Royal College Surgeons Website Blog by Dr 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 24th 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; GP’s and medical professional’s 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
- Nerve pain and tingling
- Bone, muscle and joint pain
- Generalised weakness
- Poor circulation
- Atypical chest pain
- Dysmenorrhea
- Fatigue
- Sensitivity to light, temperature, sound and chemicals
- Difficulty with memory, word finding and multitasking
Further reading
a) ME Association Index of ME/CFS Published Research
b) Red blood cell deformability is diminished in patients with ME/CFS
c) Widespread brain metabolite abnormalities in ME/CFS
References
- BMJ Best Practice CFS/ME (Last reviewed: January 2019)
- Davenport, Snell et al. Checking our blind spots: current state of research evidence summaries in ME/CFS (2018)
- Baranuik and Timbol Chronic fatigue syndrome in the emergency department (2019)
- M.E. Debate, House of Commons, 24 January 2019.
ME Association 2018/19 Clinical and Research Guide
Written by Dr Charles Shepherd, Hon. Medical Adviser to the ME Association, and Dr Abhijit Chaudhuri, Consultant Neurologist, Essex Centre for Neurosciences.- It is a must-have for anyone who has been affected by – or has an interest in ME/CFS.
- It features a thorough clinical evaluation and all relevant published research.
- We are currently in the process of publishing the 2019 edition and this should be available in hard-copy next week.
- You can purchase in hard-copy from our online shop or by contacting head office on 01280 818964 (Monday-Friday, 9.30am to 3.00pm).
- The 2019 guide is now available in Kindle at the same great price but in an easier-to-access format. Visit Amazon Smile or Amazon for more information and to make a purchase.
Free copy available for health professionals!
We have funds set aside in our medical education budget to provide free copies of our clinical and research guide to GPs and other health professionals. Contact us with the details on the phone number above, or send head office an email.
As a psychotherapist and PWME, I know that it is very straightforward to make a differential diagnosis between ME and depression. The psychiatrists who want to claim that it is difficult make use of the mistaken use of the word ‘fatigue’ in both cases.
A person with ME is highly motivated to be active. When they start to do anything involving use of their muscles, they experience almost immediate ‘muscle failure’…not ‘fatigue’. At this point they are likely to get quite upset.
A person who is depressed doesn’t ‘feel like doing anything’. This is ‘apathy’. not ‘fatigue’.
If encouraged into physical activity, their mood will lift.
Muscle failure is clearly distinct from apathy. The word ‘fatigue’ needs to be retired in both cases.
And the sequence is absolutely the opposite…the person with ME starts off eager, is frustrated by their muscle failure, and gets upset.
The person with depression starts off feeling apathetic, does something involving muscular effort, and feels more cheerful.
I wish that doctors and psychiatrists were taught this simple distinction.
I do get cross about this…it is my contention that anyone off the street could make a differential diagnosis between ME and depression. In five minutes. Over the phone. ‘When you exercise, do you feel better or worse?’
And another tiny point….how do the psych lot explain a person exercising one day and coming down with a sore throat the next? How to they explain that sequence psychiatrically?
My feelings about this as a psychotherapist who spent years making sure not to misdiagnose a physical disease as a psychological problem is that these psychiatrists are dishonoring their own profession with such determined sloppiness.