M.E., AKA, Chronic Fatigue Syndrome
Update 14-05-2008 in Cyan
Update 01-03-2008 updates in yellow
| For over
a decade, I've suffered from the lousy bloody illness known variously
as "M.E.", Chronic Fatigue Syndrome, or "Chronic Fatigue
Immune Disfunction Syndrome", or the oh so trite-and-stupid "Yuppie
on the BBC!
I was mentioned on the BBC, this morning! :) WOOT, GO ME!!! :p
BBC Breakfast TV, were doing an item about music therapy, to help
with stress and illness, so I emailed them, and got mentioned today
at 8:45 am on BBC Breakfast!
Bit they quoted from my email:
"I've had M.E. for 14 years,
and it got much worse about 6 years ago. I've found that music helps,
as music lowers stress. Whatever M.E. may or may not be, it does
seem to react very badly to stress"
So: TODAY, THE BBC!!
It's small, silly, childish successes
like that, that keep you going, don't ya know? ;)
I didn't tell many people I had this
illness for a long time, because you got responses like "Oh,
it's all in your head", "You're just lazy!"...while
I knew that was far from the case. It was frustrating, and it didn't
help that all the medical assistance I was offered was either anti-depressants
or psychiatric care!
I wonder how someone suffering from Multiple Sclerosis, or diabetes
would feel if some useless jackass said they were a hypochondriac,
or a doctor told them it was a psychiatric illness, hm? Well, that
used to actually happen to folk with those illnesses...because
Medical Science is sometimes not Science, it's just stupid, ignorant
and hysterical, a despicable religious extremism, like when
doctors didn't "believe" in what was proven to be Lyme
Disease, that Multiple Sclerosis was "hysterical laziness",
and many other such gross oversights. Sigh.
Most doctors are not like that, but alas, they do exist.
Proof of the abuse ME/CFS patients
have had to suffer is in how the Centres for Disease Control in
the USA misappropriated funds 10 years or so ago, as those repsonsible
thought that ME/CFS was a "mental illness of hysterical menopausal
women"...and $12.9 million dollars of Congressional funding,
got sidelined to other projects...Congress hit back, forced the
money to be refunded and properly spent...and wouldn't ya know...more
hard, physical evidence was found...charming, eh? This would not
be tolerated for any other illness, those responsible would be sacked,
lose their medical licenses etc, but not for this issue...
CNN article on that issue:
M.E./C.F.S is a real PHYSICAL illness, evidence
for this stretches back 80 years, when it was known as "Post-Polio
Syndrome" or similar names (post-polio maybe a seperate illness
entirely but the similarities are extensive). Following severe viral
illnesses, some people simply would not recover, and that's how
it came to be recognized as "M.E.": after a series of
outbreaks of 'Flu-liek illness left folk with debilitating illness
that couldn't be explained.
What's M.E./C.F.S like? Well, imagine
having the 'Flu for the rest of your life. Not a 'Fu-like
illness, but the actual 'Flu, you know, the illness that puts you
in bed for at least three days and often a week or two, and for
a month and longer you feel like a dishrag. What do you think that
would do to you?
One of the peculiarities of M.E./C.F.S. is that you
have "Good" and "Bad" days, at random, or following
an illness, exercise, or upset, you will have a "Bad Day",
and feel absolutely bloody awful. "Good Days" are liveable,
you aren't well by any means, but it's not so bad.
For me it's the difference like "I've got the 'Flu like
the first week, I'm weak, I can't walk far, I feel awful",
and Bad Days" are "Oh heck, I can barely get out of
bed, and that takes me all my time, oh shut up, go away, please,
don't talk to me, you make me feel worse!" This illness
is so bad sufferers commit suicide, not because they are "weak"
but because it is HORRIFCALLY distressing and painful.
Exercise makes you collapse, if you go over a certain
limit, which is pretty feeble for most of us, you will collapse,
your skin clammy, heart facing, and fainting. Scares you to death,
because you feel like you are literally dying.
