#MEAwarenessDay I've not been on here much lately and that's because my health has been so shit. Mostly bedbound for over a year and a half, along with new weird symptoms yet to be explained. I've dragged myself to various appointments and tests and been trying drugs. Nothing has helped so far.

Can any of you very knowledgeable chronic illness folk help me with an iron dilemma? I have an infusion booked in a few weeks but having doubts. Mainly due to my iron panel results showing a low TIBC. My ferritin is 50 and I have a ton of symptoms. But as I understand it, TIBC should be high?

Hello ME/CFS and Long Covid folk of the UK - does anybody know if Dr Claire Taylor is long-term sick or has stopped her clinic for another reason? I saw her last year and she's been uncontactable since, just the same autoreply for months saying she's recovering from Covid. Anyone know if she's ok?

My life rn, no further comment needed

Late to this piece but this vindicates my refusal to undergo repeat TTT to access meds for POTS. My refusal meant I was discharged from my long-time POTS specialists in London and had to go hunting for a new consultant. The new Dr was happy with an active stand instead.

Do you have a Labour MP? Check if they're going to rebel against the benefit cuts or have spoken out against them 👇 labourlist.org/2025/04/spri...

chng.it/72gqxBsyQw Petition by @richardburgon.bsky.social

I'm not well enough to go to this obv but if anyone reading this is able to then pls do 👇

There is an alternative to the government's cruelty: treat disabled people with care, dignity and respect. My piece for @mirror.co.uk www.mirror.co.uk/news/politic...

Just pressed send on my PIP application, two months of preparation and gruelling mental effort, evidence gathering and waking up in the night panicking that I've done it all wrong... just in time for Liz Kendall to announce the cuts 🙃 ahahaha I hate this country

“I reached out to leading clinicians and some of the scientists who dedicate their time and energy, despite pitiful funding, to researching #ME #LongCovid etc I invited them to kindly share a ‘red leaf’ with us. They did not disappoint!” Inspiring 💗

Listen to disabled people - you might be surprised by some of the punitive policies that keep us in legislated poverty. Most people think if things get really tough I will “get a second job, moonlight, sell some stuff etc” Those options are OFF the table if disabled. There’s no contingency./3

Your chances of being able bodied your entire life are slim to none. It’s always in your best interest to advocate for a more accessible world.

For anyone who needs to hear this today. "What I most want is for all of those who are in those dark rooms and in pain and struggling to access nutrition and so very alone- to feel our love. We are sending it to you every day." Thread. #PwME #SevereME #MyalgicEncephalomyelitis #LongCovid

Happy Solstice all ☀️ Last year I made a Solstice altar with holly from my garden and lit a candle. This year, I'm too ill to do the same. So I'm just thinking about the return of the Sun and, from my bed, watching the blustery winds outside blow in the new celestial year. 🌬

Millions of men, women and children all over the world are desperate for a treatment or cure for a disease that has robbed them of their lives. Please support the work of the Open Medicine Foundation (www.omf.ngo) as they search for the cause and a cure. #MyalgicEncephalomyelitis #mecfs

As Gaie's MP I tried everything I could to challenge this decision to send her back to prison - including writing to the prisons minister Lord Timpson and the probation service. But they would not budge a millimetre. 🧵... www.channel4.com/news/77-year...

👇 Dragged myself to the GP today for the below. She dx'd gastritis as I had epigastric tenderness on exam. She wants me to take PPIs but I'm very wary given this clusterfuck all started when I was on an acid reducer (famotidine).

Is it conceivable for PEM to start five days after an inciting event? Or is that too long. I think I'm noticing this but can't be sure. Is it also possible for PEM to have a dual onset e.g. feeling rough the next day, then rallying a bit, then rough again but worse? #MECFS #NEISvoid

One of the cruellest parts of this illness is not being able to tolerate emotion. So I can't even process my current decline, grieve or cry without my body reacting with inflammation and exhaustion.

Over 2+ years of working on a biography of Elon Musk, I've learned that his ambitions are significantly grander than anyone realizes. He wants to be the first trillionaire ever. He wants to be the most famous human who ever lived. He wants to rule the world. He wants to live forever. All literally.

Sadly a pipe dream for many if not most #ME sufferers. Too many will be alone and uncared for as friends and relatives drop away over the years. We are too difficult to love.

