24, 2013
me+ME:  My M.E., Stephanie Faulkner, personal
  1. About my M.E.
  2. About Stephanie Faulkner
  3. Personal

About ME/CFS


This is not another crisis item. Today is Sunday, and I have looked, which itself tends to take 2 hours, and have found very little, that I will not list.

Instead, there is a little about having M.E. and a little about the fascinations of Stephanie Faulkner.

There probably is another crisis item tomorrow, though it also seems that the theme seems to be drying up - and not because I want that, but because it took  half a year now, and most of the papers still carry little about it, because most of the papers function (effectively) as government's papers, and to bring amusement and relief to their readers, rather than real news.

1. About my M.E.

The present problem with my M.E. (aka ME) is that it is difficult to get a grip on.

This is not because it disappeared, but because I've had the disease for 34 years and until May/June 2012 without having anything else (that was serious: I did have some urinary problems, and some problems with my teeth, but neither had much or anything to do with my ME, and they also disappeared or were helped).

Then I quite suddenly got keratoconjunctivitis sicca, and also Dupuytren's Contracture, and while the latter so far has given little problems, the former immediately gave enormous problems with my eyes, that also made sleeping - which anyway always was a problem, indeed because of M.E. - into a huge problem.

It so happens that I still have both problems, but the
keratoconjunctivitis sicca, that had been steadily if slowly grown worse until November 2012, then turned, and has steadily if also quite slowly grown better since.

When I say "slowly" I mean it: In fact I've only started sleeping properly again, which in my case, and since my teens, means around 8 hours a night, since late August of this year, and until then slept from between 3 1/2 and 6 1/2 hours maximally at night.

This means that I have not slept enough for something like 15 months, constantly, indeed also not with sleeping pills, that anyway are necessary to get over the pains in arms and legs that I have because of ME.

However, since late August I slept again 8 1/4 to 8 1/2 hours on average, which is a great relief. My eyes are not at all OK, and I still feel them most of the day, but they are certainly better, or less bad, than they were, and they are, if still slowly, improving.

Besides, this experience of 15 months of considerably too little sleep have made it rather certain (few theoretical things are wholly certain) that the mB12-protocol I follow does help me.

The reason is that for 34 years sleeping problems nearly always, especially if of a longer duration (by which I mean: several days or weeks), caused increased problems with ME - but not this time.

Also, I have been able to pick myself up from considerably worse condition in the summer of 2011 and the spring of 2012, both times because of the mB12 protocol.

In order to clarify that a little: I have been very low from 2002 to 2007, most though not all of the time, in the sense that upon waking up I could often move the two or three steps to my chair before the computer from my bed, and then start the day with a steady drip-drip-drip-drip of sweat falling from my brow, and with a wet upper body because of sweating, namely from the exhaustion of doing three steps.

This has luckily since then not repeated itself, and indeed my condition has improved slowly (and waveringly) until 2011, when it got picked up quite radically with the mB12 protocol - which I soon had to finish again mostly, because it turned out I used too little potassium. [1]

Next, a small clarification about the pains I associate with ME, which are quite important for me, because I did not have any serious disease for 34 years, yet was exhausted most of the time, and without hardly doing anything.

The pains I have are predominantly in my arms and legs, and when more serious also in my hands and feet. Indeed, those in my hands have been seen by a doctor who acted for the insurance in 1992, who then travelled to patients, instead of forcing patients to come to his office, and who said these were "clearly rheumatical" and also "clearly made it impossible for me to work". But this was after more than three years of sleeping to little, because in Amsterdam the interests of the illegal drugsdealers come before those of "fascist terrorists" like me [2], according to Amsterdam's mayors, aldermen, councilmembers and bureaucrats, who protect an illegal interest of at least 25 billion of illegally turned over soft drugs each year, and indeed after I had slept again decently for half or three quarters of a year ceased to bother me.

But the pains in arms and legs are constant ever since getting the disease, as they were for my ex, who also had the disease, and are indeed what enabled us to say we still had it, also if we were able to do a little more.

Now it seems to me I can be more specific: What I have since having my disease, without doing anything, and which I never had before, except in case I was quite exhausted, and in addition to the ordinary feelings I have of having my arms and legs, consists of two additional feelings: (1) a feeling of pain and (2) a feeling of exhaustion.

