Case report: Effect of ECT on chronic fatigue syndrome 2024 Novakovic et al

Depression is a heterogeneous syndrome with a range of clinical presentations, the core of which is episodic low mood and energy. ECT is the first-line treatment for psychotic depression, but can be used regardless of severity if other treatments have failed, the current episode is long-lasting, or previous ECT treatment has failed [1]. Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a so-called functional somatic syndrome characterized by one or more chronic somatic symptoms that cannot be attributed to another known medical condition. CFS/ME is therefore a diagnosis of exclusion whose nosological status is uncertain. With the exception of pathological fatigue, there is no consensus on diagnostic criteria [2].

Medical history
A 71-year-old woman was admitted for recurrent periodic depression, manifested by extreme fatigue that spread to the extremities and required a wheelchair. She had previously been diagnosed with CFS/ME. Somatic causes were excluded by a normal physical examination without neurological findings and unremarkable extended biochemistry. There was no current somatic illness or established medical treatment. The baseline mood was not significantly depressed. Psychomotor speed and emotional reactivity were unremarkable. She did not appear cognitively impaired and did not present with symptoms suggestive of psychosis. She appeared mildly to moderately depressed

Open access, in Danish, https://ugeskriftet.dk/videnskab/effekt-af-ect-paa-kronisk-traethedssyndrom

 

I can't read the paper, but how can this happen is the question. If it failed before and the person was in the elderly bracket why would they try this treatment. This treatment is a first line treatment for psychotic depression? Well it had been going for years with no impact on good outcomes, so why are the authorities still letting this treatment keep going? I think the Drs in this case need to be questioned?

 

What I think it means is that ECT is still considered worth using if a previous course fails to produce lasting remission - fails in that sense. This was the case for my wife who had a severe psychotic depression. The first two ECT treatments produced rapid and dramatic temporary improvement but she slipped back. The third course left her completely well - for the subsequent 17 years now, at least.

In my view it is absolutely essential that ECT is not dismissed as a possible treatment either for depression or indeed very severe ME/CFS. For all we know it might work.

 

I'm shocked to hear you say that.

Where is the body of evidence for using ECT in very severe ME/CFS (or in any severity of ME)?

 

I'm an autistic gay man with ME/CFS whose insurance company used "damned if you do", cut you off, approach to force me into GET because "I wasn't trying hard enough". Their big pitch to sell it was that they weren't trying to get me back to work, just help me feel better.

My earliest childhood memory is a road trip with my family taking my father to shock treatments. My father was autistic. He spend years taking antipsychotics and being told he wasn't trying hard enough.

Years later, when my father was in hospital having his gall bladder out, the doctor happened to ask my father about his previous thyroid test. One of my father's autistic gifts was remembering numbers. When he told the physician the number the test was rerun.

My father was a different and much improved man after his very low thyroid was corrected.

ECT has been used to attempt to "fix" both homosexuality and autistic behaviors. It would be fair to say I have a high degree of skepticism.

 

There is none, but for all we know it might work. If there was anecdotal evidence of benefit I see no reason not to consider a formal trial in very severe cases.
Why is everyone shocked by ECT more than other things? It is a life saving treatment in the right setting.

 

Probably because, to those of us who know nothing about it, it sounds as dangerous as being struck by lightning, and has been used by psychiatrists, whose 'science' we have good reason to think poorly of. It sounds like kicking a faulty TV set to make it work.

[ETA] Just to be clear, I think that's the perception but from your account I'm guessing it's not the reality.

 

But ECT is no longer used in these situations because there was never any reliable evidence. The evidence for benefit in psychosis is clear. If people with ME/CFS are dying for reasons we do not understand then I do not see any good reason not to consider the possibility that ECT might help. We treat leukaemia by killing the entire immune system and hoping to replace it with a graft. If ME/CFS is a central nervous system problem then ECT might be of value.

 

Which, from my experience, often used to do the job! Or at least for ailing transistor radios.
Some psychiatric science is bad but pretty much all the biomedical science around ME/CFS is bad too. When people are dying it is important not to tar everything with the same brush.

 

True. Is there any reason to think it would work for ME/CFS, though, severe or otherwise?

 

Sadly my experience with a family member was not so good. To give a treatment without tracking all outcomes and collecting the data is wrong. To do it blind and without understanding how the brain functions while or after treatment is confusing to me. To not understand the changes it made for the better is problematic but more of an issue if things have gone wrong.

