Sunday, Feb 26, 2017

me+ME+Crisis: About ME/CFS - 2: On  being early


1. On being early
2. On some backgrounds
3. Five links to crisis items I selected, without comments
4. Three fine items by George Carlin

This is a Nederlog of Sunday
, February 26, 2017. [0]

Summary: This is the fourth file in the new series About ME/CFS. It continues  yesterday's Some updates about Oystein Fluge and Ron Davis which you are strongly adviced to read because it gives my main reasons to insist that my ex and myself (the only two persons I know with ME/CFS) are really ill since over 38 years.

In these 38 years I at least (my ex and I split up in 1984) was never helped and very intentionally hurt
very much by both the University of Amsterdam and the City of Amsterdam (that owns most of the University) that never accepted my real illness and had me threatened five times with murder between 1988 and 1992 by the illegal drugsdealers the City protected even after they had been arrested with 2 kiloos of heroin and 1 kilo of cocaine in 1991.

Before that, from 1981 till 1984, my ex and I were tortured with three years of insufficient sleep in a studentflat by an insane madman who threatened to murder me; who attacked me physically; and whose alcoholic non-studying friend had parties till deep in the night directly above us four times in the week. Nobody did anything against the madman, and the Amsterdam City police told me and the madman literally (in Dutch):
"We will come only if the dead bodies are lying on the floors, for all Amsterdammers are shitheads."
(These policemen were not from Amsterdam.) This destroyed my studies and my health and broke up the relation with my ex.

These three + four years of total discrimination taught me that the illegal dealings in illegal drugs have been organized by Amsterdam mayors, lawyers and fascist terrorists because they made an enormous amount of money that way - which I think without valid proof, but which I do maintain on the basis of 4 years of completely allowed terrorism against me by illegal drugsdealers I dared to protest against.

The University of Amsterdam of illegally removed me from doing the M.A. in philosophy because I was not a Marxist (!!!) and because I had criticized the education I got, which it turned out I was not allowed to.

Again, both the City and the University were from 1948 till 2013 in the hands of the Social Democrats (the PvdA in Dutch) that very much rather organized 20 billions of euros of turnover each year in illegal drugs since 1988; and much rather denied me the right of taking an M.A. than provide good education between 1971 and 1995 (and also not since, but by then I had escaped with an excellent M.A. in psychology).

In this Nederlog I briefly reflect on the fact that I seem to be one of the first who has concluded that the biochemical facts - that chart major differences in quite a few amino acids that play an important role in the metabolic pathways that produce energy.
As to the updating problem: The Danish site is OK again; the Dutch site is - still - stuck for me on February 22. Where it stuck for others I have no idea: It may be December 31, 2015. (They do want immediate payment if you are a week behind. They have been destroying my site now for over a year.)
1. On being early

I realized that I am quite early in my diagnosing that Oystein Fluge - who has been working in ME/CFS since 2004, and who is a doctor of medicine, like most of his sixteen collaborators - is correct in saying that his group found many biochemical differences between 200 patients with ME/CFS and 102 healthy controls.

I do think this proves that I am really ill, simply because I am ill for more than 38 years now, and have received three diagnoses by medical people (the first in 1989) that I do have ME/FM (and besides, I also satisfy the Canada Criterions).

In fact, I think I am in several ways earlier than I was in 2009/2010 when the news about XMRV reached me in October of 2009, but I only got to be a member of Phoenix Rising in January 2010, that was then stopped for about a month because of computer problems, and started again in late February, until May of 2010, because I then removed myself and everything I had written for Phoenix Rising, because there were far too many totally anonymous trolls there, and far too many average people who very much disliked people who are more intellligent than they are, and who persecuted quite a few of them for being more intelligent than they are. [1]

This is a bit of a problem, but not a serious one: I just need to have some patience.

Incidentally, I did find another thread on Phoenix Rising, that started in December of last year:
The first item of this thread is quite good and recommended. Here is a picture from it
and an excerpt:

That was the picture. Here is an excerpt:
Biochemical changes
More than 200 patients have been included in our studies after thorough medical assessment according to internationally accepted («Canadian») criteria. These patients are subject to systematical and standardized follow-up in the studies, and regularly donate blood samples to a research biobank. Based on the material collected in the biobank, the research group has conducted a comprehensive and detailed mapping of the metabolism in 200 patients and 100 healthy controls. The project was supervised by the authors (Karl Johan Tronstad, Řystein Fluge and Olav Mella), and conducted in collaboration with Bevital AS and Per M. Ueland.

As a result of these metabolic analyses, we detected specific biochemical changes in the blood of ME/CFS patients. These findings have now been published in the Journal of Clinical Investigation Insight.

The analyses of blood samples from the ME/CFS patients showed that the levels of certain amino acids were reduced compared to healthy control subjects. The pattern of amino acid changes gave us important information about the symptom mechanisms, and in particular about the patients’ energy metabolism.
May explain energy deficiency
Under normal circumstances, human cells utilize carbohydrates, fats (lipids) and proteins (amino acids) as sources of energy, through catabolic processes in the mitochondria, the “powerhouses” of the cell. However, when we engage in intense physical exercise, there is a shortage of oxygen delivered to the muscle mitochondria (anaerobic exercise), at which point glucose is converted to lactic acid. Since lactate accumulates and there is lower energy yield, the body will say “stop” after a short time. The enzyme pyruvate dehydrogenase (PDH) plays an important role in the regulation of these processes, as it contributes to coordinating the utilization of carbohydrates, amino acids and lipids (fats) as energy sources. The new study suggests that the PDH enzyme is inhibited in ME/CFS patients, which may explain both energy shortage and increased lactate production in these patients.
That was the excerpt. The thread is currently 35 pages long, and I will not read it because
I am again reminded very much of 2010.

