Question

Earlier this year, I suddenly developed severe back pain, loss of balance and was unable to walk in a straight line. I was sent to casualty where I had a CT and MRI scan. I was then diagnosed as having severe spinal inflammation.

The MEA purple book states that there is no evidence of brain or spinal inflammation (= encephalomyelitis) in ME/CFS.

But are we missing something here? Could symptoms such as back pain, poor coordination and abnormal sensations that are commonly reported in ME be caused by inflammation in the spinal nerves?

Answer

I’m very sorry to read about what has happened here and I hope that you are now improving.

From what you say, it sounds as though you have had an inflammatory condition involving the spinal cord called transverse myelitis. This is normally caused by an infection and results in damage to the insulating material covering nerve-cell fibres (myelin). Transverse myelitis interrupts the messages that the nerves in the spinal cord nerves send and receive from all over the body. 

Fortunately rare, this is a very serious medical condition that people with ME/CFS need to be aware of – because of the overlapping symptoms.

Signs and symptoms of transverse myelitis usually develop over a few hours to a few days but may sometimes progress gradually over several weeks.

• Pain can occur quite suddenly in the lower back. A sharp pain may also shoot down the legs or arms or around the chest or abdomen. Pain symptoms will vary according to the part of the spinal cord that’s affected.
• Abnormal sensations: These include numbness, tingling, coldness or burning. Some are especially sensitive to light touch of clothing or to extreme heat or cold. 
• Weakness in your arms or legs: This can involve heaviness in the legs, or stumbling or dragging one foot. There day be severe weakness or even total paralysis.
• Bladder and bowel problems: This may include needing to urinate more frequently, urinary incontinence, difficulty urinating and constipation.

If these symptoms occur over a short period of time you must call your doctor or go straight to casualty.

Treatment for transverse myelitis includes medications and rehabilitative therapy. Most people with transverse myelitis recover at least partially. Those with severe attacks sometimes are left with major disabilities.

In relation to ME, doctors have always been very reluctant to accept that this disease involves an encephalomyelitis – meaning widespread and serious  inflammation involving the brain and spinal cord nerves. Although some of the symptoms of transverse myelitis can occur in ME/CFS, they are not usually part of the acute infection that triggers many cases of ME/CFS. And we have not been able to find any evidence of an encephalomyelitis in the postmortems that have been carried out.

In our present state of knowledge, there isn’t therefore any sound evidence to indicate that ME/CFS involves inflammation of the spinal cord (-myelitis) and, where this sort of acute severe illness occurs in someone who already has ME/CFS, it probably isn’t linked.

See Also: Post-Viral Fatigue Syndrome, Myalgic Encephalomyelitis or Encephalopathy, Chronic Fatigue Syndrome, and Long Covid