ME/CFS South Australia Inc: Report by John Duley

ME/CFS SOUTH AUSTRALIA INC

Registered Charity 3104

Email:
sacfs@sacfs.asn.au

Mailing address:
PO Box 322,
Modbury North,
South Australia 5092

Phone:
1300 128 339

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Monday - Friday,
10am - 4pm
(phone)

ME/CFS South Australia Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.

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Report by John Duley

John Duley is a specialist in purine and pyrimidine metabolic diseases at Mater Hospital, Brisbane.

Metabolic disease: The body’s chemistry runs on a huge series of chemical pathways, producing the chemicals it needs for energy, growth, repair, reproduction etc etc. You could imagine these pathways to be like the processes in a chemical factory, producing nutrients and hormones etc etc and carrying them around to where they are needed. The chemicals are called metabolites, and the process is called metabolism. We have energy metabolism, and growth metabolism, etc. It all works reasonably well for most people.

Most of us have genetic mutations (or changes to our genetic makeup/DNA), because the pathways that maintain (reproduce and repair errors) the huge DNA code in each cell cannot work to 100% perfection. Most of the mutations we have are probably harmless, but some mutations can affect important functions, and then we develop a disease or a pathology. If a mutation affects a chemical pathway, it produces a ‘metabolic disease.’ Then it is like a blockage in the production line somewhere in the factory.

There can be a rapid build-up of a natural chemical that normally is just a part of a process in the body and never normally reaches high concentrations, but when there is a blockage such a chemical can become toxic to cells because it builds up to unnatural levels. Or the blockage can produce a lack of a chemical downstream in the process line, and there is ‘starvation’ of cells for the necessary chemicals.

Quite a few neurological diseases are caused by inheriting a mutation from parents. The one I discussed was a metabolic disease called ‘MNGIE’ – it arises from a mutation that affects the energy production line (the mitochondria) in cells: a single chemical step has a mutation and this causes toxic build-up of a metabolite that eventually kills the mitochondria.

The most highly energy-dependant cells in the body are the nerves (including the brain), the muscles and the retina. Mitochondrial diseases thus usually affect multiple organs: The nerves and brain suffer, usually first causing ‘peripheral neuropathy’ or loss of sensation in the peripheral parts of the body, the legs and arms; The muscles not only lose power and fatigue is experienced but also there are severe gastric problems because the digestive system uses a lot of muscle power, and the eye muscles also weaken – the eyelids droop (ptosis) and it is difficult to turn the eyeballs (ophthalmoplegia); The retina can weaken so there is loss of eyesight.

Metabolic diseases are typically ‘progressive’ – they get worse with age, because there is a continual build-up of toxic chemicals/metabolites or starvation of cells. I pointed out it is necessary to exclude known metabolic diseases where a ME/CFS patient has appropriate symptoms, because we could be trying to treat the wrong problem (and mitochondrial and some other metabolic diseases mimic ME/CFS). But I was also of the opinion that ME/CFS patients might be suffering from metabolic problems (eg, build-up of toxic chemicals). I admit I may be wrong…

Toxicological disease: Most of us are aware of what can happen if we get a bacterial ‘infection’ in a cut or in the throat following a flu virus. There is an increasing inflammation of the affected area, and eventually the bacteria can cause cell death, destruction of tissue and even get into the blood stream (sepsis). The bacteria cause this destruction by producing nasty chemicals that kills cells – these are not normal chemicals that our bodies produce but foreign chemicals that are toxic to us. ‘Antibiotics’ are simply another form of toxic chemical, but they are toxic to bacteria, not our cells (antibiotics are mostly produced by fungi/moulds, which compete with bacteria in the wild). Typical nasty bacteria are streptococcus and staphylococcus, but there are lots of others.

However, not all bacteria are bad. We have zillions of them living on and inside our bodies (mainly inside the gut – and the digestive system is strictly speaking ‘outside’ the body – it has a thick protective layer that shelters the ‘inside’ of our body from the things that we eat, absorbing just the bits it wants). A typical ‘good’ bacterium in the gut is ‘E. coli.’ Our gut also likes the bacteria in yoghurt, etc. We actually depend on some gut bacteria to provide us with chemicals that our body needs but can’t make for itself (we call these ‘vitamins’). If we get a nasty bacteria in the gut, eg, ‘food poisoning’, there can be severe problems because the bad bacteria are producing toxic chemicals that either kill the protective layer (eg, cholera bacteria) in the gut, or the gut mistakenly absorbs the toxins and they cause havoc elsewhere in the body (some bacteria can produce toxins that affect nerve cells, producing paralysis etc). These severe infections in the gut usually subside after a few days – the gut clears itself (by diarrhoea/vomiting).

But if we get a sneaky bacterium that lives in the gut and produces toxins but doesn’t produce a response by the body to get rid of it, then we are stuck with living with a continual flow of bacterial toxin from the gut into our body. This seems to be what Kenny De Meirleir and Richard Schloeffel were saying: that ME/CFS is the result of abnormal gut bacteria or ‘microflora.’ These abnormal bacteria are producing continual low-dose toxins that leave the ME/CFS sufferer fatigued, disoriented etc. Gut problems are common. Similar to mitochondrial problems, many organs are affected, especially the nerves and muscles. Do the toxins target the mitochondria? We don’t know – there has been so little research of ME/CFS!

But I think ME/CFS sufferers don’t usually get the full mitochondrial range of symptoms – they don’t usually get peripheral neuropathy or ptosis, for example. Should antibiotics work? Many bacteria are unaffected by antibiotics because they were made by moulds to attack just certain bacteria that they compete with, not all bacteria.

Tetracycline antibiotics are very powerful and are ‘wide spectrum’ – they attack many bacteria types – and seem to help with some cases of ME/CFS but not all (I think the minority). And tetracyclines are so powerful that they are also toxic to our cells and cause severe side effects – the cure can be worse than the disease!

I understand that Richard and Kenny find success by trying to replace the bad gut bacteria with good ones, in two ways – giving good bacteria in the diet (yoghurt, supplements etc) which will compete with the bad bacteria and hopefully replace them; and changing the diet to provide an environment in the gut that suits friendly bacteria and removes any unsuitable foods that may weaken the body in other ways. Not everyone responds – some sufferers still go gradually downhill. My wife is a ‘lucky’ one – she has had ME/CFS for almost 20 years but is slowly getting better year by year, not worse, and of course her age will also be offsetting any gradual improvement – we lose mitochondria as we grow older, that’s why we grow weaker etc!

OK, sorry this has been long-winded, but it’s not an easy concept to grasp, but I hope it helps.