Our latest #ThereForME blog gives an update from a busy few weeks.

Ft. the @libdems.org.uk and @tessamunt.bsky.social!

Link in next post 👇

Sad but unfortunately not surprising from the @bmj.com . They have at least been consistent.

Sometimes despite it all I can still feel lucky. I might not be at the top of the mountain but I can still look at it and appreciate it.

We’re the world's largest genetic study of ME/CFS. We’ll be sharing our findings on here when available, so follow DecodeME to find out more about our study in the meantime, and help our science reach more people in the #MECFS community.
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Good luck Cleo, I hope it’s not too bad.

Thanks Steve, I think perhaps I was a bit naive in my assessment.

The Nurse who assessed me dropped into the conversation that would I be able to make toast. I said theoretically on a good day it would be possible. That meant I could make hot meals apparently. Never mind that good days can be counted on one hand in a year!

Just going by the scores I got in my last PIP assessment. They didn’t seem to take account of any fluctuations. Anything I said I could do on my very best days were written up as my abilities. Total nonsense of course but 🤷‍♂️

Thanks, I’m glad you found an answer, that must be very validating at the very least.

Great stuff David, looking forward to seeing it.

So clear and informative, you guys give me a glimmer of hope in dark times . Thanks for your tireless ( although tiring I’m sure!) advocacy.

I really hope Scotland continues to stand up for the disabled. So far their track record is good - I’m just the other side of the border, or as I know think of it the wrong side of the border.

Thank you I appreciate that. I’m sure I’m far from unique here, there must be thousands more out there in similar situations.

Im unable to sit up for more than a minute.
I completely rely on my wife to cook and prepare food for me.
I am able to shower any more than an average of once every 2 weeks.
Dark room, in bed every day.

I will not qualify for PIP.
I will be expected to look for work.

I am unable to have any lights on.
Conversations have to be short and quiet or I become much worse.
I have been unable to leave the house for 2 years and counting.
I am in pain all my waking hours.
I sleep between 14-16 hours every day.
I’m unable to stand for more than 1 minute.

The Government say that those ‘genuinely in need’ will still be helped.
Well let me paint a picture for you.
As a former Radiographer I became disabled in 2021 after a Covid Vaccine I took to help stop the spread of Covid to vulnerable patients.
I am now in bed 24/7.
I am untableto watch tv

So I won’t qualify for PIP with these new rules despite being bedbound. What do I do now, there’s no way I can work at all. What will happen to me?

In just one irony in a series of ironies today (Long Covid Awareness Day) 4 years ago I had a Covid booster that gave me the gift of ME/CFS and POTS.
I have lost so much including a job I loved working in the NHS.
Solidarity to all those who have been similarly harmed by the Covid Virus.

No, I should have realised that your intention wasn’t what I jumped to. It’s just a difficult place to be, I’ll try to make 2025 a year I don’t jump to conclusions!

Of course this post doesn’t acknowledge ME/CFS related to vaccination is real and the risks of vaccination in people with pre-existing ME/CFS are real, but only responds to the argument used to dismiss infection associated chronic diseases that they are just from vaccination.

Still, Happy New Year.

Thanks Todd, appreciated and acknowledged

And it’s way worse when those people do it.

That’s great, I really hope it’s achievable for you. I live right on the Scottish border so Edinburgh is somewhere I know quite well, it’s a really excellent place to explore. Watch out for all the hills though!

Thank you, I’ll take a look.

Edinburgh is lovely, I hope you manage to see it.

Yes don’t hesitate on that she’s great. I’ve seen a lot of people in the last 4 years and she has been the best by far.

Thanks and all the best to you too. If that’s Dr Claire Taylor I can definitely recommend, she’s great.

Thanks, that’s appreciated. I’m maybe being thin skinned here but I’m just disappointed. Most advocates would caveat a post like this with an acknowledgment of our existence. It’s hard to articulate how this makes me feel. I suppose as a minority I just have to put up with this kind of stuff.

Yep who cares about us? It’s more important to score political points than actually admit we exist. If you think ME is neglected you might not be aware that there is a worse scenario where even ME advocates/patients won’t acknowledge you.