Lizzy

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! 🙌

The case for change for people with ME — and how to get involved A guest post from Tessa Munt MP

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.

Ok so, update after an incredibly tough week (& months!) which I’m not ready to go into.
IV fluids have been reinstated.

My consultant(s) have been really good this week, particularly one, who came in from home during sudden personal leave to see me with mum, with another consultant.

But I will never stop trying

Way to go, Philadelphia! The city has introduced new legislation putting real limits on ICE activity. Federal agents will no longer be allowed to operate anonymously no masks, visible identification required, and arrests must be backed by warrants signed by a federal judge.

A little armored one / turtle rabbit in the wild

The word armadillo is borrowed from Spanish and simply means “little armored one.” But an even better word for an armadillo, in my opinion, is the Nahuatl ayotochtli. It means “turtle rabbit.”

Literally this!

Labour blocking Andy Burnham running for MP is one of the biggest mistakes they’ll make in terms of improvement in the country, and the chance at winning a future election.

Holding onto power while preventing change for good is not where it’s at.

UK loses measles elimination status Decision made after outbreaks in 2024, when there were nearly 3,000 cases in England and Wales.

The UK has lost its measles elimination status, the World Health Organization has announced.

Vaccine disinformation is a worldwide pandemic that is killing us.