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

[Jonathan Edwards]

at about anecdotal evidence of great and permanent harm?

Just as important, yes.

 

[Lou B Lou]

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.

My list of psychiatric abuses of severe/very severe ME patients is factual - and incomplete. Those are just some of the mistreatments pwme have been subjected to when one medical party (can be GPs) involve psychiatrists as an authority, to 'treat' ME patients. Drs trying to enforce GET can become dictatorial. That's not theoretical, it happens. It happened to me.

I was helped to escape from my GP's sectioning obsession by my family, who removed me to another part of the country. If my family (sisters) had not intervened and helped me, and removed me from the medical sphere of that GP, I would 100% Not Be Here Now.

That list is not hypothetical and it is not "emotive". Very severe ME patients are helpless, even with informed caring family to advocate for them. And *we do not* live in a cosy world where all very severe ME patients have informed family to care and advocate for them. When faced with medical unreasonableness those very severe ME patients are helpless.

.

.

 

[hibiscuswahine]

Reading the translation of the whole article it does give quite a different picture - She requested ECT as she had a similar depressive episode that responded to ECT which also resolved her severe fatigue that was diagnosed as ME/CFS. She only had ECT due to her depression not because of ME/CFS.

Antidepressant medication was discontinued by her own doctor a few years earlier and was restarted nine days before admission (citalopram 20 mg daily). Until the relapse, the patient had been physically and socially active and had, among other things, practiced Zumba and had looked after grandchildren. The relapse was triggered by stress in her private life and anxiety in connection with Covid-19 a month and a half before admission, which neither required treatment nor was immediately followed by fatigue. At admission, the patient had a strong desire to be treated with ECT, which had previously had a significant effect. She had thus been admitted five times over the past 30 years with a similar picture characterized by pronounced muscular fatigue preceded by somatic illness and psychosocial stress. Before each relapse, antidepressants had been discontinued at least six months before the onset of symptoms.

In connection with the first episode, the patient was thoroughly somatically examined as a result of sudden and almost total immobilization. Neurophysiological examinations, lumbar puncture, muscle biopsy and CT of the cerebrum were all normal, and the diagnosis of CFS/ME was made. This led to early retirement and a life in a wheelchair for six years, during which the patient developed melancholiform symptoms and was admitted to a psychiatric ward. Medical antidepressant treatment was ineffective. She then received seven ECT treatments with an astonishingly positive effect and was discharged in good physical and mental health. At the current admission, due to the history and the unusual clinical presentation, an indication and no contraindication were found to start the patient on ECT treatment. After four treatments, she regained normal functioning and was described by the family as habitual.

/QUOTE]

 

[Tilly]

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.

But ECT has been used for a long long time so there is no excuse to not understand the impacts good and bad and why! We know the bias by mental health professionals is huge we need to ask the right questions and some very brave mental health professionals are asking the right questions.

What did the Rosenhan experiment teach us back in 1973?

It is not only ME, but look at autism, menopause, post birth hormonal changes all are put down to either behaviour or mental ill health. We have never seen a full picture of the lived experience or changed the understanding of mental health professionals, even with all the mistakes mental health has made due to their demanded bias opinion.

How many people have been made mentally ill due to the treatment they have been given? This is going to grow due to those who are being trained and are ill-equipped to provide services, as we see with the talk lines offered to those with ME.

The recoding of deaths again is bias, as it is accepted that some people with mental health will commit suicide, but it is a bias opinion and we need the clinical truth. We need to take emotion out of the picture and ask the relevant questions. Have we not learnt anything from stomach ulcers?

Look at the physical health before the mental health, and when mistaken diagnosis is given it must be logged. Health impacts on mental stability, you only have to meet someone drunk, diabetic or who has not slept well or on the other hand had a good meal, sleeps well or had hot chocolate to see how so many things impact out thoughts and feelings.

I have never read a mental health paper talking about trauma that includes happy people that drop down dead, or war torn countries that have happy go lucky people living in it. Without those inclusions, how on earth are they allowed to continue?

They must also report on the negative outcome to bring balance into the research. We need to find the right treatments for the right reasons and that can only be done by asking questions and keep a firm hold on accountability?

 

[Jonathan Edwards]

They must also report on the negative outcome to bring balance into the research.

When I read the ECT literature in detail at the time my wife received it, it was full of analysis of negative effects as well as benefits. ECT is not without problems but all this other stuff seems tome irrelevant. ECT is a physical treatment to the brain for physical disease, just as neurosurgery for epilepsy is. The risks are high, which is why you need at least two people to approves use, but I don't see this as anything to do with psychiatrists in particular. If ME/CFS is a brain disease it can be looked after by physicians and they could use ECT if it proved to dome good than harm. Psychiatrists need not be involved at all.

