Saturday, Feb 25, 2017

me+ME+Crisis: About ME/CFS - 1: Some updates about Oystein Fluge and Ron Davis


1. About Oystein Fluge's Research
2. About Ron Davis' Research
3. Seven links to crisis items I selected, without comments
4. Three fine items by George Carlin

This is a Nederlog of Saturday
, February 25, 2017. [0]

Summary: This is the third file in the new series About ME/CFS. Item 1 is about Oystein Fluge's research with 5 links; item 2 is about Ron Davis's research with 7 links and 4 pictures; item 3 is on the crisis and has 7 links (but no comments by me); and item 4 repeats the three Carlin items because I really like Carlin and think he was and is one of the very few to tell the truth about politics, culture and civilization: Almost everybody else bullshitted.

I know I am repeating some (in items 1, 2 and 4) but I am also adding some. In fact, the first two items clarify why I am rather certain that the basic outlines of the real cause of ME/CFS have been found.

As to the updating problem: The Danish site is OK again; the Dutch site 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. About Oystein Fluge's Research

The first item is about Oystein Fluge's research about ME/CFS. There are five linked items in it.

Fluge's research started in 2004, when he noticed that a patient he was treating with Rituximab for cancer and who also had ME/CFS was considerably improved by Rituximab both as regards the symptoms of cancer and the symptoms of ME/CFS.

This is an example of the somewhat startling coincidences that often start new science, for Fluge picked this up and could organize a trial with patients with serious ME/CFS that he then treated with Rituximab. He found that 2 out of 3 patients (and 18 patients in all) considerably improved or indeed believed they were cured. This was in 2011.

Then he asked himself what could be the reasons for this, and organized a large trial in which he paired 200 patients with serious ME/CFS with 102 healthy persons, and investigated their blood.

What he found was reported on January 3, 2017 and is 19 pages of mostly biochemistry, with many findings of many significant differences (especially in amino-acids of various kinds) between persons with ME/CFS and healthy persons.

This is the report, and I think it establishes the reasons why my ex and I (who has three medical diagnoses of ME/CFS
) are - after a mere 38 years of truly stunning continuous discrimination - really ill.

Here is the link - and please note that (i) this is very difficult to read for people who don't know biochemistry, and (ii) there also is a link to a pdf-file in the link (which I did read, albeit with considerable difficulties, but I do know some biochemistry, but not sufficient to understand all):
This is very good research, which shows that patients with ME/CFS have many very significant differences in quite a large number of amino acids, that fully explain the lack of energy and the muscle aches patients with ME/CFS suffer constantly form.

This also is the paper which convinced me that there now is solid biochemical knowledge that says that people with ME/CFS (such as my ex and myself, who have it for over 38 years now) are really ill.

Then again, I agree it is difficult reading. Here are two much simpler backgrounds from the New Scientist.

The first explains the above research in simple terms and is from February 13, 2017:
The second is from July 1, 2015 and explains some of the findings of Fluge's experiment with Rituximab and ME/CFS, and reports on the results of the findings, including a brief interview with a patient who was cured, it seems:
Finally, here are two videos that explain some backgrounds. The first of these is originally in Norwegian (which I know for I lived there for nearly three years) with Dutch subtitles, so this is probably only fit for Dutchmen, but it is good:
And the second bit is by the BBC. It shows that there is being set up a research center in Norwich that intends to replicate the Rituximab findings of Fluge:
This also shows some about how it is if you have serious ME/CFS: You are laying in bed all day, in a darkened and soundproved environment, because you have virtually no energy and you are extremely sensitive to bright lights and sounds.

2. About Ron Davis's Research

The second item is about Ron Davis's (<- Wikipedia) research. There are seven links and four pictures in this item. Ron Davis is one of the best biochemists in the world and he got together (starting in February 2017) the following team:


This is from a video. I hope you can read it, and I note that James Watson, one of those who discovered the structure of DNA, is also on the team (which is impressive).

What I wanted to know is: Why did such a famous biochemist take a deep interest in ME/CFS?

Here is the answer (in brief):

His son has serious ME/CFS - which indeed is an excellent reason for a biochemist to try to unriddle the disease.

Next, here is a link to a thread on Phoenix Rising (a site for people with ME/CFS) that I found yesterday:

I read it all through which also is the first time in seven years I did so (I was a member there for four months in 2010 but I left it after being discriminated and seeing - very helpful, very informed - very intelligent others being discriminated for being intelligent), and I was at least a bit amazed to find that most reactions were reasonable. (But they won't tell you anything about the science.)

Next, here is a video of 18 minutes with Ron Davis that I found quite interesting:

What he explains is basically this (and the blue markers are deficits):

That is, there are many deficits (too little) in the biochemical pathways that produce energy and also some surpluses (too much).

In fact, here is a larger picture with more of the biochemical pathways that produce energy in humans:

This shows indeed many deficits and quite a few surpluses. I hope this is somewhat readable (and yes: there is a whole lot wrong with people with ME/CFS).

In case it is not readable, or indeed in case you are genuinely interested in biochemistry, here is a very fine outline of the metabolic pathways in human beings - and please note it is a 40.9 MB download (but it is very good and quite helpful):

Back to Ron Davis and his team. They produced a very small and quite cheap testing model of blood (that is explained quite well in An Update on ME/CFS Research with Dr. Ronald W. Davis).

