Question
Having had a diagnosis of ME/CFS for many years, I have recently been re-assessed by a neurologist because of my increasingly frequent bad headaches that come on after coughing, sneezing or straining. I also have various ME symptoms – problems with balance, numbness and tingling and dizziness in particular. But I’m less bothered by fatigue and brain fog. I have now been diagnosed with a fairly rare brain condition called Type-1 Arnold Chiari Malformation. Interestingly, my neurologist told me that this condition has been linked to ME and that some people with ME have had complex neurosurgery to deal with this.
Answer
The Arnold Chiari Malformation is an unusual structural neurological abnormality where the skull is too small or mis-shapen. As a result, some of the brain tissue is pushed downwards into the spinal canal. It is often diagnosed quite late in life because it’s not a condition that many doctors will have seen.
There have been several reports over the years describing how people with Arnold Chiari Malformation also have orthostatic intolerance and other ME/CFS type symptoms. So it should always be considered when there are neurological symptoms present that are not found in ME/CFS or headaches that have unusual features.
For people who do have a definite Arnold Chiari Malformation and symptoms are more severe, brain decompression surgery may be recommended. However, there is no hard evidence to indicate that this type of structural brain abnormality is a cause of ME/CFS. In our current state of knowledge, undergoing this type of complex brain surgery as a way of treating ME/CFS is therefore highly speculative and is not something that I would want to endorse or recommend.
More Information:
- Useful research review: “Chiari I malformation as a cause of orthostatic intolerance symptoms: a media myth?”
- The ME Association has produced a range of free leaflets in our Free literature section, including the following topics:
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MEDICAL DISCLAIMER
We recommend that the medical information is discussed with your doctor. It is not intended to be a substitute for personalised medical advice or treatment. You should consult your doctor whenever a new symptom arises, or an existing symptom worsens. It is important to obtain medical advice that considers other causes and possible treatments. Do not assume that new or worsened symptoms are solely because of ME/CFS or Long Covid.