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The cult of “rigorous scientific evidence” strikes again…

100% this. It happens. It is happening.

<consciously uncouples from body due to repeated poor behaviour> Yeah that feels better. I just need to find a sci-fi film type jar of goop for my brain to live in, balance that on top of my robot hoover and off I go!

I get this after having a few nights of reduced REM sleep. You needed to sleep.

People don’t disbelieve ME/CFS because it’s invisible. They don’t believe what they can see isn’t something else. What it actually looks like “but you can do it sometimes” or “might just be depression” or “you’re an attention seeker” or “you’ve got lazy” or “you’ll be ok if you just….” Because...

Frankly, unless somebody comes along and says we have a VS patient who is actually in fact sat up in bed eating Egg and Chips every day, I’m inclined to believe the info that they are being mistreated at times. Even if they’re not being mistreated all the time. And if Sonya Choudhury is making...

If using cyclazine to tolerate feeding is necessary that’s a big old problem

I assume each ICB has a similar set of documents. I was wondering whether this could be a way for some advocacy groups to push on certain ICBs where there are pwME in hospital currently (thinking of Karen in Hastings and Savannah in Lewisham)

I just had my 20 year-versary

Yeah I am not set up for those at this moment in time sorry, I’ll come back to you when I’ve got it sorted

Here are some I made with a meme generator

I do need to put them somewhere, I don’t like Pinterest but I forget why. I don’t want. 2 instas. Lots are nicked from chronic illness humour.

What I don’t have…technical ability

This is just a random idea but it’s “quick and dirty” one I was able to deploy once in the past. I collect memes about ME in a folder. I can put together a collection of them in minutes. It can give an overview of the challenges we face, the things which affect us, the unseen and unheard...

Linked slightly to our discussions about the BACME guide to managing ME Oct 25 I was perusing my local ICB for something else and found a document which explains they don’t commission any inpatient beds for ME/CFS. Which we already knew; nowhere does. What I did find interesting is this...

It is! Thank you!

I saw a blog promoted on socials the other day by Tom Kindlon, but I can’t find it now. Anyway it was an OT who explained that pacing is “harm reduction” (or should be) that it’s not compatible with real life to expect you can do it brilliantly but each bit of pacing you do well reduces the...

I think Kate got into debt paying for care, but was highlighting that many people wouldn’t have even the option of taking on that much debt. Which was a fair point for her to make.

The usual suspects have terribly high sickness - HMRC and DWP. Mental health was the most common reason. By grade the lower and higher grades had higher sickness, by region London had lowest. “Civil servants” includes the person working at the job centre, the person writing to you because you...

May their memory be a blessing