Question
I’m not sure if I ought to be worried about my recent loss of appetite – because this means that I’m starting to lose a bit of excess weight. However, this illness imposes far too many restrictions on what I can do already and I normally enjoy my food.
I haven’t been to see my GP because she’s not really interested in ME.
Is there a good tonic you could recommend? And is there a reason why people with ME sometimes lose their appetite?
Answer
Loss of appetite (anorexia) does sometimes occur in ME/CFS.
There are a number of reasons why this might occur. These include having an unusual or very restrictive diet, difficulties with obtaining and/or preparing food, coexistent depression/low mood causing loss of interest in food, and difficulties with swallowing that can tend to occur in people with more severe ME/CFS, and drugs that you may be taking – especially antidepressants and strong painkillers. Loss of appetite can also be an important warning sign of another medical problem that has nothing to do with ME/CFS and which may not be producing any other symptoms.
Common and important examples include diabetes and hypothyroidism. So this is a symptom that should always be discussed with your doctor who can take a proper history, carry out a physical examination, and do some blood tests– especially when it has resulted in weight loss. People with ME/CFS need to have a good balanced diet containing adequate amounts of protein, carbohydrate and other essential nutrients in order to provide energy for both mental and physical activities. If you are not eating well, this will not help with day to day activities, as well as having an adverse effect on any natural recovery process that may be taking place. The best person to offer good practical advice on diet and nutrition when appetite is poor, assuming a medical explanation has been excluded, is an NHS dietitian. Your GP should be able to make a direct referral.
Many years ago doctors used to regularly prescribe ‘tonics’ and my father – who was a pharmacist – used to regularly dispense ‘tonics’ on the NHS! Research has since shown that these tonics were just powerful placebos. So they are no longer prescribed, although they are still on sale over-the-counter.
Useful information on loss of appetite
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MEDICAL DISCLAIMER
Information provided by The ME Association should not be construed as medical advice. Don't assume any new or worsened symptoms are simply the result of having ME/CFS or Long Covid. We recommend that any information you deem relevant is discussed with your NHS GP as soon as possible. It is important that you seek personalised medical advice from the GP who is in charge of your care and who knows you well.