Friday, December 24, 2010

Neurological Illness in ME.

In chatting to online friends with ME, I end up repeating the ideas which have helped me to live with ME again and again, so I thought I would write them down.

Lack of diagnosis coupled to a desire to do my bit and push through ME contributed to a push crash cycle of relapse in my case, which not only hindered convalescence but caused deterioration. I hope this advice can prevent that happening to others.

One of the hardest things I had to deal with was not so much the muscle pain and weakness but the derangement of my nervous system so the first topic concerns what I have understood about managing your nervous system with ME.

Neurological overactivity paradox.

ME is considered by the World Health Organisation (W.H.O.) to be a neurological disease and while I might differ about its underlying nature (which seems to be immunological in my own case) there is no doubt the nervous system is often seriously affected by ME.

Contrary to the outward appearance of ME patients who are usually obliged to restrict their activity, ME can sometimes lead to febrile (feverish) mental activity which prevents sleep and contributes to emotional lability, cognitive impairment and sensory hypersensitivity.

Severity of symptoms can range from feeling a bit wired to mind altering psychosis but can spiral out of control (especially if not recognised) for reasons I will try to explain.

Why overactive?

Dr Paul Cheney who lives and works in the USA is an experienced ME clinician who understands well that many ME patients he has treated have increased nervous system sensitivity. For example it is well known that people with ME are often hypersensitive to light and sound and smells and other sensory stimuli. ME related cognitive difficulties and sleep disturbance etc could also be ascribed to the same kind of problem.

Neurological overactivity in ME is real, so something is causing it. Dr Cheney explains this as the nerves reacting to the harm caused by ME and becoming more active. He noticed that this also happens in cases of physical injury and suggests it may be a general response to any kind of nerve damage (not necessarily due to an immune response) possibly to assist organisms in becoming alert and avoiding further damage. Speaking as a zoologist it makes sense to me that in our natural environment we evolved to become more alert if something is harming us.

Vicious spirals in ME.

We don't know how this increase in nerve activity comes about as yet (¤). However it happens, PWME (people with ME) still experience stress like anyone else, if not more so due to their increased sensitivity, which activates their nervous system even more via stress hormones eg adrenalin and cortisol and this kind of stress response is well known to spell disaster for people with ME. This is probably because stress hormones prepare people for action and so not only activate the muscles and nerves using up the limited available energy thus causing an energy crisis, they also suppress the immune system as well, to divert energy away from immunity and towards muscles and nerves to prepare for action. This is unhelpful since immune mediated ME appears to involve persistent viruses and a suppressed immune system can permit a viral episode to commence. This is one potential vicious spiral. You feel ill, so you try harder stressing you more, making you iller etc etc.

(¤)(It is worth remarking that the mysterious ciguatera epitope detected in ME patients is one line of investigation which might relate to nerve activity in ME, but we don't know enough about it and there may be more to it than that. It certainly deserves more research.)

What I must state for the record is that I dont agree with the tacit assumption made by some with limited experience of the condition that the kind of ME which I and many others experience begins as a vicious spiral between behavioural stress responses and immune system. I cannot speak for all CFS patients but ME is far too pernicious for that explanation in my own case and I have much personal evidence that virally initiated immune disease is the primary cause of ME which then greatly increases vulnerability to secondary illnesses which can include vicious spirals involving stress as well as other kinds of factors. While these can be significantly reduced by careful management the primary cause cannot currently be treated, hence the Glass Cage effect where one is stuck between a rock and a hard place and full recovery is not achieved despite long periods of convalescence. (See also "Seven Distinct Subtypes" below for discussion of the different types of ME).

Another vicious spiral occurs because ME involves inflammations with low energy levels in cells which makes them prone to damage leading to nerve activation as mentioned above. Hypersensitive nerve cells use more energy not less, when nerves use a lot of energy anyway. When a cell is low on energy but using more energy it is more likely to be damaged leading to even more activation, lower energy etc etc. If Dr Cheney is right, this implies a potential vicious spiral where energy depletion with increased nervous sensitivity leads to more severe energy depletion and potentially nerve cell damage or death, leading to increased nervous activity etc etc. This matches my experiences pretty well and there is plenty of evidence that brain structure changes in ME, so it is my current working hypothesis to account for secondary neurological illness on top of immunological ME, which is what I believe the W.H.O. classifies as a neurological disease.