Here it is (on the left) and what it shows here (experimentally!) is in fact Post Exertional Malaise (of which my ex and I have had extremely much, and which we knew we had already in 1979, though not by that name):

If you look at the first picture above, you see Robert Naviaux MD PhD. In fact, I wrote part of a Nederlog about him on August 31, 2016, with the title

with ME/CFS Unriddled in the general title, for this is what I thought it did. In fact, I have more materials, such as an interesting discussion between Naviaux and Davis from last year, but I will not give it because chances are that there soon will be new results.

Finally... back to one of the reasons I am extremely angry with Dutch doctors and psychiatrists:

My ex and I fell ill with Epstein-Barr in January of 1979. We are still il. After having seen some 30 "medical specialists" between 1979 and 1984 who did not know anything: none mentioned M.E. - as it was then known - whereas all should have found it because my ex and I very clearly described our symptoms and these were well-known since 1955 and well-described by medical doctor Allan Ramsay in 1965.

But none of the Dutch medical specialists knew anything about it, while most told us that, because they could not find anything, they thought we were not sane i.e. psychosomatizers: They all blamed the victims.

By 1987 I had helped myself to get quite a lot better because of megavitamins (yes! [1]) and I had found several interesting things on myself by taking statistics on how I felt each day, paired with the supplements I took.

Also, because I had become a lot fresher, I started reading biochemistry and thinking about how I could explain the facts that (1) I had much less energy (2) I sweated a whole lot (which suggested to me that the anaerobic cycle - see below - might be involved) and (3) I had muscle aches I could not distinguish from the lactate aches I had (as everybody does) after running for quite a while (when healthy).

What I found was a - tentative - biochemical theory I wrote out for my excellent G.P. (Heleen van Proosdij-Fertigova) who could not refute it. Unfortunately, the - quite clear - letter I wrote for her is on a 3.5 inch disk that I cannot read anymore.

Here is what I found in my diary (in Dutch) of 1987:

Geigy levert 't volgende (interessant):

Choline ----> phosphatidezuur-esters: p. 570

| ----> uit/met ATP p. 421
|                     | |
|                     |  -------> Adenylatkinase: p. 322
|  ----------------                      |
| |                           Adenosinephosphaat: p. 400 <------
| |                                                                         |
|  ----> Phosphoglyceratkinase: - weefsel: p. 581             |
|                                         - melkzuurgisting: p. 385  |
|                                         - serum: 590-595            |
|                                                                            |
             Stofwisselingsverteringsenzymen: p. 401-415                 |
Maar er is ook een B6-correctie i.h.b. via de fundamentele             |
hydrolyse van pyrofosfaat verbindingen: p. 400 ATP-proces --  |
verbonden met pyridoxaal-fosfaat → B6 p. 469-471 <---------------
& alpha-glucophosphatylase: p. 421 <-----
This is quite similar to what Fluge found, except that it was postulated by me on the basis of biochemistry and my finding that I reacted positively to vitamin B6 (<- Wikipedia) supplements. [2]

Also, I didn't do anything else with my theory, mostly because I started collapsing in 1988, after having been gassed (literally) by the illegal drugsdealers that Mayor Van Thijn had given room plus his “personal permission" (signed, on City paper) to deal in illegal drugs from the bottom floor of the house where I lived (and not from his house), who also started to threaten me with murder (five times between 1988 and 1992), and who kept me out of sleep except between 02.00 and 07.00 at night.

All Amsterdam bureaucrats, all Amsterdam policemen, and the Amsterdam district attorney all refused to do anything for me, in spite of the facts that I (and my girlfriend) were gassed, that I was threatened with murder, that those who threatened me were illegal drugsdealers, and that I could not decently sleep from 1988-1992 (when I succeeded in moving with the help of my GP). They all defended the illegal drugsdealers.

And five hours of sleep a night was not sufficient to keep me from a major collapse I still suffer from, 26 years after it happened...

So yes: I discovered (hypothetically) rather similar things as Fluge did, and I did so in 1987. Nobody listened to me because everybody (except my GP, my family and some friends) "knew" I was a psychosomatizer, and anyway I soon collapsed because I could not decently sleep from 1988 till 1992.

Finally, for those interested in biochemistry, here is a decent reference to a Wikipedia item:
This gives a good biochemical background. And here is a brief article that lists the differences between the anaerobic glycolysis and the aerobic Krebs cycle:
This is a neat differentiation (and it shows the anaerobic cycle produces 1/3rd of the energy the aerobic cycle delivers).

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

These are 7 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 first 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.

[1] I have several times outlined why I am quite certain it were the vitamin supplements that helped me and I still think so, indeed because I discovered this in 1983 without having any belief in vitamins, and they recovered a lot of my health from 1984 till 1987, and I tried and tested this empirically quite often. I do not know the explanation (and never said I did), but it is a fact that orthomolecular doses of vitamins helped me a lot, and that I took (and take) them to help my body have the best condition to do something for me.

[2] It is quite difficult to translate because the biochemical names in Dutch (of 1987) are not all similar to the biochemical names in English. Also, my theory of 1987 was a bit more detailed in the letter I wrote to my GP than it is stated above. Then again, I do not think it was right now (and always as doubtful, i.a. because I am not a biochemist). It does show - I think - that I was thinking very rationally about the possible causes of my illness.

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