ME: On having severe ME
Yesterday there was no Nederlog because I wrote rather a lot on the
about ME - where one can find what
I wrote here, if it works
There was (and still is) a considerable discussion on the
around GET and CBT for which see
and for which see also see Kim's
to get an idea of what is involved and why it is
important, for persons with ME.
For more of the same, and since I am not well, is
here "The Welsh Wizard" a.k.a. Gerwyn, a very intelligent
and learned Welshman. Here is a post of his of today on
on having severe ME: -
Link to the origin
In anyone with a mitochondrial disorder the amount of aerobic
excercise they can tolerate is limited by the degree of
mitochondrial damage. Push them beyond that limit will further
damage the mitochondria possibly irreparably. About 25% of ME
sufferers are either housebound or bedbound.
The following is from the 25% ME group and may give a small
insight of the suffering of people severely affected by ME..
It has personal resonance for me as I have been there
People with severe ME will need help with personal care. When you
are helping them, remember that all their muscles are very
painful to touch. Please be very gentle. Try to work quickly and
quietly, so they don't get tired... and be sure to keep them
Depression in M.E. is usually a result of expending too much
energy and is different from other types of depression, in that
the person is most helped by rest and not by being encouraged to
undertake more activity. This is because the depression is a
result of doing too much. If the person does even more, the
depression will increase.
Please remember that people with severe M.E. have difficulty
propelling a manual chair due to weak arm muscles. If a manual
chair is used, they would need to be pushed in it.
Imagine how you would feel if ...
... you got a bad virus: were so weak you could hardly walk; felt
as if you had lead strapped all over your body; felt ill, in pain
and sick all the time; and didn't even have the strength to get
off the bed to go to the toilet... You'd expect to be better in a
week or two, wouldn't you? So did I, but I was still the same
... you wake up every morning feeling as if you'd been run over
by a bus and had a general anaesthetic the day before.
... every muscle and joint in your body aches - your arms, your
fingers, your legs, your neck. You have frequent headaches. You
feel heavy as though extra gravity is pulling you down all the
time. You feel dizzy if you stand or sit upright for any time,
and there are no magic pills to make you feel better.
... you are cold and shivery a lot of the time - even with
central heating and hot water bottles
... you constantly feel sick and dizzy and it gets much worse
when you try to read, listen to music or radio, watch TV or have
... any movement - even moving your arm - causes extra pain, saps
you and makes you feel sick
... you're thirsty all the time, but reaching for a cup is
impossible, or causes malaise or severe pain.
... you need to go to the toilet a lot, but you're often so weak
you can't even turn over in bed
... you wake up in the night drenched with sweat, and shivering,
but are too weak to have the bedclothes or your nightwear
... you require help from other people just to cover your basic
needs, but you get exhausted from the interaction this requires -
sometimes you're so weak that they can't hear your voice. Even if
you write things down for them, they still have questions.
... even with help from other people, having a bath or shower
totally exhausts you, and sometimes you are suffering so much
pain or weakness, that you can't even be washed in bed.
... your brain can't process information going in - so noise,
movement and other stimulants make you feel sick, dizzy, and
stressed. Even on good days - TV, music, people talking/moving
can be like torture.
... you sometimes can't remember things like your name, your
family and don't recognise people.
... you have to read things over and over, because you can't
remember the beginning by the time you get to the end.
... it's a major achievement to make a short shopping list
... if someone asks you if you want blackcurrant or orange juice,
you would get confused, because you can't remember both the
... you can never find anything, because you forget what you're
looking for as soon as you move your body to look for it. Even if
you don't forget, just scrabbling about the bed for a pen can
make you so exhausted that you have to lie flat for 20 mins
... Light can cause a dreadful migraine-type headache, nausea and
acute pain in your eyes;
... Everyday sounds, like voices, can thunder through your head
causing thumping pain;
... you constantly try to explain to people what your limitations
are, so that they'll be a bit more sensitive to your needs, and
they just think you're moaning...
... you have abnormal reactions to foods, dust, chemicals etc.
which cause severe malaise and nausea.
... minor infections and viruses render you so ill that you
require 24-hour care for months
... you have to struggle with feelings of frustration, despair
and anger caused by healthy, active people saying things like
"lucky you - not having to work" or "everyone gets tired - that's
... If you push yourself at all you develop
worse problems e.g. blistered eyes and joints, acute pain,
vomiting, migraine, muscle spasms, neuralgia, convulsions,
faints, anaphylactic shock episodes, etc. At times your whole
body seems to stop working... menstrual cycle, digestive
... People who know nothing about the condition keep telling you
to try harder
... you spend each day yearning for all the things you've lost -
independence, working life, hobbies, relationships, interaction
with others. You'd love to be able to do more or go out, but it
exhausts you so much that it can take days or months to recover.
You can be stuck at home for months or years. ... Children can
have ME too, and miss going to school, seeing their friends and
Those are only some of the problems which face people with severe
ME every day of their lives.
I know because I have been there every movement was agony and i
could not lift my arma let alone stretch.
As for aerobic excercise and heart conditions if you push someone
with stable or unstable angina,ventriculat tachcardia and so on
to engage in aerobic excercise you could kill them
As you may have gleaned severe ME is horrible
indeed. I have not been as deep as Gerwyn, but that is not thanks to the
Dutch medical, political or bureaucratical institutions, and I have been
well on the way to go as deep, thanks to the Dutch medical, political or
bureaucratical institutions and to the pseudoscience of
Wessely and co. and
Bleijenberg and Van der Meer.
And some of the evidence that Herr Professor & Frau Doctor Wessely vom
Weasel zum Weisel are mentally
sane if and only if (iff) I am not - as they wholly agree, miraculously
But see here which of the two logical alternatives a true iff comprehends
1. Ten reasons why ME is a real disease by a professor
of medicine of Harvard.
2. Long essay by a professor emeritus of medical chemistry about
maltreatment of ME.
3. Explanation of what's happening around ME by an investigative
4. Report to Canadian Government on ME, by many medical experts.
5. Advice to psychiatrist by a psychiatrist who understands ME is an
6. English mathematical genius on one's responsibilities in the matter
of one's beliefs:
is wrong always, everywhere, and for anyone, to believe anything upon
7. A space- and computer-scientist takes a look at psychology.
8. Malcolm Hooper puts things together status 2010.
me! alas, pain, pain ever, forever!
No change, no pause, no hope! Yet I endure.
I ask the Earth, have not the mountains felt?
I ask yon Heaven, the all-beholding Sun,
Has it not seen? The Sea, in storm or calm,
Heaven's ever-changing Shadow, spread below,
Have its deaf waves not heard my agony?
Ah me! alas, pain, pain ever, forever!"
- (Shelley, "Prometheus Unbound")
"It was from this time that I developed my way of judging the
Chinese by dividing them into two kinds: one humane and one not. "
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