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Anyone else get a sign up page when trying to access Jo's blog? Is it now private? https://www.healthcarehubris.com

Thank you..I appreciate that This experience is exactly why people do not want to get involved in advocacy though, as there is always somebody waiting to tell you how whatever you are doing is wrong. It is extremely disheartenening No good deed ever goes unpunished

Thank you If you are being forced to spend pip on food then clearly universal credit is insufficient to cover your basic needs? Agree..I have specific health related dietary additional costs The output will hopefully provide trends to be able to demonstrate to the minister how utterly...

I have shared this article and these comments with the project group as I helped create the survey Calling people taking action useful idiots is deeply unsupportive and has probably undermined what we are trying to do to help the community push back against these cuts, as people probably won't...

This is an interesting idea. Frustrating that the research just isn't happening.

I was wondering if there was less of a gap in the ratio between sexes now that autism prevalence in women is getting recognised and diagnosed so that perhaps it doesn't skew as strongly male as much as it use to be thought to.

Is it though, or is it an historical massive under diagnosis in women?

Yes. This.Thank you for elucidating this so clearly. I have had someone say to me that I am pathologising normal experiences, whereas actually what I'm trying to do is this, to seek out diagnoses to make sense of my experiences and symptoms and figure out how to manage them - especially with a...

As someone currently on several years long waiting lists for a very late diagnosis for autism and ADHD, I strongly suspect that my developing ME/CFS after experiencing life threatening health issues and a life time of depression, has a lot to do with living without diagnoses and spending a...

I completely understand your perspective on this. We have been screwed too many times. I will do my best to bring the pwME perspective to how the results are used and our lobbying.

There is an option to say "none of these would help" There are some reasonable suggestions of things that we don't seem to have been able to get so far, and might help those with long covid or mild ME who might be able to do a limited amount of work, but one option is "biomedical treatment"...

It has been designed to give us support to lobby MPs urgently about just how unfeasible these cuts are, how much they just are not listening and how impacted pwME and pwLC will actually be. It was a joint project with pwME and pwLC involved. It is impossible to get the questions "right" and...

I am glad it helped..it helped me to be involved in the project. It all feels really tough right now. Hugs all round folks :hug:

I have been involved in this on behalf of MELN (ME Local Groups Network) along with Long Covid Support and #ThereForME New survey: Help inform welfare benefits reform The UK government is proposing changes to welfare benefits that could have a serious impact on people living with Long Covid...

LBC are running a story today about there potentially being more benefits cuts in the autumn statement https://www.lbc.co.uk/politics/uk-politics/rachel-reeves-more-benefit-cuts-autumn-budget/ "Government sources say the welfare bill – which is still predicted to balloon – is far more of an...

Thanks all..I didn't even get a care assessment; I called them (twice) and got told not their problem and fobbed off onto a social prescriber, who randomly called me with no prior arrangement every month for six months and then told me that my referral had expired. The enablement team then came...

Social care told me by phone that if I could shower and wipe my bum I wasn't their problem, so I have had to pay for a carer out of my PIP as I need a healthy adult for a bunch of stuff I just can't do.

@Suffolkres Apologies, I was unable to attend as I had an appointment. I hope you found it useful.

@Suffolkres MELN's next meeting is on Friday 4th April. if you email our admin on melocalnetwork@gmail.com they can send you a copy of the agenda and joining details. any problems, DM me Look forward to seeing you there! ETA: >>It's been a while since MELN was set up (in part via AfME?) No...

12.30pm Tuesday 18th Liz Kendall will give her speech. The Green paper will be published as soon as she stands up.