 

[Tilly]

When I read the ECT literature in detail at the time my wife received it, it was full of analysis of negative effects as well as benefits. ECT is not without problems but all this other stuff seems tome irrelevant. ECT is a physical treatment to the brain for physical disease, just as neurosurgery for epilepsy is. The risks are high, which is why you need at least two people to approves use, but I don't see this as anything to do with psychiatrists in particular. If ME/CFS is a brain disease it can be looked after by physicians and they could use ECT if it proved to dome good than harm. Psychiatrists need not be involved at all.

I think there is more work underway, which is good to see. Sadly not many answer the questions posed to them but a good start? It has taken such a long time and effort to get this off the ground.

As you read here other factors do matter and should always be looked at, it is the only way to see the whole picture and patients and carers need the whole picture.

https://www.uel.ac.uk/about-uel/news/2021/october/ect-fails-psychiatric-patients-says-uel-researcher

 

[Tilly]

The other people to talk to are legal firms. It is never used in data collection and perhaps we should start looking because having a good conversation with them and hearing their experience, gives you a whole new perspective on things. Nothing will be perfect what ever we do, humans are complicated but we have to widen some of our understanding?

In my experience I have had to do that, look at the angles and constantly ask the question WHY. It isn't something I am good at or enjoy, it is borne out of necessity like out debates are.

 

[Snow Leopard]

If ME/CFS is indeed neurological disorder, which lots of people claim, and we cannot find any structural or biochemical abnormalities.

We can't find anything that we refuse to look for.

No one has bothered to investigate the afferent nerves in ME/CFS with the exception of skin biopsies, which is not directly relevant to ME/CFS (it could be relevant to Fibromyalgia). Type III/IV muscle afferents and certain visceral afferents (and perhaps descending nerves regulating blood flow through the muscles as well) could be of particular interest.

Alan Light and colleagues have shown a minimal set of metabolites that lead to fatigue perception in humans, and have shown altered gene expression of the associated receptors of PBMCs post-exercise in patients in several studies, but the relevance of that to actual nerves is speculative.

In LongCOVID, differences have been noted in contractile responses of small arteries in gluteal biopsies.
https://pmc.ncbi.nlm.nih.gov/articles/PMC10236521/

For OI and POTS, Systrom still focused on skin biopsies, but also sampled sweat gland nerves. There was a big difference between patients and controls, but the impact of this was not discussed at all.

https://www.frontiersin.org/journals/neurology/articles/10.3389/fneur.2024.1476918/full

 

[Creekside]

fatigue perception

I hadn't considered that possibility before: that ME's "fatigue-like symptom" might be a misperception of normal levels of whatever signals the brain uses to identify fatigue. That would explain why no one has found clear signals of fatigue markers in PWME.

 

[Snow Leopard]

I hadn't considered that possibility before: that ME's "fatigue-like symptom" might be a misperception of normal levels of whatever signals the brain uses to identify fatigue. That would explain why no one has found clear signals of fatigue markers in PWME.

There is no "clear signal" of fatigue markers in the blood of anyone because the blood is not the right place to go looking.

Anyway, back to the research of Light and others:

The fatigue sensing afferents try to sense under a narrow and very specific combination of factors, a combination of heat (TPRV1, lowered pH (ASIC) and excessive spill over of ATP (P2X) into the extracellular space.

The purpose of detecting this has multiple outcomes

The sensation itself is not a stop signal, but rather warns of impaired performance, both subconsciously and also allows for better behavioural planning.

It also feeds back into the motor cortex, reducing excitability (this is "central fatigue"), the purpose of this means that greater upstream effort is needed to maintain the same force output (this is "central fatigue") and is also the primary reason for the higher sense of effort in ME/CFS patients.
This greater upstream effort also leads to a greater ventilatory effort, which helps reduce peripheral fatigue.

Increased feedback can thus have multiple causes including:

metabolic causes (including less efficient capillary flow leading to poorer oxygen extraction)
altered sensitivity of the peripheral afferents due to neuropathy, small fibre neuropathy can lead to increased sensitivity of the remaining nerves.
Some sort of alteration of the signal due to pathology in the brainstem or upper spinal cord - because the same error signal seems to show up in multiple parts of the brain.

 

[Mij]

Reading the translation of the whole article it does give quite a different picture - She requested ECT as she had a similar depressive episode that responded to ECT which also resolved her severe fatigue that was diagnosed as ME/CFS. She only had ECT due to her depression not because of ME/CFS.

A close friend who suffered from depression when no meds worked had ECT, she also had FM, it didn't help either. She had short-term memory loss and it was very frightening for her.

 

[Creekside]

This greater upstream effort also leads to a greater ventilatory effort, which helps reduce peripheral fatigue.

Would the lack of increased ventilatory effort when feeling "ME-fatigued" be reasonable evidence that it is not peripheral fatigue? I don't notice any increase in breathing when my ME is worse, and intentionally increasing my breathing rate and depth doesn't change my sense of "fatigue".

If I imagine those afferent nerves as sensors or processors in a vehicle, it's easy to imagine them giving false responses (turning on a warning light even though oil pressure or temperature is normal). A build-up of gunk, a particle blocking flow, a bad electrical connection, a cracked sensor; all sorts of possibilities. For ME, I can imagine a sightly abnormal level of some chemical, or a structural abnormality (cell or microtubule shorter or longer, the wrong fatty acid ratio in the membrane, etc) having the same effect. That could explain why I have multiple abnormal responses that are probably neurological, due to some cells in various regions of my brain not working correctly.

