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

Oh gawd. There's people in the Comments praising Graded Exercise. The more I read the Comments the more the article looks like a diversion away from the burning issue of the minute amounts of ME bioresearch funding compared with other disabling diseases, and a diversion from getting CBT/GET/other damaging psychosocial crap out of the NHS. From down here on the hard ground KKH seems to be in an ivory tower.

 

I wonder how it would go if this piece were written with a slightly different perspective, say assault victims in a culture where assaults are so common the police have long stopped trying to do anything about it, and people in this culture were writing about how they have lost hope that law enforcement would ever do their job or that justice will prevail, that people living in this culture who are subject to assaults, and I guess it's OK as long as it's a small %, should just accept that it's how that society works and they should just accept it, suck it up when and after it happens, no matter how much injury it causes because it could always be worse.

Because this is basically an indictment of the medical profession having given up a long time ago, and yet would even a handful of physicians read this with their heads hanging in shame? Vs. how many would read it nodding and being glad the victims of assault are finally understanding their place in society and should just accept that some have to endure a life of constant suffering, no one can do anything about it, especially not the people whose job it is to do exactly that.

It's absurd how low the expectations are out of medicine, to the point where giving up after not even putting a genuine effort is acceptable. There's something fatalistic about our relation to illness, we accept it so easily as normal and expect so little out of the profession that holds a complete monopoly on the issue that failing millions can actually be spun as a positive, with a framing essentially equivalent to accepting such horrors as slavery and saying it's just the way things are, nothing anyone can change about the natural order of things.

 

Triple 'Like' for that last Comment @rvallee

 

I think he's speaking from a personal perspective rather than a social/political one. As individual patients, we may find it healthier, on a day to day level, not to be tied to the rollercoaster of hoping for a treatment that works. I know I do. And that's how I read the article. Advocating for researchers and clinicians to stop caring would be something very different, however. Personally, I don't live in wait of a cure for myself, although there is still some hope that a treatment may be found in my lifetime. But I am very passionate about research and social change because it is the right thing. I think it is possible to be both accepting and hopeful at once and I read the article as discussing just the acceptance side.

Edit - sorry wrote that in a rush having missed a few of the posts on here since I read it this morning. Having had a quick look back, it seems the author has a more complex view of it all than I assumed. So please take this as my own pov rather than a commentary on the author. I clearly need to read more of his previous writing.

 

I find it unforgivable how seemingly easy it would have been for the NHS to have tried these out as relevant and sensible and to have collected logical and non-partisan case studies and data for each of these. By now we would have so many suggestions of what to go on

Instead everyone's truth got rewritten to the point it feels like half of our notes should have an amnesty where they are removed from being 'on our records' (but kept should one need it as evidence of what they were put through/what they caused) with correct descriptions of what actually happened at that time replacing them. How many people had good descriptions of PEM replaced with BPS terms? or other symptoms that were relevant at the time not noted because functional fixedness said 'fatigue=CFS=hypochondria over other bodily symptoms'.

You get the feeling those sent off to do more exercise who returned worse for wear due to it would not have that outcome noted, because of politics - so what on earth use is this as either data or a factual record for the individual that they have to wear for the rest of their lives

 

Anyone smelling the selling of ACT just replacing CBT?

 

Don't apologise, I don't think that you can assume anything is uniquely one or the other - and even if it were those who chose to publish it as it is (or edited it to be that) with have done so because it fit their own needs so politics will be heavily involved/are not separable.

"I am very passionate about research and social change because it is the right thing"

those are the 2 things we don't get and the only 2 things any condition need as fundamental building blocks - without them you are where we are. Some have a few people around them that are good people and get it, others are in a world where everyone else is deluded and thinking you are deluded, and when peed off by the lot given not allowing you to survive then being criticised for not surviving apparently 'sad' ie mental health you need to sort it.

The lack of any decent fair options even in basic support mean he isn't happy because he accepts it, he is happy because those around him do, and accept him. It's nonsense. Those who aren't accepted have a brutal life. And he isn't focusing on that instead of 'mindset'

Acceptance of fact and truth is what is needed: by everyone else. Any article focusing on directing a patient to do something different - when more than likely their world controls their options anyway - is just playing the same game of 'holding responsible for something over which you have no control' aka bullying. It's why I have an issue with pacing - other than if the word was put out and enforced that we need adjustments, from others, to make this possible - you read about people beating themselves up over having 'not stopped early enough' or 'I should have broken it up or taken a break' and you think how did we ge to a place where it is an illness that did this to you, believing you could have a shower in one go isn't you 'being a bad person or a failure' and people can't win if around someone else as you get energy rquirements to stop early and deal with the fallout vs energy requirements from pushing through to save yourself from the argumen.

