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The green paper and PIP consultation are out. Is it ok to post it here? DWP consultation: Modernising support for independent living: the health and disability green paper https://www.gov.uk/government/consultations/modernising-support-for-independent-living-the-health-and-disability-green-paper

This. :mad:

This too. We are far better informed then the so called specialists. A little humility might be helpful here. As Michael J Fox said, along the lines of listen to the patients they are the experts as they live with the condition. And these patients READ!!

This is the bit I really have a problem with. I do a LOT to learn about my issues, whatever they might be, and do the best I can to improve. I might not do it perfectly, but I ask questions and get curious, listen to feedback, take action and learn. This is the bare minimum we should expect...

Hi @Aaron Love the idea of these billboards! I might be able to help you with a template email. Feel free to message me directly and we can talk about what you are looking for.

I saw the thread title and came here to say the exact same thing. What is it with so called experts being unable to just say "we don't know" and then maybe prepare for all options....?!

This. I find it completely unfathomable. I also cannot understand the blatant and glaring contradiction between dismissing us when we say your questionnaires are unhelpful but when we produce surveys saying this intervention has caused harm, that can be completely dismissed as anecdotal...

Haven't they made this part if it though? They make us unreliable narrators to our own experiences and try to convince us that the fact we don't know what's good for us is part of the false beliefs they tell us we have. My understanding is that they think we have had some kind of psychosis...

We've got one! https://thesciencebit.net/

In all honesty, I don't have a plan. Yet. At present it is just thinking, defining the problem, asking some questions and gathering information. Oh. This has got me thinking...Thanks @Trish !

I would add to this: Tainted blood Vaginal mesh AIDS Hillsborough Post Office Tavistock Clinic? There is a culture of disbelief and patient / victim blaming with those harmed having to prove the injustice perpetrated against them and pursue reparation - but how many have died in the...

A more serious version of my earlier post to join the dots I currently see: Culture of disbelief (Govt & healthcare): only see through the lens of their own experience Not counting Long Covid and dismissing it as anxiety Dismissing rise of anxiety & depression as the "normal stresses of life"...

This post has been copied from UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023 _________________ A more serious version of my earlier post to join the dots I currently see: Culture of disbelief (Govt & healthcare): only see...

Oh. I see! Apologies, totally misunderstood the question(s). If i have understood correctly, we want to find out: • is there any kind of centrally held list of pwSevereME who have been/are currently in hospital? • Is anyone keeping a note of number of pwme being diagnosed with FND? how do we...

FowardME is a discussion forum for various ME groups, as opposed to any kind of coalition with staff to take any action. While we would all assume that they are best placed to take this on, they are not actually an action group. What might be helpful would be to get Not Recovered (the...

This topic has been split from UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023 Ah. Yes. I was going more with slight of hand; 3 card monty Don't look over here while we stop counting Long Covid and rename it anxiety - which is...

I was also starting to think that there are a number of strands that seem to be knitting together, so I am grateful for someone else saying it out loud. I appreciate knowing it is not just me that is seeing a rather alarming picture starting to come into focus. Not helped by the charities not...

This is really well summarised; they are attempting to rehab people with an ongoing, untreated illness. Where else would this happen? How is is this situation allowed to persist? Why is there no professional curiosity as to how well their management strategies work long term? Why no yellow...

This is utterly unforgivable and is the exact opposite of the hippocratic oath. The mental gymnastics that they must have to go through to get to the point where they are ok with this, let alone perpetuating it and thinking they are doing any kind of good. And yet we have faulty thinking? When...

I respectfully disagree. TW: I started to hyperventilate when I was turning blue and pretty much dying with pneumonia and double pleurisy 16 years ago, and the switch in my brain that says "you can breath normally now" never switched back on. I proceeded to over breathe for five years, until I...