Invisible Illness A History, from Hysteria to Long Covid, 2026, Mendenhall (book)

[hotblack]

But I agree that pulling things apart and trying to poke holes in things is the only way forward.

Agree and while I very much appreciate some the kind comments but that’s all I’m doing. From bed with an iPad and nothing more than a GCSE in biology. The science is sometimes an escape for me too tbh.

It’s tragic that those who should be supporting us aren’t but it is great so many patients are doing things, in whatever way they can, however they feel they can and in whatever field they can. It’s all useful be it research, advocacy, politics, media, etc. While I agree science will eventually be the big breakthrough, we need people working on all fronts, because whatever improvements we can get will help us until the next one comes along.

 

[Kitty]

From bed with an iPad

I've been very impressed with your ability to take this stuff in – and @forestglip's of course – but that really is impressive.

After decades of working on desktops / laptops and making heavy use of keyboard commands (I date back to DOS), I still find iOS bafflingly clunky. I can just about work out how to use a website to generate sheet music on an iPad, but if I need to do anything on my phone beyond texting or photos, I almost always have to look it up. Despite having used iPhones since 2011.

 

[JellyBabyKid]

Partially because too many in the advocacy orgs seem to be too preoccupied with babble to communicate clearly on our behalf.

I also set up ME Local Network, which has 32 local support group members, and is part of the DHSC Delivery Plan task and finish group, and I (with members of our local group) regularly meet with our MP, and I write a lot of emails and consultation responses. Mostly on benefits, but also on the need for research funding.

It made me realise that we need more research with authority on our side to explain the reality of lived experience as well.

Edit to add missing words

 

[Utsikt]

I also set up ME Local Network, which has 32 local support group members, and is part of the DHSC Delivery Plan task and finish group, and I (with members of our local group) regularly meet with our MP, and I write a lot of emails and consultation responses. Mostly on benefits, but also on the need for research funding.

It made me realise that we need more research with authority on our side to explain the reality of lived experience as well.

I fully agree that we need more comprehensive descriptions of what it is like to live with ME/CFS.

Most of the social science attempts at describing the lived experiences trie to shoehorn whatever the patients say into their preferred model, or they don’t differentiate between observations and interpretations (so we end up with loads of unfounded statements about this or that being wrong biologically).

I think it’s a terribly difficult task, and it would probably take someone that’s completely disillusioned with their own field to be able to accomplish it.

We see the same thing right now with the rehab people on the biomed side that keep getting things wrong because they insist on looking at ME/CFS through a rehab lense. Or the biomed memes that never die. So it’s not unique to the social sciences.