Editor’s comment: David’s mother sent me her son’s story a few days after I asked for photos of people who had died of ME/CFS. She hopes that when people learn of David’s horrendous experience some progress will be made toward helping patients with ME/CFS, and that David’s suffering will not have been in vain.
It is not easy to tell David’s story.
In February of 2011, at the age of 15 ½, David had an acute infection with fever, along with inflamed, suppurating tonsils. He took antibiotics, the fever went down, and everything seemed to go back to normal. Shortly afterwards he developed back pain. He had been working very hard in his garden, carrying heavy stones. This seemed the reason for his back pain.
The following months he seemed to be functioning, but afterwards we realized that he was suffering quietly. None of us knew about his sleep disturbance, because he never complained. He only told me about the pain, so he was seen by orthopedic doctors. But we didn’t understand why no treatment seemed to really help. At the end of summer vacation 2011, he told me one evening that he was not sure if he could manage school. I thought these were strange words from our son, who was very diligent regarding school.
By the beginning of October he was no longer able to attend school. He could barely move and lay in bed like a statue.
After a few days our family doctor referred him to a children’s hospital. They did many tests for orthopedic and rheumatic illnesses – there was no result. That was where David heard for the first time: ‘It is no wonder you feel so bad, if you don’t move at all…’ The hospital’s psychologists said it could be ‘all in his head’…
After 10 days of no test results and no progress, we took David back home.
At home, he got physiotherapy for his back, but now he seemed to develop strange sensitivities and odd explanations for his bones and joints hurting – a fact that augmented the impression that it was ‘all in his head’.
Our family practitioner was very concerned about the fact that he was at home, and ‘nothing was happening’ while David was getting more and more ill. In October he could walk the 2 km to the physiotherapy office, but by December this was no longer possible, and nobody could understand why. He lost weight although he ate as much as he could – and that was really a lot! – but he hardly moved.
To make the following months short: There were no positive results from any test, and every absent finding made the impression stronger that there was something very wrong in his head. Only we, his parents, said, “We’ve known him for 16 years now, and there is something not right with the explanation that his symptoms are only signs of major depression or somatoform disorder.”
The only measurable outcome was a very high NSE [serum neuron-specific enolase] in December, but after an intense search for neuroblastoma – with no confirmation – the value was declared as a laboratory mistake.
We lost confidence in our family practitioner, but had no alternative. She urged us to go to the psychiatric hospital. We believe she did this to free her of the responsibility she felt for the situation. She was not willing to order the tests we requested, such as testing epinephrine levels. Her reaction was “Yes, we could do this at some point, but NOW it is the time to ask a psychiatrist…” That told us that she had already made a psychiatric diagnosis. We felt that there was something wrong with this, but we had no clue what the heck our son was suffering from. We kept searching for help, and I found a way to test his epinephrine levels as he was at home (not so easy if you have no doctor), but the results took weeks.
During that time we took David to a psychiatric hospital with very heavy hearts, but our question there was, “We don’t know what he is suffering from. Can you help him?”
After one week, we got the answer: “He has no major depression, he also has no incipient psychosis (as one doctor assumed weeks before). We don’t know what he has. But NOW we have to get him moving, because activity is the most urgent thing he needs.”
While he was in the psychiatric hospital, David got worse and worse. He got no help or attention for his physical needs. His oversensitivity to sound was very acute at this time but they made no compensation for this. He was traumatized.
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In the second week of his time there, we got the results of the epinephrine test he had taken weeks before. All his hormones were very, very low, nearly alarmingly low. We showed the results to the doctors and asked for follow-up, or for more testing. The answer was that the tests were designed for detecting an overproduction of these hormones, so these results are meaningless. A few days later, David was taken to the locked ward.
With the knowledge we have now, and from our experiences over the following months, we now realize it was a miracle that we managed to get him out of the locked ward. Our reason was that we wanted to try to figure out what was happening to David with an endocrinologist. (But I will never understand why it was impossible to ask the endocrinologist at the hospital for advice?! David was in a university hospital, and all the specialists were right there!)
After 2 1/2 weeks in psychiatry David could no longer walk more than a few steps, so we had to lay him down in our car, because he could not sit for the 1 1/2 hour trip. He never recovered to the level he had been before being admitted to the psychiatric ward.
I had made an appointment with an internist who was a specialist in epinephrine problems a few days after David came home with us. It was he who diagnosed David with ME/CFS. At first the diagnosis was only a hunch, but time proved him right. Nine months after David was forced to leave school we finally had a diagnosis – of something I never had heard of before.
The following months David got slowly, but steadily worse. Mainly his oversensitivity grew. From December 12 until February 13 he was in a poor, but stable condition, so we gained hope for things getting better, we thought we reached the bottom of the valley.
Then, in the middle of February, he crashed in a way we could not imagine before. Each week, almost every day a new low point was reached.
One morning in the last week of March, my husband heard a strange noise and went to see what was going on. He found David on the floor, unable to move, in terrible pain. But he was conscious, recognized his father, and was able to speak.
David was brought to the ER, where they found a large brain hemorrhage. They couldn’t stop the bleeding, and after some hours, a second brain hemorrhage was found. They transferred him to a hospital with a neurosurgery unit.
He died 28 hours later without regaining consciousness. His father and I were with him until the end. His brothers and sister came this last day and said goodbye to him.
None of the medical professionals we met in his last two days ever heard of an illness called ME/CFS or was familiar with the symptoms David had.
Three weeks after David’s death, I went to a meeting of ME/CFS patients and care givers. This meeting was my first contact to patient groups – before that we didn’t have the time, the strength or the knowledge about what was possible.
David’s parents wrote the following letter to the health minister of Rheinland-Pfalz
Dear Health Minister,
Three weeks ago we lost our 17- year old son David. He died after two days at the intensive care unit as a result of an unstoppable brain hemorrhage.
Before his illness he was a normal teenager with no problems at school. He played cello for 10 years, planted his garden with devotion, cared for his birds, had a passion for chemistry and biology, and never knew a minute of boredom.
A year and a half ago he had become so seriously ill that he couldn’t attend at school anymore. Nine months ago, after a long odyssey, he was diagnosed with ME/CFS.
The last months of his life he was so ill that he couldn’t bear any sound, or the presence of other people. He couldn’t handle intellectual information. Daily life was nearly impossible for us and his siblings, because all of us knew that every sound gave him unimaginable pain.
In the last two days of his life, many clinicians cared for David: First aid helpers, ambulance crew, emergency doctors, intensive care unit crew, neurosurgery OP-team, and a further anesthesiologists and neurosurgery intensive care unit crew – not one single person of all these experienced and well-prepared people had heard about an illness named ME/CFS before.
Our dream is that in the future no ME/CFS-patient has to face the situation where the ambulance crew needs to spell the name of this illness into his walkie-talkie.
And that no seriously ill child have to wait nine months for a diagnosis, during which all treatment attempts worsen his symptoms, as took place with David.
And that parents, who have the unsolvable task to care for a seriously ill ME/CFS-patient are not threatened with the withdrawal of custody and don’t get letters from the government office for youth welfare.
They need help, support and empathy, and in very hard times the chance to get care for patients outside of their homes.
In the whole of Germany there is no means for meeting the special needs of patients with severe ME/CFS.
It is our dream that this fact will be changed.
If David’s pain and our loss will change something, then we will be glad and thankful.
Please do all you can to make this happen!