Emergency at the Emergency Room

View attachment 564 Is there any more terrifying place for CFS patient to be than the emergency room the hospital? Sure, emergency rooms are upsetting for everybody but to be in emergency room knowing that the ER personnels biases towards you could leave you with substandard care, at the very time you need good care, is frightening . In an emergency room you want to be able to have trust but trust is a hard thing to come by when chronic fatigue syndrome patients step into almost any medical facility. No wonder that Dr. Bell strongly urges chronic fatigue syndrome patients NOT to tell ER personnel that they have CFS.

Mike Dessins emergency room visit at the end of 2008 is a case in point. Mike made it out of the emergency room barely intact but his visit demonstrated the callousness the medical profession can strum up when it doesn't know or understand (or want to understand) the patient its dealing with.

Under the care of his practitioner Mike had improved somewhat but was still emaciated and horribly weak. Ordinary stimuli such as light and noise left his fragile nervous system horribly shaken. When, after lying on his back for the past year, sitting up too fast caused both lungs to partially collapse, he was rushed by ambulance to the emergency room. The report demonstrates in clinical fashion just how ill he was.

Mikes Hospital Records Part I / Part II

The intake notes state that pt. whispers and asks staff to whisper questions d/t sensitivity and appears under nourished and dehydrated. (Mike had severe stomach pains when eating and became so sensitive to foods that he had lost about a third of his normal weight). At 63 he now weighed 114 lbs. They indicate that wracked with chest pain and hypersensitive to almost all stimuli Mike came in the emergency room wearing dark glasses and with his earplugs in. Even with the dark glasses on he asked that the lights be turned off.

The first physician casts Mike in a uncooperative light that sets the stage for his stay there. Despite evidence (need to whisper, problems with light) that Mike is severely debilitated the doctor believes Mike's frustration is the reason hes having trouble communicating. Mikes explanation about his problems (he has chronic fatigue syndrome/ME) doesn't mesh with the doctors understanding and he states that Mike offers no helpful information to me.

Further examination reveals that Mike has pancreatitis and two partially collapsed lungs. Mike requests that he'll be fed intravenously in order to get his weight up and the hospital does this one night but after that the insurance company states they will not pay for any more procedures. With that Mike, at 114 lbs, with his dark glasses on and earplugs in, barely able to whisper, unable to stand upright or even sit upright for extended periods because of his chest pain , (not to mention his POTS), and with his partially collapsed lungs and pancreatitis, is unceremoniously booted from the hospital.

To go where one wonders? Did they even think about where Mike Dessin would go? A lonely apartment room to die in? Did they even consider what options he had left? Did they wonder amongst themselves how much longer he would live? Or was he just one of many theyd seen fall through the cracks? Just another medical statistic?

Clearly Mike was an unusual patient - a difficult patient for our medical system to deal with. Physicians are left dumbfounded at these patients inability to tolerate stimuli and their extreme debilitation. Not knowing how to deal with them they often simply throw them into the medical professions favorite wastebasket (mental illness), which many believe CFS is, and wash their hands of them.

View attachment 563 Patients honest enough to tell emergency room personnel they have chronic fatigue syndrome are often rewarded with a cursory examination. The term seems to put blinders on them causing them to lose their diagnostic zeal - tests are not performed, examinations are done sloppily, seemingly standard courses of treatment are ignored - emaciated, diseased individuals are booted out into the streets.

Mike was lucky; he had a physician who stood by him night after night but it was still touch and go. He almost did die -losing another 10 pounds - and his doctor feared for his life but eventually he did turn him around.he was not another medical statistic, after all.

Mike and his Doctor, a former emergency room physician, hope to educate emergency room personnel and other doctors about the better, more humane ways to treat ME/CFS patients.


In 91, I had encephalitis from this disease. I was in the hospital on IV antibiotics. My insurance refused to pay for more than three days of it, even though it was clearing my brainfog and helping me. They threw me out of the hospital and off the lifesaving antibiotics, after the insurance company got through scaring my doctor enough. This led to my condition worsening to where I ended up bedridden for the next two years. I believe if they had let me stay in the hospital on the IV antibiotics for a full ten days, I might have just kept improving and not ended up losing the rest of my life to this disease.

For the few days I was in the hospital, the nurses didn't understand why I couldn't get up to get washed or anything. They had no concept of someone not having the physical energy to move. Sadly, after nineteen years, that still holds true. Hospital staff have no concept of the physical problems that we have.

