringing this issue to the fore. I hope @RCPCHtweets will now discuss with Professor Andy Bilson, Professor Luke Clements, Dr Fiona Gullon-Scott, Cathie Long and @emilydugan amongst many others. Time for change 🙏💜
There is nothing in it for any of us to lie when we tell you that Long COVID is real, post-COVID vaccine injury is real, and that Long COVID existed before the vaccine did. We come from all political walks of life, there is no cure, treatment, or management of our symptoms.…
‼️ CHRONIC LYME IN WSJ TODAY: “Frankly, our work has shown that it’s real,” said Dr. John Aucott, dir of the Johns Hopkins Lyme Disease Clinical Research Center, who has studied the condition for two decades. “What we’re trying to do is measure everything [in our study on…
We took part in #FileOn4Investigates by @matthewhillbbc in 2017. Isla was v keen for her story to be told to help spread awareness of ME & FII. Our part is about 22 mins in. We hoped things would improve after this, 7 yrs later Isla died. #FundThePlan #ME bbc.co.uk/sounds/play/b0…
“We have a number of studies underway trying to figure out which form of [SARS-CoV-2] persistence might be occurring in some patients,” said Dr. Amy Proal. These include: 1. Inert RNA persistence 2. Active translation of viral proteins 3. Active replication of virions,…