What Causes ME? Why are there sixty theories about ME/CFS?

We are sure about one thing about ME/CFS: medical science does not know yet what causes it. It certainly does not know how to cure ME/CFS. We who have had it have some ideas and for us the cause is "immune dysfunction".

My Theories

I would compare the immune dysfunction in ME/CFS to what can happen when a cake goes wrong: you may have all the right ingredients in the immune system as you do in making a cake, but unless the sequence of mixing them is correct or the ratios of ingredients are right (i.e. there is the right balance) the cake falls flat. This is what immune dysfunction/imbalance is like. This kind of dysfunction is very difficult to demonstrate through medical tests.

There are for me four main contributing factors.

  • Genetics, an inherited genetic predisposition to immune dysfunction
  • Depleted nutrition (e.g. too much sugar causing immune weakness) may be another vulnerability which in turn causes immune dysfunction. These factors may contribute because there is an underlying physical weakness (genetically) in people with ME. It is the physical weakness that must be taken into consideration and corrected in order for healing to start. Poor diet must be corrected, allergies must be treated and patients must learn techniques of how to de-stress regularly to help their body cope better. Techniques for two of these approaches are on this site.
  • Overuse of antibiotics, the possible side effects of innoculations, vaccinations and the kind of infection you can get when travelling to Africa and hot countries.
  • Chronic stress is one of the factors which may contribute to immune dysfunction in ME/CFS, which may make some badly stressed patients more susceptible than others. If there is already a genetic failure to de-stress properly during ongoing stress, clearly these patients will be more vulnerable than those whose genes enable them to "go with the flow" better. Stress can lead to all kinds of illness as well as to hyperventilation which is related to allergy which is dysfunction of the immune system.

A Mutifaceted Condition
Sufferers sense that healing is mutifaceted and therefore strongly object to a psychiatric approach, which is not a "cure" or even a basic treatment. Only physical interventions, those which avoid pushing the muscles, lower stress levels, detoxify the gut and balance allergic reactions i.e. those interventions which strengthen the immune system) will be effective in the long term. Specific muscle treatments in ME/CFS (e.g. graded exerise) may very well exacerbate the condition and permanently prevent recovery.We have noticed some patterns in ME/CFS, particularly relating to glandular fever and "jabs" (one, or more likely, more than one) before going abroad:

