There is a debate as to whether Myalgic Encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are the same condition. This article discusses the main issues around this debate, and why it is important to people with an ME/CFS diagnosis to understand this debate.
ME
Some people believe that ME and CFS are separate conditions. The Nightingale Research Foundation argues that ME is caused by measurable injury to the vascular system of the Central Nervous System, which can be detected by a brain SPECT scan. If brain jury is not detected, then the person does not have ME. You can read more about this here: http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf
CFS
Some sufferers don’t like the term CFS as there are those who mistakenly believe that as CFS cannot be clearly diagnosed, that CFS is a psychiatric illness. The implication is that the illness is ‘all in the mind’. This has resulted in cases where insurance companies have refused to pay out claims where there is a psychiatric exclusion clause.
This is flawed thinking for the following reasons:
1. CFS is a real physical condition. Anyone who has led a full and active life, and then been affected by this condition, knows this. A Doctor who assumes that a patient that they don’t really know, who led a full and active life, and is now reluctantly lying in bed, is simply depressed, isn’t really doing their job properly.
2. If a Doctor is unable to find a cause for an illness, this does not mean that the condition does not exist. Some Doctors have told me that certain tests have limitations and may come back all clear, failing to detect problems.
3. It is possible that there are conditions/disease mechanisms that have not yet been identified.
4. Consequently it is reasonable to suppose that Doctors don’t know everything. With the greatest respect, there may be limitations to the Doctors understanding of certain disease processes.
5. Interestingly, I have recently come across a test called cardiopulmonary exercise testing (CPET), which uses objective measures to accurately assess an individual’s capacity for work. The Work Well Foundation say that CPET can assist in diagnosing a variety of disorders including CFS/ME and fibromyalgia syndrome (FMS).
See: workwellfoundation
What should I call it?
It would seem that if you call your condition ME, some people will tell you that you don’t have ME, unless you have had a brain scan. Yet if you call it CFS, other people might say that you shouldn’t use that term.
I can see that there may be a valid reason to argue that ME and CFS are distinctly different, but this view has not been widely embraced by the medical community. I didn’t have a brain scan when I had ME/CFS, and don’t know anyone who was offered one. When I was ill with the condition, my Doctor diagnosed chronic fatigue syndrome, so I tended to use that term on the whole.
You have to decide for yourself. If you have a good relationship with your Doctor, you may want to discuss it with them. Remember that whatever term you use, be prepared for those who don’t understand the condition, and who might be dismissive. It is important that you know in yourself that CFS is NOT all in the mind. The more you are clear about this, the less anyone else’s opinion matters.
Comments
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SIMON PIMENTA is a hypnotherapist, coach and trainer working with people to boost resilience and performance, and minimise stress.
After working in a demanding job as the Director of a Housing Trust, he went off sick and remained unable to work for the next 8 years.
He discovered a pioneering approach to resolving health issues and quickly got back his health, and now trains others using these same techniques, to help them become happier, healthier and achieve their goals.