How it feels to be exhausted 24 hours a day...article in The Sunday Times Magazine

https://www.thetimes.co.uk/edition/...eels-to-be-exhausted-24-hours-a-day-28cx59bn9

I think this is a really good article! Written by someone who became ill in 2016.

‘Two years ago, Joseph Luke went from healthy to housebound when he was struck down by ME. He describes the debilitating condition and asks why so little is being done to fund research.....

To have ME is like flu taking up permanent residence inside your body. Patients are crippled by a complete lack of energy, by muscle pain and weakness. Their cognitive abilities decrease; they can suffer from insomnia and sensitivity to light and sound. Symptoms are shared between patients, but also have different manifestations. For as long as I can remember, I’ve been a morning person, but now my body seems crushed by the weight of waking. I’ve also been plagued by constant sinus pain, tinnitus, wheezing and dry eyes. My skin has taken on a strange new texture.

The defining symptom of ME is “post-exertional malaise”: a worsening of all symptoms when the patient reaches a level of activity above their threshold. For some, this threshold could be having a day out with no rest breaks. For others, it could be raising their arm to brush their teeth. I am closer to the latter.....


ME is not a rare disease. Its prevalence and the level of disability it causes make a mockery of how little money is dedicated to research. I have spoken to dozens of patients for whom ME has had the same impact that it has on my life. It has stripped me of my career and my independence, and dampened the part of my soul that thrives on spontaneity and activity. I have often wondered how it is possible to be this ill and still be alive, with no more medical assistance than a prescription to buck up and get out more.

To be severely ill every second of every day is difficult. Sometimes I feel like I’ve made peace with it, only for my sense of self to be eroded just a little more after a particularly bad day, week or month. You see your previous self as a ghost and memories are imbued with a dreamlike strangeness, since they seem so distant from your new reality. The grand narrative of your life in which you played the all-conquering hero begins to fade, and the script for the next act remains unread.....’


I think you need a subscription to view it unfortunately.

 

Thanks to Christopher Nunn the journalist who wrote the piece.

If anyone has a subscription I'd be interested to know if there are any comments on the piece.

 

Should we avoid using his name, as it says "The writer’s name has been changed."?

 

Went back to have a look. I think I may have been thanking the person who took the photo of the person being described in the article. I can't read the whole thing and don't see another name nor the comment of pseudonym that you refer to. So best to ignore my comment.

 

Two comments so far - one from someone who had glandular fever and is commiserating, and one from a pwME.

The author of the article has used a pseudonym - but the photos are of him. He says the article took him several months to write...one paragraph at a time. He used to work for The Times.

It’s so nice just to have a piece about what it feels like, and what the problems are - feeling so unwell, lack of research, friends disappearing, not being able to plan ahead etc.etc.

 

All the pictures have the same name underneath the picture and caption, so my assumption would be that Christopher Nunn is the photographer.

There are six comments now, all of them supportive so far, even if some of the science some of them talk about is a bit wonky.

 

I'm very glad to read this point being made in national newspaper. The author makes so many good points. It's an excellent article, thank you to the author.

 

It doesn't require a subscription - just a log-in.

 

This is a great piece and we should be greatful that Joseph has told his story. Note for those who can't access the story, this article was published in a similar form on Medium several months ago.

 

Thought the start was vaguely familiar.

https://medium.com/s/story/how-to-almost-disappear-completely-310935cda86c

https://s4me.info/threads/joseph-stashko-how-to-almost-disappear-completely.4682/

 

This point really needs to be brought up every time. Most of the money allocated is not going to actual research. Real research funding seems to be less than than £1M in total, and barely at that. None of the psychosocial research can ever produce objective findings that can explain anything about the disease.

I don't care about where this fits on the debate of physiological-psychological, psychosocial is ideology, it's not scientific, doesn't attempt to be, only to appear so. It will never produce anything useful even if it's funded and allowed to sabotage research for another century.

 

Which it seems is the whole point!

 

Excellent article; very thorough.

Many, many points rang true re my own experience, and issues I have pointed out before.

The author's explanation of the theory of GET for ME, that this "illness is partly caused by patients' deconditioning, instead of simply being a natural result of being very ill", demonstrates the contempt the biopsychosocial theorists have for pwME. Lazy couch potatoes.

Many have said pwME were fit active people until struck by ME. Top athletes have developed ME. In my own case with gradual onset, I continued to attend gym programs, run, walk etc., until about 4 months before I was diagnosed. All the while I was exercising, and otherwise leading an active life, I was developing more and more symptoms. This, after a multi-month battle with EBV, which followed directly after stomach flu, some six years earlier. I kept telling myself it was just stress, or some other more benign health issue.

Being active, exercising several hours per week, keeping up a positive attitude, including downplaying my symptoms, and not focusing on them, did not stop the ME from progressing.

For almost 3 decades, I have been mostly house bound or bed bound. I endeavour to walk 30 minutes per day, and have been through extensive CBT. Neither of these "therapies" has returned me to any semblance of robust, or even passable health.

The GET/CBT theory for ME, is a crock of poo!

Another point brought out by the author is that authorities have not even tried to find the biomedical mechanisms for ME.

Three decades ago, and in more recent years, I have written to, and received replies from insincere health departments saying ME is complex, a very difficult disease to research, they are dedicated to finding the cause and cure, making citizens' lives better, blah, blah, BS! They weren't even trying, and had no intention of doing so.

Thank you to the author for this comprehensive article. I understand the work that went into it, and the costs in one's health for doing so.

I hope that someday, in the not too distant future, we can all run, walk, etc., not only in our dreams!

 

Thank you @rvallee for your insight. Yes, the whole point seems to be to imprison ME, and pwME with it forever in a quagmire of useless, but lucrative pseudo research; lucrative for the biopsychosocialists. They keep pwME confined in this prison by capitalizing on the stigma of mental illness. That keeps serious biomedical researchers away.

 

“After decades of knowing about this illness, we have nearly nothing meaningful to show for it. Not because we’ve investigated it thoroughly and come up short, but because we haven’t really begun to try.” Pitiful truth.

 

It's really the biggest possible insult coming from those who successfully argued for all research funding to be ended and held the field back for decades. Because of them we still don't know enough and they gloat about it, shove it in our faces. They even seem proud of it, that decades later they still control us and face no accountability for their lies.

 

Yes, it is v similar to what Joseph published on Medium in summertime, I recognised it straight away, the dream about flying/running. But on Medium he went into the PACE/NICE stuff in much more detail. The Times article benefits greatly, I think, from not digging deeply into the scandal, it is much more readable to the layperson and he gets across the hell of the illness, the massive disruption it causes, especially in those first few years when one is still shocked by it all and can remember good health.

But while first person articles are always instructive/moving, nothing really changes. Not where it matters.

What we really need is science journalists writing articles skewering PACE and NICE. I am not following NICE as carefully as others but I have a feeling of dread.

 

might it be the guy at the other place? (journalist, in London who had just been diagnosed c 2016, said he might write about ME) can't remember his name over there.

 

Just came across another journalist who has ME:
https://www.theguardian.com/profile/scott-jordan-harris

he's on twitter
http://twitter.com/#!/ScottFilmCritic

he wrote this piece in the guardian in 2012:
https://www.theguardian.com/commentisfree/2012/mar/30/me-emily-collingridge-chronic-fatigue-syndrome

 

The author reveals himself...
https://twitter.com/user/status/1069222635492581377