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Oh. Dammit :banghead:

Absolutely..I have already sent most of it to my MP previously. Please use it wherever you can totally shout as loudly as possible I have been advised that we need to add: 2025 2nd Prevention of Future Deaths order following inquest of SJ Lewis And that the Delivery Plan says it will make...

Thank you @Trish I am as stumped as you; we seem to continually be banging out head against a brick wall. We are all taking all the actions we can and yet, still drowning.

Yes. This. I fundamentally disagree with the placatory approach being taken on this. We have had: 2002 The chief medical officer's working group report on CFS/M.E. 2006 The “Gibson report” Inquiry into the status of status of CFS / ME and ME and research into causes and treatment treatment...

Yes. Exactly this.

As the comments under the Pulse article demonstrate, no one cares. There is no shaming people who just aren't bothered. That the MP in charge didn't notice that they put out a press release without actually publishing the plan, and had to be told by another MP, and that this is the absolute...

Exactly this..I cannot understand how we keep reverting to the same thing, no matter how many times we demonstrate it is both unhelpful and unsuitable.

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?