M.E. In A Nut Shell By Dr Dowsett
When I saw Dr Dowsett In September 1994 she gave me the following notes
to accompany her chat with me. I think they are fairly self-explainitory so
I typed or OCR’ed the document for someone a long while a go. I have not included
most of the Pictures because I sent it in e-mail. I would tidy the document
up but I am not sure Dr Dowsett would want it on the Internet so I will
leave it as is for now and see what happens. If you have any questions please
ask me.
History
ME is not a new disease, but has been recognisable throughout history
under different names and in a variety of different guises. E.g.
Hospital)
High school)
Epidemics of ME in hospitals and schools have been a striking new feature
in the 20th century.
WHICH VIRUSES CAN CAUSE ME?
The failure of the 1953 polio epidemic in Iceland to spread into Populations
previously affected by ME in 1948, indicated:- (a) Competition between
the polio virus and the agent of ME for the sane receptor Sites in the
bowel (b) That the agent of ME could persist in the body for 5 years.
Technical advances since 1950 such as Electron Microscopy and detection
of minute quantities of virus genetic material in muscle indicate that
ME arises as a complication following infection by one of the 68 viruses
comprising the Enterovirus Group (Polio. Coxsackie A & B viruses, Echo
viruses etc.). The routes of spread, social and geographical incidence
of all viruses in the group are similar. Small children in whom symptoms
are usually trivial or absent, are the main reservoir from which health
care staff, schools and parents become infected. Polluted food, water,
lack of sanitation and previous unfamiliarity with the viruses circulating
account for travel and holiday associated with ME.
WHY HAS M.E. BECOME SO COMMON IN THE 20TH CENTURY?
The introduction of sanitation (running water and WC’s) into the homes
of all classes in society, interrupted the natural spread of these viruses
during early childhood which had been going on since time immemorial and
which afforded life long natural immunity at the small expense of a very
occasional childhood complication (e.g. "infantile paralysis"
the former name for poliomyelitis). If this primary infection is deferred
until puberty or later, the greater susceptibility of the adult nervous
system to damage, produces epidemics marked by serious complications in
older age groups.
WHY DO SMALL CHILDREN HAVE AN IMMUNE ADVANTAGE?
The immune system is most active in early childhood. apart from large
tonsils, adenoids and other lymphatic tissues, the thymus gland (situated
in the chest) provides a comprehensive education for white blood cells
including B cells which make antibodies and the T cells which provide a
security task force against cancerous or virus infected cells. As puberty
approaches (and nature assumes you have already done your "homework"
on infection), these tissues shrink and the thymus gland disappears. However,
the adult immune system though slimmer, is still able to mount an effective
defence against virus infected cells. White blood cells (like a task force),
are directed to surround and destroy the enemy.
HOW DO VIRUSES EVADE THE IMMUNE SYSTEM?
Evolutionary changes which allow viruses and host to co-exist without
damage, are of mutual benefit and have developed in most infections which
(unlike AIDS), maintain stable associations with the human race. For example,
chicken pox which zips itself into the genetic code of spinal nerve cells
may reappear later in the limited form of "shingles" if the immune
system is depressed for any reason. Other viruses including those most
commonly associated with ME, make mistakes during multiplication and deposit
a poorly constructed variant or "mutant" virus in the cell.
Vigilant T cells detect the abnormality but fail to recognise a clear
target. The resulting battle between a normal but hyperactive immune system
and an abnormal defectively constructed virus, leads to production of natural
antiviral chemicals and to many of the most troublesome symptoms of ME,
e.g.. recurrent ‘flu like’ symptoms and sore throats with or without glandular
enlargement. Should the immune system be deflected from this struggle by
a secondary infection, immunisation, immunosuppressive drug or severe stress,
the battle will be unnecessarily prolonged and complicated by relapses.
Secondary infections which severely depress the immune system (such as
glandular fever, influenza or chicken pox) and which are easily diagnosed
in the laboratory, may be given credit for causing the illness rather than
producing a relapse. It is most important that the patient is given every
form of mental, physical, medical and social support early in the illness
to assist the normal progression of this immune struggle towards stability.
What Problems May be caused by Persistent Viral infection in a Cell?
( 1 ) MUSCLE
The activity of any mammalian cell is analogous to the function of a
petrol engine, i.e. fuel (Food and oxygen) is transformed into a serviceab1e
form of energy such as gas (ATP) by means of elector/chemical conversion
from a battery (mitochondrion). In cells colonised by a defective but persistent
virus, energy production is delayed. When this delay occurs in a muscle
fibre, an alternative energy cycle (without oxygen) is employed ( in marathon
running) to tide over the deficiency. This leads to overuse of Type II
muscle Fibers and accumulation of lactic acid. Thus, a patient with ME
who attempts minimal exercise early in the illness (before energy problems
have begun to stabilise) or who over exercises later on, suffers unpleasant
pain, cramps and involuntary twitching more appropriate to a marathon runner.
OXYGEN!
O
0 /-
-!- /- ___
! / ! !
/\ ___!
0 / \ ! Aerobic
!- _______________________! Cycle
!_ ! -> No
/ ! ! "Second Wind" Harmful
/ ____! Waste
! Products
!