Here is a contribution by an anonymous degenerate troll that was answered by Ben Howell as follows:
this is no landmark study.
this was to be expected.
it can straight go to the rubbish bin.

could they at least reveal what pathogens and parasites the participants have been tested for (found with titres/not found)?

if we had at least this info from such rubbish-studies, we could be there already...

this is needed. and really, its just something that belongs to a scientific approach.
for data analysis anyway. big data studies.

This is exactly what OMF and Prof. Davis has been doing in his Severely Ill Big Data study.

I don't believe any pathogen has been found yet, using custom, cutting edge devices. Not just based on titres which are not always reliable.

What a lot of people seem to be missing is that so far, from multiple studies, it seems to not necessarily matter what the initiating trigger is, the resulting metabolic consequences appear to be the same for patients. The heterogeneity resulting in a homogenous end point. All of the studies so far (Naviaux, Hanson, Armstrong and this one) are all pointing in the same direction.

We have never had that before, and never with this quality level of research.

So yes, I do think it is landmark, just as Naviaux's is. They may not offer the answer, but they offer an unprecedented glimpse into the illness that we have never had before.

Forest for the trees.
It's not only about the end result. It's about recognition as well.

Large cohort. With the correct criteria. Very important. Makes an impression. Getting more of the medical establishment on board.

And says a lot about the mechanism of the illness. Many good points. Many.
Yes indeed - but I have had (once again) already enough from Phoenix Rising. Here is some more background to my opinions:

2. On some backgrounds

I did some diving into the recent past history related to XMRV and Phoenix Rising.

Here are two items that still read quite well since I published them. The first charts my differences from the stupid average and was published on January 23, 2011:

I think that is still quite fair and quite true. And this does also chart my own intellectual background when I discuss ME/CFS. I do not think there is anyone else there with my background, although I agree not everyone who writes there is stupid or uninformed.

But then, many are in my considerable experiences with Phoenix Rising in 2010. Here are the posts I wrote then for them (and which I withdrew because I do not want my name or my sites associated with a site like that):
As I said, I left Phoenix Rising on May 23, after seeing how some very intelligent persons who were NOT myself were persecuted by a large mob of persons who complained that they - brainfogged, in pain, with little real education - could not follow the expositions of the very intelligent persons and who suggested that, therefore, the intelligent persons should leave Phoenix Rising.

Well, I did and I will never return. Here is why (from 2014/2015):
The present index got compiled in 2014 and in 2015 for three reasons: 

(1) my posts are still regularly searched, though
I've removed them
Phoenix Rising on May 23, 2010; (2) I think I did say quite a few things
worth saying that others did not say; and (3) I like to document my life,
and this is a - quite small - part of my life: 4 months of mails to Phoenix Rising,
all in all over 3 MB of text + html.

The index got compiled definitively only in January 2015 for the following reasons:

(i) my health was worse from 1991 till the end of 2013, since when it
improved some (though not very much), and (ii) I had an index like the present
one - but this took nearly 730 Kbs, mostly because I have to work with
KompoZer, that has many bugs (but is the best on Linux). The present index
by contrast contains all that the 730 Kbs contained, but does so in around 60 Kb.

But now I can do it and have done it - and this is also all I will do in
this directory. Also, I will not return to the topic of M.E. nor write for any
forum (and have not done so since July 2010) until there is a good scientific
of M.E., that has been tested at least three times and has
held up
: I have far too many interests to interact with anonymous folks without
brains or without scientific education, who think they can scold anyone because he
or she is more intelligent than they are and because they are totally anonymous.

And here is why I will write more about M.E. now: There have been three independent tests that have held up:
1. Naviaux et al.'s study, reported by me in 2016
2. Fluge et al.'s study, reported by me yesterday
3. Davis et al.'s research, reported by me yesterday
Also, these are all by fine or very fine medical persons or biochemical persons (and in fact there are more than three studies, but the above ones are the best).

3. Five links to crisis items I selected, without comments

These are 5 links I collected from today's readings in 35 sites. I list them, but without any comments by me:

4. Three fine items by George Carlin

The fourth and last item today consists of (a repeat of) three very fine segments from shows by George Carlin in the 1990ies, and I especially recommend the first bit, although all are very good:

And perhaps you'll find that very much George Carlin tried to convey simply were facts and they are still facts. But these facts are not conveyed by the mainstream media. And they are not, because they counter the propaganda the mainstream media seek to instill.


[0] Incidentally, this is the second day of the February Strike of 1941, that led to the arrests of my father and grandfather and their conviction as "political terrorists" to concentration camp imprisonments by collaborating Dutch judges. If you read Dutch see how one of the degenerate sadists of the Amsterdam dole tormented me in 2008: First and second.

Also, my father was knighted briefly before he died in 1980 for designing and making the Dutch National Exhibition on Resistance and Fascism (it was a National Exhibition and I believe it was called thus, but I forgot).

[1] I am sorry but this was the fact. I will never be again a member of any site where people are anonymous, because if they are anonymous many cannot and will not inhibit the sadism they are born with, just as they cannot inhibit the stupidity and the utter ignorance that generates their decisions.

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