The pain goes from annoying to monstrous, I've been
burned by red hot steel, had meningitis and kidney stones,
so I'm used to what "hurts" to compare it ;)
I'm lucky, I used to be extremely fit, strong, very
intelligent and had enough "joy de'vive" that they
should have bottled my blood and sold it as a "super strength
pick-me up" ;). I also had to deal with a lot of horrible crap,
and for that and other reasons, I embraced philosophy / spirituality
/ introspection as a way to deal with those problems and cope with
Without being that kind of person, I'd probably be dead,
by my own hand or some nasty side effect M.E./C.F.S. causes, like
heart attack or lymphoma, or just be a nothing, living-dead, doing
zilch, just breathing. This illness is extremely ruinous of mind
and body, I'd much rather have faced cancer: live or die, than this
But I go on, won't give in to this rat b*stard illness!
Least I can still do art, which is also a good therapy, because
it keeps my mind working and lets me do something worthwhile.
This is my strategy to deal with this
illness, until someone comes up with a cure, it helps me. I'm still
sick as heck but I'm not so horribly distressed that death seems
a nice idea, and that will do for now.
SILVER'S ANTI-ME./C.F.S STRATEGY,
or "HOW TO KICK A PESKY PATHOGEN UP IT'S *ENIS!"
|1) It is NOT all in
your head, no matter what morons, or psychiatrists who've renounced
science, Common Sense and Hippocrate's old Oath, say. M.E./C.F.S is
most definately NOT a mental problem. Some mental problems mimic some
parts of M.E./C.F.S,. but they sure don't show up in blood tests,
tests, nor make you collapse after a short run! Remember this:
you are being attacked by a disease. Multiple Sclerosis is not a pyshciatric
condition, neither is M.E./C.F.S., anyone who says otherwise can go
shaft themselves with a rotating corcksrew!
For example, a physicist won't get double-speak from his geiger counter,
This imprecision, caused by working with very, very variable Human
Beings, and doctors being Human too, means there can be problems.
Currently, M.E./C.F.S. is one such area, alas for us :(
2) Identify the disease if possible.
Many illnesses mimic the broad-spectrum of ME/CFS, such as Chlamydia
Pneumoniae, haemochromatosis, Lyme
Disease or other forms of Borolleosis (tick borne illness),
Mycoplasma infections, mercury
poisoning, organosphosphate poisoning, various thyroid issues
and so forth, but are identifiable and treatable. ME/CFS alas, is
Possible agents or causes of actual
ME/CFS, but which we cannnot yet test for:
is it's distantly related to Mumps and hides in the nervous system.
- A chronic form of Lyme Disease,
this is disputed but logical.
- Chronic viral infection of the
intestines, this has been recently claimed for CFS and makes sense
considering the amount of similar tests showing such findings.
It was only comparitively recently proved that most uclers are
not caused by stress and bad food, as doctors insisted for decades,
but a common intestinal bacterial infection!
- A hunch of my own is that it
IS a syndrome, triggered by the body reacting to an agent it considers
a threat to the nervous system & brain. For example, say the
findings of chronic low level viral infection are correct, but
the virus should not be harmful...what if the body's immune function
is over reacting, or mis-firing, keeping you in a state similar
to a 'Flu infection, many of who's symptoms are actually your
own body's defence mechanism to keep the virus out of the brain
3) Avoid stress. Let me say that again: AVOID STRESS!!
This is crucial. Stress means "stressors": anything which
puts your body under an undue stress. Undue stress is relative
to your current fitness level, which with M.E./C.F.S, is shot to
Stress: this means exercise, diseases, anxiety,
mental exertion, extremes of temperature...normally these things
aren't much of a worry and you need exercise & stimulation when
healthy, but this illness reacts badly to stressors, causing a sort
of "feedback loop": you will feel bad, which makes you
more stressed (emotionally) which makes you more sick (physically),
which makes you more stressed (emotionally)...Catch-22, and a b*tch
of a one at that. Again, it' is not a psyhciatric illness,
but just like having the 'Flu, if you run around doing exercise,
you will get sick and maybe even die if you go overboard (from suicide
due to distress or heart failure as has happened to some CFS victims
who over exercised)
It's hard, but you do need exercise to keep
your body going...some CFS patients though are so ill they are bed
bound. So it's important to do *what is comfortable and not over
doing it*, to keep your body working. For me that's walking my dog
a few hundred yards once a day. Exercising your MIND is also vital,
hence, my computer art keeps me going. Currently I don't have the
"brain fog", since getting testosterone therapy and for
bit before that actually, it has gone away or changed (which I think
is more accurate), instead I have an annoying semi-permanent headache
(which feels liek my brain is being sandpapered) and of course,
I'm still extremely dumb at times, lol.
