July 17, 2013
me+ME: What am I + good mB12 video
  "Those who sacrifice liberty for
   security deserve neither."
   -- Benjamin Franklin

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1. What am I?
Dr Ben Lynch lectures on methylfolate and MTHFR
About ME/CFS


It still is the case that sleeping remains quite difficult for me. This also makes my life rather difficult, at the moment.

Anyway - and no, sleeping did not much improve, so far. Today there is, firstly, the present file, which is indeed about me and about M.E., in that order also.

About me, there is the - somewhat strange - fact that I realized that I am, in terms of time and energy spend, a web editor, in the human form: I have a large web, with quite a few visitors everyday, that also exists at two places, while it is a fact that, at least the last ten years, I have done little else than writing for it or arranging it.

This all is not by a real choice, but through illness, yet it is pleasant to be read: I can write and am being read.

About M.E. there is an interesting video - if you are among the 40% of the population who suffer from one of two MTHFR mutations - especially if you are using the mB12-protocol, or some variant of it.

Then again, there may not be many who are interested in either subject, and there may be another Nederlog today, though I make no promises.

1. What am I?

This is a relevant question, with some easy answers.

One answer I have been giving since ca. 1990, a year after I had learned the name of my disease, which was over 10 years after first getting it, and after  having collapsed from the continuous lack of sleep living above the drugs "coffeeshop", protected by the mayor of Amsterdam, that has been flourishing ever since, for 25 years (a whole generation!), and also then living very close to 3 cafés, each with a terrace, with drunk folks screaming till 2 at night, is that I am an invalid with M.E.

This is also an adequate answer, in that I am an invalid, and very probably have - a form of - M.E., where "a form of" is put in to stress that I do not have "Chronic Fatigue Syndrome", which is an "ailment" and a name created on purpose to misdirect and to not treat people with my disease medically, that also was created after I got diagnosed with M.E./F.M. (See About ME/CFS below.)

There is more about M.E. - indirectly - in the next section, which is interesting and helpful, but in this section I am trying to convey another or a supplementary sense of what I am, beyond a mere invalid, which is something that I only realized - a bit oddly - last night: I am in fact a web editor, as a person.

Yes indeed, I am: By far the most that I have done, at least the last 10 years, was editing my web(s), that exists in two identical forms, one in Amsterdam, and one in Copenhagen.

As the work of a single man, this also is large: It is some 467 MB at the moment, mostly in the form of html, of which easily more than half is written by me [1], and the parts that haven not been written by me are either philosophical classics I comment on, or else are pdf-files by others that explain parts of my disease.

There are some images and some links to videos, but not many images, and I do not store videos on my site, or indeed anything that is not html, pdf, txt or standard imagery files (jpeg, gif, png), or zip, and possibly with a few rare exceptions.

Also, while my site is split into four main subjects none of which is particularly relevant or important in the eyes of most, namely philosophy, logic, computing and M.E. plus ME in Amsterdam, besides of all of this, it also runs a large blog called Nederlog, and it turns out to be fairly popular.

As to its popularity (which never has been an important aim):

One problem I have, is that I cannot get statistics in Holland, at least not since the real xs4all was bought by the KPN ca. 2000, and has been effectively broken down to an imitation
"xs4all", which amounts, in my experiences with it, to an utter mockery of what it had been, and indeed was, when I started there, in 1996.

So I have to guess how popular this is from two facts: (1) How popular I know my Danish site is and (2) the fact that I have now for years been receiving mails from quite a few organizations that claim that they "want to help improve your site" - but which in fact are all consultancy-firms or PR-firms who are into propaganda, and would like to dress up my site as if it were an ad, and existed for the ads (and want payment besides!).

Well, as to ads and consultants and propaganda/public relations: I never even answer, but I got a lot of them, for at least four to six years now - and they are all about "improving" my Dutch site, and never seem to even consider the Danish one.

So, as to the numbers...

At the moment, the Danish one is running around 500 discrete visitors a day, who download over 3300 pages a day, and score over 4100 hits a day. (This is good, though not exceptional, and at the moment may have some to do with my treatment of Snowden's revelations.)

And since I am not Danish, although I read the language, and also never wrote in Danish, but am Dutch and have written a large amount of Dutch for the originally Dutch site, that was originally at the real xs4all, I infer that the Dutch site is at least twice as popular, indeed also given the considerable amount of attention it has received from PR-firms.

So multiplying by 3 I get 1500 discrete visitors a day, nearly 10.000 files a day, and over 12.000 hits a day.

