Are surgeons missing the major differential diagnosis that is more common than multiple sclerosis and HIV combined?

21 Feb 2019

Nina Muirhead

It’s a great feeling when we meet a new outpatient that we know how to manage surgically. Unfortunately, every surgical specialty experiences a subgroup of patients who present with symptoms that cannot be resolved by surgery. These symptoms may span immune, neurological and vascular systems within the body or brain and may manifest themselves in various ways in several organs at the same time. (See list of symptoms below)

Often these patients have been back-and-forth to the GP or passed on by other medical and surgical specialties. They tend to be the cases that are difficult to diagnose, quantify, understand and detect with routine investigations.

My story

In September 2016, I became ill with acute Epstein Barr Virus Glandular Fever. I continued working, exercising and trying to lead a normal family and social life. I developed all the symptoms listed below, as well as post-exertional malaise (PEM). Every time I tried to do anything challenging (mentally, physically or emotionally) I would experience severe symptom exacerbation and flu-like sore throats with head and neck pain. I couldn’t work, read or watch TV. I couldn’t look after myself, let alone my children, and could barely walk and digest food. Eventually I was diagnosed with Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS).

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome

Often triggered by a viral infection, ME/CFS, can be distinguished from medical and psychiatric conditions by the presence of debilitating fatigue for more than six months and/or combinations of cognitive dysfunction, total body pain, unrefreshing sleep that does not restore normal function and PEM.1

I was never taught about ME/CFS at medical school and it certainly wasn’t in the MRCS examinations that I passed a decade ago. I had a vague notion that it was an illness related to deconditioning, but I was wrong. ME/CFS is a serious neurological condition which can be fatal.

Given that my own prior understanding of ME/CFS was so misguided, I was not surprised to read in the BMJ that 90% of cases of ME/CFS are thought to go undiagnosed, suggesting that people with ME/CFS are substantially undercounted, underdiagnosed and undertreated.² In another study, 41.9% of ME/CFS patients were told by emergency department staff that it was all in their heads.³ Biobank data suggests ME/CFS is a heritable condition estimated to affect over 286,000 people in the UK; this is more common than multiple sclerosis and HIV combined, and many patients are waiting years for a diagnosis.

Parliamentary proceedings

On the 24^th January 2019, ME/CFS was debated for the first time in 20 years in the main chamber of the House of Commons. It was unanimously agreed that: the Government should provide increased funding for biomedical research into the diagnosis and treatment of ME; the suspension of Graded Exercise Therapy and Cognitive Behavioural Therapy as means of treatment should be supported; GPs' and medical professionals' training needed updating to ensure they are equipped with clear guidance on diagnosis of ME, as well as appropriate management advice to reflect international consensus on best practice and; the current trends of subjecting ME families to unjustified child protection procedures is concerning.⁴

Differential diagnosis

When you next see a patient with any of the symptoms listed below, ask them about PEM and consider ME/CFS as a differential diagnosis. While they may not leave your clinic with an operation booked, they may finally get a diagnosis, and the time spent in your clinic will have made a big difference to their lives.

Typical symptoms of ME/CFS

· Post Exertional Malaise (PEM)

· Irritable bowel

· Non-specific abdominal pain

· Urinary frequency or urgency

· Tinnitus

· Facial pain

· Sore throat

· Unrefreshing sleep

· Postural tachycardia and/or orthostatic hypotension

· Headaches

· Dizziness