It strikes me that evolution would tend to find a way round the particular problem that nerve stress leads to a vicious spiral of nervous overactivity in an immune crisis and it may be that brain fog and the sense of fatigue that many people with ME (PWME) experience are the body's natural way of countering this and telling us it has made a deep physiological choice which means it is best if we use less energy and work with our immune system rather than struggle against it and damage our health in the process.

Unfortunately in ME the immune activation is chronic and while our workaholic modern industrial culture grudgingly allows for the need to deal with a bout of illness, the attitude towards chronic illness is even less patient and pressurises people, both those with chronic illness and those in positions of authority over them, to deny that it is really necessary to rest all the time when sometimes it really is. So people with ME are bound to experience conflict here which doesn't help and IMHO this cultural dimension may contribute to the problem, I feel it did in my case. People with ME need to be empowered to listen to their bodies and react as nature requires.

Secondary neurological illness.

The vicious cycle of energy depletion people with ME suffer is just the tip of the iceberg and beginning of secondary illness. Dr Cheney observed that over longer periods of time further interactions within the brain lead to the decrease of stress hormones. It is viewed as depletion but it may just be a necessary reduction which the body makes to try to keep nerve activity balanced, as it would counteract the two vicious spirals mentioned above by minimising both immunosuppression and nerve activation. We don't know enough at this point. However the clinical result Dr Cheney observed is that this makes people with ME mentally unable to deal with stress and complexity. This is like a double whammy of confusion on top of sensory hypersensitivity which magnifies the slightest disturbance out of all proportion whether you like it or not and leaves a proportion of ME patients with a condition comparable to shell shock. In addition there is evidence that physical changes in brain structure associated with longer term ME may result in cognitive impairment. Add to this combination physical pain and weakness caused by the same flu like immune reaction and you begin to get the picture, but it doesn't stop there.

Commonly reported is the subsequent destabilisation of midbrain functions causing problems with temperature control in the hypothalamus, emotional lability in the limbic system, blood pressure, balance and assorted neuralgias. These knock on affects in turn exacerbate the vicious cycle ongoing in the nervous system and if unrecognised can add major stressors from within the patient to those coming from the outside world, potentially pushing an ME patient's nervous system into very vulnerable states.

The degree of severity for any individual is variable in the first place but the good news is that good management can reduce the tendancy for  secondary illness to become more severe. Management in turn depends on the standard of advice available to patients which in turn depends on understanding the principles behind the illness. Here science has only scratched the surface but knowledge is not the only obstacle, there also needs to be a political will to offer good advice to patients and let them rest appropriately. Let us not forget how and why this basic decency was denied to patients for so long. To that end accurate diagnosis remains a priority for ME research.

Most patients, even when undiagnosed as I was for 10 years and left without advice, eventually learn from the nightmarish experiences and injuries secondary illness can bring about to manage their energy balance carefully. But this does permanent damage and it doesn't have to be this way. We can all benefit from giving appropriate moral support and recognition to empower ME patients to rest appropriately and so prevent more severe secondary illness while science seeks a cure.

How does that happen?

Something is harming the nervous system in ME and setting off the neurological overactivity spiral. It could be inflammation which is often reported by PWME in conjunction with allergic and autoimmune symptoms, probably as a result of the TH2 immune shift (see below), but there is more to it than that.

People with ME (aka PWME) are known to have increased levels of lactic acid in their brains (300% of normal according to Shungu's SPECT scans) and indicators of high levels of apoptosis (cell death) in their bodies, which is something Gow and Kerr have detected with their gene assays. These are indicators of physiological stress accompanying immune activation, corroborated by Klimas' analysis of cytokine activity in CFS.

As stated above, the problem with increasing nerve activity as a response to the harm done by ME is that it will produce even more lactic acid in the nervous system. Lactic acid is a sign of metabolic stress and normally increases when healthy people do exercise e.g. athletes doing endurance training. This is known as the oxygen debt and it arises from using food to make energy without using oxygen which is termed anaerobic respiration. Paying back the oxygen debt usually happens naturally when people stop exercising and get their breath back.

