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

[rvallee]

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?)

WTF? This is completely insane. Holy massive lawsuits, Batman.

 

[Perrier]

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.

Yes, they don't speak the truth often. But I asked about whether it was approved in Germany. The physician said that ECT is used in many parts of Germany. The physician struck me as very conservative person, and the sort who would not deviate. The person was on the younger side too, but gave me the impression it was all very much accepted and of course recommended it. In side, my heart did a somersault.

 

[Perrier]

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.

I suspect ECT is not 'formally' approved. The term that was constantly used in the conversation was "off label," but "commonly done."

 

[Alvin]

WTF? This is completely insane. Holy massive lawsuits, Batman.

This would be almost impossible to win, the "experts" claim success, patients usually don't complain and the experts are acting in "good faith". There is "no harm" committed here...

 

[Jonathan Edwards]

I suspect ECT is not 'formally' approved. The term that was constantly used in the conversation was "off label," but "commonly done."

That to me is seriously worrying. I think in the UK a doctor might well go to jail for using ECT off label - at least be struck off. Certainly for something like ME/CFS. Maybe German psychiatry is more unregulated.

 

[rvallee]

This would be almost impossible to win, the "experts" claim success, patients usually don't complain and the experts are acting in "good faith". There is "no harm" committed here...

Oh it will take years but hindsight has a way of resolving ambiguity.

No one will be personally responsible, of course, but it will be costly.

 

[sea]

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.)

In Australia there are 4 psychiatric hospitals that I know of, and there are probably more, using TMS (Transcranial Magnetic Stimulation) as a treatment option for treatment resistant depression. I wouldn’t call it a fringe treatment here. My daughter’s psychiatrist has several clients that find it helpful though it has not been useful for my daughter.

 

[Alvin]

Oh it will take years but hindsight has a way of resolving ambiguity.

I wish
You are technically correct but waiting generations or centuries is not very efficient

No one will be personally responsible, of course, but it will be costly.

Its quite likely a court would rule for the doctors, you typically need an explanation to get something resolved the right way. MS was not declared non psychosomatic until there was a test that could show the physical damage. We are not there yet, we have no biomarker, no disease mechanism and lies are still on the books and unretracted.

 

[Philipp]

For what it is worth, I personally have never heard of any patient being treated with real ECT for their ME/CFS in Germany. I am not all that well connected with our community and have zero experience with people who were sectioned or forced into the perhaps more misguided parts of our rehab system, but I do think that would have come up at some point.

They were probably not talking about TMS-devices - why would one need to be under anaesthesia for that...

CFS as a term is still woefully misused all the time (to the point where it means something different to every person in the medical system using it) and is usually not understood as a separate entity but rather a collection of symptoms that probably usually should include some kind of feeling a bit off, depending on the mood of whoever decided to use the term. So it is very much possible that whoever wants to treat 'CFS'-patients with antidepressants/stimulants/ECT does not realize there is a distinction between ME/CFS and the fatigue that is experienced in depressive or similar patients.
As far as I know, we do not have any guidelines or approved treatments for ME/CFS at all since the last 'Leitlinie Müdigkeit'-document (which contained a small sub-chapter on what they called CFS if my mind does not play tricks on me, I think we discussed this somewhere on the corresponding thread) was clarified to not apply to or has no real bearing on ME or postviral fatigue G93.3 type CFS. We still do not really register with most parts of medicine.

If it is true that ECT is regularly used without formal evidence on pwME... well, I would not be surprised actually. German psychiatric and psychosomatic medicine as I perceive it has the same problems this field has all over the world, but as far as I can see there is no discussion or effective oversight from outside their own field so I can see some doctors using whatever they guess at as being sensible without repercussions.
The biggest roadblock is usually the insurance company and the people working there seem pretty hit-or-miss when it comes to covering costs of treatments. As long as you don't go over some weirdly allocated budget you can apparently do mostly what you want, if you start too much money it matters little if the patients needed the interventions. However, I do not know if any of this applies to ECT so this may be entirely off-point.
Our Gesundheitsminister recently made waves trying to outlaw conversion therapy for homosexuals (which has never worked, ignoring the fact that it seems misguided to think it would be necessary) and it occured to me that there should not be a need to make this illegal because it should never have been deployed in the first place. But the institute we have for quality control does not seem to do regular examinations for all types of interventions since it does not have the necessary resources to do so. I don't know what else is done to establish safety and effectiveness, but I am by no means knowledgable on this subject. In any case, if we do have quality control for therapist-delivered interventions (I assume ECT is counted among those?), it sure is lacking in effectiveness.