There is considerable leeway in those numbers, since I simply do not get any statistics from xs4all (except by paying them, which I refuse to do: I lack the money and I lack the faith, and have been sorely abused by their "help"), but they are as fair as I can make them.

It is also rather difficult to say how much of the traffic my sites generate is by fairly constant visitors. I clearly have quite a few of these, and 95% is arriving at the Danish one without getting from somewhere else, but I just do not know.

Also, as I have said quite a few times in my Nederlogs: I am not really interested in the mere numbers of visitors, but am mainly interested in the qualities of the visitors - though yes, the number of visitors does count, and it also remains rather odd that every day (24 hours) I am being read for 2 to 5 days, at both sites together.

As to the quality, I have to make an excuse:

I get almost no mail about anything I wrote the last four or five years, so either I must assume that is normal with such visitors as I do have - every day 500 in Denmark alone, none of whom ever seems to get inspired to write me anything - or I must assume my e-mail gets somehow manipulated.

Since I did get considerably more mail from 1996-2006, also without asking for it, when I had rather a lot less visitors, I infer that it is not a very strange guess - having read Snowden's revelations also - to suspect that the mails I receive get tampered with. (Why? Well... my father certainly and probably also my grandfather had dossiers with the Dutch secret service, and I am an opponent of much that is happening in Holland, though indeed I have no cures, and I also never made any radical proposals, since I was 19, at least. [2])

Of course, there is no proof and this definitely is not a proof of anything, but it does get  inserted here just in case you have been mailing me (repeatedly) and did so fairly politely, and you got no reply: you have my excuses and my firm assurance I never even saw it, in case you sent it. It simply did not arrive where I could see it.

Anyway... it's not very serious, and I can do little about it, while I also did get a few mails, but indeed I got considerably less mail from readers of my sites than I got "information" from "public relations" officials who "want to" or indeed (I quote) "love to" "cooperate" with me - which surely is somewhat odd.

Back to what I am: I  am a human web editor, at least the last ten years, and could not be anything else, for I really and sorely lacked the health to do or be anything better.

It does have its charms, though, and as I said: I am being read, though rarely replied to - and so again: In case you wrote me, at least somewhat politely, and received no answer, the reason certainly is that I did not see it, and - in case that happened - that is also not my fault.

For I normally do reply politely to all minimally polite mail I get, of which there also has been a little, that has been answered.

Finally, the reason to write this all out:

I really had not quite realized that I had been spending most of my time and energy on editing my webs, the last ten years, at least, in which I also could not do much else, and that I am somewhat (rather surprisingly) effective at being read - only at the Danish site:
4,372,680 files with 5,561,194 hits - even though I do not court popularity, and have no really popular subjects, and never advertised in any way, and nearly all visitors seem to have arrived at my sites by accident.

And it is something I have done all by myself (except for the payment of the site in Denmark), and that I feel fairly proud of: Though I am writing mostly about fairly complicated not really popular subjects, I am being read, and indeed several days each day.

Thank you all!

2. Dr Ben Lynch lectures on methylfolate and MTHFR 

Next, something I found on Phoenix Rising. This is dr. Ben Lynch lecturing on methylfolate and MTHFR, the last being a gene that 45% of the population lack all the necessary particles for so as to enable it to work really well - which may leave them with 40% to 70% of inability to process folate to methylfolate.

I found it all - 1 hr 20 min - quite interesting, though I also realize that if you do not have M.E. and/or also do not lack part of the MTHFR, and are healthy, you must be really into medicine to want see all of this.

But it is a good lecture, indeed by a doctor who also lacks part of the capacity to process folate, which certainly makes him more interesting, because he is in it too (and he seems a lot more well than I am).

Then again, I can't get his url working from my site, so I give a reference to Phoenix Rising:
This works.
[1] I guess that at least 250 MB on my sites is written by me. This is to some extent html-formatting, but even if that applies to half of it, 125 MB is a lot of text, as an average sized book in Penguin Classics takes around 750 Kb. Thus, Aristotle's "Ethics" is, even in my html, nearly 700 Kb. Also, in case you wonder: No, I am not normal, and never was, and always - since my 16th - was a good and very fast writer on machines. Also, you have in nearly any case on my site my first version. Finally, I would not have written - at least - most of my site if I had been healthy. The reason is that had I been healthy I would almost certainly have been an academic, and would have been otherwise occupied.

[2] The reasons I have no radical proposals are mainly three: Firstly, I am not a political animal, though I am a social one, and secondly, I do not have any trust that whatever I say will be understood in the ways I want it understood. And thirdly, I much dislike violence (and never even threw a stone or anything else at the police - which is something very few with my age and kind of background can also honestly say).

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)

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