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

Chronic fatigue syndrome in the emergency department

https://www.dovepress.com/chronic-f...ergency-department-peer-reviewed-article-OAEM

Purpose: Chronic fatigue syndrome (CFS) is a debilitating disease characterized by fatigue, postexertional malaise, cognitive dysfunction, sleep disturbances, and widespread pain. A pilot, online survey was used to determine the common presentations of CFS patients in the emergency department (ED) and attitudes about their encounters.

Methods: The anonymous survey was created to score the severity of core CFS symptoms, reasons for going to the ED, and Likert scales to grade attitudes and impressions of care. Open text fields were qualitatively categorized to determine common themes about encounters.

Results: Fifty-nine percent of respondents with physician-diagnosed CFS (total n=282) had gone to an ED. One-third of ED presentations were consistent with orthostatic intolerance; 42% of participants were dismissed as having psychosomatic complaints. ED staff were not knowledgeable about CFS. Encounters were unfavorable (3.6 on 10-point scale). The remaining 41% of subjects did not go to ED, stating nothing could be done or they would not be taken seriously. CFS subjects can be identified by a CFS questionnaire and the prolonged presence (>6 months) of unremitting fatigue, cognitive, sleep, and postexertional malaise problems.

Conclusion: This is the first investigation of the presentation of CFS in the ED and indicates the importance of orthostatic intolerance as the most frequent acute cause for a visit. The self-report CFS questionnaire may be useful as a screening instrument in the ED. Education of ED staff about modern concepts of CFS is necessary to improve patient and staff satisfaction. Guidance is provided for the diagnosis and treatment of CFS in these challenging encounters

 

There has been a couple of publications regarding this paper:
(i have not fully read the articles so cannot recommend them)

https://medicalxpress.com/news/2019-01-perceptions-chronic-fatigue-syndrome-emergency.html

https://www.painnewsnetwork.org/sto...ue-patients-feel-disrespected-in-hospital-ers

 

https://www.thesun.co.uk/news/81656...tient-all-in-their-head-doctors-dont-believe/

 

I remember participating in this study via electronic questionnaire.

While i have not checked out the paper yet, I wanted to mention a few different issues encountered when showing up in ED.

- problem is related to ME ( pots, chest pain, dizzy, dehydrated, etc) - doctor does not understand what the problem is, vitals are fine, EKg is fine, patient is sent home or triaged, what ever, ususally nothing is done.

- problem is unrelated to ME but because of the ME symptoms are discounted as being ME. For instance gallbladder issues. Blood clots. Infections. Accident. Fall. Broken bones. Sometimes disclosure of ME makes matters worse.

-patient has no GP and uses ER when issues arise because there are no other options. ED hate when this occurs, but what is the person to do?

Anyhow. Just a few comments.

 

What a useful paper!

I'm interested to know what folks make of the CFS questionnaire that they used.

 

Merged thread

Daily Mail: 'It's all in your head': Half of patients with chronic fatigue syndrome claim they are dismissed by doctors who say the illness is psychological

https://www.dailymail.co.uk/health/article-6580873/Half-patients-claim-dismissed-doctors.html

Almost half of people suffering with chronic fatigue syndrome (CFS) have been dismissed by doctors who claim their illness is psychological.

Scientists have warned there is a 'profound' lack of understanding of the condition, also known as ME, in hospital settings.

Around 40 per cent of patients avoid going to A&E in fear they won't be taken seriously because of claims it's 'all in their heads', a study found.

The Georgetown University Medical Centre study is the first known investigation into how CFS is treated in the emergency department.

It suggests the majority of patients are not receiving proper care, or being misdiagnosed with something else…

 

It's got to the point these days that I am so worried about the reaction I will get from the medical profession for any issue at all that I avoid them at all costs. I would describe it as a phobia of doctors. It's got so ridiculous now that in November last year, when I cut my finger badly while chopping vegetables, I debated for ages about whether the injury was severe enough to warrant stitches. (With hindsight, it was.) In the end I decided that what was likely to happen was me sitting in A&E for 6 - 12 hours, then being told that I was wasting their time, my injury was trivial, and "Go home, you stupid woman", and so I didn't bother with stitches and decided on caring for this cut myself. The result of this fear of the reception I would get from doctors is that I got an infection, needed antibiotics, and over 7 weeks later my finger still hurts (although it is still improving). I still haven't seen a doctor though - I saw a nurse at my surgery who was able to prescribe.

