Discussion in 'Health News and Research unrelated to ME/CFS' started by Cheshire, Dec 21, 2018.
Peter White did not accept that pwME/CFS could have paralysis;
see RSM conference 2008 on this thread
I've said it before - and it still shocks me - but medical error is the 3rd leading cause of death in the US and ain't likely to be much different in the Canada, UK, and Europe. I understand Scandinavia may be more transparent.
Yet medical associations work hard to hide the data and the deaths and protect the doctors and government are often complicit in keeping things hidden.
Blaming psychiatric problems for physical illnesses has probably been going on ever since the idea of mental illness first arose in humans (whenever that was). The ancient Greeks thought that women were all hysterical because of those pesky wandering wombs they had.
Shocking, cruel, but standard medical practice for some.
We know this happens everywhere, not just in medicine - doesn't make it right though. People are accused of psychologically causing their physical health problems, even when the health situations are heartbreaking, or life shattering. Heaping cruelty onto misfortune.
So the way to avoid misdiagnosis of neurological illness seems to be in line with White's view - don't accept paralysis as a feature of chronic fatigue syndrome and leave it at that. I think White is very right in this respect in the sense that calling ME a 'neurological illness' may tempt general practitioners to dismiss neurological signs as 'just CFS or just ME'. It shouldn't but it sounds as if that is what has happened in these cases.
https://en.wikipedia.org/wiki/Flaccid_paralysishttps://en.wikipedia.org/wiki/Flaccid_paralysishttps://en.wikipedia.org/wiki/Flaccid_paralysis was the first major symptom of my illness. I regained the ability to walk, but other symptoms have persisted. Are you saying I don't have ME or CFS?
I see no reason to deny that you have ME/CFS but if you initially had a true paralytic illness (in the sense of muscle weakness due to motor neuron or muscle abnormality) then I think that has to be considered separately as a triggering event. Splenomegaly is not a feature of ME/CFS but is a common feature of infectious mononucloesis, which may occur at ME/CS onset.
This is what I initially had, but my case was not due to C. Jejuni (I also tested negative to a long list of usual suspects including EBV):
Chronic fatigue like syndromes are quite common post-GBS, according to the literature.
I've been thinking some more about the article in Post #1 since I read it. And I realise that my main feeling is one of astonishment that someone thought it was worth writing and someone thought it was worth publishing. From my point of view it's a bit like saying that "water is wet". Doesn't everyone know this is what doctors do? Doesn't it happen to everyone if they have a health problem that isn't visible? Or am I just one of the unlucky ones?
That’s statistic gets thrown around quite a bit. It has the feel of Facebook wisdom.
Think about it for a moment. Consider several major coroner ‘s categories:
all cancers together,
all heart attacks,
all respiratory failure,
all accidents lumped together - car crashes, elderly falling in the shower, industrial, drowning - every accidental death.
Now throw in Alzheimer’s and complications from diabetes. Just casually, how often do you hear of death by medical error vs any of the above?
Because that’s six and I think all of those are more common than fatal medical errors as a primary cause of death. If you have a complicated condition, there’s probably going to be some error somewhere along the way treating it. But you still would’ve died from heart failure, Alzheimer’s, or being run over by a jihadist with a rent-a-truck if you’d received no medical care at all, because those are fatal conditions.
I don’t know the details of where of that figure comes from, but it sounds a lot like urban legend and motivated reasoning. Sure, a hospital is a dangerous place, it’s somewhere you don’t want to be, unless the other option is not being.
A simple google search...
Only Heart Disease And Cancer Exceed Medical Errors As Causes Of ...https://www.npr.org/sections/.../death-certificates-undercount-toll-of-medical-errors
A study by researchers at Johns Hopkins Medicine says medical errors should rank as the third leading cause of death in the United States — and highlights how shortcomings in tracking vital statistics may hinder research and keep the problem out of the public eye.
There are all kinds of medical errors.
-prescription errors (wrong medication at dispensing, wrong dose, wrong timing, etc)
-Leaving sponges or instruments in the body during surgeries.
-hitting an artery during surgery
-errors in diagnosis (missed diagnosis, wrong diagnosis)
-understaffing situations, errors of neglect due to lack of time or attention
-errors due to dr working 24 hour shifts
In our case, it is my opinion we are facing errors in judgement, lack of curiosity, lack of education, lack of science and inability/unwillingness to dig deeper.