I have severe light and sound sensitivity. Particularly the sound. It has gotten to the point that I have to keep white noise on in my apartment to block out all other sound, and even that white noise bothers me. I'm actually much calmer with earplugs in. This disease is horrible. Doctors and hospital staff have no concept of the physical suffering we go through. And our symptoms are often ignored. I've been in the ER with a body temperature of 92 degrees and the staff has acted like it's nothing, even though I was shaking with hypothermia from it. I've been in there with bleeding, too, and they've acted like it was nothing. We're not considered priority cases.

My diagnosis of Chronic Fatigue and Fibromyalgia is on my hospital records. So, not telling them doesn't do me any good at this point. They just open the file, see it, and act like I'm making up whatever I'm telling them. Although, in recent years, the attitude seems to be more of, "Why are you here, we can't help you." I seem to get that alot with doctors now. Anywhere I go, none of them want to treat a CFIDS/ME/Fibro patient.
i too suffered from encephalitis in 99, wen't to about 10 er's before one thank god, put me in the hospital for 2 days.i was so dehydrated from throwing up for 2 weeks strait it took 4 bags of fluids before i could urinate or cry tears.i lost 55 lbs( although i needed to loose weight) it was a damn hard way to loose it.all those er's i went to would do was a urine test, basic bloodwork & send me on my merry way, throwing up as i was wheeled out yet another er door!
one even told me i was depressed, and gave me a script for Buspar!
it took me a year to get over that, ijust wonder how many of us go thru that & die without anyone ever knowing it was cfids/fibro.
carrigon, i know what you mean. as soon as i mention cfids/fibro the gp that wa taking new patients suddenly... wasent :( i was so happy about the xmrv thing, now im not so sure we will ever be Normal again, it just dosent look good for us.
I was hospitalized in 1995 due to severe back pain following a surgery for endometriosis. My back was killing me. It was one of the worst "local" hospitals not in the city. They put me on dilauded, which I told them I cannot take 2 mg. of dilauded because I would be sick. I could take it, but only at 1 mg. They did not feel that that could help me at all and felt that I was crazy for only wanting 1 mg. They gave me an IV of 2 mg. I began to itch all over, a full on rash happened and I vomitted all night. I was in so much pain and so F-ed up from the medicine. I would try to walk to the toilet to vomit but was in too much pain and actually gagged on my own vomit. They were shocked, as I vomitted all over the bed. They let me go home the next day totally dehydrated and said that I was a difficult patient. It took me a month to recover from my experience in the hospital.

Post traumatic stress has occurred due to hospitals. In 2001 I was in San Francisco for a much needed surgery due to the endometriosis. I was seeing a specialist. The reason for my back pain was that my ovary was embedded to my intestine requiring a major surgery including on the intestine. The surgery was so long, I developed a blood clot. I was released from the hospital only to be admitted the next day. When my doctor came into to see me, I was in full on fever mode from the clot. I was crying and screaming, "Get me out of here, they will treat me horrible, I know it. I can't eat wheat, get me out of here, this place will kill me." I was a total mess. She felt so bad and said there was no way I was going anywhere. I had to stay put for 7 days. The clot almost killed me. I had to have surgery for the clot. She MADE sure that everyone treated me with respect and had a serious talk with all nurses, doctors, etc. I was treated like ROYALTY. It was the first time, the only time, anyone listened or cared. Hospitals in my mind, are for killing people. Not just CFS folks, but anyone!

My sister was in a hospital for 2 months due to pancreatitis. Turns out, it was pancreatic cancer. She found out 3 days before she died that it was cancer!! How messed up is that??!!
I agree that hospitals kill you off. They either kill you or they under treat you and throw you out. That's why I rarely go anymore. About a year ago, I went because my thyroid was killing me. I had a bad flare up of Hashimoto's because the alternative treatment I was using, I had stopped it. I went in to the ER in horrible pain with the thyroid. They did the bloodwork and the thyroid sonogram. They said it was Hashimoto's but that they didn't give thyroid hormone, even though they knew I needed it immediately. They told me only my doctor could give it to me. They wouldn't give me any at all. They sent me home with a crappy pain pill prescrip and told me to see my regular doc. I did go to my regular doc and get the prescrip for thyroid hormone, which did calm it down. But the hospital should have given me some. I guess they let people with goiter just die. IMO, the ER is almost useless. They are probably good for broken bones and other easily treatable things, but when it comes to real important things, forget it. They were killing off nearly every Swine Flu patient that was admitted, too. That's why I didn't go when I got it.
I was so sad to read these terrible stories. I have learnt to just relate my symptoms (every time I go to the local hospital ER) & I'm sorry to say, even highlight the chest pain issues.

Chest pain (inferring possible heart attack) gets you in to see an ER Dr the quickest I've seen on record - even with a waiting room chock a block & overflowing with patients (some with bloody bandages).