PWME produce lactic acid without exercising which suggests they are respiring anaerobically like an athlete even when they are not doing any exercise i.e. they feel like they have just run a marathon, all the time. This implies that mitochondria (cell organelles where aerobic respiration normally takes place,) are not working normally in ME and a paper from Dr Sarah Myhill et al on mitochondrial dysfunction in CFS supports this idea.

Why this should be the case remains a mystery. For my own part I contemplate the evolutionary perspective and wonder if mitochondrial shut-down might be an adaptation to stop viruses exploiting the concentrated energy that aerobic respiration produces around the mitochondria. Instead PWME's cells may be switching to the more distributed but less efficient energy produced by anaerobic respiration in the cytoplasm to deprive viruses of concentrated energy and slow down their reproduction to give the immune system an advantage. If this is the case mitochondrial shut-down with anaerobic respiration like this constitutes an immune defence mechanism, like running a temperature. In that scenario it wouldn't matter what strain of virus you had, as the ME, like running a temperature, comes from the patient's own body trying to beat the virus i.e. this might be the same response which makes people feel tired when they have the flu for example which is chronically activated in ME for some reason.

Seven Distinct Subtypes.

This may explain why Dr Jonathan Kerr found seven distinct subtypes of CFS which he regards as seven different diseases but each having comparable energy symptoms which leads to them all being classified as CFS. Which one of those seven is the real "ME" I just don't know, I think they probably all need new names. In my own case the cause is definitely immunological related to viral activity and that might be a defining attribute of one kind of CFS. But that situation may not be the same for everyone with CFS as mitochondrial function might also be impaired by factors other than immune (and maybe also auto-immune) diseases, such as toxicity. In addition different viruses and different combinations of viruses might produce different kinds of immunological CFS with different degrees of debility and prognosese. It seems likely there is much to be discovered about this.

Taking both papers together (seven subtypes and mitochondrial dysfunction,) illustrates the likelihood that CFS is not one disease but a new field of medicine with clinical causes for the several subgroups of patients being related to mitochondrial dysfunction but with different initial causes for different subgroups. In other words, although they may seem similar at first glance, you cannot put all cases of ME in the same basket. For now, when I write about ME I am referring to the immunological variety which I experience and I hope that anything useful I have learned might be broadly applicable to other subtypes, but I fully recognise that not all PWME experience the illness in the same way and will not find all I have learned about my situation applicable to theirs. I expect the current naming convention (or lack of one) to change as we learn more about the different subtypes, which should make things easier for everyone.

Anaerobic respiration would explain a lot.

Lactic acid production in ME patients implies intracellular acidosis. Dr Cheney has suggested the acidic products of anaerobic respiration inside cells are responsible for the well known problem of magnesium depletion in ME, because some of these like citrate can take magnesium with them when they are excreted.

Dr Cheney measured poor oxygen transfer in his patients (corroborated by more recent research) who were experiencing breathlessness and observed their blood becoming more alkaline (i.e. extra cellular or blood alkalosis) which he suggested was due to increased bicarbonate content. He hypothesised this was the body's way of neutralising the acidic products of anaerobic respiration and it strikes me it may also inhibit viral growth, constituting yet another anti-viral defence mechanism and I can see no reason why it should not do both at the same time. Bicarbonate in the diet is potentially helpful and probably should not be avoided entirely however it is well understood that blood alkalinity interferes with oxygen transfer making it less efficient and in ME this exacerbates poor aerobic energy production which constitutes another vicious cycle and a distinct aspect of secondary illness in ME. The blood chemistry involved is related to the problems caused by hyperventilation, though in ME blood alkalosis is not caused by hyperventilation. In my opinion this might explain why some PWME experience a "toxic" feeling of anoxia and breathlessness which cannot be relieved by taking deep breaths, indeed that can make it worse and it also gets worse when one has excess alkaline drinks or foods with bicarbonate in (like certain mineral waters, certain cakes and confections. In my own experience this can sometimes be exacerbated by ingesting salicylate containing foods so that salicylate levels rise above a certain threshold, as this can also inhibit oxygen transfer (and for some people can also trigger nasal polyp inflammation which adds to breathing difficulties). Proper management is as ever, a question of balance.

