Dress for ME Charity Challenge

Would anyone like to #BTSDressForME for charity? I wanted to do something fun & heartfelt for Jins return. So I will be dressing as RJ @BT21_ for the day! If anyone loves my crazy idea to express my love & pure joy for Jins return please join me!💜🫰🏻#WelcomeBackJin #BTSFesta #BTS

We've known that post-exertional malaise is correlated with reduction in cerebral blood flow (CBF) for many years. We think cerebral hypo-perfusion may account for some of the signs and symptoms we observe. However, measuring CBF takes expensive equipment. 1/n

📢 APPG on ME The APPG is opening an enquiry into Severe ME next Wednesday. 📆 Wed 10 Sept | ⏰ 4pm Template in next post to ask your MP to attend 👇

🔬Most people think mast cells are only involved in allergies or rare conditions like MCAS or mastocytosis. That’s incorrect. Research shows mast cells are active in many diseases, including neurodegenerative, autoimmune, infectious, heart, gut, and mental health conditions🧵

1) 🇨🇦 In a new ME/CFS study, the research team of Alain Moreau reports that haptoglobin (Hp) might be a potential biomarker of PEM severity and cognitive impairment. Its main function is to bind free hemoglobin that is released after the breakdown of red blood cells.

@KSchnickelfritz @Naomi_D_Harvey @ClrBlwrs Also PFAS forever chemicals. These are not filtered out of water and now in everyone. youtu.be/SC2eSujzrUY?si…

@Naomi_D_Harvey @ClrBlwrs And all the household products designed to kill germs and keep things clean. Fire retardants, stain protectors, windows sealing it all in.

Mitochondria only come from your mother, so I want to know what went wrong My great grandmother born 1901, Durham miner's daughter, had 11 children and worked really hard, was often the sole earner, lived to 92 (when I was a teenager).

@1goodtern Covid is very damaging to the placenta. It’s heartbreaking that this is largely ignored and I think the public are unaware of the risks of covid to pregnant women and their babies and think of covid like a cold, even it’s not. pmc.ncbi.nlm.nih.gov/articles/PMC10…

And, yeah, they all break my heart, but this one especially. I wouldn't wish a pregnancy related disorder on anyone. Just look at that increase. 💔😢

I hope someone somewhere is looking into this. Days of sickness absence taken each month by doctors in England for Pregnancy Related Disorders.

1) In a new preview video, Dr. Yarred Younger from the University of Alabama says he found evidence that ME/CFS patients have more microglia cell activation in their brains than healthy controls. His theory is that chronic brain inflammation is driving symptoms in ME/CFS.

Ignored, blamed, and sometimes left to die – a leading expert in ME explains the origins of a modern medical scandal #pwME #MEcfs #DecodeME theconversation.com/ignored-blamed…

@1goodtern @alanbarnard1 @H_S_E @PrivateEyeNews I remember channel 4 news did an investigation early in the pandemic and a lot of the equipment was out of date. So the foam seals and rubber straps may have been compromised. But that’s from memory.

@alanbarnard1 @H_S_E Totally totally untrue that the UK didn't have enough FFP3. There were massive stockpiles held back during the early stages of the pandemic, because they were *saving them for a flu pandemic*. I know it sounds ridiculous, but it's true. Go look it up, @PrivateEyeNews

Here's another Covid scandal that is just starting to emerge into the public domain from today's Private Eye. I think this will turn into a big one. (And it's not a good look for the @H_S_E either.)

Why hasn't @BBCNews covered the groundbreaking findings of the @DecodeMEstudy? Does the health editor @BBCHughPym not consider the story newsworthy? Reminder: M.E. affects at least 400,000 people in the UK alone. #BBCNews #MECFS #MyalgicEncephalomyelitis decodeme.org.uk/initial-dna-re…

Two days ago, we released our initial genetic results! Want to learn more about our findings? Have questions for our management team? Register for our genetic results webinar now: shorturl.at/RywTZ There will be a recording available afterwards on our  website.

#SevereMEDay Not another one. Nothing has changed. #FundThePlan #ME @wesstreeting @AshleyDalton_MP

@sunsopeningband The sad thing is this cycle has been running 50 yrs now 1969 ME designated a neurological disease 1970 psychiatry “hysteria!” The question is why is decades of biological research is consistently ignored and unprovable psych theories go unquestioned 🤔 drive.google.com/file/d/1qAGTsA…

Sometimes ME research feels like an endless cycle of saying “NOW finally we have proof to show this is ‘real’” over and over—all the while, people are still sick and needing help.

What if your body couldn’t bear light, sound, movement — or even touch? Today, #SevereMEDay, we ask you to imagine living that way not just for a day… but for years. For people living with Very Severe ME, this isn’t a metaphor — it’s reality. 🧵

Mortality in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): an updated analysis of memorial records Results The average age of death was 52.5 years (SD = 16.7). Most individuals were female (73.0%) and resided in North America (68.9%). The tandfonline.com/doi/full/10.10…

9) These 8 DNA variants occur in 13%-60% of the general population. So it’s not that these determine if you have ME/CFS or not! Instead, they should be seen as clues or pointers to what's really going wrong.

70 years ago an outbreak occurred at the Royal Free hospital. They named it: Myalgic (= muscle pain) Encephalomyelitis (= brain and spinal cord inflammation) ME for short or #MECFS Did they get it right? Two recent results suggest they did 🧵

The #DecodeME study is terrific - a milestone in biomedical science. But headlines like “ME is real” are not good journalism. ME was already scientifically established by the mid-1990s. And clinical evidence has supported its reality since the 1950s. So why do we get these headlines? Because in UK health journalism, “getting the facts” often means repeating what a GP mate told you over lunch, rather than reading the research and checking the facts. These headlines aren’t just lazy. They echo the distortions that stalled ME research in the first place. Instead, journalists need to dig into the history of ME denial. A history of inappropriate psychologisation of ME to service not patients but psychiatry - a profession in existential crisis. You wouldn’t write “human-influenced climate change is real” in 2025. Don’t do it with ME. #pwME

I can completely understand that people will put credibility into different types of scientific evidence, but in response to many headlines and news reports I’m reading, I have to say we’ve had objective of evidence of PEM—the hallmark of myalgic encephalomyelitis—for 25 years.