New post on my Substack exploring the difficulty I have reading for fun nowadays and how I feel about it.

tinyurl.com/4rnef4s3

Here's last week's Substack (which I forgot to post on here) about what to do if you've recently developed ME. Hope some find it helpful 🙂

tinyurl.com/yf5vjhuj

Hi! I've started a free Substack - The Personal ME - about myalgic encephalomyelitis (ME).

My first post is about my cognitive dysfunction - what it feels like and why explaining it can be maddening:

thepersonalme.substack.com/p/the-day-my...

If you enjoy it, please subscribe!

“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 (@nickbenton.bsky.social ) and his family on life with severe #MECFS — as the government finally releases its delivery plan.

🧵I find it concerning that the authors of the recent BMJ piece on treating severe ME/CFS w/ increased activity avoid mentioning the number of patients who have reported worsening through inappropriate exercise advice or explaining how they propose to prevent this in future.

Today's #ThereForME blog post is from @nickbenton.bsky.social, who has experienced some improvement from Very Severe ME.

He shares his various experiences with health care and talks about the need to be #ThereForME for those too sick to advocate for themselves.

www.thereforme.uk/p/stuck-at-t...

The Rest is Politics podcast posted a questions request earlier today and I asked for their take on the ME Delivery Plan not being funded. It would be great if anyone else who has the energy could ask too. This would give it a fighting chance of being included in the podcast! @thereforme.bsky.social

Dear @rthonwesstreeting.bsky.social & @ashleydaltonmp.bsky.social

My name is Nick and I have ME

I used to work, play football and take countryside walks. Now I cannot do any of those

The Delivery Plan for ME is an opportunity to invest in our future

Please #FundThePlan
@thereforme.bsky.social