The upshot of all this is that many symptoms of ME and generalised CFS are explicable as the result of a prolonged and systemic bias towards anaerobic respiration in patients. This pathological kind of fatigue can lead to nerve activation which can then result in a negative spiral and this is why (as ME patients typically learn from experience) there is a need to restrict both physical and mental activity to prevent more severe illness.

( ☼ It is worth noting that immune mediated ME also involves symptoms such as an allergic tendency and recurrent viruses, which Dr Cheney recognised probably result from a TH2 shift. His description matches my own experience and explains why immune symptoms so often accompany the plethora of additional ME symptoms. This is a very important insight and explains another major cause of suffering for ME patients and mystification for general practitioners but as a topic is distinct from neurological illness so I will limit discussion here.)


From my personal experience I can say that when I first got ME it felt as though my brain began to work differently from the way it had before. The disturbance seemed to affect my entire nervous system and subjectively it spread to every part of me, changing who I was subtly but profoundly. I experienced changes in vision and everything seemed painfully bright and more colourful. Odd events like sleep paralysis on waking and lucid dreaming, which had not been a feature of my sleep before, began to occur more frequently, almost regularly. I also began to suffer from hyperacusis (sensitivity to sounds) and was much more sensitive generally, including my awareness of other people. I was less able to clear my mind of the impressions other people made on me and forget them once they were no longer in my presence, the perception of others would linger far longer and ramify more deeply in my own consciousness compared to previously. Added to which I was much more easily confused and upset, clumsier and accident prone.

Fog and Quicksand.

As a consequence of the evidence and my experiences I see the cognitive dysfunction most PWME experience as part of a systemic dysfunction of the nervous system rather than a localised response, affecting most if not all mental faculties. As I mentioned above the fogginess may be a protection mechanism against psychosis, to damp down nervous overreactions which might lead to psychological or neurological damage. It follows you should not try to push through this, it will only make things worse. I say this having tried and suffered as a result.

The whole situation is counterintuitive compared to "normal" life without this kind of disease. You can't clear your mind or get things done by trying harder. Instead, like someone stuck in quicksand, you have to stop struggling as that only drags you in deeper. You have to stay calm and float to the top. If you try harder you only increase the amount of lactic acid in your system, use up precious energy reserves which can end up in an energy crisis and cause a relapse.

Besides this when fighting anything including ME you release stress hormones which temporarily suppress the immune system. This is not helpful when you consider viruses probably cause ME. In addition, some viruses are triggered to replicate by stress hormones, as they have evolved to take advantage of the opportunity which human stress represents to evade the immune system, to reproduce and transmit themselves to new hosts. As a result ME related immune reactions can be more severe after stress, in addition to the depletion of energy and increase in products of anaerobic respiration. In other words, if you push, you crash.

So you have to rest and not push. This can be amazingly difficult and frustrating in a culture dedicated to pushing people to achieve. For willing participants it can seem disheartening if one is used to the emotional rewards of activity and can no longer enjoy the satisfaction of the accomplishments one used to take for granted. This restriction combined with the dismay of other people one might have to disappoint can make adjusting to ME a doubly difficult experience, undoubtedly more stressful than a house move or a divorce or even grieving a bereavement, which I mention since these are said to be the most serious stresses that most people will normally experience. This stress of course increases the severity of the syndrome, but the long and the short of it is that while there is no cure, one has to adjust priorities as well as activity and find one's peace anew in a gentler pace of existence because high levels of activity are simply not sustainable when you have ME.


Everyone has to find their own way through, but the bottom line is that if you have ME and you try to push, you crash. Most people I know with ME tend to compromise and sometimes endure a crash in order to get something important done in the short term. But it is not advisable to push it too far, as you can damage yourself both mentally and physically.

A comparable example is the case of athletes who are advised not to train while they have a virus, as it can be damaging to the heart and muscles. People with ME seem to be in a similar situation, only there are variations among patients and its likely there are several related but different syndromes all being called ME at the moment. For some it is a perpetual illness while for others the condition can eventually respond to convalescence with some degree of recovery. Either way, you have to take it gently to recover and to avoid doing damage to yourself and to get the best out of the life you have and survive until treatments are found, which one hopes, with good reason, are probably only a matter of a few years away.