 

[Snow Leopard]

Would the lack of increased ventilatory effort when feeling "ME-fatigued" be reasonable evidence that it is not peripheral fatigue? I don't notice any increase in breathing when my ME is worse, and intentionally increasing my breathing rate and depth doesn't change my sense of "fatigue".

Unless you are doing reasonably intense exercise (>70% of mean age maximal heart rate) and measuring gas exchange, you probably aren't going to notice the difference.

Secondly, changing the breathing rate, eg forcibly hyperventilating is not going to change your sense of effort or fatigue at rest at all.



But back to the hypothesis of the brain, there are numerous mechanisms by which nerve/neuron excitability can be altered peripherally, spinally and in the brain.

"Sialic acid contributes to hyperexcitability of dorsal root ganglion neurons in rats with peripheral nerve injury"
https://www.sciencedirect.com/science/article/abs/pii/S0006899304012612

Having said all that, it is important to understand that similar to central sensitisation (which is a part of NORMAL pain physiology), fatigue sensation in healthy people is normally "sticky" in the sense that it continues to signal after they experience fatiguing exercise.

Any claim of abnormality, such that there is unusual peripheral or spinal or supraspinal sensitisation needs to be demonstrated, it cannot simply be asserted as a rational for a particular treatment without evidence.

 

[Tilly]

My list of psychiatric abuses of severe/very severe ME patients is factual - and incomplete. Those are just some of the mistreatments pwme have been subjected to when one medical party (can be GPs) involve psychiatrists as an authority, to 'treat' ME patients. Drs trying to enforce GET can become dictatorial. That's not theoretical, it happens. It happened to me.

I was helped to escape from my GP's sectioning obsession by my family, who removed me to another part of the country. If my family (sisters) had not intervened and helped me, and removed me from the medical sphere of that GP, I would 100% Not Be Here Now.

That list is not hypothetical and it is not "emotive". Very severe ME patients are helpless, even with informed caring family to advocate for them. And *we do not* live in a cosy world where all very severe ME patients have informed family to care and advocate for them. When faced with medical unreasonableness those very severe ME patients are helpless.

.

.

There is enough evidence all logged, the recording of Sophia Merza in the film https://voicesfromtheshadowsfilm.co.uk/welcome/reflections/ to state that it happens on a regular basis and not just in ME or very severe. They are still working on Carla and a few others that I know of. We also see this happening with those with Long Covid, all hidden in plain sight.

 

[hibiscuswahine]

Considering the treatment of pwME for many decades was mostly within psychiatry, some pwME would have been admitted to mental health units and some of those may have been given ECT as they had a severe depression diagnosis. I don't know the numbers. One would think if ECT had been a successful treatment for ME/CFS, lots of case studies/series would have been published showing efficacy. There are none, though this paper suggests it may have been effective, but in my professional opinion, one would have to question her diagnosis. But a lot more information would be required to look into that and that detail was not provided in the paper.

So, although I appreciate Jonathan's wish to keep an open-mind on treatments like ECT because we do not know the aetiology of ME. I would prefer that ECT remains an option for the severe psychiatric disorders it is used for now, rather than seeing it as a potential treatment. I think so many pwME have been harmed by psychiatry and psychosomatic medicine, I think it is best to concentrate on the plenty of other things being investigated.

 

[bobbler]

Considering the treatment of pwME for many decades was mostly within psychiatry, some pwME would have been admitted to mental health units and some of those may have been given ECT as they had a severe depression diagnosis. I don't know the numbers. One would think if ECT had been a successful treatment for ME/CFS, lots of case studies/series would have been published showing efficacy. There are none, though this paper suggests it may have been effective, but in my opinion, one would have to question her diagnosis. But a lot more information would be required to look into that and that detail was not provided in the paper.

So, although I appreciate Jonathan's wish to keep an open-mind on treatments like ECT because we do not know the aetiology of ME. I would prefer that ECT remains an option for the severe psychiatric disorders it is used for now, rather than seeing it as a potential treatment. I think so many pwME have been harmed by psychiatry and psychosomatic medicine, I think it is best to concentrate on the plenty of other things being investigated.

I seem to remember a news article in the times I think where Anthony David in an article fir a book probably entitled mysteries or something in once exampled case talked of an ME patient (this may have then been amended as ‘oh actually it wasn’t ME it turned out to be something else’ after publishing) who was catatonic or something similar and then having tried everything. Then ECT was tried and they apparently according to the article woke up for a short time and could communicate then slipped back each time. Of course if it was measured in unaware what the measures were of what it did to her long term health or situation but I remember reading it and being shocked


I think this YouTube was the same thing but an interview done after that news article. This case is at 19.51 and in this says it was pervasive refusal syndrome had been the diagnosis given