Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Leading to Assisted Suicide in a Patient in Her Late 30s: A Case Report, 2026, Opala et al

[Nightsong]

Abstract:
A patient in her late 30s developed severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) following an Epstein-Barr virus infection. No distinct autoimmune or autoinflammatory disorder could be identified as the underlying cause of her symptoms, as the observed constellation of cytokine elevations (IL-2, IL-6, and IFN-γ) was not consistent with any known or established disease entity. Despite comprehensive multidisciplinary treatment over two years, including medical, psychological, and rehabilitative approaches, her condition deteriorated, and treatment-related hypersensitivities emerged. The severity and progressive nature of her symptoms, compounded by the absence of effective therapeutic options, ultimately led the patient to pursue assisted suicide.

Link | PDF (Cureus, May 2026, open access)

 

[Amw66]

A very hard post to like.
When will the penny ever drop ? - multidisciplinary treatment and rehab are counterproductive at best and harmful.
Where s the accountability?( rhetorical)

 

[Amw66]

Worth a read- a lot of interventions tried including H.E.L P for microclots, physio etc

"She was under outpatient psychiatric care and underwent detailed psychometric testing, which revealed 4points on the Patient Health Questionnaire-9 and 10 points on the Beck Depression Inventory, indicating no evidence of depression. She scored 20 points on the David Bell scale and 58 points on the Fatigue Symptom Inventory, which demonstrated moderate to severe impairment of daily function due to fatigue, as well as20 points on the Pittsburgh Sleep Quality Index, revealing poor sleep quality."

" A trial of physiotherapy was undertaken, but her energy limits were frequently exceeded, resulting in repeated crashes and increased muscle pain. Furthermore, the patient commenced psychological support,attending weekly sessions; however, she often encountered a lack of understanding from healthcare personnel at all levels."

So very sad.

 

[NelliePledge]

A very hard post to like.
When will the penny ever drop ? - multidisciplinary treatment and rehab are counterproductive at best and harmful.
Where s the accountability?( rhetorical)

Yes very hard to like but important to have this on public record

 

[BrightCandle]

The religious application of all this exercise and CBT is literally killing patients and there is no sign here they understand that they were the ones that made the patient so badly worse. Having invalidated this patients own experiences, brainwashing them on the cause and then worsening them so badly. Where is the accountability? A patient has died due to their "care", that is manslaughter.

 

[Sean]

" A trial of physiotherapy was undertaken, but her energy limits were frequently exceeded, resulting in repeated crashes and increased muscle pain. Furthermore, the patient commenced psychological support,attending weekly sessions; however, she often encountered a lack of understanding from healthcare personnel at all levels."

They killed her.

 

[rvallee]

Despite comprehensive multidisciplinary treatment over two years, including medical, psychological, and rehabilitative approaches, her condition deteriorated, and treatment-related hypersensitivities emerged

Odd to put this there. Politics, I guess, like giving tribute to the king, or a sycophantic turn of the board stroking the ego of the chairman, it's just expected. Why would that prevent any such thing? There is plenty of evidence that it actually makes it worse and zero evidence that it would prevent any of this.

The fact that this is all entirely ignored is so deeply shameful, as black a mark on the medical profession as an "otherwise outstanding person" moonlighting as a serial kidnapper who chains people them in their basement. There should have been many studies already, examining the factors leading to those deaths, how many and what circumstances. So many people, so young, dying of an illness that isn't even fatal, more often than not by suicide. It's rare for moral issues to be so black and white, so obviously wrong that no one who doesn't protest against this evil way of doing things is at best guilty of condoning mass cruelty and manslaughter.

But it's entirely impossible to stop for now. Mostly because everyone involved expects, sadly correctly, that they will never face consequences. Impunity is what too often fuels disasters. Knowing that no matter how horrible the consequences of their actions, "it's not personal, it's just business".

Disgusting.

 

[Joan Crawford]

From the paper: "Cognitive behavioral therapy with pacing and graded exercise therapy (GET) was recommended to facilitate
a more comprehensive assessment of her energy balance and, by extension, enhance her overall
functionality. However, the use of GET in severely affected patients with ME/CFS remains controversial due
to possible symptom exacerbation in severely affected patients [11]."