To pace effectively its helpful not only to moderate physical activity but also to try to stay balanced emotionally and psychologically, stay calm and not get into stressful situations or cycles of thought. Its not always easy when your nervous system is overactive.

Useful Supplements.

Living with ME is in my view all about keeping an even keel which includes balancing your mind as well as body. But what I have learned from ME is that my mind is part of my body, what happens to my body effects my mind, especially what I eat but also infections and immune reactions. While this is a liability in certain circumstances it is also potentially a tool which can help.

To that end there are a few things that one can take to change the situation and help calm an overactive mind, which are appropriate for ME patients.

Magnesium: Is one of the most important. It naturally calms the nervous system and counteracts oversensitivity to an extent. It is commonly reported that PWME are low in magnesium. This is not surprising if it is true as Dr Cheney has suggested that some of the acidic byproducts of anaerobic respiration (marathon runners and ME patients alike) take magnesium ions with them when they are excreted. As I understand it, its important to get enough magnesium to assist this process and also other critical bodily functions which depend on magnesium. However there are a couple of catches.

Firstly magnesium supplementation displaces calcium which can lead in the long term to osteoporosis and weakening of bones and joints. Since living with ME is all about the long term you cannot afford to ignore this and must take calcium supplements if you are taking magnesium supplements.

The second problem with magnesium is that it is hard to absorb in large quantities and in my experience it is often quite tricky to find a supplement which can provide it without disturbing the osmotic balance of the gut and inducing diarrhoea. While epsom salt (magnesium sulphate) is very helpful in bath water as it is absorbed through the skin and a little pinch in drinks can be helpful and harmless, taking it internally in higher concentrations is not so good and quantities approaching one or two teaspoons in a glass of water will usually induce diarrhoea in 3 to 6 hours and lesser quantities can still loosen the bowel content quite a bit. The same goes for magnesium citrate.

However I have found magnesium glycinate does not cause this kind of problem though it is best if buffered with an acid buffer to balance out the pH. It is slightly alkaline and since PWME tend to have problems with blood pH (which Dr Cheney considers is usually too alkaline in PWME) this can cause problems of its own unless buffered. Another one worth mentioning is magnesium orotate which is pH neutral and does not seem to cause a problem.

Taurine: is a simple supplement which is a natural component of bile which protects cells from oxidative stress and stabilises membranes, thus reducing damage and it also calms the nervous system. Best taken before bedtime when required as it can assist other methods of calming the nerves to stop a crazy patch in its tracks so you can get some sleep and recover. It is available at sports supplement stores. It is completely innocuous though it tends to result in a slightly firmer stool so one should moderate doses accordingly. It works well as a one off dose.

Melatonin: I find helpful for getting to sleep at night. It also helps to reset a disturbed sleep cycle and people commonly use it for jet lag. It is very important to get good sleep in ME because this is when the body heals itself and among other things it is when growth hormone is released which supports healing and immunity and also the activity of the liver which is important in digestion and cleaning our blood.

Not everyone finds they respond to melatonin in quite the same way but fortunately for me and a majority of people, one 3mg tablet is enough to make the difference between another sleepless night and a full night of sleep and this makes the difference between a downward spiral versus a steady convalescence. While that is not the same as recovery, it is better than getting worse. Melatonin does not cause the same interactions as other drugs, such as tricyclics like amitriptyline which can disturb heart function, because it is a natural hormone we have evolved to process. A dose of melatonin just gives a little boost to levels of naturally occurring melatonin in our brains, enough to help us zonk out.

In the UK it is a prescription drug. If you have your doctors agreement you can get it online as well. You should not take it if you are driving in the near future, allow at least 6 hours.

Triple Whammy: I find taking all three of magnesium, taurine and melatonin has a more beneficial effect than any one on their own or the sum of the three taken individually.

Zinc: when neurological difficulties are associated with signs of allergy I find zinc has a beneficial effect, reducing the allergic tendancy a little and calming nerves.

