9 Rounds of Electroshock Therapy. 6 Years Lost. All Because Her Doctors Got It Horribly Wrong.

John Mac

John Mac

Senior Member (Voting Rights)
“Nobody was listening to me,” she recalls. “I had all of these symptoms that had nothing to do with mental illness, which is not to denigrate the severity of mental illness. But I'd say to doctors, You're diagnosing me with being depressed, but that's not what it is. I had a desire to do things, but I couldn't. That's different than having no desire to interact with the world." She would repeat her symptoms over and over—heart palpitations, fevers, aches. Depression doesn't do that.
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Now in the hospital, her doctors suggested ECT, which is generally viewed as a last resort for severe depression and other mental illnesses (it does help some patients feel better). Courtney started observing her hallmates, some of whom were already receiving the treatments, searching for clues about what it might do to her.
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At this point she thinks she must have begged the doctors, again, to look beyond depression. Because one ordered a new battery of blood tests that turned up something interesting: elevated levels for Epstein-Barr (EPV), one of the most common human viruses and a cause of mononucleosis.

Many people get the virus in childhood, according to the CDC (Courtney probably first got it as a teenager), after which it goes dormant in the body. She remembers her doctors arguing about whether the finding was even significant, since elevated levels of EPV are common even in people who display no symptoms. But one psychiatrist thought it was worth looking into, and his persistence led to Courtney being diagnosed with myalgic encephalomyelitis, commonly referred to as ME/CFS, which is thought by many doctors to be related to EPV.
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https://www.cosmopolitan.com/health-fitness/a25362145/electroshock-therapy-misdiagnosis/
 
I knew someone who had electroshock for her (pretty severe) bipolar disorder.

Listening to her enthuse about being emotionally even for two weeks alongside "but I forget the whole day I get the electroshock and sometimes a little of the day after, but it's okay"...

It puts mental illness into perspective, that's for sure. What a person will do to themselves for a little relief.
 
JaimeS said:
"but I forget the whole day I get the electroshock and sometimes a little of the day after, but it's okay"...
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Well honestly, if this is all the side effects I'd get from that I would literally pay to be frizzled every two weeks if it meant I just had the ME without the emotional rollercoaster that seems to be an integral part of it. I don't have any idea what I was doing this entire week anyway - heck, I don't remember if I had breakfast today or brushed my teeth yet and that is how it has been most days for over a decade now.

Isn't there some more gentle way to achieve this though? I don't imagine you can do this stuff longterm without any unforseeable consequences... which can of course be said of 'having bipoler' as well but you know what I mean.
 
Philipp said:
Well honestly, if this is all the side effects I'd get from that I would literally pay to be frizzled every two weeks if it meant I just had the ME without the emotional rollercoaster that seems to be an integral part of it.
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Exactly. I can't think of any moderate or worse patient who wouldn't give up 3 days per month to 'have' the rest of the month!
 
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I once knew someone who had had electroshock therapy. I did not know her beforehand. Afterwards she was quite 'spacey'. She got us quite lost when she was driving one night. She would not believe me that she was going the wrong way even when I pointed out to her that some building were on the 'wrong' side of the street.
 
Good day to all,
I recently had a conversation with a physician who practices in the EU. This individual told me that electroshock is standard therapy in Germany and other countries for CFS. The doctor told me that antidepressants are given, stimulants and electroshock, as well as transcranial stimulation. This physician uses these treatments for CFS.

I was told that the results were very good and folks resumed their activities, but this was later qualified with the point that the treatments had to be repeated regularly. I was told the electroshock is done under anaesthesia.

This treatment was proposed to us. I later looked up the use of this treatment, and read that it is sometimes use in MS and catatonia and of course depression. We listened to this proposal and then carried on not at all tempted.

I wonder what others think. @Inara (is this true about the frequency of this taking place in Germany) @Jonathan Edwards (from a medical view...have you any thoughts?)
 
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Perrier said:
I wonder what others think. @Inara (is this true about the frequency of this taking place in Germany) @Jonathan Edwards (from a medical view...have you any thoughts?)
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As I understand it in the UK the view would be that electroconvulsive therapy (ECT) would be something to consider if it was judged that the 'CFS' was in fact a psychotic depressive illness appearing as ME/CFS. Otherwise it would not be indicated. From what I hear of Germany the situation may be less clear cut. If a clinician mentions 'transcranial stimulation' I would wonder if they are a fringe/alternative practitioner. As far as I know there is no such thing as evidence based transcranial stimulation in medical practice. (I assume they mean transcranial magnetic stimulation.) From Wikipedia it looks as if people are trying it but NICE says no evidence of efficacy yet.

