Living with Chronic Fatigue Syndrome / ME
If yourself or a loved one has just been diagnosed with Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME), you’ll undoubtedly have lots of questions. Understanding a little more about the cause, symptoms and diagnosis itself can help you to make informed choices and support ME/CFS patients.
As a specialist supplements range for those with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, Patients’ Own Nutrition isn’t just a subject matter expert. Our founder, Ed Johnson is an ME patient, so who better to explain more?
What is Myalgic Encephalomyelitis / Chronic Fatigue Syndrome?
Some in the medical profession use Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (ME) interchangeably while others consider them slightly different with ME having stricter diagnostic criteria. CFS is used more in North America while ME is favoured in the UK. We use both.
Regardless of the name, ME/CFS is a long-term physical, biological disease. It comes with a range of symptoms but by far the most common is extreme, debilitating and constant fatigue the likes of which a sufferer will not have experienced before.
When people ask me what it’s like, the closest I can come up with is it’s the worst flu you’ve ever experienced, the worst jet lag you’ve ever had and the worst hangover you’ve ever suffered through, all occurring at the same time.
ME and CFS can affect anyone, including children. It’s more common in women than men and it tends to develop between the mid 20s and mid 40s.
What causes ME and CFS Symptoms?
Like many diseases, doctors don’t yet know with certainty what causes Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) to develop. A lot of research has been carried out by scientists to understand what makes ME/CFS present and while no conclusive findings have yet emerged, some research shows that symptoms are caused by:
- Brain inflammation
- Systematic inflammation
- Low blood volume
- A deficiency within the immune system
- The presence of abnormal bacteria in the gut
- A gene-based abnormal reaction to physical exercise or abnormality in energy metabolism as a result of exercise
- The presence of abnormalities in the hypothalamic/adrenal/pituitary system
- Abnormalities of the autonomic nervous system
These are not conclusive findings and aren’t yet used as yardsticks for diagnosis of Chronic Fatigue Syndrome and Myalgic Encephalomyelitis. Patients’ Own Nutrition actively funds biomedical research into ME and CFS, via our chosen charity Open Medicine Foundation. Patients’ Own Nutrition donates 20% of the profits from our ME, CFS and Fibromyalgia dietary supplements to help further our understanding of the diseases and help find a cure.
What are the symptoms of CFS and ME?
Chronic Fatigue Syndrome and Myalgic Encephalomyelitis cause a wide range of symptoms (there are thought to be around 60 in total) and not every patient will experience the full spectrum. Some patients will also have more severe symptoms than others. Common symptoms include:
- Severe, debilitating, recurring or constant fatigue
- Problems thinking clearly or processing new information
- Feeling tired after sleep or insomnia
- Orthostatic intolerance – this includes feeling a very strong urge to lie down and frequent dizziness
- Muscle pain
- Sore throat and swollen lymph nodes
- Sensitivity to light, sound and temperature
How is ME/CFS diagnosed?
The Open Medicine Foundation calculates that around 91% of adults living with ME / CFS have not been diagnosed – this means that appropriate medical treatment isn’t being delivered and often, sufferers are not making adjustments to their routine and diet, such as taking nutritional supplements to assist with Chronic Fatigue Syndrome and Myalgic Encephalomyelitis treatment.
There are some similarities with other chronic diseases which makes diagnosis additionally difficult and the disease will often present differently in children and adults. CFS can occur after an emotional or physical trigger, such as an accident or period of illness and may appear suddenly or gradually.
NHS guidelines state that doctors should consider an ME/CFS diagnosis when the patient has extreme tiredness or fatigue that can’t be explained by other causes but cautions that other diseases are often ruled out first.
If you think that you have Chronic Fatigue Syndrome or Myalgic Encephalomyelitis, consult your doctor in the first instance. The Patients’ Own Nutrition community of ME/CFS and Fibromyalgia sufferers can also provide support and share their experiences if and when you are diagnosed. If you have recently been diagnosed, the Patients’ Own Nutrition supplement range is the first vitamin, mineral and nutritional range of science-backed supplements specifically for Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and Fibromyalgia patients. View our full range of 12 supplements in our store now.