Why on earth we've created a world that protects unempathetic well people from ever needing to be considerate and learn about things and have us all tiptoeing apologising for 'not managing ourselves properly' with someone arrogantly telling us even whether we hope or accept should be on our radar (newspaper decided to publish it, so it is 'a message' of some sort) and think it isn't tyranny of 'bad advice' 'you must be happier if you just' I don't know. It isn't like they've made it into a debate or had other contributors - tho I'd be really concerned if they did. HOW you think isn't the cause - how many times do we need to repeat it.

 

Society should accept too that we're disabled.

Part of why patients find it difficult to accept that they're disabled is that society generally has a high resistance to accept that people with this illness are disabled.

We ended up in the absurd situation where the patient's belief that they were ill and disabled was seen as thought so far removed from reality to become a mental illness.

 

You hit the nail right on the head @bobbler . That's exactly it.

 

I think KKH is likely using 'hope' to mean 'expectation and false hope' and 'hopelessness' to mean 'acceptance'.

Given KKH's previous articles, I don't think he's pushing for an ACT-style approach to ME. More that he's trying to be an upbeat realist.

That's not to say everyone should be accepting or let go of expectation. It's more that unrealistic expectation and false hope can be toxic in themselves -- and I think there's a reason they are often externally imposed upon us.

That sort of expectation and hope can be part of the Victorian attitude -- to push, to fight and to keep going -- which underlines the BPS model.

That's why they fought so hard to try and keep 'hope' a part of the guideline. That's why GET is all about targets (a form of concrete expectation).

These are often tools used against us, to make us fight our illness. (I also think it's partly about their own just world fallacies, but that's a digression for another time...)

That said, acceptance can also be used against us -- to make us stop fighting for change. So maybe the two things are linked?

Perhaps, in a way, we are encouraged to fight ourselves and not fight the system that works against us. If we're doing the former, it becomes much harder to do the latter.

In short, I think a healthy dose of picking our battles (if hopelessness or acceptance are too strong to use) can be helpful. But it's also helpful if we're able to recognise the things that we won't and can't accept, so that we don't allow bad practice to continue.

It's easier to do the latter if we aren't overly preoccupied with fighting the things we can't change (yet).*

*Which also isn't to say we won't need to fight for those things later on.

 

To me, a lot of the criticism of this article seems unfair. It's not an article I'd write, and I can see people wishing it was different, but it's a Guardian column.

 

not well enough to write a response... so happy @adambeyoncelowe has done it for me thank you

 

I assume this article was commissioned for this purpose and likely part of a coordinated media strategy. Probably not to the author's awareness, but the goal of publishing this fully aligns with trying the same thing all over again with ACT, ironically the opposite of CBT, but somehow will also "prove" how it's all psychological anyway.

 

Comment under the Guardian article that misses all possible points by a million miles.

"Only to add that there is no known cure for these maladies. Whoever promised it could not have been entirely truthful. So better to accept what is and make the best of it, instead of “shopping around,” as doctors often refer to it"

 

I gave up hope and felt much better. In my case I realised I was always waiting till I was better before doing anything, always hoping the next thing wold make all the difference. When I accepted that the way I was was as good as it was going to be for the foreseeable future I was able to look realistically at my life. That is when I got a wheelchair for instance.

It also stopped me going crazy and thinking I was cured when I had an improvement for a few days. It was before there was such a defined idea of ME so it gave me permission to stop searching for a treatment all the time and to stand up to people who were always suggestion I try one thing or the other.

Hope means different things to different people but the hope which leads you to try the next touted cure then the next is toxic for us.

We all deal with things in our own way. For me it meant taking back power over my own life.

I am wary about talking about privilege. We cannot know what life is like for anyone else. Someone with ME who has a disabled child and a husband who criticises and offers no help may suffer much worse than me even though my disease limits me much more.

 

Regardless of how it may help certain individual patients to think help is never coming, i don't think such articles have any right to exist, as long as severe patients with the same illness (at least as far as medicine is concerned) are spending their life rotting in bed.

 

I found this article a little upsetting, as someone who had a similar quality of life to Khan Harris for nearly four years. I then became bedbound after being convinced my fatigue was partly psychological and trying to exercise my way out of it, then catching Covid a couple of months later.

I kept thinking 'i should have adopted this mindset instead of trying to push my way back to health'. Not that this is KKHs fault or anything. I do feel this is a questionable essay to publish when so many are coming down with long Covid.

 

Can someone spell out what ACT means, please? It may be obvious, but my brain is just providing a blank at present!