Search results

This just seems to be an exercise in frustration for us, frankly. We aren’t kept in touch with what’s happening, there’s no transparency about who gets to make the decisions about this and why they were chosen. Unfortunately, it looks more and more like this review is going to be the whitewash...

How completely, predictably, and despairingly unsurprising….

One of the weird things I noticed right from the start when I got ill was that I could no longer sing along to music as I couldn’t hold my breath for long enough. It’s got better over the last twelve years or so, but I still can’t hold my breath for more than about ten to fifteen seconds, and...

Me too.

Great letter, thanks to everyone for their hard work on this.

Schrödinger’s ME patient - simultaneously to be believed and not believed….

When I had my hip arthritis finally diagnosed about 4 years post ME diagnosis, my GP told me that swimming would be a good idea to help keep my hip muscles flexible and strong to support the joints. In principle, of course, this is sensible advice for someone without ME, but I told him it would...

There’s an interesting quote which caught my eye in the York report, which makes it very much more explicit that GET is considered an essential part of CBT for ME than I’ve seen stated anywhere else. My recollection and general impression was that they were always talked about by the BPS cabal...

Split from NICE ME/CFS guideline - draft published for consultation - 10th November 2020 MEpedia states this on the page about the York Centre for Reviews and Dissemination - looks like Wessely had his sticky fingers all over this, which really shouldn’t surprise us at all... “Professor...

And also, be aware that paper-based applications are taking weeks longer than normal at the moment. If you can renew it online using an existing passport photo or don’t need to update the photo on your existing licence then you should have it back fairly quickly, but if you need to update the...

It’ll be because it’s for income-only based benefits, and neither New Style ESA or PIP are based on income. The first is on your NI contributions and doesn’t take your savings into account, and PIP isn’t means tested and available to people in work too. Most discounts like this are only usually...

Bless you, Barry, thank you. She’s had a rough few years what with one thing and another, and she has some potentially serious health issues to live with on top of the brain injury, but she’s living independently now and is managing to work two days a week at a local stable whose owner is also...

I used to get terrible sensory overload when I was first ill but these days (12 years on) it’s not so bad. It had been helped immeasurably by the gabapentin I was prescribed to help with sleep years ago, which given gabapentin was originally developed as an anti-epileptic drug makes some sense...

I know I’m in for a bad day when I wake up with really gluey, thick saliva that no amount of fluid seems to deal with, though I don’t get the peeing part so much. I also have POTS and am being investigated (very, very slowly, cheers COVID) for possible Sjogren’s Syndrome as well because of...

If you can stand it, you can read that entire article of Wessely’s by registering for free on the journal website. https://www.jstor.org/stable/40966699?read-now=1&seq=1#page_scan_tab_contents You’ll need a strong stomach to manage all the hypocrisy and grandstanding though.

Merged thread Guardian article -“‘I felt betrayed’: how Covid research could help patients living with chronic fatigue syndrome” Pretty decent article in their series about living with invisible pain. Quotes @dave30th amongst others.

And he’s back in the Guardian…. https://www.theguardian.com/commentisfree/2021/jun/10/long-covid-hope-recovery-symptoms?CMP=Share_iOSApp_Other

Interesting topic and fascinating reading everyone’s experiences. I have severe ME and was moderate for the first four years of my illness. I’ve now been ill for 12 years. So, once my meds have kicked in for the day, as long as I do as little as possible I actually don’t feel that unwell. I...

Some more info on the delays to publication, nice bit of detective work here through a FOI request.... I saw it via @dave30th on Facebook, but I couldn’t find it here so thought I’d post it. Apologies if it’s already been shared...

Exactly, @lunarainbows. There is just no way to know what’s going to make people worse as we don’t know what causes our illness(es) in the first place. Sweeping generalisations like this are dangerous, especially for those of us toward the severe to very severe end of the spectrum.