Search results

I have had confirmation that yes, this is the case, and that as of April 2025 they will be taking over responsibility for our local Long Covid clinic as the NHS will be stepping back. Not sure if this is nationally? Lead Psychologist Jayne Woodcock is apparently former BACME as is keen on the...

I think it is going to take a lot more than a letter. I am aware that there are various conversations going on about this, and I am being necessarily vague in that. The problem is, as I understand it, is that it requires trying to change an idealogy and that BACME completely believe that they...

Sorry to be That Person but it is MELN = ME Local Network ME Local Network (MELN) is a national network of local support groups of people living with ME/CFS (and carers). We aim to strengthen the relationship between national charities, organisations and local groups, to ensure that the...

:laugh: brilliant

On a related note, the government's benefits green paper of two years ago used the words "trust" and "rebuilding trust" something like 17 times. Clearly they have completely abandoned that idea :rolleyes: Those with power do seem to get the arrow of causation the wrong way round, as raised...

MS society response, which is saying what I have been saying about the government's rhetoric for a while: looking at the wrong things...

I listened to the episode of the Newsagents podcast https://www.globalplayer.com/podcasts/episodes/7Dri7Jv/ with Hannah Barnes, who wrote the book about it, and thought much the same. You could have swapped GIDS for the word ME as they were saying exactly the same things. Frighteningly so.

https://www.disabilityrightsuk.org/news/disability-poverty-campaign-group-statement-modernising-support-independent-living-health-and Excellent statement on Disability Rights UK's website

I agree, but I can't stand by and do nothing, as the stress this causes is overwhelming, and at least I will have put my comments in writing for future reference purposes - mostly mine.

That's really helpful. Thanks @Kitty I am planning to write a response, but have a serious lack of capacity, and it feels totally pointless after the WCA Consultation, which they published their response to 23 days after it closed - which I broke myself trying to respond to along with the DHSC...

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 !