about supplements and condition
am feeling a bit better than I have the last 20 years
Three observations on the disease my ex and
A description of my disease through time
This is a Nederlog of
September 7, 2014. This is not a crisis file. It is a fairly extensive
update on my condition, on M.E., and on my illness through time, since
when I got it, 36 years ago.
You'll probably be not interested, unless you are especially interested
in me or in M.E. And there will be a crisis log later today.
about supplements and condition
The previous update on me + M.E. is from a month ago, namely August 8, 2014 and this may be well worth
reading, because I did explain a fair amount.
To start with, here is what I took the last month:
This is the directly usable
form of folate, and part of the protocol. (2 pills.)
vitamin C: 6
I think - statistics support
me - this makes sense for me. (6 pills)
kalium: 800 mg:
This is part of the
protocol. I do need at least 400 mg, given the rest. (4 pills)
mB12: 1000 mcg: This is again the B12 infusion, that is
supposed to be the best. (1 pill) OR ELSE
mB12: 5000 mcg: This is the old Solgar. I have little
money so decided to finish this too. (1 pill, every 3 or 4 days)
aB12: 3000 mcg: Note this adenosinecobalamin. This I
use about every third day. (1 pill, every 3 or 4 days)
E: 400 IE. This is because it has seemed to help me
quite a few
times the last 30 years. (1 pill)
B6: 100 mg. This
is because it has seemed to help me
quite a few
times the last 30 years. (1 pill)
pill, with many supplements, once every 3 or 4 days.
There are a few changes,
but less than it seems. Here they are:
I increased the dose, simply because it seems to help some (and I have
used a lot more and a lot less, generally finding it helps some, though
not decisively so). This probably is not very important.
Also, I note that I take
vitamins and other supplements in large doses because (1) this helps
some, at least, and (2) except from some rare medical people I have had
no help and no support the last 36 years (!)
of being ill (except from my direct family).
As I said, I am now using both infusion and Solgar, and the last is
because I still have a good supply while having little money. It does
not seem to make much difference.
vitamin E: I
took it for 2 months, and it did not seem to make much of a difference.
I have now stopped it two days ago.
VM-75: This is
basically because this contains something I seem to need. (I do not
know what, and there are far too many possible combinations to try to
find out experimentally.) But once in 3 or 4 days is sufficient, and
this also is better with the mB12 supplement program (for which I
should not take too much B1, B2 and B3).
That is: except for a minimal dole, which I am legally entitled to -
but although the Amsterdam dole knows they are paying me for over
30 years now, it still refuses to admit I am ill.
(I suppose the main reason is that I attacked the tens-of-billions-of-euros a year secret deals between
the Dutch drugs dealers and the Dutch politicians, for I do not
believe the illegal Dutch drugs trade, that is now for decades at 10 billions
of dollars a year in soft drugs alone, according to a Dutch Parliamentary Report,
would have survived without corrupt judges, without corrupt district attorneys, without corrupt policemen, without corrupt journalists, and without corrupt politicians. Then again, I have no
proof, and I also am one of the very few to protest the enormous
2. I am feeling a bit better than I have the last 20
these were the changes and the general result is that I have had
another decent month, in which I felt a bit better, and indeed
in general - and speaking apart from my eyes, that are less bad
than they were but still are troublesome - a bit better than I have
been since 1994-1996, when I really collapsed, relatively slowly
but quite definitely and also for 18 or 20 years.
First, I do not feel much better than I did in 1994,
but it definitely is a bit, and namely because (a) I do at
least as many ordinary things (shopping and writing, mostly) as I did
then, while (b) I definitely have done considerably more the last year
in cleaning up (see August 8, 2014) and also (c) I now have a
bicycle a year (two in fact, since the first was stolen) which is a
first since 1997-2000, and I am using it regularly to go out and cycle
for an hour a day, which generally succeeds. (But not every day, though
that is mostly weather related. It certainly feels a lot better to be
able to cycle again, even though it is not more than an hour.)
In fact, the main reason why I am certain that I feel a bit
better is (b) above:
I did quite a few things this last year that I really wanted to
do for eight or more years, but simply did not have the energy
Second, I have not experienced any more of the quite sudden
leaps in my health that I had in 2011 and 2012, when I repeatedly got
rather a lot better on some variant of the mB12 supplement program, but
then also quickly collapsed, most probably because of too little
One possible and plausible reason for that change is that I have been
considerably more careful with the amounts of supplements I take, and
indeed I rather improve slowly and steadily than rapidly but
3. Three observations on the disease my
ex and I have
Third, here are three related observations on the disease my ex and I
got in January 1979 -and I start with a brief introduction:
We both have "classic" M.E. in the senses that (a) no medical
person could find anything wrong with us 
(but none of them knew anything about M.E. until I told them in
1989 - and no, by now I think that the average medical person consists
of 3/5th ignorance, 1/5 science, and 1/5 acting abilities, which is
certainly true for the more rare diseases ) and
(b) we remained ill and indeed from the beginning had nothing
to gain from being ill, since we were first year students when we fell
ill, while (c) we did complain from the beginning about
Post- Exertional Malaise (PEM)  namely in the
sense that both of us had rapidly found out that "we very often had to
repay in additional pain, trouble and symptoms for doing to much" - and
the quoted statement is almost literally what we said (in Dutch) to
several tens of medical doctors. (For we did not know about the
term "PEM" till well after 2000.)
