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.
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.
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.
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 FM/ME is real, so something is causing it. Dr
Cheney explains this as the nerves reacting to the harm caused by ME/FM and becoming more active. He noticed that this
(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.
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. We dont 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. Add to this 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 notion.
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 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). 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.)
Discombobulation!
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.
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.
Pacing.
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.
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 (as
linked
above) naturally have a high amine content. 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 may be worth adding that you can theoretically support the activity of the enzymes which get rid of amines (
monoamine oxidases or MAO's) by taking vitamin B2 aka riboflavin, see link and FAD. Most B vitamin supplements should offer plenty of this.
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. A combination of high amine foods and MAOi's
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 drug, 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.
Personal: on a personal note, I suffered for many years
(1986-1996) with undiagnosed ME with 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. Since understanding the above I have been better able to
influence these 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. 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. Recent research
has done a great deal to improve the credibility of the diagnosis 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.