But there are other issues that are a lot more serious than a cut finger. I get chest pain on occasion and its been coming and going for years. I ignore it because it was looked into a few years ago and nothing was found to be wrong. So, how am I supposed to know when chest pain is serious? I could end up becoming a "frequent flyer" in A&E if I reacted to every episode of chest pain, and that would make my situation even worse. The same problems arise with the pain I get elsewhere. When do I see a doctor about it? It's been investigated and dismissed already. (This is a rhetorical question, I'm not asking for advice.)

I remember two relatives who didn't have health problems of the sort that I do. Neither were "frequent flyers". One had ovarian cancer which wasn't found for a year, her pain being dismissed as depression because they checked her uterus with a hysteroscopy and it was fine. (Think about the logic of that...) She looked like a skeleton with skin on by the time she was diagnosed. The other had lung cancer, coughed and coughed and coughed for 6 months, and lost 50lbs because the cough made her vomit, before finally being thoroughly tested. Her problems were put down to asthma.

I'll never forget the suffering of those two relatives. It seems that nobody and nothing is worth taking seriously, because all patients are imagining their symptoms, no matter how bad they are.

 

One problem with these online surveys is that the diagnosis is not checked by a specialist. It is possible that some of the participants had been diagnosed (for example by their GP) as having ME/CFS while they have a different but yet unrecognized illness. I wonder if we should see such studies as valid.

One could say that most studies still use the Fukuda-criteria and that these aren’t exactly a tight selection process either. There may have been a selection bias by using an online questionnaire but the patients that are able to go see one of the few ME/CFS experts in the US are probably not representative either. And one upsides of using the online ME-community is that you can get much larger numbers in studies, as research by Leonard Jason has shown.

So I’m not sure what to make of this question. Do the perks outnumber the downsides of online surveying? What do others think of this?

PS: what horrible titles the sun and dailymail use. It's like they get it wrong on purpose.

 

Only half? Those numbers seem generous.

It depends on how the patient is perceived. I went to the ED twice, once for dysautonomic symptoms (which I wasn't aware for years were even a thing and pretty much don't exist as far as my health care system is concerned) and the other for abdominal pain that left me unable to eat for 2 weeks.

When visiting for the dysautonomic symptoms, I would say I was taken seriously, but the investigation was strictly cardiac and when I left with a clean check nothing else happened. So I wasn't dismissed, but I wasn't helped either. I had suddenly lost consciousness at home a few days earlier, something which is always met with a shrug whenever I mention it. Apparently that's... normal?

I'm not sure I'll ever get an explanation but I'm pretty sure I had a pseudobulbar episode, which wasn't taken into account. I wasn't entirely dismissed, but most of what happened was. Is that proper medical care? Depends on the framing. It definitely wasn't helpful to me.

When I went for abdominal pain I was given a placebo and told to go away. ED is not the right place for that to be fair but when you can't eat and don't have a GP there isn't much else to turn to.

In all but one experience, the very best case I got was "I believe you but there's nothing I can do", which isn't quite true when it leads to disability. That's not really being dismissed as "all in my head" but it's a distinction without a difference.

It's still a very bad portrait but it seems very rose-tinted, a very best case scenario.

 

Thank you @Milo for posting this. As you say @Michiel Tack, this study may not be specific enough to pwME in its methods, but boy, this topic is extremely relevant to our lived experiences!

If pwME want to risk being psychologically brutalized go to hospital, and/or the emergency ward.

I've noted some of my hospital experiences on other threads. A couple additional experiences I've had are the "I'm tired too" retort from an emergency ward nurse, and "well at least this is real" from an ER doctor checking out a visible sign /symptom for me.

At the risk of repeating myself, I will add my most troublesome hospital experiences during a brief stay for day surgery:

1) being lectured re sleep hygiene (presumably as a cause of my "cfs"),

2) being
treated rudely, as it was assumed "cfs" is caused by deconditioning. Later, surprise to see my BP is very good.

3) yelling my name, and that I have "cf" across a large room with others present

4) saying a negative comment about my appearance - this after surgery and being in a recovery room

I am always concerned about seeing any health professional due to the horrible stigma that surrounds ME. I may try to ward off their negativity by providing government info on ME, but this may backfire, and make them even more hostile. How dare I, a lowly patient assume I can tell them anything.