I think in the UK the decision to use ECT routinely requires two opinions to agree but that may not always be the case.
 
Jonathan Edwards said:
As I understand it in the UK the view would be that electroconvulsive therapy (ECT) would be something to consider if it was judged that the 'CFS' was in fact a psychotic depressive illness appearing as ME/CFS. Otherwise it would not be indicated. From what I hear of Germany the situation may be less clear cut. If a clinician mentions 'transcranial stimulation' I would wonder if they are a fringe/alternative practitioner. As far as I know there is no such thing as evidence based transcranial stimulation in medical practice. (I assume they mean transcranial magnetic stimulation.) From Wikipedia it looks as if people are trying it but NICE says no evidence of efficacy yet.

I think in the UK the decision to use ECT routinely requires two opinions to agree but that may not always be the case.
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The doctor I spoke with was not 'fringe,' in the sense that this person is employed in a hospital. In Canada/USA ECT is not indicated for CFS, and no doctor would prescribe it. What this means is that in Germany (amongst the psychiatric community) CFS is considered a psychotic depressive illness. I was told that the transcranial stimulation was a sort of non invasive route of the electroshock, to be tried prior to electroshock. Yes, it is TCMS as you indicate. I am rather alarmed that electroshock is being so routinely used, when there is no evidence that ME is a depressive illness, and there is evidence to the contrary. This treatment destroys memory
from what I have read. I was informed that the patient is under general anaesthesia and remains in hospital for a number of these treatments. It has been administered to young people who go to school too. Is it not rather alarming that ME is being in some parts of the world treated as a psychotic depressive illness when there is so much to prove that it is not.
 
Perrier said:
This individual told me that electroshock is standard therapy in Germany and other countries for CFS.
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In Germany, CFS is mostly treated as psychosomatic /somatoform disorder -- bad enough. But I don't know of any patients diagnosed with "CFS" that were treated with electroshock. It's not mentioned in any guideline on somatoform disorders or fatigue either.

Antidepressants are standard medications in Germany for somatoform disorders as well as for MS related fatigue, but I don't think that, on a regular basis, psychatrists assess depression in CFS as being sufficiently severe to justify ECT.
 
MSEsperanza said:
In Germany, CFS is mostly treated as psychosomatic /somatoform disorder -- bad enough. But I don't know of any patients diagnosed with "CFS" that were treated with electroshock. It's not mentioned in any guideline on somatoform disorders or fatigue either.

Antidepressants are standard medications in Germany for somatoform disorders as well as for MS related fatigue, but I don't think that, on a regular basis, psychatrists assess depression in CFS as being sufficiently severe to justify ECT.
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I was told that there is no need to assess for depression in ME; electroshock was considered a treatment for ME, as well as stimulants in small doses. I was told by the physician practicing this that many patients are treated this way. I have no reason to disbelieve the individual speaking. I was wondering how widespread this was. From what you say, however, you do not see it done on a regular basis. I am rather rattled that with the ME clinic at Charite functioning at full speed, this illness is still seen as a somatoform disorder.
 
Perrier said:
The doctor I spoke with was not 'fringe,' in the sense that this person is employed in a hospital.
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Being employed in a hospital does not exclude being fringe. Hospital doctors prescribing non-approved treatments are much less common in the UK than they were 20 years ago but there is still variation. Being a 'medical device' I suspect, ECT may not be as regulated as drugs in whichever EU country. I have a feeling that unorthodox practices may be more common in Germany although I have always found German practice confusing in rheumatology. Maybe German psychiatrists do not have quite the equivalent of NICE guidelines and variation in practice is not considered so unusual. I still think that it would be surprising if ECT was formally approve for CFS in Germany.

Doctors are sometimes economical with the truth too.
 
A lot of bad information in this article. It gives the impression that the ME/CFS diagnostic situation is cut and dry (appeal to authority: IOM report) and that Epstein Barr titres have something to do with the symptoms. It also presents naltrexone as a legitimate treatment despite there being zero evidence for its efficacy.

What the article of course doesn't mention is the mountain of randomised controlled trials with objective blinded observer-rated outcome measures showing that ECT is effective for depression and we are treated to 2 scary anecdotes instead: one of a woman for whom it seems to have been prescribed when it wasn't indicated and another woman of unknown age and diagnosis wandering the halls of a psych ward in a forgetful state. The article also makes the bizarre claim that psychiatric disorders like depression can't cause symptoms like heart palpitations, fever, aches. They can and they do, as well as many other severe life-threatening symptoms like lying in a bed mute unable to hold your bowel and dying.
 
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