The observations I want to make are these:
First, for both my ex and myself by far the worst symptom and
sign of the disease (which manifests itself in quite a few symptoms) is
the lack of energy.
I could live fairly normally with the pain and the symptoms - if only I
had normal energy, which I have not had since 1.1.1979.
Second, I strongly tend to think now - supported by my present state of
knowledge about psychiatric and medical ignorance about many things -
that the disease is due to a lack of energy.
For this is the most persistent symptom, that may be due to quite a few
different reasons - but to me it seems that from the time I fell ill I
have never had more than 25-50% of the energy that I had when
healthy, and very often less, which means that I must operate on a
scale that is less than 1/4 - 1/2 to what I could do when
healthy (and very often and for years much less).
Also, a lack of energy at least in principle explains many of the
Third, this lack of energy is definitely physiological.
I am not mad, not insane, not confused, not scientifically ignorant,
not psychologically or psychiatrically ignorant, not medically
ignorant, and not stupid, and in fact got one of the best M.A.s in
psychology that was ever awarded, that was all done when I was ill.
But after that I do not know much more - except that I have
been helped by the mB12 protocol, that does propose a mechanism
for this physiological lack of energy, and that the Dutch doctors, each
of whom earns at least 15 times my income, for which I do pay 8
times as much as 10 and more years ago, have once again refused
to do a simple medical test, that would have given me much clarity.
4. A description of my disease through
Finally, here is a fairly brief description about my disease through
time. It is sanitized in the sense that I do not complain about
the truly awful and cruel and illegal conditions in which I was forced
to live from 1981-1983 and from 1988-1992, that is, if I did not want
to commit suicide.
1.1.1979 - 31.12.80: I fall ill, my ex falls ill 9
days later, and we learn we have Pfeiffer's
disease "that can last three months". In both our cases it started
with something like a severe flue, that improved after a few days, but
never got any better. After a year of considerable problems because we
did not live in Amsterdam, we got a studentflat in Amsterdam that is
close to the faculties where we studied (and where we had to
pass several practical courses).
In 1980 my father dies, and I get my B.A. in philosophy, that is thrown
at me by drs. Bolten, with the saying "we had to give you one
too", which is motivated by his hatred of me, and my having an A.
1.1.81 - 1.viii.83: We are both overwhelmed by terror
from a madman who lives next door, and a lazy drunk egoist who lives
above us (after a while): I get several times attacked, am threatened
repeatedly with getting murdered, garbage is turned over in front of my
door, and worst of all, I cannot sleep from 1981-1983. Absolutely no
one does anything, so my ex and I decide to stop paying the rent, which
induces the foundation that rents the room (headed by the Board of
Directors of the UvA) to start a court case against me.
My ex and I grow apart, and decide to break up by August 1983, if only
because neither can take care of the other, and we are both ill for 5
years (and at that time we also were both young and attractive: I was
33, and my ex was 28).
1984 - 1987: These are the best years from 1979-2014:
I am getting slowly better and better, mainly by taking a lot of rest
and a great lot of vitamins. 
Also, in 1985 I got a really good G.P. - Helen van
Proosdij-Fertigova, also with a fine assistant - who remained my G.P.
till 1999, and who helped me a lot.
And in 1985 I win the trial that the foundation started against me.
This I do myself, and I am told, after I have won it, that no lawyer
(It also saves me a lot of money, but it is very strange we had to wait
for nearly 4 years - "the delay of the law": Shakepeare - and
that we both do not live anymore where the events took place.)
1988 - 1992: Amsterdam's mayor Van Thijn decides that
his good friends the hard and soft drugs dealers X (I never knew their
names) must have permission to deal soft drugs from the bottom floor of
the house in which I live, rather than from the bottom floor in
his own house. Also, three cafés within 15 meters from
where I have to sleep get permission for terraces till after 01.00 in
The result is that I do not sleep from 1988-1992, or so it feels, and
indeed I can be certain of quietude only from 03.00-07.15. I do publish
10 columns in
1988, but I can't do much else. The Amsterdam police even refuses
to act after the drugsdealers get arrested with several kiloos of
heroine and cocaine in 1989.
Then in 1988 the chimney collapses, but the Amsterdam Municipal
Building Service decides I am a liar, very probably because
they collaborate with the drugsdealers (who also got protected by the
Amsterdam police, the Amsterdam mayors, the Amsterdam aldermen, and the
Amsterdam ombudsman: drugs are big business in Holland: only
in illegal soft drugs at least 10 billion
dollars a year gets turned over). I find this out by getting nearly
gassed with my neighbour: we both collapse on the floor, and survive
only because the house is a dump.