Aspects of ME/CFS

  • There my be a genetic factor in ME e.g. one parent, both parents or grandparent has had a chronic immune- related disorder or are highly allergic. People with ME/CFS lack genes that cope with accumulated stress: see interesting recent research results on : http://www.medpagetoday.com /Neurology/GeneralNeurology/dh /3130 This would, in turn, undermine the immune system. So to reverse the damage one should a) learn stress coping better e.g. using music and b) strengthen immunity through diet etc.
  • Genetic faults can develop. Recent research into cancer suggests that genetic "faults" or malfunctions may not be inherited but simply develop. Please see here.
  • Many sufferers may have or develop deficient immunity, possibly due to poor nutrition, lack of key minerals like zinc in the soil or through developing food allergies e.g. to wheat and favourite foods.
  • Stress could to be one of a number of contributing factors in ME. Try humour as a proven antidote to stress. Also listening to classical music (most notably Mozart) for 20 minutes a day, lying down, on headphones, which is as effective as taking tranquillisers.
  • Many sufferers are often highly sensitive and idealistic people who have been severely stressed when faced with brutality, violence, bullying and warped thinking. Avoid these things.
  • Many sufferers are highly creative, generous, caring people (e.g. teachers, nurses, social workers) with a deep need for warm, loving relationships, some of which have failed or have not materialised. It is well known that good relationships are supportive but one must pace oneself in relationship in severe ME as they do drain one as well, even the best.
  • Some sufferers could have had one very forceful and/or highly anxious parent with low self-esteem expressing itself as controlling behaviours or have been subject to other stresses, such as abuse or emotional bullying in their family (but this is not always the case). This plus the genetic element of ME/CFS undermines the immune system.
  • Sufferers may not have been enough emotional "affirmation" in childhood and as a consequence they have low self-esteem. Some adult patients talk about their life as "a constant struggle", particularly women alone e.g. paying a mortgage or sensitive men who are "trapped" or manipulated in some way..
  • Some may have been abandoned by a parent or have had many operations, accidents or illnesses.
  • Some may have been recently abroad to a country which required mutiple "jabs".
  • The physical and emotional resources of some patients are likely to have been or felt depleted throughout their lives. But a key point is this: their genetic make up (inherited and/or environmental) makes them more susceptible to stress and less able to handle it. NB Excessive stress responses are related to a lower capacity to cope with them in the first place.
  • Some ME sufferers have comforted themselves with inadequate junk food diets, high in sugary carbohydates with depleted vitamins, few fresh vegetables and fruit.
  • Some may have taken been exposed to chemicals (for example during some preservation treatment in their house or from sprays) or in food - preservatives and additives which must be avoided in the diet recommended on this website.
  • They may develop glandular fever or another virus or enterovirus. (NB ME sufferers should not take Chinese herbs in ME as the interactions with glandular fever virus can develop into cancer).
  • They are quite likely to have taken a (long) course(s) of antibiotics which kills off the beneficial flora in the gut (which is an important part of immune system).
  • There may be an incident of bullying or intrusive trauma, an emotional shock causing moral confusion* (very hard for the immune system to handle) or a period of several high stress events, coming close together. Because someone with ME is already depleted genetically they find coping with the trauma more difficult than others. They become "victims" through being physically or emotionally depleted in the first place.
  • All this physical and emotional "overload" (physical/stress burnout) may trigger ME. A minor enterovirus which is not fully eradicated by the immune system may be the "final straw".
  • The idealistic character of ME sufferers urges them give to others, beyond what they are receiving themselves. They often exhibit great concern and care for others, even for those who "drain" them. Too much giving can drain the immune system (lead to "burnout"). They must learn to balance giving with receiving. One ME sufferer was warned before ME that she was "drawing on inner resources that she did not have". Those inner resources were also related to her physical status (her genes).
  • They continue to be bullied after they develop the illness (see page on Assertiveness).
  • There is growing evidence that people with ME have a naturally elevated response to stimuli and stressors. They can only handle a certain level of stress stimuli in their lives (or they get overload). For them, ME may be a self protective mechanism, a grim kind of relief from unbearable accumulated stress. Times of complete quiet and rest are beneficial (personal "retreats") particularly for those with severe ME. Double Sunday "rest days" per week are highly recommended and one weekend a month for all those who have had ME should be scheduled as a "retreat" weekend.

*moral confusion - this means either a) one is unsure about what was the right/wrong reaction (especially if the other party is in a position of authority) or b) one imagines that one has contributed to some personally damaging event or c) one feels guilty and confused about how much blame to shoulder oneself for an event (which is actually the responsibility and the guilt of others). The question to ask oneself in these cases is "Who was control in this relationship?" i.e. who had the power? The answer is often "the older/other person". You cannot be responsible if you are powerless, unless you have been intentionally manipulative.

It important ot accept that "patterns" such as those listed above does not in any way suggest that ME sufferers are responsible for their illness or their genes. Apart from advice on eating a healthy diet, there is no training on how to protect the immune system or on genetic diversity, formal training on identifying or tackling bullying (a growing problem in the modern world) or formal training in handling daily stress and aggression. These too may only be minor contributory factors in ME.

The theory above does not in any way suggest that ME sufferers are responsible for their illness or their genes. Apart from advice on eating a healthy diet, there is no training on how to protect the immune system or on genetic diversity, formal training on identifying or tackling bullying (a growing problem in the modern world) or formal training in handling daily stress and aggression. These too may only be minor contributory factors in ME.

The underlying physical/genetic weakness is at the root of an impaired threshold for coping with acute or ongoing stress.

How Medical Science Treats What it does not Understand

The first thing to understand is that medical science is "empirical" That means that the spirit of the scientific age is based on believing only what can be detected by the senses and measured. "If you cannot measure it, it does not exist" is the scientific viewpoint. This does not suit mysterious, invisible conditions of the central nervous and immune system, like ME/CFS.

