"Emergency departments aren’t trained for Long COVID — and patients are paying the price" (The Sick Times)

[The headline says Long Covid, so I put it in this forum, but this article also applies to ME/CFS, and probably many more chronic illnesses that aren't well known by the staff in hospital emergency rooms.]

Emergency departments aren’t trained for Long COVID — and patients are paying the price

 

LC and ME/CFS a "between the ears" thing has relocated to a "between the ears" thing in doctors.
Also known as lack of knowledge and prejudice.

 

I am not sure what point is really being made here. Emergency departments are there to deal with situations where diagnosis and management needs to be immediate to save life or limb. Anyone severely ill who has had Covid has pretty much the same differential diagnosis of possible causes as anyone else. 'Long Covid' if anything ends up as a diagnosis that isn't going to need management immediately because there is no special management.

To that extent lack of knowledge of a concept of Long Covid isn't really problem in A/E and may even be an advantage because it will mean that people with pulmonary embolism are not sent home as 'just Long Covid'.

 

I believe that’s far too generous of an interpretation. As we tragically saw with the death of Maeve and many others before her.

 

I had to attend A&E with my partner who was in excruciating pain with a migraine that had him screaming on the floor. He usually has to be injected with morphine at that point. No ambulance would come out, so despite having severe ME, I had to crawl to my car, drive him to the hospital, and then drag him into the waiting room (not easy as he is 6ft 3).
Despite the fact that he was clearly in extreme distress and screaming on the floor and I was sliding off my chair due to severe OI, many people with no obvious symptoms went through before us. We waited about 3 hours during which time I struggled to remain upright. I seriously thought might heart might just give up.
When we went through, we were treated with contempt by a junior doctor, who treated us as if we were a couple of drug seeking junkies. I guess by that stage our appearances were not to bright. I told the extremely rude doctor that I was a retired solicitor and my partner's consultant had authorised him to have morphine. At which point the doctor scarpered and was not seen again. He sent a nurse in to deal with us. All we got for our troubles was a packet of Naproxen, and then 3 days later my partner had to be admitted to hospital, where he remained for a week.
Anyway. The point of this ramble, is that the actual environment in A&E is so bad for people with ME (or for that matter migraines), that I have vowed I will never ever go for anything relating to myself. I would sooner just die at home.
Massive education is required in the NHS, but let's face it that just isn't going to happen. Not in my lifetime.

 

Years ago I ended up in the ER due to extreme vertigo. I thought I was having a stroke. I was told by the ER doctor (after I told him I had recently been diagnosed with CFS) to go out and buy myself 'something nice' and then gave me a card to see a psychologist. I left the card on his table.

This is exactly why I won't go to the ER unless I'm in a body bag. The stress of just getting there and lying on the floor because there were no chairs was very stressful.

 

I think it’s more of a problem that ERs mostly don’t understand PEM or OI, so you risk getting worse than you have to by going there for other issues. There are also plenty of examples of pwME/CFS that have been turned down by ambulances because they are unable to get down the stairs in their home on their own, and they don’t have a valid excuse to be carried.

And they rarely mask, so infections are running rampant at both ERs and hospitals.

 

That behavior is straight up weird. "You can control your body" is absurd and obviously inappropriate. Good grief, the manners.

But I call BS on no one having heard of LC. I'm sure this is what they said, but it's completely unrealistic. So the question is whether they are officially told to say this, having decided it's their preferred way of dealing with "those patients", or if it's an unofficial cultural thing, where they all just play along in a sort of hush way, and who knows what they say about it in private. I'd say the former is far more likely.

We know for a fact that many governments and their respective health care systems had internal memos that circulated about LC by 2021. And it's too big to be entirely ignorant of it. It's the size of the lie: never heard of it. Zero chance that this could be true. They could all think it's a bunch of crockery, but of course they have all at least heard of it, or at least most of them.

Yup. She and others did die, and not only do they still don't believe in it, most of the people involved would make all the same choices again. In fact I'd say that 99.9% of physicians would say that no one has ever died with ME/CFS being the primary cause, or at least the reason. Instead they reinforce their beliefs of how powerful their "mind-body" crap is. It's especially awkward considering that the primary cause of death in this case is like a coma. No one dies of being in a coma. People die of not being kept alive when in a coma. The question of whether coma is deadly can be sort of philosophical, but in practical terms it doesn't take much more than a high school degree to be smart enough to know about the basic cause-and-effect at play here.