B Vitamins including B2: aka riboflavin, this vitamin supports the activity of enzymes which remove stimulants from the blood. Having tested this myself quite a bit I am adding it to the list as it is very real even if I dont quite know how it works. If you have brain buzz due to something you ate B complex including B2 is the first thing worth taking to help and it also helps with calming natural stimulation such as that which is due to adrenalin etc. See the discussion of amines below for more information.

Foods worth avoiding.

Caffeine: top of the list, but it is very much an individual thing, some people don't seem to have a problem with it and others sometimes have a problem depending on the fluctuation of their illness. Others like myself avoid it entirely because it has harmful affects. This is understandable since it stimulates the nervous system and could potentially set off a vicious cycle of overactivity and fatigue, though the situation may be more complicated than that as it may involve histamine content and/or release and the allergic immune shift which may be behind ME in some patients.

Amines: of which histamine is but one are very common in our foods. Not all amines are equal and according to advice received from Professor Jonathan Brostoff (author) and subsequently in my experience, some of them act as stimulants on the nervous system in a manner comparable with caffeine eg tyramine. This is obviously a problem if you have an overactive nervous system in the first place.

Coupled to this PWME tend to have reduced liver activity for a number of reasons and this means amines are not cleaned up as quickly as they should be (see also the MAOi subheading below). So amines can build up and some PWME tend to be sensitive to these in a way which exacerbates mental overactivity. For those affected it is well worth being careful about what types of food you eat and when.

Some foods naturally have a high amine content, the avoid list is the same as the avoid list for those taking medical MAO inhibitors (see below). Many foods tend to produce amines as they age and deteriorate under bacterial action so as a general rule fermented foods and aged foods and foods past their sell by date will have high amine contents. If it disturbs your sleep to eat strong cheese or spinach for example, now you know why. Individual sensitivities seem to be personal so its a question of recognising foods that cause you mental activity and working out how to manage them. e.g. Avoid them in a bad patch and also be aware that accumulated small doses which would not normally cause a problem on their own can add up to cause a problem.

It is worth adding that you can theoretically support the activity of the enzymes which get rid of amines (monoamine oxidases or MAO's) by taking B vitamins, in particular B2 aka riboflavin, see link and FAD. Most B vitamin supplements should offer plenty of this. I have tried using B vitamins including B2 as a therapy for food related mental stimulation and I have found it helpful, depending on the type of stimulating food involved.
MonoAmine Oxidase Inhibitors - MAOi's : as the name suggests these inhibit monoamine oxidases or MAO's. The activity of MAO's matters to PWME because they not only break down amines (as mentioned above) peripherally in the cells of the body by oxidising them, they also break down our natural stimulating hormones like adrenaline which, if they are not broken down like this, can build up and create high levels of stress and anxiety by overstimulating our nervous system and gut activity and suppressing our immune system. Obviously imbalance in any hormones is not good.

Some relatively common foods and spices contain naturally occurring MAO inhibitors (MAOi's), so one needs to be aware of these as our livers may not clear them up as quickly as normal and doses may accumulate (eg nutmeg, tumeric, onion, olive oil, black pepper which contain myristicin, kaempferol, quercetin, curcumin and piperine). A combination of high amine foods and MAOi foods can be double trouble which lasts for days, as the dual dose can lead to high levels of stimulating amines and also prevents the natural cleanup method from working properly and also allows the build up of adrenergic stimulating hormones, which can lead to serious head-buzz. Which can be very difficult to live with if you have no idea of what is happening to you. Here is a google page with lists of foods to avoid when taking artificial MAOi's, the same logic applies when you want to avoid mixing natural MAOi containing foods with high amine foods.

MAO's occur as type A and type B. Type A remove food derived amines and both type A and B remove natural hormones. Different MAO inhibitors can target different types of MAO. In my personal experience some MAO inhibitors can result in mental overactivity and IMHO may play a part in IBS. The pattern I have noticed is that too much MAOi can cause the squits and its sudden absence when you are used to its presence can cause constipation. So again its a question of balance and consistency. I was surprised to discover foods like olive oil and pepper contain MAOi's. But it makes sense now I know. I find a little pepper on my food when necessary can help move things along, for example. But when I deliberately stopped eating MAOi's I was constipated for a while until my body adjusted.

