A Ukrainian man living with myalgic encephalomyelitis (ME/CFS) has been forced into a psychiatric hospital in Ukraine, amidst daily drone strikes and bombings.
His story highlights the lack of knowledge around ME and the additional challenges of Russian attacks on chronically ill and disabled people.
Debilitating symptoms of ME/CFS
Marc is 21 and lives in Kharkiv, Ukraine. Until 2020, he was an ambitious student and aspiring doctor. That was, until he caught Covid. He developed long Covid, and now he lives with ME/CFS – a chronic systemic neuroimmune disease which affects nearly every system in the body. ME causes a series of debilitating symptoms. These typically include influenza-like symptoms, cognitive impairment, multiple forms of pain, and heart, lung, blood pressure, and digestive dysfunctions.
In particular, post-exertional malaise (PEM) is the hallmark feature of ME. This involves a disproportionate worsening of other symptoms after even minimal physical, social, mental, or emotional exertion. Often, the worsening can be permanent for the individual.
After contracting Covid-19 in 2020, Marc continued studying, first at Karazin, Ukraine, then at an Irish university where he received a scholarship. However, his health kept getting worse. Eventually, the university expelled him as he could no longer work or study. He presumed he was depressed because he couldn’t get out of bed for weeks.
He went back to Kharkiv, but the constant stress and disruption from the Russian shelling worsened his condition. At first, he still worked from his bed as an online English tutor for a couple of hours a day. He tried to volunteer, play guitar, and draw with charcoal and pastels, but it was taking a lot out of him.
A continued decline
His condition continued to decline. Doctors repeatedly told Marc it was psychosomatic.
Eventually, Marc couldn’t even leave his apartment and was starving until friends stepped in to help. He told the Canary:
I have very severe ME, I can’t tolerate sound, light, touch. I can’t talk, walk to the toilet and can very rarely use the phone. Most of the time have to lay with earplugs and mask.
At least 25% of people live with severe ME/CFS. People living with it are mostly, if not entirely, permanently bed-bound or hospitalised. On top of this, they are often unable to digest food, communicate, or process information.
He was hospitalised several times, but each time his baseline took a hit. Medical staff forced him to walk, shouted at him, and berated him for his “laziness”. Eventually, he was able to find answers online and realised he had ME. At this point though, he was already bedbound, had severe sensory intolerance, and struggled to walk or communicate.
Due to not having a source of income, his mother ended up caring for him. But she doesn’t have the funds to keep supporting him financially. Eventually, it meant she decided to seek psychiatric help for Marc.
His Mom took him to a psychiatric hospital where they pressured him to sign a waiver to be admitted. The hospital then took away his eye and ear protection, and are regularly forcing him to walk.
‘I’m terrified’
Marc now has daily PEM and is still getting worse. The hospital staff do not understand his condition, and neither do his family. Before his hospital admission, he told the Canary:
My mom doesn’t believe me when I tell her I have MECFS and is taking me to the psychiatric ward today because she thinks it’s a dissociative disorder, I’ve tried so hard, reached out to brother [and] sister but they believe mom, reached out to a social worker she doesn’t believe me either, my mom opens blindfolds [and] door all the time even though I tell her it’s painful for me, she continues forcing me to speak even though I can’t without an intense burning head sensation.
So I get PEM and crash constantly at home because my caretaker doesn’t understand/believe my condition, I’m also autistic.
I’ve already been hospitalised in the ward for three weeks but at that time I could still talk [and] advocate for myself and go to the restroom, it made my situation worse and this time I’m incredibly scared about my health deteriorating.
I’ve seen 7 neurologists there not a single one believed me or even knew about ME. I asked my social worker to print out a few pamphlets in Ukrainian about ME and a plea to transfer me to neurology department so that’s my only hope, my mom will be pushing for me to be treated for psychiatric issues and I can’t protect myself. I have barely energy to write this. I’m terrified to be honest.
16 days later, Marc has only deteriorated further. Whilst he now has his ear and eye protection back, according to his friends, he is eating very little and has been unable to reply to messages for days at a time.
Although the hospital has acknowledged he has dysautonomia symptoms, they are trying to claim he has a dissociative disorder and is refusing to cooperate with them. Marc told the Canary:
ChatGPT says my ME is most likely neuroinflammation and dysautonomia-driven. They want to put me in the reanimating extreme ward because I can’t walk, take a shower, or speak normally.
Mom says I need to try harder and convince myself to get rid of the symptoms. Mom said being home is not an option because she’s scared, and here the doctors will help. Says they’re not helping because I’m not trying. A few neurologists who saw me saw myalgic encephalomyelitis and dismissed it because my CFS was clear.
I’m also trans on HRT for a year, my results are good and stable, they’re saying [the] dysautonomia is because of hormones and making me de-transition even though it will completely destabilise my body, endocrinologist said to do it slowly, even though before he said my results are good. I don’t know what to do.
His online friends have started a fundraiser to try to get Marc better medical care. They have also reached out to Ukrainian specialists who treat ME/CFS patients. They are hoping for more competent medical care in a safer, more stable environment.
Psychologisation rife around the world
All over the world, ill-equipped families and medical staff are forcing patients with ME/CFS into psychiatric hospitals, in blatant attempts to psychologise the illness.
Only last year, the abusive parents of a young woman in Greece forced her into a psychiatric ward against her will. It resulted in Katiana having no contact with the outside world. They trapped her in an environment which posed a serious threat to her life.
Additionally, Katiana highlighted the “widespread disbelief in the existence of ME across the Greek healthcare system. Clearly, this widespread disbelief is not confined to Greece.
A hospital in New Zealand discharged another young woman – 34 year-old Rhiannon – to a care home for pensioners. Similarly, the staff there were hugely ill-equipped for her care and the environment was utterly inappropriate for her condition.
The Canary also reported on a similar case for a young man named Karol in Poland. Clinicians and a disbelieving mother previously committed him to a psychiatric ward, and have threatened this multiple times since.
A care home in the UK is continuing to refuse to give a man with ME and long Covid the vital supplements he needs, to the point he is suffering life-threatening dehydration. And also in the UK, just last year, young women Millie and Carla were both sectioned against their will because doctors believed their ME was ‘all in their heads’.
Now Marc’s story adds to this growing list of ME patients healthcare systems globally are atrociously failing.
ME/CFS under military siege
Marc’s story is a window into the reality of life with ME/CFS under military siege. Not only is he battling the constant disbelief, gaslighting, and abuse which are rife within the medical establishment towards ME patients, but he must contend with doing so in an unstable, dangerous environment.
Given the impacts of loud noises, light, and other external stimuli on ME, the Russian bombardment not only threatens his life in the usual way but also risks worsening his condition from the environmental impacts on the city around him, too.
What’s more, as an autistic transgender man, Marc faces multiple layers of marginalisation. Clinicians appear to have weaponised his gender transition against him. Now, not only is the hospital attempting to coerce him into ‘treatments’ that will harm his ME, but it’s also forcing him to de-transition against his will.
Considering the hospital is so set on claiming Marc’s ME is psychosomatic, it beggars belief that it’s now denying him his HRT. This will undoubtedly put his mental health at risk.
Ultimately, there’s nowhere in the world that’s safe for people living with ME right now. Least of all, however, a country under military invasion.
You can donate to his fundraiser here.
Communication with Marc was via the Severe ME Advocacy Group
Feature image via Marc