If you’re applying for PIP, the charity Turn2Us has launched The PIP Tool: a free guide to navigate the benefits process. Their goal “is to make sure you know your rights and can afford what you need to enjoy life fully.” Share widely! pip.turn2us.org.uk

Throwing this out there just in case the #ChronicIllness #NEISvoid community has any ideas: My latest deterioration, starting end of Sept, has coincided with a tight band sensation around my upper torso, just under the ribcage. I feel it all the way round - front and back. 1/n

We urge #Ch4Dispatches to rectify their mistakes and address our concerns in a follow-up program. See our joint open letter of complaint to @ofcom.bsky.social https://buff.ly/3ZkoIPs @inclusionbarnet.bsky.social

Bought some new electrolytes to try for #POTS - never seen this brand before but liked the look of it as you can buy a version with no flavours, sweeteners etc.

Hey #MCAS folk who take quercetin, how do you deal with its effects on iron absorption? I supplement iron due to long standing low ferritin, and started trialling quercetin but have stopped after reading that it's so potent an inhibitor of iron absorption that it can treat *high* ferritin! :/

UK Freeports are one of the most sinister developments. There is so much going on in the world, it's easy to scroll on by. But, I would suggest we all need to read the attached.

2/ You already know wealth is unequal but did you know how unequal? On official figures, the top tenth own half of everything The bottom three-tenths? They own 1% of all the wealth between them

Private equity is a horror story for the NHS – one fifth of budget goes to it. Privatised services treat 10% of patients, 3% in 2011. 59,000 private contracts in the NHS. 30%-40% of money vanishes in profits, longer queues persist. End privatisation. www.thecanary.co/uk/analysis/...

👇 What Kelly said. This is exactly what I thought would happen but no less depressing for that.

Good thread.

While we're on the subject, it's also the case with EDS experts. At my last appointment, my rheumatologist recommended GET. 🙃

For my autism screening, I had to take this test (among many) & it was exhausting. I knew I struggled with reading eye expressions, but I had no idea HOW MUCH. I took a little over 10 minutes (and I was trying to 'hurry'). Allistic average=less than 3 minutes. embrace-autism.com/reading-the-...

Awesome thread 👏 I just want to add to this point that the same is true for testing. I'm currently in a difficult position where my fatigue and PEM won't allow me to travel for specialist POTS-related testing in a different city. And this is affecting my care.

This is really getting quite remarkable • BlueSky user numbers have doubled in the past week and now total 3.5 million across US & UK 🚀 • Number of people deleting their X/Twitter account remains way up And the next chart is particularly notable...

I've had around 4 hours of sleep, been awake since 5ish and I have to head out in the snow for a 9am cortisol blood test, pray for me 😬 #POTS

Bluesky tip for newbies: Bluesky has no real algorithm. Likes here do nothing but show the poster that you enjoyed their content. That kindness is always going to be appreciated by creators, but if you want to help to boost something here, you have to repost it so others see it. 🙂

I'm pretty sure my POTS cardiologist understands PEM and gets that not everyone with dysautonomia can exercise. He's given me that impression anyway. But that's definitely a rarity among POTS specialists in my experience.

Anyone use a Garmin watch for chronic illness pacing? If so is your body battery / stress chart just a wall of orange with hardly any blue even overnight? Mine is - and all I do atm is rest in bed. 😐 Considering getting rid bc it's so depressing.

Complex chronic illness + medical trauma + NHS strategy of 'one size fits all' for routine procedures = a fucking disaster. It doesn't have to be this way. What if health professionals asked 'What can we do to make this procedure accessible for you?'

Say what you like about the NHS, but at least it's honest about itself

❌ Highlighter pen ✅ Octopus of Importance

Made a new account here for my music: @amyclaromusic.bsky.social A replacement for my music Xitter account which I will soon be deactivating. Not much I can share on there yet apart from old work, but maybe that'll change. It's in the Lap of the Gods (as Queen would sing).

If you see a lot of folks replying to posts with a 📌 emoji it’s because they’re using this feed. It’s essentially a bookmark! Reply with the emoji and it pulls the post into your own private feed and saves it there for you! Here:

Interesting article. I'm a cis woman, 46, and perimenopausal. I'm very lucky that I have an excellent GP who put me on HRT as soon as I asked. I'm also one of the ones who finally made enough effort to get my ADHD diagnosed in perimenopause. Some factors they've missed from his list:

A million times this. It's not enough to just be the guy who doesn't say this stuff. You need to be the guy who calls out other men and boys for saying it.

I did a little experiment with this earlier. I recorded two videos of me playing/singing from my sofa, with a lying-down rest of ~30mins between them. The 1st video was ok but contained mistakes. The 2nd video I show very noticeable signs of fatigue and the performance is dull and listless.