The Guardian: I gave up hope of a cure for my chronic condition. And it’s made me happier than ever before

Oh my God! Thanks, @Trish.

 

I can't even commit showing up for a doctors appointment, let alone a chronic illness.

 

This is a very good point. There is a huge issue in giving such space to someone as if they can speak for those who are in a worse situation. Everyone has a right to deal with their own life psychologically in a way that works for them at that situation in time. To translate that to advice on 'the illness' and particularly to those with a different severity which from a symptom and critical point of view is almost a different world would be apalling on the other hand

I don't blame the writer, but I do think the newspaper and other publishers know what they are doing and if not need to give themselves a shake - would they publish something on someone who had a mild cancer which someone had great support with and they could still continue part of their life for without massive caveats and being very sure people understood those who have stage 4 were in a very different boat? I also agree that this is being used as marketing/propaganda, whether it was written as such. And in that way would affect public getting behind where funding is put - and the need for finding treatments being heavily prioritised and firmly moved out of the hands of 'therapists' doing things that will never present any significant usefulness even if they weren't flawed.

I do think we are missing organisations putting out straightforward education underlining frankly, objectively and in a two-minute read (with diagrams or whatever helps) what the illness is and what the different severities/stages mean - underlining facts like if someone is in a crash it is serious and you need to follow their instruction etc.

These basics need to be in boxes that must appear with every article to underline this given the state of knowledge (instead of fuzzy 'mights and ifs' to account for 'the variation' it needs to be specifics to underline the range and emphasis how bad it can be)

We can build on this from there with flim-flam like this (on basis it is very downstream and personal to your own situation introspection only worthy of being read if people understand the basics, and I don't believe that Guardian published this to be read only by those with ME who already understand their condition), or with political history of why on earth we have very severe people being treated as shockingly as they are (because people need to be convinced of how horrible a condition it is before reading who and why it happened). But people do not read further than 2-minutes, and the basics need to be done first as a building block. How we then make them news I don't know - but it is. We are all speaking a different language until we get laypersons on the same page of understanding what the condition is and the name actually represents re: the range of severities and needs.

 

I think it's a stretch to assume this is part of a coordinated campaign to manufacture consent for ACT. KKH has been critical of bad research in ME previously, so unless he's done a full 180, I can't see it.

It's vaguely possible that a Guardian editor got the idea to write about acceptance from a PR person with an agenda (or the SMC), and then reached out to KKH, but that doesn't quite fit the pattern.

E.g., the SMC would offer their own experts, and would push for that over suggesting an editor commission a wildcard like a person with ME. We know that's their modus operandi, because it puts them in control.

And most PRs who pitch story ideas do so because they have something to sell. The story is just the avenue for getting free coverage. So they would have a client who's just written a new book, say, which also happens to address the issue or solve the problem for the reasonable price of £9.99...

It seems more likely that KKH pitched the article, the editor responded with a counterproposal that fit into their current plans, and then they mutually agreed upon the final subject to be written.

Then there's the editing process itself, which probably stripped out anything that seemed like a tangent or a distraction, and therefore resulted in even less nuance, in order to stick to a wordcount and rigid topic.