For those that loose their lives or are forced to have this treatment against their will and then have a bad outcome that is not recorded is also very wrong. The Inflamed Brain by Edward Bullmore and the Brain on Fire should give us other reasons to follow up on research and how we need to understand health in all its forms.

The brain on fire rang many bells for me sadly.

 

If ME/CFS is indeed neurological disorder, which lots of people claim, and we cannot find any structural or biochemical abnormalities then faulty central nervous system plasticity comes to mind as a possible site the problem. That is pretty much what we think occurs in psychosis too, even if the presentation is very different. So yes there is a rationale, but it is probably not enough on its own to justify a trial of ECT.

On the other hand I was greatly relieved when I was told that they wanted to try ECT on my wife because she was clearly going to die without something other than useless drugs. If a member of my family was dying of ME/CFS I might feel the same.

 

Just anecdotally, I had ECT while in the midst of the worst of my cannabis-induced psychosis, depression, and anxiety (and ME/CFS now that I know what it is). It had zero effect on anything.

What I did experience was waking up from anesthesia on the last session unable to move or (edit: voluntarily) breathe, and feeling like I was suffocating for a few minutes. Though, I doubt this is related to the ECT. I think either the anesthesiologist didn't properly dose the drugs or my body processed them strangely.

 

In almost all situations where we devise successful therapies there are major unknowns. When I studied B cell depletion in rheumatoid there were many things I could not access. But the risk seemed justifiable and hundreds of thousands of people have benefited.

I don't see ECT as any different, it is just an emotive topic. Some people do not respond. Memory loss is something that has to be accepted. I still have to help my wife re-access some distant memories. There nearly always re-emerge with talking and if not I suspect it may be the normal forgetfulness of the song 'I remember it well'.

If we had to know everything about the biology of a treatment effect nobody would ever have devised any successful treatments. Fluge and Mella tried rituximab in ME/CFS on the basis anecdote and hope and I think they were justified. I see ECT as potentially no different.

 

I think any of the brain stimulation methods, electrical or magnetic, have potential for altering brain function temporarily, and sometimes those temporary changes can result in long-term changes. While kicking or whacking a piece of electrical equipment can get it working again, it usually doesn't fix the problem (bad connection), although sometimes it does (physically knocks a shorting particle loose). If the problem is locking into an unwanted mode, then a "kick" of some kind can switch it into a different mode. When my aircard doesn't connect properly, turning it off and on again often allows it to set up properly. Aren't most of us familiar with rebooting our computers when they somehow lock up?

Hmmm, I wonder if "turning a brain off" temporarily might work in some cases. Whether that's anesthesia, chilling, or some other method.

For patients who have no other alternatives, why not try something that has low risk and has worked for some people? Of course, there are plenty of treatments touted that despite claims, lack any verifiable successes.

 

Helpless severe/very severe pwme have been -

* Forcibly sectioned

* Given antipsychotcs against their will

* Family refused visiting/all contact

* Family member (mother, 2 cases) threatened with also being sectioned when the family member tries to advocate for the ME patient, and insists ME is a physical disease. One example was Sophia Mirza's mother Criona Wilson (who placed all the paperwork confirming this on her online site)

* Cruelly treated whilst sectioned with staff putting their food out of reach of patients who cannot walk far enough to reach their meals

* Subjected to constant noise and light while hugely sensitive to it (it causes pain)

* Do we really want ECT added to the list of possible enforced 'treatments' on severe/very severe ME patients? When under a section the patients consent is not considered.

* Do we really want to give an 'ECT for ME' green light to trigger-happy psychiatrists?

.

 

But all those are emotive arguments based on the assumption that ECT would be used under section and that somehow it is a 'psychiatric' treatment. All disease is physical. ECT is a physical treatment, just like brain surgery for incurable epilepsy, which can restore people to normal lives.

My question would be do we want to shut out the possibility of doing trials on ECT if there is anecdotal evidence (and it would have to be good) of benefit when people are dying of starvation. Clearly more could be done to support them but continuing indefinitely in a mute state on a stomach tube isn't that great a future even so.

 

By this logic we should also consider heat therapy, open-ended antibiotics, exercise, and prayer. Each of these has been anecdotally reported to help - and pretty much without the psych repercussions of ECT.

Desperation is desperation, but it should not be the foundation of a therapy imo.

 

The argument was dependent on a whole lot of other things I had written which do to as far as I can see apply to that list!

 

What about anecdotal evidence of great and permanent harm? I've seen the harm it can do to severely ill pwME who are pressured to undergo it, and how it has negatively affected life for decades after.