Reference 11 is NICE. They clearly did not read it or understnad what NICE were saying.

Sad.

 

[SNT Gatchaman]

The patient needed help with all daily activities, including personal hygiene. She could barely eat, needing antiemetics before each meal.

Over the course of the illness, the patient was hospitalized on two occasions in an acute internal medicine ward, primarily due to increasing malnutrition, nausea, and chronic diffuse pain. Her body mass index decreased over a period of 18 months from 18 to 14.2 kg/m².

All that is reported for treating severe malnutrition is —

Nutritional support was also provided to treat her malnutrition and promote weight gain.

Psychologically, the patient experienced considerable distress due to her chronic illness and cognitive impairment, often referred to as “brain fog.” She reported feelings of frustration and hopelessness, especially since her condition had not improved despite numerous medical interventions.

The patient’s expressions of hopelessness were specifically related to the irreversible progression of debilitating symptoms, loss of autonomy, and anticipated decline, without evidence of global negative self-appraisal or diminished interest in non-illness-related domains. The affective responses were congruent with the clinical situation and fluctuated in accordance with symptom burden and physical functioning, rather than showing the persistence, pervasiveness, or affective flattening typical of a depressive disorder. The number and severity of her symptoms and the perception that available interventions were ineffective led the patient to the decision to pursue assisted suicide, which was eventually accepted by her family members, primary care physician, and a panel of medical assessors from the Swiss assisted suicide association (EXIT).

Throughout the course of her illness, the patient underwent repeated psychometric evaluations that consistently revealed no evidence of clinically significant depression. She remained under continuous psychological and general medical care until the end of her life and repeatedly expressed that, given her profound loss of quality of life, she no longer wished to continue living. Throughout this process, she demonstrated preserved decision-making capacity and understanding of the consequences of her decisions.

This case does not suggest assisted suicide as an expected outcome of ME/CFS but rather illustrates the potential consequences of severe disease combined with therapeutic limitations and psychosocial burden.

And, as I can unfortunately personally attest, sometimes the suicide is not able or allowed to be assisted — with all that that implies for the family members of the loved one.

 

[PageofME]

The religious application of all this exercise and CBT is literally killing patients and there is no sign here they understand that they were the ones that made the patient so badly worse. Having invalidated this patients own experiences, brainwashing them on the cause and then worsening them so badly. Where is the accountability? A patient has died due to their "care", that is manslaughter.

It made me very sad to read through this story as well. Especially to learn that she developed severe panick attacks the worse she got was horryfying. I am so sorry for her last months of her life were so horrible.

I am not sure though whether it's only the health professionals that are to blame. I think that nobody forced her to any of these treatments. She's certainly been ill adviced by some doctors. But with the correct diagnosis, that she's received fairly quickly – congrats to her GP or whoever it was – and as an academic she could have informed herself and understood that she needed to drop everything, rest and learn to pace. Instead she went to physiotherapy and used many other treatments and went over her baseline again and again because she wanted to get better immediately.

But the information about ME/CFS was all out there and the warnings that activity and activism made everything worse was everywhere in the German speaking countries in the last years.

At the same time I understand that she didn't have a lot of time to learn about PEM and that every flare makes everything worse. Those who have a slow development of deterioration have way better chances to stop this down hill course before they are severe.

I have seen this a couple of times in my German speaking forum that some patients are just not able to process the information that there is no therapy but only rest and pace to hopefully stabilize until it is too late.

Also, very interesting to have a list of tests and treatments that are being tried out in Switzerland. And for me personally interesting to know that no one seems to come up with the idea of trying herpes drugs even when the situation gets completely out of control.

 

[Felis Catus]

I am not sure though whether it's only the health professionals that are to blame. I think that nobody forced her to any of these treatments. She's certainly been ill adviced by some doctors. But with the correct diagnosis, that she's received fairly quickly – congrats to her GP or whoever it was – and as an academic she could have informed herself and understood that she needed to drop everything, rest and learn to pace. Instead she went to physiotherapy and used many other treatments and went over her baseline again and again because she wanted to get better immediately.

