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Is it just me that finds this deeply concerning?

I am getting this a lot when i first get up lately. Also new.

Same!!!

Yes! This is new; I have suddenly (last 6mths) started to feel like I am getting a cold when PEM -ish, but it never comes to anything. I have had chronic, awful rhinitis ever since my ME got worse almost a decade ago. Like someone else said, I go through boxes and boxes of tissues and tin...

"Please be assured that our advisors have decades of experience supporting patients with a range of needs and severity, shaping clinical best practice, and delivering world- class research that has had a huge impact in their respective areas" Yes, but mostly not in ways the patients have...

That's my fear. A damp squib at best. possibly not even any better or further forward than the CMO report in 2002. I am starting to seriously despair.

I have variously been asked; surely you have a consultant? A support worker? A personal assistant? A therapist? Etc... Er...only if I pay for the last two, at very great cost. Which is what PIP is for.

I haven't seen it, but it has taken 3 years, had 3 delays, has no planned publication date, no firm commitments and no funding

:hug: hugs of support and solidarity @Trish I think we are all running out of beans for this never ending, multiple fronted battle :dead:

Thank you for continuing to pursue this @Trish I am extremely concerned about things with the MEA and the choices they are making and how shut out patients are being, particularly in light of the delivery plan being even more of a disaster than we could have anticipated and the benefits stuff...

We are through the looking glass at this point. What's that saying about taking the plank out of your own eye before pointing out the speck in someone else's.... I think irony just died

I find this situation deeply disturbing, and seems to be gathering momentum as more and more things come to light what is going on with them?

Oh, what the...? With friends like these...

Same. And it invariably leads to me using energy I don't have writing angry emails, because I feel so very powerless. I emailed my MP after the vote last night

Nope. they have made such a Horlicks of this that I don't believe anything they say, and that they won't change their minds again. Or have made such a hash of it that they have opened the door for a certain party who think the NHS and welfare should be run on insurance schemes The whole mess has...

And yet was once considered a fairly competent head of the Work and Pensions select committee?:emoji_thinking: Make it make sense please...:emoji_face_palm:

Ah! I have looked into this. A key piece of PRT evidence is "Do your symptoms come and go and do they move around to different places" if so, this means they are neuroplastic, according to this theory (I listened Alan Gordon's audiobook) This means they don't need evidence; you create it...

Which is why they are so determined to stick to their guns on this? Plus they have already spent the savings, apparently. Which won't be as big as they think, given they are just moving the costs around, including to local government emergency funds. The longer goes on, the more it becomes...

Number of Labour rebels passes 120 & Sir Sadiq Khan has come out in support. https://www.theguardian.com/world/2025/jun/24/keir-starmer-says-government-will-stand-firm-on-disability-welfare-overhaul I don't think Starmer is helping himself by insisting there is a moral case for cuts, when his...