Jennie Jacques on living with ME: ‘I am a shadow of my former self physically’ , The Times (Sean O'Neill)

MSEsperanza

MSEsperanza

Senior Member (Voting Rights)
Jennie Jacques on living with ME: ‘I am a shadow of my former self physically’ , The Times, August 18 2021

by Sean O' Neill

As her 30th birthday approached, Jennie Jacques was on the up and on the verge of a breakthrough to big-screen stardom. The British actress had played the leading part of Queen Judith in three seasons of Vikings, the critically acclaimed History TV series, building her reputation and a growing public following.

Jacques combined her demanding career with open-water swimming events, tower running and gruelling obstacle course races to raise awareness of (and funds for) epilepsy, the condition that afflicted her younger sister.

https://www.thetimes.co.uk/article/...shadow-of-my-former-self-physically-z7plw7nnx

paywalled
 
Ironic that this article is much better researched and more factual than nearly all the articles reporting on the NICE debacle, even though this one is a lighter piece based on personal testimony and the others are supposed to be technical journalism, strictly factual.

It's seriously excellent. Amazing to this happening on the same day as widespread disinformation is being pushed. And how the entire issue is happening with almost no discussion of the massive overlap with Long Covid. Seriously a context that massively increases the importance of this issue is simply ignored, because it goes against the desired narrative.

You couldn't build a more perfect example of how expertise can fail, it ticks all the boxes and then some. The textbook example of how to fail.
 
I found this interesting as I'd never heard of it:

https://polybio.org/

Our Vision:

  • To take current research, identify important existing trends, and translate the data into information that doctors can use in the clinic to help their patients. This includes the development of new advanced testing methods that can reliably characterise a growing number of disease-related abnormalities.


  • To take current research, identify gaps where data is lacking, and use such knowledge to support and collaborate with research teams whose existing tools can tackle the problem and develop new solutions.

Areas of study:

https://polybio.org/#section-study

 
MSEsperanza said:
I haven't read the article yet but good to see that others like it.

It seems to not confuse the portray of a patient with presenting facts about an illness -- so that the portrayed person is not presented as a cases study. Is that impression right?
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It has a healthy mix of general facts about the disease, with examples from her life, how she was super active and on the rise to a great career that is now fully on hold.

I do love the bit at the end about her having a naturally positive disposition and adored her life, a common trope that still has to be dispelled. But a good example of how horseshit it all is.
 
rvallee said:
It has a healthy mix of general facts about the disease, with examples from her life, how she was super active and on the rise to a great career that is now fully on hold.

I do love the bit at the end about her having a naturally positive disposition and adored her life, a common trope that still has to be dispelled. But a good example of how horseshit it all is.
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I can see why journalists and even first-person accounts emphasise how active and positive their subject was before getting ME, in order to contrast it with how inactive they are now. I've done it myself when writing about how super fit and active I was before ME. But an unfortunate side-effect of this very common framing is that all these articles about super active people play into the "type A personality" nonsense. And also, although written with the best of intentions, is the author implying that of all people, this person really didn't didn't deserve ME? Am I getting a whiff of toxic positivity?

An excellent and very welcome article anyway, I'm not knocking it, just noticing that in most such articles the journalist is tempted to emphasise a positive, active, achievement-filled lifestyle before ME. But boring people are just as likely to get ME too, and are just as undeserving of it. I don't know what the answer is, perhaps a note at the end of such articles - "please be aware that average people who have never been famous and don't have a long list of amazing achievements to their name are just as susceptible to ME, and in fact hundreds of thousands of them already have it, they really didn't deserve it either, and you could be next dear reader."

Anyway, I can't really expect a journalist to come knocking on my door and write an article saying "before ME, TiredSam was a lazy middle-aged work-shy grumpy sod who spent most of his time on the sofa, so he was perfectly prepared for the ME lifestyle when illness struck."

This article just made me consider a more general point - most of these articles over-emphasise an active and positive lifestyle beforehand, with the best of intentions, but the cumulative effect of this very common framing could include some unfortunate side-effects.
 
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TiredSam said:
I can see why journalists and even first-person accounts emphasise how active and positive their subject was before getting ME, in order to contrast it with how inactive they are now. I've done it myself when writing about how super fit and active I was before ME. But an unfortunate side-effect of this very common framing is that all these articles about super active people play into the "type A personality" nonsense. And also, although written with the best of intentions, is the author implying that of all people, this person really didn't didn't deserve ME? Am I getting a whiff of toxic positivity?

An excellent and very welcome article anyway, I'm not knocking it, just noticing that in most such articles the journalist is tempted to emphasise a positive, active, achievement-filled lifestyle before ME. But boring people are just as likely to get ME too, and are just as undeserving of it. I don't know what the answer is, perhaps a note at the end of such articles - "please be aware that average people who have never been famous and don't have a long list of amazing achievements to their name are just as susceptible to ME, and in fact hundreds of thousands of them already have it, they really didn't deserve it either, and you could be next dear reader."

Anyway, I can't really expect a journalist to come knocking on my door and write an article saying "before ME, TiredSam was a lazy middle-aged work-shy grumpy sod who spent most of his time on the sofa, so he was perfectly prepared for the ME lifestyle when illness struck."

This article just made me consider a more general point - most of these articles over-emphasise an active and positive lifestyle beforehand, with the best of intentions, but the cumulative effect of this very common framing could include some unfortunate side-effects.
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I do the same when talking about my wife, to clarify that she is not in the least the sort of person to fall prey to being deconditioned and not work her way back out of it again.
 
Barry said:
I do the same when talking about my wife, to clarify that she is not in the least the sort of person to fall prey to being deconditioned and not work her way back out of it again.
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My husband (IM) found himself doing the same.

The subject came up at work when the wife of one of his colleagues was diagnosed in her late 50s and had to take early retirement. My husband mentioned I'd had it for decades and other colleagues were curious.

I think he finds the stereotyping either way even more frustrating than I do.
I may be the one who's sick but he is also affected by it & it has limited his choices too.
 
Well, we've come a long way from ME articles dictated by the SMC or written by the likes of Rod Liddle. Then we had more ME-friendly articles written about Beverley the Belly Dancer and her ilk, usually celebrating how they had improved and ending with the contact details of a modelling agency, a life coach, or a go fund me page. What we have now is definitely a sign of continued improvement, it's good of Jennie Jacques to use her position to raise awareness, she's not selling anything, and Sean O'Neill intersperses her story with good reporting on the matter.

I am however cautious about relying on celebrities, it can go horribly wrong when they start tweeting cringeworthy stuff. Esther Rantzen talking about her daughter did us no favours. That bloke who sells phones whose family got lyme disease raised awareness briefly, but what happened next? We shouldn't need celebrities, the story of hundreds of thousands of ordinary people being shafted for decades is big enough. Victims of Hillsborough didn't have to be celebrities. Babies who died of whooping cough because they weren't vaccinated thanks to Wakefield didn't have to be on the brink of TV stardom. When can we have stories on the ME scandal where the ME scandal is enough of a story? ME reporting seems to be trending in phases, and improving in quality, so who knows what the stories in 5 years will look like?

EDIT: Since writing the above I have remembered the time my mother phoned me to tell me about Deliciously Ella. Explaining that making myself expensive vegan puddings was unlikely to work even if I had the energy seemed like too much hassle, so I just thanked her.
 
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