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Scotland's new version of PIP, Adult Disability Benefit, just began. I hope it's as good as it sounds. https://www.bbc.co.uk/news/uk-scotland-62712288

I only know about Scotland, sorry to the other UK nations. But there are a couple of other ways you can get a council tax discount if you have a disability, low income, or second adult who's not a partner. CAB explain it better than i ever could here...

But doesn't this contradict another foi where they said they should release the data, but couldn't because no-one knew how to access it anymore due to retirements... If they are still writing papers, then someone must be able to access the data. I'm sorry i forget which foi this related, but i...

I had an operation at the end of last year and the pain team gave me ketamine. It was wonderful for pain relief but did nothing for my ME. It made me feel very spaced. One afternoon i realised i'd spent the last 3 or 4 hours just watching the clouds, transfixed, and completely unaware of the...

I've just read that the devolved Scottish disability benefit (Adult Disability Payment) is almost ready to be launched, and will be phased in from the end of March, replacing PIP and DLA. It looks like a great improvement, but we'll see... More info here...

Thanks for your answer @Andy appreciate you taking the time to let me know. Really excited for this study. Kx

Hi, i'm not sure if this has been covered already, but i couldn't find anything in the FAQs, so thought i'd ask here in case anyone knows. If something serious, other than ME is found on someone's sample, will they be notified of this so they can get the relevant medical treatment / preventative...

Is it just me or do they sound confused about the underlying premise of GET/CBT being fear avoidance to deconditioning model. They say a couple times they don't know why people are rejecting GET/CBT because of this model, when they make no mention of fear avoidance in their guideline about it...

That Reddit Post broke my heart and brought back so many painful memories and emotions. This needs to stop. I've had ME for nearly 25 years, and you sort of get used to always feeling incredibly unwell, and find ways to cope and make the most of things. But I do remember at the start how...

If only NICE had recorded or broadcast the RT, that could have put an end to the nonsense and shown these people for what they are...

I don't have the brain space to do this, but for those interested in the legal angles going forwards it might be worth collecting and saving quotes from those saying they were not doing GET anyway. As that means they were a) not upfront with patients about what treatment they were offering, if...

i think it's up!

I had depression added to my file as the main problem without my knowledge by my so called ME specialist. He did tell me he thought i had depression, and when i said that i wasn't in the slightest depressed or even sad (I've always been blessed with a fairly cheery disposition despite...

You joke but my sleepy brain seems to recall a fad on breathing properly that folks were randomly recommending (good old unsolicited advice) to me about 5 years ago? I remember watching a YouTube video and apparently we all do breathing wrong... Wish i could remember more, i'm sure we could all...

I would simply say that: the problem isn't that it's a psychological diagnosis for ME, the problem is that it's the wrong diagnosis. That's all.

I understand it's better for the specialist services to remain open and hopefully adapt in terms of infrastructure etc. The thing i find really hard though, is that these places are full of so many memories of traumatic moments and encounters with so called specialists. (Some of whom were just...

Sorry if this has already been suggested, i'm super foggy at the moment. But even just asking GP's to tell their ME/CFS patients about it. I know there are some horrific medical profesionals out there, but there are also some good ones who just want to do something for their patients but don't...

I would say the situation in Scotland is fairly mixed, although the statement certainly helped. And hopefully the new NICE guidline will as well even if we don't always strictly follow NICE, it's still fairly influential. In my experience it seems if the healthcare professional knows someone...

Ha ha. I might be willing to suck up the BPS nonsense if i got to do it in a sauna having just had a facial... ;) It would certainly beat the awful hospital or doctors surgeries.

Hi, don't know if this helps, but you can listen to most BBC radio (live and ondemand) from anywhere in the world. Radio doesn't have the same geographical restrictions bbc tv does. Kx