I believe that Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, Post Viral Syndrome, Chronic Fatigue and Immune Dysfunction Syndrome and Fibromyalgia are all part of a single spectrum of disease. They all respond to much the same therapeutic approach. In this article, I use the acronym ‘ME’ to include all of these conditions.
I have suffered from ME for over 40 years. I have experimented upon my body using a large number of therapeutic measures and have gradually brought my ME under control.
Nevertheless, even after 40 years, I am still learning how to achieve mastery over my ME and my health is still improving.
There is no known pathology. ME is not a discrete disease. It is a syndrome – a collection of symptoms. It is characterised by profound, relentless fatigue that is both physical and mental and is vastly different, both quantitatively and qualitatively, from everyday tiredness. Patients must pace their activities extremely carefully in order to maintain a similar level of energy each day.
Any excess activity invariably worsens the symptoms. Patients may have to rest between any two activities for an hour or more, depending on the severity of their illness. Fatigue is often delayed by 24 hours – exertion on one day can make the patient much worse on the following day. Patients who push too hard risk being made ill for several subsequent days or even weeks.
There is poor concentration, poor short-term memory and impaired brain function. There can be severe, widespread muscle and joint pain, muscular weakness and many other symptoms. There may be bradycardia and hypotension.
Many ME sufferers look well. Their friends and relatives, even their doctor, may be deceived into believing that nothing much is wrong, even that the whole thing is ‘all in the mind’. This is not correct.
Causes and triggers
No one knows what causes ME. I believe that one or more triggers over-stress the immune system. I call these Immune System Stressors (ISSs). It’s like loading the last straw onto a camel’s back.
ME is a physical disease. It can be triggered by a combination of physical and mental ISSs, including viral illness, glandular fever, any immunisation procedure, any condition that arouses the immune system and any mental stress such as bereavement.
Once ME has established itself, the immune system becomes hypersensitive to other stimuli that would normally be ineffectual. For example, the patient may become hypersensitive to environmental pollutants, develop multiple allergies and/or succumb to Multiple Chemical Sensitivity (MCS).
ME patients are often ‘over-achievers’, ‘people pleasers’ and/or ‘perfectionists’.
No reliable clinical signs or laboratory tests exist. Objective assessment of the level of fatigue and disability is impossible. The doctor must listen to the patient and trust their assessment, supported by the observations of friends and relatives.
With experience, the doctor can make a diagnosis on the history alone, provided that conditions that mimic ME have been ruled out by clinical examination and/or laboratory testing.
These include hypothyroidism, anaemia, TB, MS, Guardia Lambia, Myasthenia Gravis, Brucellosis, Lyme disease (Borrielosis), Toxoplasmosis and Auto-immune Thyroiditis.
What to test for
It is essential to carry out the following:
- Urine analysis for protein, blood, and glucose.
- Full blood count and erythrocyte sedimentation rate or plasma viscosity.
- C reactive protein.
- Serum urea, creatinine, electrolytes, and calcium
- Random blood glucose.
- Creatine kinase.
- Liver function.
- Thyroid function. Screening blood tests for gluten sensitivity.
- Serum ferritin (children and young people only).*
NB: Serological testing for viral or bacterial infections should not be done unless the history indicates such an infection.