People with ME have been ignored for far too long, Sajid Javid, The Times (UK), 2024

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People with ME have been ignored for far too long
Sajid Javid

The Times (London) 10/05/2024

A once active, happy person, full of life, is now bedridden, too exhausted to eat and barely able to speak. What happens when you have a disease doctors can’t diagnose? Many with myalgic encephalomyelitis (ME) have faced this question for decades.

Since the NHS was founded 76 years ago, huge advances have been made in combating disease and illness. But those living with ME have been left behind. Little understood and often misdiagnosed, this complex condition causes debilitating symptoms including prolonged fatigue, dizziness, muscle pain and brain fog. For some, it can begin after a battle with illness. For others, the start can seem unexplainable.

For decades, patients have been routinely dismissed. Families were told that their loved ones suffered from a psychological condition or “yuppie flu”....

(Paywalled)
https://www.thetimes.co.uk/article/people-with-me-have-been-ignored-for-far-too-long-gv2nhq28m


Excellent column in Times this morning.
 
Thanks, @SNT Gatchaman!

I hadn't heard about this:

Sajid Javid in The Times said:
I already knew about this condition before I was appointed health secretary, due to the painful experience of a family member. [...] I announced two years ago a radical new approach to combating this condition. It would focus on diagnosis, research and care, and produce the first cross-government strategy on ME. Two years later, it remains unpublished.
Click to expand...
 
"Third, to ensure better care for patients, every NHS trust needs to implement the latest ME support guidelines. Troubling reports suggest that only one in four trusts are complying. Ministers must investigate this and urgently address what is going wrong."

25%? That's really worrying.
 
Sean said:
What happens when you have a disease doctors can’t diagnose?

Can't define, diagnose, treat, or even manage. They can't even reliably meet the minimum standard of simply not making things worse.
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It's not a fair framing, though. In most cases, it's "won't diagnose".

We've seen it plain stated so many times, "we don't like to diagnose people with this". I have seen far too many people saying their MD agreed that they meet the criteria, but they won't put the diagnosis down, usually with some BS reason, either of 1) there are no treatments or 2) this won't help you.

And of course there are no treatments in large part because the problem is covered up by not diagnosing it.

Won't, not can't. It's a matter of will, rather than ability. Which, wheeeew holy irony, the projection is just off the scale.
 
rvallee said:
We've seen it plain stated so many times, "we don't like to diagnose people with this". I have seen far too many people saying their MD agreed that they meet the criteria, but they won't put the diagnosis down, usually with some BS reason, either of 1) there are no treatments or 2) this won't help you.
Click to expand...
In fairness, some doctors don't want to formally diagnose ME/CFS because they are trying to protect their patients from the shitty deal that label brings with it.
 
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