Second, medical science moves forward through what have called "paradigm wars". Medicine is confrontational. Sub-sets of medical professors and doctors set up as "hypothesis enthusiasts" pushing their (often quite erroneous) theories at conferences. Some have strong contacts with the government and popular press. Editors do not fully understand that medical science moves forward by a kind of "war of hypotheses" and they may print warped headlines and "balance" what well-qualified professors say with what a national support group leader says. The public are hardly going to be convinced by someone without medical qualifications! But this professor's hypothesis may not have any more authority or acceptance in the mainstream medical community than anyone else's. ME/CFS patients write angry letters to editors which causes editors to avoid printing anything about ME/CFS again. So ME/CFS loses press coverage and patients turn to the Web. Sadly, this unsatisfactory medical "war", leaves suffering patients utterly abandoned and congregating on the Web. Finally,the best research doctors whittle down the many theories, listen to patient groups, who are in fact "expert patients", and start to find the correct answer. This process, however, takes decades or even half a century. We hope we are nearing the end of it in ME/CFS: It is a most unsatisfactory process and diminishes the human rights of people who are ill with new conditions.

Currently, those seeking to identify the causes of ME/CFS need to evaluate separately (and together) three important current theories of "ME/CFS" which are not, by any means, mutually exclusive (i.e. they are all likely to be true in some way).

a) immune depletion and dysfunction (see this site)
b) genetic abnormalities - stress genes missing in ME/CFS patients and unusual proteins in the spinal cord (see US Center for Disease Control link below). There is research by Dr Jonathan Kerr showing that 16 genes controlling immunity are "wrong" in ME/CFS patients.
c) chronic heart failure (see Dr Paul Cheney link below).

These theories are possibly going to coalesce into one unified theory of ME/CFS which will eventually explain what patients with ME/CFS actually feels in this complex physical condition.

See here for Theory c) on heart failure set out in the Dr Paul Cheney files.
See here for Theory b) Center for Disease Control page on genetic causes. Recent US research findings suggest that there are genes missing in those with ME/CFS, those that control accumulated stress. (See my stress management page). This CDC article supports our dietary approach to ME/CFS : "It should also be added that a balanced diet can be conducive to better health in general and would be expected to have beneficial effects in any chronic illness." quoted from the US Center for Disease Control website.

Alison also notes:
  • We are all in need spiritually, but people who subtly bully the vulnerable/those with disabilities are to be regarded as particularly "needy". They may have positions of authority (e.g. even professionals treating ME) but, underneath, their way of thinking is warped by some form of rejection/fear of weakness, lack of insight/empathy and/or self-centredness which some might regard as verging on a psychological disorder but which the believing Church would regard as "sin". These people seem insensitive or lacking in the impact of their actions. They need to be gently shown that what counts is not what they perceive as the impact but the actual impact of their actions. They must see that they are morally responsible for the results of their behaviours. People with ME are not usually well enough to confront others (and we would not advise it) but they can pray for them. They must avoid further instances of direct attack and confrontation, in order to get well. Use assertiveness technques to handle aggression.
  • We have not seen any case of someone being healed overnight from ME by finding a loving relationship or "perfect partner" or by undergoing psychiatric analysis or counselling. The reason is that the cause of ME is organic (physical and genetic). However, love and sensitive human care are very supportive in the larger battle to regain health.
  • There are very strong genetic, environmental and viral causes underlying ME. Though it may not heal them physically by itself, identifying traumas, stresses and injuries helps sufferers recover mentally, in the long run. This may encourage them to undertake a health regime (such as the one outlined on this site). Anything that increases self-confidence and reduces any kind of stress will slowly support recovery from ME if combined with a health/allergy regime.
  • some of us believe that illness is connected to spirituality, as well as to physicality. On a spiritual level our illness may well be connected to stress caused by having hidden idolatrous attitudes (which come crashing down in ME) which we need to analyse, uncover, admit and discard, in order to get well. Liberation from self-deception, from enmity towards God, from wrong attitudes and wrong thinking is part of the wholeness (salvation) that can grow out of a serious illness like ME/CFS.
  • For new ways of looking at illness, including the theory that it has a good purpose in our lives, see Priscilla Maurice's book, which I have recently published (see my Home Page for link).