In the end I grow suicidal, because - again - nobody helps and I cannot
sleep for four years. I get a new place to live in 1992 - but this
again turns out to be too small and to be infested with drugsdealers.
1993 - 1996: In 1993 I get the place where I still
live: This is quiet and pleasant, and I have always slept well
there, and have had no nasty neighbors of any kind. But I also
remain depressed, and around 1995 am prescribed Prozac, which does get
me out of the depression (that had lasted from 1989-1995), but which I
then - stupidly - keep taking for quite a few years. Also, while I am
definitely less depressed, I do remain somewhat depressed for a long
time, though far less than before.
Also, in 1993 I get - at long last - my M.A. in psychology with two 10s
and an average of 9.3. I am not certain, but while it took 15 years
from starting the study, in 1978, it seems I have in fact not been
inscribed as a student for more than 8 years (and got a B.A. in
philosophy, worth 3 years, and an M.A. in psychology worth 6 years).
My mother has to be in a special place because of Alzheimer's, and dies
This gets me more depressed, as does also the fact that I still am
hardly better than I was in 1992.
1996 - 2012: I live reasonably well, with a computer
and with small needs, and with no one bothering me, and with good
sleep, and I get rid of all debts I have build up over the years, but I
do not get any or much healthier, in spite also of repeated
attempts with vitamins and with l-carnitine.
By the end of 2010 I know of the mB12-protocol, that exists in two
variants, and in the summer of 2011 I first get a lot better in
a few weeks by using one variant, and then collapse. In the beginning
of 2012 I try it again; again get better and I buy a new computer,
which I could not do before; but then collapse in June with keratoconjunctivitis
sicca and also with Dupuytren's
2012 - 2014: I did not sleep enough from June 2012 -
September 2013 but, quite unexpectedly, I did not
collapse, nor indeed improve (but I slept for nearly a year from 4 to 5
hours a day, because I had too much pain in my eyes for more, and this
is some 3 hours too little, nearly every day).
I start improving in September 2013, when my keratoconjunctivitis sicca starts to
get better, albeit very slowly, and I started sleeping again more or
less normally, since when my condition has been slowly improving, and I
also have been able to do a lot that I could not do before,
such as sorting over 20 boxes of papers, and buying a bicycle and
cycling an hour a day, if the weather is OK.
The only explanation I can give for my not collapsing and then
slowly recovering are the mB12-supplements I keep taking.
Also, since 1996 I have a website, since
2004 another one, with the same materials, and that website (or those
websites, but they are meant to be the same) is currently 520 MB, which
is something like 250 MB of texts, most of which are by me (and e.g.
Aristotle's Ethics takes 700 Kb as a Penguin Classic) - so yes, I wrote
more than the very great majority of Dutchmen
(and I always write easily and fast, or not at all, since I was 20).
 This is the name for a
characteristic symptom of M.E. that was in the
original CCC-criterions of 2001/2003. That was a very good
name, because it is purely descriptive. Unfortunately, the
2011 edition of the CCC, that is still quite
good and in some respects an improvement of the first edition, made the
mistake of replacing PEM by PENE = Post-Exertional Neuroimmune
Exhaustion, which I cannot really understand since it embodies a theory
(that I also doubt, but that is not my point). In any case, also
whatever the relevance of PENE, the right name for the
underlying phenomenon is PEM. The reason that is the right
name is that patients can decide for themselves whether or not
they have it. My ex and I had it, very certainly, also ten years
before knowing we had M.E. (which we could have known ten years
earlier, if only the many medics we had seen the first ten
years had read their medical literature, or at least, if they read it,
which I doubt in most cases, had remembered it).
 In my case: Until the early summer of 2012, when it
was found that I have Dupuytren's
Contracture and keratoconjunctivitis sicca,
both ill-understood autoimmune
diseases. In my ex's case, I don't know: We lost contact in the
 I am 64. I have two excellent
degrees, one in philosophy, one in psychology. My ex also finished her
studies, with a fine degree in psychology (psychophysiology, as it was
then called). We did our degrees while we were ill, but indeed it is
true we both have IQs over 140. So no: You need not agree with me, but
you do need my kind of experiences and my kind of degrees for a serious
Also, I would have been a bit more foregiving of the many bad doctors I
have met if they had been willing either to listen better or to lie
less or had known or said anything useful. But no: fundamentally, the
great majority could not be bothered. And also there were a few really
good doctors we met - which is one reason for me to be dismissive of
the majority of the non-good doctors we met.
 The main reason that lots of vitamins
(real megadoses, up to 400 mgs of several B-vitamins a day, and similar
for E and C) did help (it seems, rather conclusively, and with
decent statistical evidence) is that these do improve one's
general condition at least in providing more building materials to help
For they did help (with better and longer statistics than the
FDA uses (!)), but I also never did find out what this was due to, in
spite of fairly long series of statistics, except that (a) vitamin B6
definitely played a role and (b) it seemed that in general more
vitamins (within reason) was better than less.
(that I prefer
to call M.E.: The "/CFS" is added to facilitate search machines) which
is a disease I have since 1.1.1979: