Chronic fatigue syndrome in the emergency department (2019) Timbol and Baraniuk

I think much of the problem stems from the fact that the medical profession is very reluctant or unable to carry out quality assessments on itself.

In my own career there were built in quality checks. Any report would be QA'd by a minimum of one other person of at least the same technical level plus another employee. The people we worked with, including fellow employees from various sections who'd worked with us and customers would be routinely contacted and questioned in confidence.

A significant portion of our bonuses depended on how we did. If an issue or problem was raised then it would be verified as far as possible. Every few months our performance was reviewed with us. This is in addition to the usual checks that took place as each project or job progressed.

This wasn't a bonus witholding, punitive process. It highlighted weak areas in our performance where it counted - the real world scenario. If there was a weak area then ways of improving and, if necessary, retraining were investigated.

If the same investigations took place when people die, after a formal complaint and when someone ends up being diagnosed at a late stage of illness then the trail should be followed back. The chances are if a doc has missed one diagnosis of ovarian (or any other) type of cancer, they'll have missed others.

This should be spotted and the doc required to undergo additional training and monitoring. If no one follows up and points it out they may never know they've screwed up and they'll never have a chance to learn from their mistakes.

In my career, training was an ongoing process, you weren't just certified, you had to keep maintaining and updating. You were under constant review. Medicine should be the same.

 

Thank you @Forbin for this comment. I think many pwME initially hope their doctors can help with the ME. But, overtime, the relationship may sour. It would be interesting to know how others think about this, and if they avoid their health practitioners even if symptoms are very concerning. I think this should be formally studied, by biomedical oriented researchers. Barring that, I would like to post a thread with questions about this. I don't want to barge in on your concept. Do you have any comments? Thank you.

 

Feel free to start a thread on it, @DokaGirl!

 

Thank you @Forbin!

 

From what I'm hearing, this paper is having a significant impact internally at Kaiser Permanente.

 

It's also the realization by some doctors internally that "oh shit, these people are really really sick and we've been dismissing them for years as psych cases". Doctors, love them or hate them, are effecting change.

This study is particularly impactful because it's done by physicians in a clinical setting. Every doctor that's ever been in an emergency room can relate to this study.

 

Random thought I had. Does anybody know if there has ever been any studies that looked at late cancer diagnosis and the diagnosis, if any, that the patient had prior to the cancer being diagnosed/discovered?

 

I can remember a couple of stories over the years of very young women with (possibly ovarian - gynaelogical at any rate) cancer. By the time of diagnosis it was too late.

The delay in diagnosis was mainly because they were considered to be too young to be at risk for the type of cancer they actually had. So their symptoms were out down as other, more trivial things.

 

How was I not on this thread but somehow simultaneously having this exact conversation? I feel like we're sharing some kind of hive mind...

 

In ME, there was that study of Jason's that found much earlier death from cancer.

Whether that's NKC dysfunction or patients and/or their doctors chalking up other symptoms to ME is a good question. Nothing to say it isn't a little from column A, a little from column B.

 

There are some cancers that are found late because the symptoms were in general vague. Some other cancers are very aggressive (Burkitt’s Lymphoma, glioblastoma) and come rapidly. Some cancers are silent and difficult to diagnose, unless patients present for another problem (for instance, lung cancers, or sarcoma, pancreas, multiple myeloma, or even some leukemias.

Some cancers can be detected from regular physical exams or screening programs such as breast, cervical, skin, prostate and colon while others can’t.

Anyways... this is a bit off-topic. i just wanted to say that while some cancer cases are missed from neglect or physician missing the diagnosis all together, there needs to be a consideration that sometimes, some cancers give no warning at all.

Also, missed diagnosis are good doctor’s biggest nightmare.

 

That one would also be an interesting one for male/female proportions

 

Relevant to add that EBV is an oncovirus, and that herpesviral infection (of which EBV is one) is one of the most well-documented triggers for ME onset.

 

Now @Milo has mentioned lung cancer, it reminds me if a neighbour who died of it.

The day he was diagnosed, the oncologist put his chest xray up and showed him the tumour on the film. Then my neighbour noticed the date on the film and pointed out it was the wrong one.

It turns out there were 2 xrays. The first one is the one a chest specialist used to give him the all clear and the 2nd one taken a year to the day later which the oncologist ordered.

The oncologist spotted the cancer immediately in the old film used to give him the all clear - no suspected cancer. Then they looked at the new film and saw what happens when you don't spot lung cancer and leave it untreated for a year.

 

I mentioned earlier in the thread about a relative who had lung cancer which took 6 months to diagnose. She coughed so badly that she constantly vomited and couldn't keep food down. As a result she lost 50lbs. She was under 5 foot tall, and her huge weight loss left her severely emaciated.

Six weeks before the diagnosis she was sent for X-ray (the first time this had been done) and she was told after it, "Good news! Your X-ray is normal." When she was finally sent into hospital her coughing and vomiting made the doctors realise, for the first time, that she had a very serious problem. This time they gave her an MRI scan, and then she got the news that she had lung cancer, it was very advanced, it was too late for it to be operated on, she was too frail for chemo, and although nobody said so, she realised she was just waiting to die. I never did find out why the cancer (allegedly) didn't show up on the first x-ray.

 

My dad died of lung cancer. He had an all clear x ray , then 3-4 months later had another that showed lungs covered. My stepmum is a radiographer and was stunned at the difference in so short a time.

He drank like a fish, smoked like a chimney and spent first 20 years of his career in asbestos encapsulated ship' s engine rooms as a marine engineer, so was on borrowed time one way or another.