Furthermore, the feeling of pain is that of lactic acid, but this can increase to that of blue swellings (without any blueness or swellings), while the feeling of exhaustion is one that manifests itsef as if one has a serious heavy weight hanging on one's muscles, rather as if one has ran the marathon, and is devoid of any energy - but it is not a feeling of "fatigue" but one of exhaustion: As if one has no energy at all, except for a few steps.

These two feelings, of pain and of exhaustion, I have had 33 of 35 years constantly, although both varied in intensity. Interestingly, in my mid-thirties, in 1984 and 1985, when I still did not know about ME at all (I learned about that only in 1989) and was experimenting seriously with large doses of vitamins,
I thought I was curing myself, and had, especially in 1985, remarkably little of either pain, and was much fitter than before or since.

In any case, as I am on the moment, it still is very difficult to say what my ME is like, and that is mainly because of the keratoconjunctivitis sicca. However, it is
better than it was for most of the years since 2000, which also explains my having bought a bicycle, that I can ride for maximally an hour now, in a calm fashion, on most days (on which I do very little other things, I should also stipulate).

As it is, I am a bit optimistic, because I have found something that does help me - but I am also suffering considerable losses in income: Since 2007, I lost at least 75 euros a month - 2 monthly incomes a year - because in Holland, as in the US, the poor people either should either die (without any protests, if you please!) or feel proud to contribute to the enormous wealth of the 92.000 families in Holland that owe 40% of the total riches.

2. About Stephanie Faulkner 

As I have written here, I know now for four weeks that the first woman I loved, and who loved me, died in 1996. And although it is a bit crazy, if only because I will never-ever hear from her again, this did upset me quite a lot more than I had expected, for indeed I had expected that she would be dead, before that was confirmed by her son, namely because I was pretty sure to have either heard from her, or at least to have found things by her on the internet, if she had lived.

But I had not expected her death would effect me as much as it did, were it only because I have lived with four other women since, and do not regret so in three cases - which means that I still wish them well, and thank them, and also believe that they are rather special persons (are, since they are all alive, to the best of my knowledge).

Then again, Stephanie was the first woman who loved me, and whom I loved, which makes her special, and also she was different from the others in being far more theoretical, more witty, and more intelligent, and indeed also in being the only one to write me such letters as she did.

For that is the other reason why she is special: I do have some 400 Kb of some 20 letters she wrote me, in 1971 and 1972, that are quite special, and quite unlike any other letters I got.

So I have for the last four weeks mostly spent the time of day I have not spend on writing crisis items (that make for quite a lot of work, less because of the writing than because of the searching) on getting her letters converted to html, and writing brief comments on them.

This was helpful, because her letters were mostly handwritten, in a none too easily decipherable handwriting, and I now have a better idea of what she wrote me than I have had for the last forty years.

I also suppose I will upload them to my site, in the next month or the one after that, although I do not think it will concern many others - for it is the prose (and prose-poetry) of a woman who died in 1996, and who is mostly forgotten except by her family, and in whom I am interested only because I did love her from 1971-1973, and had mostly pleasant but incidental relations with till 1985.

Then again, nearly everyone will be completely forgotten, indeed in a quite small time [3], and she stands out for me in at least two ways: She was a very special person, with whom I had a very special relationship, and who could understand me as no one else could.

So even if it means little to virtually everybody else, I will write out her letters in html and will upload them.

3. Personal

This serves today only to say that I found the writing of this a lot easier than the writing of a crisis item - and I did check today, but found little.
[1] As to the mB12-protocol: It still is difficult and in my case far from perfect,
but I have been going through with it nearly all of the present year, basically by
increasing potassium (600 mg a day) and decreasing mB12 (twice a week 2500 mcg) and keeping metafolin (800 mcg). This seems minimal, and also kept me

[2] I am very much neither of the one nor the other, but the 16 Amsterdam fascist terrorists who, with the help of the fascist terrorists who formed the Board of Directors of the University of Amsterdam, thought they wanted to make the
experience for this son and grandson of anti-fascists as painful as they could make it, so they screamed this at me, in 1988. And yes, I will soon - having had no word of excuse, and not a cent - make their names public.

[3] As to being forgotten: My father, although an obvious hero who also got knighted, and who died in 1980, has been forgotten by almost everyone; my mother, who died in 1996, likewise; my grandparents are probably only recalled by a few of their grandchildren; of my great-grandparents I know virtually nothing except that they existed.

About ME/CFS (that I prefer to call M.E.: The "/CFS" is added to
facilitate search machine) which is a disease that 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 GovernmentPersonal 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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