 

I fainted at a large social gathering a few years ago, and was taken by ambulance to the ER. I had been waiting for surgery to fix a very painful condition, and was in much pain when I fainted. I do have terrible OI, but I think the pain added to the whole problem. That encounter did go OK, because I had a verifiable health problem that required surgery.

What was odd, was being taken for an X-ray, and while standing there feeling faint again - telling the two nurses who were attending that I was feeling faint again, and being completely ignored - they didn't acknowledge my faintness, and just kept chatting between themselves.

 

EurekAlert: Perceptions of chronic fatigue syndrome in the emergency department

 

Science Daily: Perceptions of chronic fatigue syndrome in the emergency department

 

I seem to recall filling out their questionnaire. Useful study.

My ED encounters (for what were OI flares in hindsight) have been uniformly negative, encountering people who ranged from criminally stupid or lazy to smart and compassionate but having no knowledge whatsoever of dysautonomia. It's as if this problem does not exist in medical schools even though it afflicts millions of people. If ED staff could just learn something as basic as to take BP while the patient is standing it would probably greatly reduce the useless cardiac workups and damaging diagnoses like 'it's nothing'. If a young woman is presenting with 'heart symptoms' chances are it's dysautonomia and doing a useless EKG and chest x ray for the zillionth time is not going to get any closer to a diagnosis.

I haven't gone near a medical professional in 5+ years. I'm worried that one day I will drop dead of something treatable because I simply cannot go back, the experiences were just too bruising.

 

This article noted exertion and alcohol intolerance as important signs re ME.

Sensitivity to alcohol for pwME has been noted for decades. I know not every pwME has alcohol intolerance, but I think this should be formally studied to find out roughly what percentage of pwME are alcohol intolerant.

Instead of waiting for the possible one magic biomarker, why not combine some, including alcohol intolerance?


I hope the Timbol, Baraniuk study is just the start of investigating ER and hospital staff attitudes to ME ("cfs") and pwME experiences.

I also hope ER staff everywhere receive appropriate training about ME - soon!


I avoid going to see any health professionals whenever I can. My reluctance to have medical consults once resulted in slowing down the process in finding out about a serious condition. I thought it was something less serious, I could deal with myself, as one physician I consulted much earlier on, had led me to believe this. The multiple medical goof ups that followed my first consult about this issue delayed any effective treatment for well over a year.

 

I am so sorry, @Arnie Pye, about your, and your relatives' experiences. My reluctance to engage with medical personnel has prolonged one serious health problem. I have had so many negative experiences due to ME, it's a nightmare engaging in that arena.

I wonder how many women with ovarian cancer are dismissed? How many are told it's something much more trivial? I know this happens; how often does this occur? Ovarian cancer is an extremely serious cancer. Nothing to fool around with, and yet women with this dire disease get a pat on the head, and told to go home.

And, how many times has imaging or other testing come close to the area that should be investigated, but missed? I had a very elderly relative who cracked her pelvis in a fall. Her hips were X-rayed, and not her pelvis. She was forced to walk, and her pain and protestations were dismissed.

 

A recent (last month) article on the issue :

https://www.independent.co.uk/life-...ment-symptoms-test-women-health-a8693891.html

Article continues at the above link.

In the case of my relative they only diagnosed the cancer when it metastasized. She was given a hysterectomy which made her last few weeks even more painful than before. She collapsed in the waiting room on the day she went for her first chemo (she was never actually given any chemo as a result), and died less than 24 hours later.

 

Ironically, rather than being the attention seeking hypochondriacs they are sometime caricatured as, a real issue for ME/CFS patients is the degree to which their experience with the medical profession eventually makes them averse to contact with it. (It certainly has in my case.)

It's all but certain that this translates into potentially life-threatening delays in the diagnosis of otherwise treatable conditions entirely unrelated to ME.

Just another "dividend" of decades of dismissive attitudes toward ME/CFS.

 

Exactly @Forbin!

 

That is so sad, @Arnie Pye, and outrageous medical treatment!

Thank you for the link to the article.

My elderly relative who was forced to walk with a cracked pelvis died a few days later from a clot that had travelled to her lungs.
I was told this was likely due to the cracked pelvis.

I know of a woman who complained of symptoms that were dismissed. Her leukemia was only discovered with a visit to the ER, however she died less than a week later.

I wish none of these types of situations would ever happen again.