But the information about ME/CFS was all out there and the warnings that activity and activism made everything worse was everywhere in the German speaking countries in the last years.

And you were sitting there with her witnessing her excessive energy and capacity to sift through websites and inform herself to ensure that the advice she was getting from healthcare professionals who were educated, trained and paid to help her was correct?

Glad you are better than her but maybe you could refrain from victim blaming, at least those who are dead.

 

[ryanc97]

This is very sad.

But from my understanding, did the GET make her progressively worse or was it the covid infection?

 

[PageofME]

And you were sitting there with her witnessing her excessive energy and capacity to sift through websites and inform herself to ensure that the advice she was getting from healthcare professionals who were educated, trained and paid to help her was correct?

Glad you are better than her but maybe you could refrain from victim blaming, at least those who are dead.

I was replying to a post that said that the doctors were to blame and I wrote that I think that that's not a valid judgment of what really might have happened and suggested that the patient might have been very eager to get better herself. I have seen so many patients doing this that I think it is important to bring that up.

I have seen moderates who drove two hours to their oxygen therapy and crash in the evening and then do it again the week after even though they had an ME/CFS diagnosis and warnings of deterioration because of too much activity everywhere. They didn't want to learn to pace. They wanted to find a cure. And only stopped when they couldn't leave the house anymore. This was based in ignorance but it was their decision and I don't think you can blame their doctors for that.

What I am wary about is to remove every kind of responsibility for their health from patients. We're not children. We're sick.

I think that you might just not want to understand what I mean. I am happy when you just want to let off some steam blaming me of victim blaming and behave unethically towards the dead and leave it at that.

And may this deceased woman, our ME/CFS friend, rest in peace.

 

[Jonathan Edwards]

I am not sure though whether it's only the health professionals that are to blame.

As a health professional I am afraid I do not understand this argument at all. Of course the health professionals were to blame. Sometimes advocacy groups encouraging patients to use treatments that are much more likely to do harm than good are to blame but to me it is inconceivable that anyone should think the patient with ME/CFS is to blame. It is a bit like blaming a depressed person for being depressed. I don't actually believe that in any country on the planet there is an authoritative consensus that exercise is bad. In most places there are communities that have worked that out but health care professionals push exercise - so it is their fault.

 

[Trish]

As a health professional I am afraid I do not understand this argument at all. Of course the health professionals were to blame.

Thank you for saying that. I absolutely agree. We should nevere blame patients for following bad advice from a doctor. We have many forum members who got much sicker after following medical advice to exercise. It's absolutely not the patient's fault.

 

[Utsikt]

I agree with both Trish and JE about where to place the fault.

I still think I should have known better, especially because I ignored advice about PEM from peers.

But that responsibility that I place on myself (and not others that were in the same position) is absolutely nothing compared to the people that have a professional and ethical duty to actually know better.

If you divided their responsibility with my responsibility, you would get an answer that approaches infinity.

I have learned from it, but I’m not to blame by any reasonable standards.

 

[PageofME]

As a health professional I am afraid I do not understand this argument at all. Of course the health professionals were to blame. Sometimes advocacy groups encouraging patients to use treatments that are much more likely to do harm than good are to blame but to me it is inconceivable that anyone should think the patient with ME/CFS is to blame. It is a bit like blaming a depressed person for being depressed. I don't actually believe that in any country on the planet there is an authoritative consensus that exercise is bad. In most places there are communities that have worked that out but health care professionals push exercise - so it is their fault.

I think that when you read my whole comment it gets perfectly clear what I wanted to say. I am not blaming the patient. It's what you read into this sentence of mine that was a bit misformulated.

Now that I see how it is interpreted I would have added that I don't think that the health professionals should be blamed and the patient of course not too.

My argument is that we're not children and that our decisions need to be respected. Some patients can't accept being chronically ill and follow the advice of resting and pacing but go to see too many doctors, trying out way too many therapies – I have heard of several accounts that this was also because their families pressured them.