It matters because from the perspective of the patients, we can't know. We can feel as lousy as some people will feel a few days before they die, and it can turn out there's nothing that medicine can figure out.

And it could be an embolism, or a stroke, or cancer, or a number of things. But from our perspective it's not possible to know, and, really, if physicians understood how completely horrible we feel, they would find it absurd that people don't seek immediate medical attention. As patients, we have to make impossible choices, with one option being likely death, and the other being humiliation and gaslighting.

And when you consider how extremely hostile ERs are to us, not just with the contempt from staff but the loud noises, bright lights, uncomfortable chairs and a general attitude that is fine with leaving people crawling on the floor with zero help, it just emphasizes how absolutely horrible we feel that anyone would force themselves to go there, and how anyone with minimal common sense would find it reasonable to go to an ER when things are that bad. Especially when the general degradation in primary care means very few people have anything resembling health care that isn't strictly for emergencies or specialist treatment anymore.

 

I’m more likely to die at home of something acute than to go to an ER if I get really bad. Because I have no idea if I’m dying or if I’m just in a bad crash. And if it’s a crash, I can’t afford the brutality of an ER on top of it.

 

A friend went to the ER because of kidney stones pain and waited hrs because of the long wait times during the Covid outbreak. When he told the ER doctor that was diabetic he was immediately given an IV line to walk around with.

 

Yup. The only time I went to the ER with severe ME/CFS, i waited 30 mins, and by then I was nearly fainting because my POTS was flaring up and they didn’t have any beds so I had to sit up. So we decided to just go home and hope nothing too bad happened instead of waiting more.

 

I'm sure Long Covid and ME/CFS patients who go to the emergency department (I'll use the term "ER" = emergency room) are there for symptoms which they think may need urgent treatment. The patients need the doctor's expertise to figure out whether it's an emergency or not.

Long Covid or ME/CFS patients definitely know that ERs and urgent care clinics are not meant to treat chronic illnesses. Like so many folks have posted in this thread I think most of us avoid going to the ER or urgent care as much as possible. We're not going there to get treatment for our chronic illnesses.

But if, heaven forbid, we get into a situation where we decide we must go to the ER, we want to be treated with respect and dignity. Patients also want the ER doctor to respect their needs and limits (e.g., "I need to sit down/lie down" or "please wear a mask") while they are investigating the symptoms which caused the patient to come to the ER.

If a doctor doesn't know about Long Covid or ME/CFS then they may scoff at, or completely ignore, any requests for accommodations. Imagine what doctors might think about patients who end up lying across multiple chairs (or maybe even on the floor) to avoid feeling crappy and passing out if those doctors don't believe orthostatic intolerance exists. And how will doctors treat patients who wear ear plugs and eye masks to limit sensory input if they don't believe those aids are necessary or helpful?

In case folks missed it, here's a key quote from the article:

Having a doctor listen to you and believe you, even if they don't know what is causing the symptoms or how to treat them, is an important part of clinical care. I've been lucky to have a few of these rare doctors.

So what changes to the ER would be helpful?

Some practical suggestions included in the article were more training for doctors (which might include info about certain accommodations that may be needed) and doing more telehealth (video) appointments when possible. I think those are worthwhile goals.

I do see your point. Doctors should definitely not be thinking "Oh, that's nothing, it's just part of Long Covid or ME/CFS!" But sadly, some ER doctors are already doing that! People with ME/CFS have been sent home with serious conditions - including pulmonary embolism - that have been found later. I know people who have had this happen to them.

I don't think that more doctor training about Long Covid and ME/CFS would make this existing problem any worse, and it might improve things a bit.

 

Don't tell them you have LC or ME/CFS? Describe the symptoms you're feeling and tell them you have a chronic illness and then go from there.

 

This is only possible if your ME/CFS is mild and you don't need any accommodations or mobility aids.

 

I do understand your point of view but I fear that "training" about Long Covid and ME/CFS could easily make things worse, judging by what gets put into government eduction material. Some of it is soft psychologising. Some of it is biomedical pseudoscience. Very rarely do we seem to see something based on common sense like an S4ME factsheet!

 

Not necessarily. I use a wheelchair and never mention ME/CFS—not because I'm worried about negative reactions, but because I can't be bothered with long, boring explanations. I say my legs aren't so good.

Only been sent to A&E once and the doctor there did a basic neurological exam because of other symptoms. He asked about the chair, and I told him my legs aren't so good.

After the exam he said it was an odd pattern of weakness, with normal strength in my lower legs but not in the upper legs. I said yup. That was the issue dealt with.