Nicola Reiss woke up one Boxing Day feeling extremely unwell. She had pain all over, her ribs ached and she was running a fever
“It was as though I was involved in a boxing match,” she recalled.
The doctors thought the 51-year-old woman had malaria. She was lucky to be a foreigner in Rwanda as, according to her, foreign patients are treated seriously there.
However, endless tests would prove that Ms Reiss, who now lives in Malta, did not have malaria. Two years of fatigue and pain later, one brave Maltese doctor told Ms Reiss she had Myalgic Encephalomyeltis (ME).
The problem with this condition, also known as chronic fatigue syndrome or post-viral fatigue syndrome, is the controversy surrounding it. There is no test to diagnose the syndrome and diagnosis is only made when a certain set of symptoms are displayed. These can vary in type and severity.
While, on one hand, doctors seem reluctant to diagnose this condition because the science around it is not as yet concrete, patients feel misunderstood and unaccepted.
Although local figures on the number of people affected by ME are currently unavailable, some 250,000 people are said to suffer from the condition in the UK alone.
Beatrice Gatt, spokesman for the ME support group Malta, said the hospital should have an inter-disciplinary outpatient clinic and an outreach programme for better medical understanding. The support group also called for government recognition for disability benefits.
Patients who spoke to The Sunday Times have voiced frustration that many doctors do not bridge the condition to the symptoms they complain about.
“Doctors don’t make a distinction between ME and people who are tired for other reasons,” Ms Reiss said.
Another patient, who preferred to remain anonymous, said: “When I suggest my hoarse voice may be caused by ME, they just shrug it off.”
This is not the first time the medical world struggled to accept a condition that science had not yet proven. At the beginning of the 20th century, the now renowned asthma was seen as a psychosomatic disease – one that is mainly influenced by the mind.
Treatment involved psychoanalysis as its primary component. A child’s wheeze was seen as a suppressed cry for his mother.
Psychoanalysts thought that patients with asthma should be treated for depression. This theory was eventually refuted and asthma became known as the inflammatory condition it is treated as today.
Although the cause of ME is not yet known, there are various theories – but none is proved. A popular theory is that a viral infection may trigger the condition.
The latest scientific breakthrough linked a second type of mouse virus to ME.
Although the findings do not prove the virus causes ME, the scientists found evidence of murine leukemia virus in 86 per cent of ME patients they tested, but in fewer than seven per cent of healthy blood donors.
This has also raised questions about the safety of blood donations from ME sufferers, as international talks of banning donations from ME sufferers are underway as an interim measure.
ME has been classified as a nervous system disorder by WHO, and although the term “encephalitis” suggests inflammation in the brain or spinal cord, there is no evidence to support this.
It is characterised by chronic fatigue, associated with other variable symptoms which include widespread muscle and joint pain, sleeping difficulties and depression.
The severity ranges from one sufferer to another, and while some people may live a relatively normal life, others like Ms Reiss are unable to work due to the severity of their symptoms.
Although the controversy exists, people tend to agree on one thing: patients are hurting. As one doctor who spoke to The Sunday Times put it, “We cannot endorse what we cannot see. What we know for sure is that they are suffering.”