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Dr Bell presented his work on the 25 year follow-up of the young people from the initial illness which triggered his research.
He described this initial outbreak in 1985 in a small rural community just south of Toronto.
210 people remained ill following a flu-like illness.
Many more had the illness, but had recovered by 6 months.
Those remaining ill were finally diagnosed as suffering from ME/CFS.
60 were children and adolescents. The 13 year follow-up was written up in the Journal of Paediatrics.
80% described themselves as doing well.
Half of these still had symptoms but leading a reasonably normal life, the other half seemed OK. 20% had ongoing illness and were "disabled".
He then asked "How should recovery be defined?" - "Is it absence of symptoms or adaptation?"
If the answer is adaptation, this leads to confusion and a false perception of health.
Factors included here would be: patient looks OK, tests are normal, specialists come up with no diagnosis and there is a lack of evolution into an illness such as MS.
This confusion is damaging for adolescents.
The current study included a follow up of 28 people, and a wide range of assessment tools was used.
3 had developed malignancies (thyroid cancer, cervical cancer and leukaemia) and were excluded.
The remainder (25) were represented by 3 groups. 2/25 (8%) were well. 18/25 (72%) had remitting illness - they considered themselves alright, but scores indicated they were not well.
The third group - 5/25 (20%) had persistent ME/CFS. They considered themselves disabled with severe symptoms and reduced activity.
These people were on disability pensions, but ME/CFS was not used as the diagnosis to be eligible, and the illness was often called other names to ensure the benefit.
Dr Bell pointed out how people do learn to adapt to this illness. Many seem to recover but then slide down again.
The worst symptoms seemed to be associated with sleep and pain. He described his disability scale from 0-100 with 100 being entirely well.
Many of these patients scored around 30. He felt one of the most important questions for the clinician to ask was the number of hours of upright activity attainable each day.
In his current study, controls scored 15 hours, the persisting severe group 1-5 hours and the remitting group 13 hours.
In summary Dr Bell concluded that at follow up 72% had mild to moderate illness, although considered themselves OK. There was health identity confusion, by
remembering self being much worse, and now considering self "well".
Time will tell the long-term outcome.
Here is the video of David's presentation at #IIMEC6 -
He felt strongly that he was looking at the natural history and course of the illness rather than any medication or vitamins promoting recovery.
Patients’ hopes for recovery from myalgic encephalomyelitis and chronic fatigue syndrome: Toward a “recovery in” framework
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