_____!
Anaerobic Cycle
-> Latic Acid in
A Marathon Runner tops up with Anaerobic cycle – Latic Acid, Pain Cramp
(2) BRAIN
Recent research, using sophisticated brain scans as well as measurement
of electrical, chemical and hormonal activity, demonstrates similar energy
deficits in the brain and spinal nerve tracts of patients with ME.
SYMPTOMS AREA OF BRAIN OR SPINAL CORD AFFECTED
(a) Problems with spatial Left temporal lobe and orientation, word finding,
adjacent nerve pathways. numerical calculations, taste and smell, orientation
in time, ‘panic attacks’, fits.
(b) Failure of brain to activate Reticular activating system itself
resulting in fleeting in spinal nerve tracts. attention span and inability
to stay awake.
(c) Prolonged weakness (lasting General impairment of for days after
a stressful glucose metabolosm in nerve event) cells owing to abnormal
steroid response to stress (see E below)
(d) Involuntary movements, In various locations:- Disturbances of mood,
depletion of neuro- gastrointestinal motility, transmitters or their circulation
and other breakdown products. ‘automatic’ activities. DOPAMINE SERATONIN
(5HT) & NORADRENALINE
(e) Failure to regulate and Hypothalamus and synchronise "biological
pituitary gland. clocks" which control circadian (daily) rhythms,
steroid response to stress, sleep, mood appetite, weight and growth, temperature
and water regulation thyroid, sex and other hormones.
(f) Disturbances of sensation, Spinal cord, cerebellum, balance and
of sight and thalamus and sensory cortex hearing (not due to muscle weakness
alone).
(g) Abnormal sensitivity to pain Decreased production of natural opioids.
I recently noticed the following is not from ME In A Nutshell. I think it is
the preferred leaflet of the originator of the Suffolk ME Association support
group (Now sadly folded).
Illness Management
1 Accept that you are ill.
Due to the negative publicity associated with M.E., When it is diagnosed
people often deny that they are ill, saying "I’m not that type of
person". First of all it is important to realise that the illness
affects all sorts of people, and that in trying to fight the illness you
are lessening your chances of recovery. Accepting that you are ill with
M.E. is the first step to recovery.
2 Accept that your lifestyle will change.
None of us wants to change our lifestyle; to give up things which are
important to us, work, social life, enjoying the children or giving up
sport. The reality of M.E. is that some changes will have to be made to
lifestyle and the amount of energy used on a daily basis by the individual
with the illness. Without a planned change in lifestyle, recovery will
be delayed.
3 Begin to think about how much energy you use each day.
When we talk about the use of energy, we are talking about the effort
involved in getting out of bed; making breakfast; getting dressed; walking
to the shops etc. Some activities take more energy than others, for example
vacuum cleaning or washing and hanging clothes, ironing, cutting the grass
or making a meal. It is clear that there are some things which are more
difficult than others to stop doing or cut down on. You must try and cut
out as many unimportant things as possible.
4 Try and balance activity levels with rest.
It is very important to view your activity level as a balancing act;
too much is bad for you, too little is also bad for you. Each individual
has to find the level of activity and rest which is right for them, this
balance will change during the course of the illness. Trial and error is
involved in the process, with some set back inevitable.
5 Begin to listen to and understand messages from your body.
We are all educated to push ourselves to achieve goals throughout our
lives. This is not a useful philosophy when dealing with M.E. You can not
fight the illness and win. Struggling on is likely to result in the illness
becoming chronic. Begin to listen to the signals your body gives you. Help
it to recover by understanding its (temporary) limitations.
6 Don’t feel guilty about relaxing.
Relaxing is a difficult thing to do properly. Whenever you feel the need to
relax there are key things to keep in your mind. Lie down. Close your eyes.
Help your muscles to ease. By doing so you are helping your body to recover.
Don’t feel guilty about doing nothing. All the things you have to do can wait.
If you were confined to bed they would have to wait in any case.
7 Keep your sanity
In any illness you can expect to experience anger, doubt, frustration
and feelings of despair and depression. These feelings form part of an
expected reaction to an illness which has seriously interrupted your life.
By acknowledging the existence of these emotions, it is important to know
that these feelings are shared by many people with this and any other long
term illness, and by many carers of people who are ill. Don’t be afraid
to discuss these problems with your doctor.
8 Motivation is crucial
It is difficult to deal with all the pressures of being unwell for more
than a couple of months. With M.E. you are likely to have many disappointments
during the course of your recovery. It is very important that you realise
this fact and so, by understanding the nature of the recovery process,
you can anticipate the disappointments, and equally, months of well being.
When you are feeling good, it is important that you fight the urge to make
up for lost time. To do so is likely to lead to problems. Try to maintain
a gradual recovery process by moderating your activity expenditure. Later
on you could try gradually pushing back the boundaries and slowly increase
the level and extent of your activities.
9 Monitoring progress
Progress at best can be a slow process. It can be helpful to keep a
diary of how well you feel in any given day. By doing this you can keep
a record over a longer period of time which will accurately reflect the
progress that you make.