Ever wonder why most of the media provide wall-to-wall coverage of everything the far right does or says, while ignoring far bigger rallies and events and far more interesting discussions elsewhere on the political spectrum?
There's no mystery. It's because they want the far right to triumph.
Gas skyrocketing, bombs dropping, our standing in the world in tatters, taxpayer dollars up in flames — meanwhile this oligarch dictator wanna-be brags about his new ballroom and the “Corinthian” columns
How is every American not sickened by this?
Gutted to be back, and despite my levels being over double that of medical emergency cut off, I avoided getting help for hours because I didn’t want to come back in.
But alas, there wasn’t much choice in the end. I’m back in my usual room, usual ward, usual staff❤️
I’ve been back in hospital for 11days now, I’m wiped out and have had some really scary moments, but mum has been with me for a lot of them and stayed over when needed.
Stabilised a little🤞🏼 a lot of PEM though.
1/2
Thinking of you lots xxx
Thank you so much Steve this means such a lot to me. I really hope you can come up with something! But don’t burn yourself out x
Struggling if I’m honest😔 how about you? x
It really does. Thinking of you both x
Thank you so much Steve. Gosh I hope so!
Since I saw your post Lizzy & Tom's @tomkindlon.bsky.social I keep thinking what a desperate personal situation pwME find themselves in, which is part of a much bigger institutional & political picture, which callously chooses to discard & ignore them. 🤨
💙🙌🏽 so needed. Humbled and proud to see this.
#bethechangeyouwishtoseeintheworld
#thereforME #fundtheplan #MyalgicEncephalomyelitis
"Those with ME have experienced years of being treated unjustly. Sometimes, it feels endless and irreversible. But remember this: getting things done in parliament starts with having MPs on your side." Tessa Munt MP. New #ThereForME Substack post.
We're delighted to share today's #ThereForME blog from friend of the campaign @tessamunt.bsky.social.
In her blog, Tessa lays out the case for change and how to get involved.
Link in next post 👇
A big thanks to @tessamunt.bsky.social for being our latest guest author! 🙌
From @tessamunt.bsky.social, making the case for an almost extinct type of politician that would hear, believe and take action when faced with one of the biggest institutional injustices in 50y.
Hard to believe for #pwME, but she is living proof they exist 👏
www.thereforme.uk/p/the-case-f...
17yrs ago yesterday I got sick, and, I didn’t get better.
I was 14, healthy, active (as you can see bottom left, 3rd down on right, and mid-left are all pre illness).
Everything has been stripped away bit by bit, no matter what I’ve tried.
But, we make the most of whatever we have, however we can
Well put it this way, they’ve admitted it’s 5 or less, which is frankly shockingly bad in itself. Grateful to those 1-5 people. But when you think how many MPs, assistants, civil servants, etc etc there are, it’s appallingly low.
So 40-50 individuals have taken the module on managing SevereME.
This is heartbreaking. How on earth are things going to change? It should be mandatory.
Huge HUGE thank you to those people who HAVE engaged, you can make a difference.
@wesstreeting.bsky.social
Hundreds of thousands of #pwME & #LC have been forced to live at the very edge of their suffering, their pain & their courage because a few powerful people chose to abandon their professional responsibilities, their morals & their humanity.
#ME #BPSCabal #MedEd #MEAwareness
My consultants are talking with my MP today about #SevereME provision etc because many of our situations are so desperate, there is nothing on offer, no guidance for them, no treatments for us.
@wesstreeting It HAS to change.
Funding research, and funding a specialist service will save lives.
New Survey now out: experiences of people with ME and Long Covid with hyperbaric oxygen / oxygen therapy.
Please share widely.
For all the info and survey link, head on over to
www.physiosforme.com/o2survey
Thankyou to lizzy as whilst being poorly herself and in hospital long term … she is fighting the case for better care for people with ME. Thinking of you and hoping for improvement for you soon x
Thank you so much. We will always try xx
all with humour thrown in as always… they’re truly incredible.
Beyond glad for the strong unit.
74th day here, I hope this all makes sense as I’ve written in stages and don’t have energy to read back.
And lastly, Thank YOU too, for your love, support and kindness, it’s priceless. Lizzy x
As always, I’m so thankful to my mum who’s been by my side through so much of this, long days, and my dad, brother, and his partner who have had to see such awful declines, sit in on horrible meetings, help edit and compile emails, and worry about me and help me face the future…
There’s also a push for my parents to meet with the health secretary & with our MP 🤞🏼
Keep writing to your MPs, keep using your voice if you can, this has to change, week on week it’s similar stories, similar situations coming to light across the UK, mainly of young women.
It isn’t ok.
(Alongside discussing my own situation and addressing some of those issues that have arisen).
I feel grateful that they as clinicians are also frustrated and willing to push for better, it feels like a rare thing, but I’m glad that me and my family speaking up is contributing to hopeful change.
be set aside & a real framework guide for clinicians dealing with patients with Severe or Very Severe M.E, (and POTS & EDS patients also) because currently there is no treatments they can offer, and on the risky things they’re left with, there is not enough research evidence behind the efficacy.
My MP @kerrymp.bsky.social has been incredible as always, and her assistant, as has @tessamunt.bsky.social The hospital Chief Exec has arranged to meet with Kerry this week, with my consultants to have a wider discussion about pushing this in parliament for genuine biomedical research money to
I’ve had to face things no one this age should have to face, but face things head on is what I do. Even when it’s terrifying
My consultant also spoke with me 1:1 yesterday on my request. She was so kind, & so upset about the situation I & so many of us are in. To have that compassion meant so much.