I may be completely wrong on everything I just wrote, so please liberally use all the pinches of salt and whatnot on this post.

 

[Jonathan Edwards]

I may be completely wrong on everything I just wrote, so please liberally use all the pinches of salt and whatnot on this post.

Your comments are much appreciated @Philipp. It is hard to get the facts about all this without having detailed inside knowledge within the medical specialty. I regularly get things wrong about the situation in the UK but I think we are getting some sort of perspective on what the situation is. The old tradition of 'clinical freedom' whereby doctors, even in government hospitals, can do what they like if they can get away with it has not died. I have a suspicion policing in the UK may be a bit tighter than Germany but it may well vary from specialty to specialty.

What seems almost certain is that the use of ECT for CFS originally mentioned to @Perrier was outside any formal approval.

 

[Philipp]

It is hard to get the facts about all this without having detailed inside knowledge within the medical specialty.

That is so very true! We probably would have to talk to someone who does actually use ECT and let them explain the situation to us. If they are indeed using classic ECT on pwME I wonder why I have never heard of clinical trials proving they are safe/effective. There is a lot of talk about how strict the requirements are supposed to be but I would be very interested to find out whether we are dealing with a few off cases flying under the radar oder a systemic problem with approval.

Going off my personal experience, the people trying to treat their patients here would probably be well-intentioned, but simply lacking a coherent framework to justify the treatments they offer.
The kind of doctors who do not simply send us away (which, depending on the situation, may actually be the correct thing to do usually since no one knows what to do to help us) tend to fall into two broad categories. One is genuinely trying to be helpful and willing to try anything they can think of (as long as the insurance company does not stop them), but basically guessing at what treatments to try without evidence. The other is people being weirdly dismissive, but liberally sending you down the CBT/GET/Antidepressant&Stimulants-path, again without evidence. I can see there being a overlap here because both would potentially treat someone with ECT since the mistake of applying treatment without evidence is, of course, the same.

I suspect that the first kind is seen as fringe by their colleagues, while the second type is simply acting within what is deemed acceptable by their field. Which kind of makes sense since we are not perceived as a specific group of people, but rather 'those other patients'. So it raises the question what the actual requirements for applying ECT are and if they were subverted. If there is no formal approval required, we have a problem. If there is, but it can be circumvented, we have a problem. If these cases just pass with flying colours, we... well. Something is worrying here.

 

[Perrier]

That is so very true! We probably would have to talk to someone who does actually use ECT and let them explain the situation to us. If they are indeed using classic ECT on pwME I wonder why I have never heard of clinical trials proving they are safe/effective. There is a lot of talk about how strict the requirements are supposed to be but I would be very interested to find out whether we are dealing with a few off cases flying under the radar oder a systemic problem with approval.

Going off my personal experience, the people trying to treat their patients here would probably be well-intentioned, but simply lacking a coherent framework to justify the treatments they offer.
The kind of doctors who do not simply send us away (which, depending on the situation, may actually be the correct thing to do usually since no one knows what to do to help us) tend to fall into two broad categories. One is genuinely trying to be helpful and willing to try anything they can think of (as long as the insurance company does not stop them), but basically guessing at what treatments to try without evidence. The other is people being weirdly dismissive, but liberally sending you down the CBT/GET/Antidepressant&Stimulants-path, again without evidence. I can see there being a overlap here because both would potentially treat someone with ECT since the mistake of applying treatment without evidence is, of course, the same.

I suspect that the first kind is seen as fringe by their colleagues, while the second type is simply acting within what is deemed acceptable by their field. Which kind of makes sense since we are not perceived as a specific group of people, but rather 'those other patients'. So it raises the question what the actual requirements for applying ECT are and if they were subverted. If there is no formal approval required, we have a problem. If there is, but it can be circumvented, we have a problem. If these cases just pass with flying colours, we... well. Something is worrying here.

Thank you Philipp for your interesting posts. I spent one hour with this physician, discussing ME. I did not, foolishly, ask if there is official approval for the use of ECT. I was just told that in this treating physician's experience the results were good, if there were antidepressants, and if needed some stimulants, also included in the treatment. It was stated that the treatment needed to be repeated. As I stated, I was told this ECT was done in hospital, the people stayed there, and had the shock treatment under anaesthesia. I was told there was no hardly any movement seen in the patient when the shock was administered. I did not (again foolishly) ask how many patients this physician had treated but I had the impression it was a few. Also, I was told that lithium is tried, in small does for these fatigued patients. Germany, from my understanding, is not alone according to this physician in using this to try and 'help' the fatigued patients.

It seems to me that the nano needle test, if it is possible, should be out there as fast as possible.