Two Israeli mothers whose teenage boys were diagnosed with Chronic Fatigue Syndrome are appealing for greater research into the illness after having to seek treatment in Cyprus.
Neomi Bitan and Esti Yosef were left reeling when their children fell ill and Israeli medics not only struggled to diagnose the problem, but offered little in the way of help beyond psychiatric referrals.
Yet both mothers insist their children were not battling mental health issues, but physical ones.
Neomi said her son Nadav was like a “car without an engine” as he struggled with a condition that left him bedridden for three months and largely confined to home in Hod Hasharom for more than two years.
Esti said her son Yotam went from being an athletic young boy who played football four times a week to a child whose body was racked with pain and exhaustion.
“My son became ill in 2017 when he was 13 years old,” revealed Esti. “Within five months of him getting sick we understood there was nothing the doctors here could do to help us. They suggested psychotherapy and Cognitive Behaviour Therapy, they prescribed anti-depressives and exercise, but I know my son well – he wasn't depressed at any time. He was sick.”
Chronic Fatigue Syndrome (CFS) is a rare condition that seemingly strikes out of nowhere to greatly impact a person's quality of life, and when that person is a teenager the consequences can be devastating. With the main symptom being extreme tiredness, CFS can lead to prolonged absences from school and increased feelings of isolation.
Also called Myalgic Encephalomyelitis (ME), CFS commonly starts with a short or sudden illness such as flu or glandular fever. It can also be triggered by stress, and the debilitating effects of CFS can last for years.
Neomi's son Nadav fell ill on his 13th birthday with what the family first thought was flu. When the youngster's condition continued to deteriorate, medics thought it might be Infectious Mononucleosis (mono), also known as `kissing disease'. But the blood tests continued to come back clear.
“Nadav became so tired he slept all day long, for nearly 20 hours at a time,” Neomi revealed. “Then there came a deterioration of the body; the muscles no longer worked so well and he couldn't walk without holding onto a wall because he felt so weak and exhausted.”
Debilitating tiredness is one of the main symptoms of CFS and it can last for three months or more. Sufferers can also be blighted by headaches, aching muscles and joint pain, disruption of sleeping and eating patterns, brain fog, dizziness, nausea, a racing heart, pain, a sore throat and a general feeling of being unwell.
As CFS is also notoriously difficult to diagnose, and the illness is so isolating, the knock-on effects of these symptoms can lead to depression, irritability and anxiety. It is also a hugely stressful time for parents who often find themselves struggling to help their children in the face of a sceptical medical profession.
“We went through a lot of examinations including an MRI,” says Esti. “I felt helpless.”
Esti and Yotam's experience, is echoed by Neomi and Nadav.
Neomi said, three weeks after Nadav fell ill, we went to the hospital and after a lot of checks they said we should take him to a psychiatrist, and that's when I understood that the doctors here couldn't help me.”
Determined to find a reason for their children's illness, both Neomi and Esti turned to the hugely respected paediatrician Zvi Spirer, widely regarded as the number one physician in his field. Prof Spirer diagnosed CFS in both boys.
Having a diagnosis, both mums – who became friends through a global support network on Facebook – researched options for treatment. They then heard about a clinic called Neomed in Limassol, Cyprus, that specialises in chronic conditions. Esti and Yosef travelled to the clinic in the summer of 2019. However, Neomi and Nadav were forced to cancel their own trip in March last year after the coronavirus pandemic effectively triggered a global travel ban.
Suzana Vitti, director of the Neomed Institute, said: “CFS can be a very difficult diagnosis to make, if it is made at all, and children often find themselves in and out of doctor's surgeries and hospital wards for many months with no solution.
“As CFS shares symptoms with many other conditions, doctors tend to diagnose chronic fatigue syndrome only when they've ruled out other causes. And it's not uncommon for sufferers to be told that their problem is psychiatric rather than physical.
“It's a huge shame for these teenagers. CFS is a disorder that can seriously disrupt a child's normal life leaving them unable to play the sports they love, mix with their friends, attend school or even get out of bed because of the severe muscle loss brought on by inactivity.”
Although there is currently no specific cure for CFS there are treatments that can help with the symptoms. At Neomed, treatment packages are tailored to the individual and they utilise a number of innovative therapies, such as medical ozone therapy, to support mitochondrial regeneration and reduce infectious loads. Traditional therapies are also employed to boost immune activity, both directly and indirectly, via enhancing the gut microbiome.
Three weeks after returning home to Israel, Esti began to see a gradual improvement in her son's ability to function normally, including being able to spend more hours at school. Today, Yotam is “a normal, healthy teenager again”.
Speaking of the four-week programme, Esti said, “it was the first time that Yotam felt he had people taking care of him, medically. This was very important for him. It was empowering to finally have people take our condition seriously. In Israel, we desperately need more awareness of this.”
The lack of knowledge, and even interest in CFS is something Suzana Vitti hears a lot. She said, “we have people who come to us from all over the world to be treated for CFS and the numbers are increasing. We see a lot of teenagers coming from America and sometimes they are quite young, falling ill at ten or eleven years old.”
The lack of understanding of CFS is something that deeply disheartened Nadav during his own struggle. The 15-year-old said, “nobody really knows what I'm going through because I look perfectly normal from the outside. In some ways, I wish I had something even worse than CFS because people would then acknowledge it and there would be medicine to treat me.”