Sep 7, 2014
me+ME: Update about supplements and condition

1. Update about supplements and condition
2. I am feeling a bit better than I have the last 20 years
3. Three observations on the disease my ex and I have
4. A description of my disease through time

About ME/CFS


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.
1. Update 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:

metafolin: 1600 mcg:
This is the directly usable form of folate, and part of the protocol. (2 pills.)
vitamin C: 6 grams:
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)
vitamin mB12: 1000 mcg: This is again the B12 infusion, that is supposed to be the best. (1 pill) OR ELSE
vitamin 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)
vitamin aB12: 3000 mcg: Note this adenosinecobalamin. This I
use about every third day. (1 pill, every 3 or 4 days)

vitamin E: 400 IE. This is because it has seemed to help me quite a few times the last 30 years. (1 pill)
vitamin B6: 100 mg.
This is because it has seemed to help me quite a few times the last 30 years. (1 pill)
VM-75: 1 pill, with many supplements, once every 3 or 4 days.

There are a few changes, but less than it seems. Here they are:
vitamin C: 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.

vitamin mB12: 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).
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).

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 Dutch drugs-corruption).

2. I am feeling a bit better than I have the last 20 years

Anyway... 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 for.

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 potassium.

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 uncontrollably.

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 [2] (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 [3]) 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) [1] 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 symptoms.

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 time

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. [4]
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 expected this.
(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 caf├ęs within 15 meters from where I have to sleep get permission for terraces till after 01.00 in the night.

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 in 1996.
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 Contracture.

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).


[1] 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).

[2] 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 1990ies.

[3] 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 discussion.

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.

[4] 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 improve it.

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.

About ME/CFS (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:
1. Anthony Komaroff

Ten discoveries about the biology of CFS(pdf)

3. Hillary Johnson

The Why  (currently not available)

4. Consensus (many M.D.s) Canadian Consensus Government Report on ME (pdf - version 2003)
5. Consensus (many M.D.s) Canadian Consensus Government Report on ME (pdf - version 2011)
6. Eleanor Stein

Clinical Guidelines for Psychiatrists (pdf)

7. William Clifford The Ethics of Belief
8. Malcolm Hooper Magical Medicine (pdf)
Maarten Maartensz
Resources about ME/CFS
(more resources, by many)

       home - index - summaries - mail