I've had to shut down, and concentrate
my remaining mental abilities on my art, so I can do something useful
4) Coping with stress. Ah, this is the hard one.
Usually what you have to do is remove stressors from your life,
until they are at a point you can cope with, relative to how bad
your M.E./C.F.S is.That is very much a personal issue to work out.
I can deal with stress by a way of thinking
and converting it into tranquility...this is very hard to explain,
Basically I relax as best I can and make hand movements: drawing
in up high, pushing out softly down low..this reinforces the idea
of converting stress to tranquility. Yeah, I know it sounds nuts,
but it works. Or , I imagine myself sitting by a river at sunset,
I used to love that and it calms me down. Since getting this illness
I cannot relax properly, and I used to be enjoy meditating,
the only thing that comes close is a warm bath (which I no longer
have, sigh!), which I'd recommend at a temperature you find comfortable,
just relax in it: really does help, as many ME/CFS patients have
A good psychologist, introspection, philosophy, faith,
one or several of these may help. Although loved ones can help,
you have to come to terms with M.E./C.F.S and stress in your head.
I find music helps a lot, so always
have music on, on MP3 player or whatever. Nice relaxing, or upbeat
music that gives you "oomph"!.
*is listening to Sky playing "Westworld"
at the moment as I type! Boo-yah!! ;)
5) Good pain relief. This varies from person to
person, but I find standard r Tylex and Gabapentin works. The Tylex
works on the general minor aches and pains, and the Gabapentin cuts
down on the hideous distress, neuralgia and headaches. See, Medical
Science can be a Good Thing! (tm) hehe.
Note: Tylex seems ot work a lot better than the generic co-codamol.
A newer anti-neuralgia drug: Pregabalin, has been
introduced lately, and has had good findings by some.
6) Positive Things. It's not enough to merely endure
life. That is not living, that is being mummified: a state
of living-death. Try to find things which are uplifting, they really
raise the spirits and help keep this rat-bag illness at manageable
levels. For me: love, friendship, my art, walking my dog (who's
so cute and loveable it's ridiculous!), learning new things and
I really enjoy and take an effort to enjoy things, don't just accept
them, really take time to appreciate them. Mental stimulation and
exercise tires you out with M.E./C.F.S., something ordinary folk
can't easily understand, but it's important to keep your mind active,
it literally is like a muscle and loses function as you vegetate.
Computers are an ideal tool for folk
with M.E./C.F.S: almost no physical effort is required, and give
many possibilities. I've given in playing most computer games, they
are too stressful for me in my current state, but they are very
good ways to keep the mind active, management or strategy games
may be good for people...digital art...chatting on forums. These
and other things can give outlets, communication and goals.
|7) I take several vitamin/herbal
supplements. Please do not go overboard on such things, as some can
be poisonous and ruin your health if abused! (like Selenium, which
is a really vicious poison, hence the doses in health products are
I use: fish oil, selenium, these are all good for the
brain supposedly, and selenium is an anti-dote for mercury poisoning.
Considering how much mercury I've got in my mouth thanks to amalgam
dental fillings, and living next to one of the most polluted sites
in Europe, I think the selenium is a good idea on general grounds,
fish oil also helps in that aspect. They do seem to help me.
Edit: ginko seems to have been giving me a worse
headache so dropped that after short trial, also ginseng made me MUCH
|8) Sleep, sleep makes a big impact
on M.E./C.F.S! In fact, it's one of the thngs M.E./C.F.S particularly
affects. I find only having 6 to 7 hours sleep at night, never more
than that, helps reduce the awful fatigue on waking and reduces the
severity of my illness in general. It's hard to achieve this because
this damned illness makes sleep so bad and desperately desired anyway.
I think this strategy helps because it makes me have less "dream"
sleep, M.E./C.F.S seems to cause a lot of lucid dreaming for me, and
that causes stress.. you have my dreams and you'd see why! ;)
FYI, it usually takes me an hour or more, on
waking, to be able ot get out of bed. I feel worse, on waking, like
a damned sweaty, washed-out dishrag. So it takes me a while to get
|9) Avoid starchy foods at breakfast.
This is a general health tip and thus also helps me. Having protein
for breakfast has an effect on the metabolism, so having a boiled
egg, or a meat sandwich helps kick the body into a better routine
for the day. Just be cautious, if you have bad cholesterol etc, ask
your doctor's advice.
|10) Avoid temperature extremes,
humidity or glare. These all make me worse, especially hot humid days,
those make life almost unbearable. So if possible, air-conditioning,
or a fan will help.
|11) Avoid allergenic stuff. Lot
of folk with M.E./C.F.S have problems with allergies, even going to
the extremes of suffering Multiple Chemical Sensitivity (a sort of
"allergy from hell") as a peculiar result of M.E./C.F.S,
. Each person is different, luckily I'm not allergic to anything (*touch
wood*, except poverty and sickness, lol!), but I also stick to using
natural fibres and avoiding a lot of chemcials in cleansing products
|12) Your memory will suck. That
aspect of M.E./C.F.S annoys me: your memory is often impaired. Carry
a pen and a small notepad, use a lot of post-it-notes, NEVER
leave the kitchen when cooking, even if someone comes to the door,
you WILL forget dinner's cooking!. It's grossly offensive to me, and
many others with this illness, to find we are forgetful as geriatrics,
sigh. Oh well, don't get stressed about it!
|13) DON'T PANIC!! No matter
what happens, stay calm. Don't get hyper either.
|14) Accept your disabled. Despite
all the politically correct, stupid attitudes abroad today, you are
"disabled". If you lost a leg, you'd be "Impaired"
for somethings and "disabled" only for a few things. M.E./C.F.S
really, really screws you up physically and mentally. It varies in
severity, some folk can still do light work, but most people are barely
able to cope with life, and some poor sods are bed ridden or even
I "fight" illnesses when I get sick, but with
M.E./C.F.S, that just stresses you, which makes you sicker...so fight
calmly. It's humiliating when you've been a big, tough man
to have to admit you need help...pride in this case, is an enemy,
it just makes you sicker. Sucks, oh I know, but...that's life, unfortunately.
|15) Avoid folk with 'Flu etc, tell
them to get to hell if they've got it, brcause if you get sick, your
M.E./C.F.S will flare up worse.
|16) Get a good doctor,
if they are a bigotted jerk who doesn't "believe" in M.E./C.F.S,
ditch him or her like the menace they are to your health. A good doctor
is a major asset, but, just remember: he still may not be able to
do much for you. There is no cure for M.E./C.F.S, unless you're lucky
enough to have one of the nasty bugs that either act like it, or are
Pain relief, diagnosis to detect or exclude other problems, human
sympathy, refferal to a good psychologist to help cope with the trauma
M.E./C.F.S causes...that and some other things a good doctor can do
for you. Bad ones will bloody kill you, but that's a general point
on doctors, lol. Fortunately, most doctors are good and concerned
people, God bless 'em! :)
17) For past year I have been on
testosterone replacement therapy, whether it's the ME/CFS or something
else, my output from pituitary of hormone that triggers testosterone
production was almost nil...less testosterone than a 90 year old
man according to the specialist. No wonder I was bad, jeesh. Considering
I used to weight train before I got this bloody illness and was
most definately NOT short of testosterone! :p
It has definately helped, I don't
get the "sucking" fatigue so much, I know of no other
way to describe it, just feels like you're having centre of chest
sucked out and down to your toes: low blood pressure perhaps? feels
like only time I ever fainted, similar sensation)
When I get os bad with this, I start to collapse, maybe it's like
asthma, bronchial spasms (I get a sensation like breathing in super
cold air or petrol fumes), clammy skin, lowering of blood pressure
Anyway, the testosterone shots made life much more physically bearable,
but not stopped whatever the hell ME/CFS is.
|I hope this helps you :) I may
add more another day.
|This page started 22/06/2006.
All original art, writing on this site, copyright of
Steven James, "Silverblade the Enchanter" ©2012