10. What Might Cause ME? (Part 1)

A brief overview of some of the possible causes, triggers or mechanisms involved with ME


Hello! M.E - Myalgic Encephalomyelitis - is not just about being “tired all the time”. It’s a serious, real illness. It affects the brain and the central and autonomic nervous systems - our concentration, sleep, co-ordination, temperature regulation and blood pressure, dizziness, hypersensitivity, hormones, and so on; it affects the muscles, pain and stamina, and we can feel unbelievably ill after any sort of exercise or activity, totally out of all proportion to the amount of exertion, and take hours or days to recover from that unbearable exhaustion; and it affects the immune system, feeling like we’ve got flu all the time, and sore throats and so on. It can also affect the blood circulation, the emotions, and the digestive system. There can be literally more than 50 symptoms associated with ME - see one of my earlier videos for a list!

So how does ME work, and what actually causes it? Well, unfortunately, there’s still not a consensus within the medical profession on a definitive cause and mechanism for ME, and there is no single diagnostic test for patients, such as a blood test, to “prove” whether they have ME or not. This has led in the past to some doctors, psychiatrists and policy makers to try and suggest that ME isn’t a physical illness, but that instead it’s a “behavioural disorder” - that people with ME don’t get better because we have “wrong thoughts” about being ill when we’re not, that we think our symptoms into being worse than they really are, that we get into a “habit” of thinking we’re ill or are “afraid to get well”, or that we get “de-conditioned” from the idea of being well - physically or psychologically and socially. Or even worse, that we’re lazy or “malingering”, or that people with ME are hypochondriacs or hysterical, and aren’t even worth any medical attention. Thankfully, instead today most doctors recognise ME as a real disease, and research and understanding of the illness is improving.

A huge amount of biomedical research has already been published, which all clearly shows that ME is in fact a real, complicated, neurological and multi-system disease. There are something like 4,000 - 5,000 papers over the last 60 odd years that show that these symptoms and things going wrong in our bodies are real and often severe, and can be measured - they are not imagined or exaggerated - in fact most people with ME usually understate how bad they feel most of the time.

In my next video, I’ll start to discuss some of the main ideas that I’m aware of about ME, but here are some starting points that seem to be known:

ME is an acquired illness - it’s something you get, or is triggered; it’s not a condition that you are born with.

It usually occurs sporadically - one individual person gets it at a time. But there have also been at least 60 epidemics of ME, or outbreaks of it in clusters, since the 1930s - including hundreds of people at the Royal Free Hospital in London in 1955, and hundreds at Incline Village, Nevada, in 1984. Doctors say this suggests those cases would have been caused by an infectious agent, like a virus or bacteria, or possibly by a toxic environment. ME has also been reported occasionally to affect several members of the same family at the same time.

There seems to be some genetic predisposition which can partly affect how likely someone is to get ME, apparently usually passed down from the mother.

The ME Association, and others, suggest, that ME can be triggered by a range of different things. Most commonly, ME starts in a young adult who appears to be healthy and active, when they suddenly get a serious viral infection, and don’t get over it - but children or older adults can get ill with it too. It most often starts with a severe flu-like infection, a glandular fever (Epstein Barr), herpes viruses, cytomegalovirus, meningitis, encephalitis, lyme disease, polio or Coxsackie B, - or sometimes by a bacterial infection. Sometimes it is reported to start following exposure to toxins, organophosphate pesticides and similar chemicals, or carbon monoxide poisoning, or following vaccinations, for example hepatitis jabs. Occasionally, it starts after a major physical trauma, such as a road accident, brain injury or surgical operation, or pregnancy. ME could be triggered by a combination of more than one of these things, often coinciding with major life events or life changes or hormonal changes. Some people instead don’t have a definite start to the ME, but their health gradually declines over a period of months or even years. It has also been suggested that the onset of ME can sometimes be just partly associated with poor nutrition, a weak immune system, or insufficient rest and sleep, or pushing oneself too hard.

That doesn’t necessarily prove that any of those things, or combinations of them, actually cause ME - there may still be some underlying cause which in turn is triggered by them; or it could be the other way round - that when someone gets ME, it activates a virus, so it looks like that virus, or whatever, caused it.

As I understand it, research into ME shows that:

- There is inflammation - and/or reduced blood flow - to parts of the brain, especially the brain stem, and “dorsal root ganglia” on the spinal cord - which has shown up in certain types of brain scans (but these are only used for research, and haven’t been used routinely for diagnosis yet), and in autopsies of people who died who had ME. There are also lesions and other damage to the brain, not unlike in someone who’s had a stroke, although it’s thought this damage may be reversible.
- The hypothalamus and pituitary glands in the brain, and the adrenal glands, are significantly disturbed, affecting hormones, stress reactions and sleep patterns, the immune system, hypersensitivity, and the autonomic nervous system.
- There are serious abnormalities in the way the immune system and the nervous system react to each other, with high activity of cytokines, and other sensory receptors and sympathetic nervous system receptors, especially in response to exercise or various stresses. There may be very low natural killer cell function, and there may be acquired genetic abnormalities.
- The mitochondria in cells throughout the body do not produce energy properly - especially in the muscles, heart, and brain. If you’re a biologist, then in the Kreb's cycle, recycling back to A3P, from A2P (and A1P) is severely slowed down and limited, - so the cells actually can't produce energy, explaining the lack of stamina as well as the slow recovery after getting exhausted.
- The amount of useful oxygenated blood flow around the whole body can be as little as half the amount of someone who is well.
- There is often damage to cells and the cell walls throughout the body, like with a current severe viral infection. And, especially after activity, there is often a very high level of “cell-free DNA” in the blood stream - that’s bits of DNA that have broken out of damaged cells and are floating around in the blood, and can make you feel as sick as someone with AIDS or who is on chemotherapy.
- And there can be high levels of toxins in the liver, blood and muscles.

Also in the last couple of years, some research has suggested a possible strong link between a retro-virus called XMRV, and ME, as well as with some other neuro-immune diseases, and prostate cancer and lymphoma. It has been suggested that XMRV, like HIV, could be an infectious retrovirus, - which in susceptible people could suppress their immune system and affect their body’s hormone regulation and stress reactions, in some way causing ME or allowing it to develop. A lot of people are hoping that this could be a promising breakthrough, but so far though, this has not been confirmed by other medical scientific research yet.

Next time, I’ll talk about some of the ideas and theories about how any of these things might actually cause or lead to ME.