It is also worth noting that low MAO-A activity (i.e. leading to high levels of amines) has been experimentally associated with increased levels of aggression. It strikes me this might contribute to emotional lability in people who get a bit grinchy, as I know I do, as part of their ME symptoms, so its one to watch out for IMHO. Also of interest is the fact that MAO's are predominantly found in mitochondria, the organelles where aerobic respiration normally takes place. Its probably not a coincidence that they seem to show (in my personal estimation) reduced activity in my experience of ME but it is probably a secondary 'knock-on' affect rather than causal.

Nutmeg:  believe it or not contains a psychotropic mix of MAO inhibitors, which is stimulating, alters mood and in my estimation contributes to emotional lability in even small quantities. What some readers may not realise is that nutmeg is a common ingredient in premade foods containing spices such as many brands of premium and budget sausages. If you find yourself getting stroppy after a few sossys now you know why. Another one to avoid if it causes you a problem.

Nightshades: since I first wrote this I have discovered that I have a real problem with nightshade family foods, including potato, tomato, eggplant, sweet and chili peppers, goji berries, huckleberries which cause an increasingly bad reaction for me involving malaise and mouth ulcers. It took a while of keeping a food diary to cotton on the real cause. Nightshades are food plants which are relatives of the deadly nightshade and so produce small amounts of toxic solanine molecules which can end up in food products obtained from them in varying concentrations. These are usually handled by the digestive system, liver and immune system without harmful affects in healthy people but appear to be enough to cause a problem for someone with a weakness in that regard. The result of eliminating nightshades from my own diet has been a measurable reduction in cell free DNA in blood tests which correlates with the mechanism of action of solanines. Unfortunately this didn't reduce the CFS/ME itself which suggests that as with other food intolerances the difficulty in tolerating nightshades is a symptom of long term ME and not a cause. For those who have food intolerance accompanying ME, eliminating nightshades and other potentially toxic foods may be worth researching and testing.

Personal: on a personal note, I suffered for many years (1986-1996) with undiagnosed ME involving diagnosed and unusually severe recurrent virus, severe raised allergies and high levels of mental overactivity and cognitive problems including serious perceptual dysfunction which I was lucid enough to know were very wrong but which I was powerless to prevent. After diagnosis in 1996 and since understanding the above I have been better able to influence the secondary symptoms and break the cycle of mental and physical overactivity which once lead to push-crash and serious relapses.

For this reason I think it is very important that diagnosing ME, which some doctors percieve as a stigma and dead-end diagnosis, is seen as a positive step because with early diagnosis of ME and a sincere attitude there is much that can be done to assist convalescence and prevent deterioration today. Even a tentative diagnosis would have been much more helpful to me than the wall of silence I initially encountered (for ten very difficult years) despite consulting several mainstream medics, because diagnosis constituted a form of recognition which gave me licence to behave appropriately despite the conflict this created with other priorities. Prior to diagnosis I had no choice but to attempt to continue normally, to my detriment.

Recent research has done a great deal to improve the credibility of the diagnosis by showing the reality of the ilness involved and further research will hopefully provide effective empirical tests and therapies to assist doctors in making effective diagnosese and offering helpful treatments with appropriate advice.

Future advances aside, I hope that what I have written above can help a few people to live more comfortably with ME and help inform anyone who chooses to care for someone with ME.


At February 24, 2011 12:39 pm , Blogger Mummybunny said...

Brilliant piece of work, enhanced by personal viewpoint.

At February 25, 2011 6:02 pm , Blogger boolybooly said...

Thanks Tricia, very kind of you to say so :o)

At February 28, 2011 4:48 pm , Anonymous Anonymous said...

As an ME sufferer of 11 years (undiagnosed for 7) much of this makes sense to me given my experience. Well done.

At March 06, 2011 1:08 pm , Blogger boolybooly said...

Thanks Lucy, glad if it helps, its the best sense I can make of it all at the moment, only time will tell what further truths science will uncover.

For now these ideas help steer me in the right direction and it seems constructive to share them for discussion and reflection.

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