The only 2 scenarios where I have bad experiences were when I cut my finger very badly (down to the bone, which didn't look bad because it was in the crease of a knuckle) and, when a work colleague drove me to the ER in the middle of the day due to dizziness, vertigo & could barely speak I was so unco-ordinated (& was sent home & told to take a panadol & rest). Even after several hours rest, I felt extremely dizzy, took my BP which was sky high & attributed my episode partly to dangerously high BP. The Dr who I saw thought I might have "had a bug or virus" & despite me saying I had medicated high BP, didn't even take my BP). That's the only time I've attended an ER where someone hasn't taken my BP as a matter of course.

We hear stories of severely ill patients who are sent home & drop dead, regularly on current affair programs, but it still keeps happening.

I guess the best thing is NOT to tell them you have CFS/FM, especially if you have symptoms which can be attributable to something more acceptable by the medical profession on shift that day/night.

But it also comes down to understaffing & ER doctors who are exhausted & have been working 36 hour shifts or more. Sometimes I suspect it all comes down to who is on the shift that day/night. Only 24 hours ago, the Australian Govt pledged another 600million towards Doctor training. We need more Doctors, that's a fact.

I don't know about the US, Canada, UK & other countries.
E.R.s in the U.S. are usually staffed by residents who are so tired they can't function. New York State passed the "Libby Zion" law after a young woman went to the E.R., was misdiagnosed, and died. She didn't have CFIDS. Her parents were influential, angry and that's how they worked through their grief. I have a medic alert necklace; it does not say CFS, because that would not mean much to an E.R. doc. My sleep specialist, a neuro at one of the best hospitals in the world, told me he had a scary experience at his own E.R. He gave me a list of the better E.R.'s in the city. His wife, an E.R. doc, was out of town the night he got sick.
45,000 people a yr die in the U.S. because they do not have health insurance.
I wish I had Dr. Bell's quote. He said Never tell an ER doc that you have CFS. He's had CFS patients go into the ER after an auto accident and come out without being XRAYED only to later find they had broken ribs. Its a crazy situation - particularly since when you're in the ER you're typically in there for something really bad...

Why do they let any doctor work such long hours? They don't let airplane pilots do that. Why in the world would they let people in charge of your health work such long hours? Its a headshaker.
Cort, E.R. docs actually have decent hrs. It's the residents that the hospitals use as "slave labor"to help meet financial needs. And the "old guard" feels since they did it, the young docs training should. Many yrs ago when I was having active Crohn's disease my doctor gave me a letter to carry with me. I'd know I was having a massive hemorrage from physical evidence, but it would happen so fast my labs wouldn't show it. He told me "they never believe young women in the E.R." I remember in '69 refusing to leave the E.R. until they found him. Then all hell broke lose. I knew he had a subscription at Symphony and they tracked him down. He was not too happy (I heard him ripping apart a resident) and after that I carried a letter. Attendings never show up at the E.R. but he was a friend of the family and terrified of my mother.
You don't have to have CFS. I have a friend who was sent home after an auto accident with a broken neck. She was described in her report as elderly and hysterical. Her daughter, a nurse, brought her back. She was in a 'halo' and hospitalized for two months.
I have a great gastro. He believes in CFS. But he's also very symptom oriented and is stunned by the problems CFS causes. He doesn't do well with mysteries (I worked with him for ten yrs before he was my doc.) You'd be much better off just. telling him you've been vomiting for two days , can't keep fluids down, haven't voided, than to say you have CFS.

The shrink I see (who also totally believes in CFS) pioneered E.R. treatment for people with psych histories. NO ONE believed them when they described symptoms. He worked with residents, E.R. staff and even secretaries so they would get proper medical care. He always told me to get to my doc first if I thought I'd end up in the E.R.

Mike's terrifying problem had more to do with this country's medical state than the E.R. His weight alone put him at a risk for death. Pancreatitis can be very serious.
I have a friend who moved to Iceland and she gets the same rotten ER treatment over there. The doctors give her a sedative and send her home. That's their solution to everything. But when she came back to the States, it was the same. She actually presents alot of the time with HIV Negative AIDS, that's how bad her immune system is from CFIDS. She's gone in to the ER with jaundice to the point where her eyes were yellow. And the ER's first solution is always to give her a sedative when she isn't hysterical. Her bloodwork always shows alot of interesting things, but the doctors ignore it half the time. No one wants to be bothered with a CFIDS/ME patient.

They did throw a sedative at me when I went in for the thyroid problem. And some tylenol mixed in. Then they kept asking me how the pain was, and I was like, it's still a ten. Like that was going to do it. They also put me only a few feet away from a MERSA patient, which totally did give me anxiety. Just throw the person with the compromised immune system next to someone with MERSA. I was freaking out. ER's are bad places to be.

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