Dr. Google has also said that we have Yuppie Flu, are narcissistic, have a hysterical disorder for which we need CBT and GET. The npr piece and a hundred others were simplifications of one journal article, which itself was done via aggregation of existing data rather than direct observation and counting.
Consider that about 700K people die in hospitals (USA), ~250K of those dying from errors is an extraordinary claim. Not impossible, but not something to be accepted based on a desk and database exercise.
The cited paper itself reveals desk-bound reasoning "Because of prior work with Trigger Tools and the belief that ultimately all adverse events may be preventable, we did not attempt to evaluate the preventability or ameliorability....". Uhhhh, no.
I'll leave it to an oncologist who does not have my brain fog to dissect that bit of media-echo effect, here:
@Sisyphus, I can only refer to Germany where medical errors aren't recorded properly. E.g. there are ways to speak away a medical error, or just to redefine it so that it doesn't have to be counted. From judicial view, it is very difficult to prove a medical error. That doesn't mean there wasn't one. There is no statistic in Germany. Medical errors reports go via the "Ärztekammer", i.e. association of doctors, which isn't independent, non-surprisingly; they want to protect their kind.
It is VERY difficult to find numbers about medical errors. But if you look at anecdotes, listen to lawyers, look at coroner's reports (or even TV shows), and look at organizations, and if you keep in mind how officials (like the medical association) handle medical errors, it can be seen that medical errors are a problem indeed that is trivialized.
You make an excellent point. Some errors disappear in our system as well, and the problem is far from trivial. I had that experience myself, but was alone and too brain-fogged to follow up. OTOH, when you have something as complex and subtle as a mammal, never mind a human which is broken in some way, attempts to improve the situation won't always work. It isn't auto mechanics, where specific things are broken and can always be fixed, if you replace enough parts.
We have the expectation that medicine can fix stuff that's wrong. I'm just a simple caveman, but as I understand it what medicine can do is that some of the time it help a body heal itself. For many common maladies, it works well enough often enough that it seems to 'just fix stuff' - but that's recent and it's not going to happen every time.
There's a great deal medicine has no clue about, and of that some where it has no clue that it has no clue. That's us. Another class is conditions which it can sometimes fix, but mostly not - such as cancers, which will probably never be totally curable as they're a basic condition of getting old. There are the attempts to fix things which are dart-throwing exercise, like antidepressants; these seem to work some of time but mostly turn the pt into a medical dartboard. Obviously there will be errors; like kayaking on rapids, Nature can always overpower your boat.
People who have something medicine can fix should count themselves lucky.
I agree that medicine wants to give its best. It can't do wonders. But medical errors are about doing errors that could have been prevented if common state of the art had been applied.
The Hippocratical Oath goes even further.
Most of medicine wants to give its best, most people went into it because they had a desire to heal and help, they could have gone on management track instead. That’s by far the mqjority. Some just don’t care, etc. etc. I had a little bit of the latter experience as well.
I also have paralytic episodes. They are not due to muscles ( I got tested properly by Cleveland clinic). I do not have EBV active currently ( tested properly)
I also have the shakes ( kind of sizures but not a seizure).
I am VERY active for a Cfs patient. And I had an episode 2 days ago.
I crash, loose all faculty of speak and hear so I go to sleep unable to be woken up. If they do succeed on waking me up, I am awake but unable to move, speak or anything until
My body decides to move.
The shakes I have found out is a post syncope symptom but for some reason is not recognize on ME since it is a known OI symptom.
I do have POts so the paralysis may be due to that and not ME per say. But since they come with my crashes I think is ME.
I have two friends with ME who also suffer from periodic paralysis.
One of them suffers from neck-down paralysis, along with decreased ability to use facial muscles. She communicates using eye movements during these episodes.
The other has episodes of both waist-down paralysis and neck-down paralysis, with the waist-down paralysis being slightly more common.
In both cases, the periodic paralysis developed *after* falling ill with ME. And in both cases, the paralysis was bilateral and flaccid.
One of them recently saw a top specialist in periodic paralysis, who said that her paralysis was not genetic, and diagnosed her with “secondary periodic paralysis”. He said that, unfortunately, we know very little about secondary periodic paralysis, except that most patients are misdiagnosed with a “functional neurological disorder” and referred to psychiatrists.
Separate names with a comma.