I observe for quite some time that here on the forum there's an understandable but not legitimate tendency to blame doctors in every case but that's in many cases not the full picture. And certainly not in Switzerland in the past years. It's different from the UK here and in Germany and folks should take into account that they don't know the situation in other countries well enough that they can judge correctly from just scrolling through a case study who's to blame.

There isn't any evidence that anyone pushed this woman to exercise. There is evidence though that she went to see many doctors who didn't know ME/CFS. And I don't think that you can blame the doctors for that. It's a systemic failure of the system. It is tragic when you don't understand this fast enough. But we really mustn't take away all responsibility from patients because this is exactly that idealizing of doctors that has brought the medical field into this situation where ME/CFS patients are harmed or let down because doctors are given too much power in such a partition of roles.

And again, the information that exercise was dangerous in ME/CFS was broadcasted on the Swiss national television regularly.
What I want to say is that there are patients who are just not going to listen that they have to stop searching for a cure and deteriorate because of the distress that causes. And I think that the case is described well enough that we can say this patient was such a patient who couldn't stop until she was bedridden.

These kind of patients – who show up regularly on the German platform me-cfs.net – are dangerous for other patients who then get inspired to also get more therapies before they have learned to pace properly. Therefore I think that I am making an important contribution to the discussion here with my perspectives.

 

[Utsikt]

But we really mustn't take away all responsibility from patients because this is exactly that idealizing of doctors that has brought the medical field into this situation where ME/CFS patients are harmed or let down because doctors are given too much power in such a partition of roles.

And I think that the case is described well enough that we can say this patient was such a patient who couldn't stop until she was bedridden.

Doctors are given power over patients, both formally and informally. They have the responsibility and the accountability when they lack critical knowledge.

You don’t get a pass if you’re caught speeding if you didn’t see the sign, because it’s your responsibility to educate yourself about the laws. In the same way that it’s a doctor’s responsibility to educate themselves on all healthcare matters.

The fact that the system has failed is not an argument for placing responsibilities with the patients. In fact it’s the opposite, because how can a patient be expected to navigate a broken system better than the professionals?

And idealising (or just listening to) doctors is not what has cause the failure related to ME/CFS. It’s the incompetence of the doctors that have cause it - and the people above them that have allowed it to happen. Patients have been trying to fight back for decades, if not centuries.

By following your logic, should we place some blame on victims of domestic abuse, because why did they go into yet another relationship with a no-good guy? And maybe the girl wearing a short dress walking home because assaults have happened for millennium - women should have learned by now. I don’t think you agree with that at all - I’m just using common examples to make a point.

These kind of patients – who show up regularly on the German platform me-cfs.net – are dangerous for other patients who then get inspired to also get more therapies before they have learned to pace properly.

People that try their best to get out of a desperate situation are not dangerous to other patients. People take a prominent public position and that use that to make unfounded claims about treatments or pathology they do not have the expertise to judge, are. Edit: if the first do the second, they are dangerous to patients, but only because of the second).

 

[PageofME]

Thank you for saying that. I absolutely agree. We should nevere blame patients for following bad advice from a doctor. We have many forum members who got much sicker after following medical advice to exercise. It's absolutely not the patient's fault.

I see too that there are many members on the forum who have been harmed by GET. That's horrible and their doctors should not just be blamed but brought to court, being sentenced, and lose their jobs.

However, because of these horrible and unprocessed experiences of many members there is a tendency on the platform to project the own harmful experiences to the stories of other patients without first analysing them properly. I have intervened in such cases before and I will continue to do so.

 

[Trish]

We cannot possibly know the specifics of someone else's illness or treatment, nor should we judge whether someone should have known, for example, that a treatment they are prescribed will harm them. So I disagree with you, @PageofME about analysing other patient's stories. Our rules don't allow us to advise or speculate about someone else's symptoms, diagnosis or treatment for very good reasons. We can point to evidence for others to be aware of, but I don't understand what you mean by 'intervene'.