Background problems
For many doctors, either family doctors, paediatricians or physicians, being confronted with a case of very severe ME will be their first experience of such a case. This may lead to a form of denial, whereby the doctor has to find another explanation for the presentation. Possible alternative labels include an Eating Disorder, despite the patient lacking any evidence of body dysmorphism or wanting to lose weight. Other psychological diagnoses considered include Pervasive Refusal Syndrome (PRS), or Pervasive Arousal and Withdrawal Syndrome (PAWS). Most distressingly for the family, mothers are sometimes accused of Fabricated and Induced Illness (FII).
Perhaps more understandably, most doctors will tend to panic initially, and to fear they are missing some other diagnosis. There is also a natural fear that the patient may die and they may be blamed. This leads to hospitalization and subjecting the patient to a battery of investigations, some of which will be very traumatic for the patient and lead to worsening of the condition.
Naturally, if the doctor starts from a position in which he/she does not accept that ME is an organic condition in the first place, these mistakes are even more likely to occur. Previous preference for the weaker term Chronic Fatigue Syndrome (CFS) will increase the chances of denial, as no one ever talks of very severe CFS.
I have joked in the past that if God wants to drive doctors mad he confronts them with a case of ME. If this fails, God then confronts them with a case of Very Severe ME which usually does the trick!
