21 april 2010


ME: ME video

Yesterday there was no Nederlog because I wrote rather a lot on the Phoenix Forums about ME - where one can find what I wrote here, if it works

Also I am not well, which is the reason I only write a Nederlog on alternate days, lately, though that was not so much a decision as how it works out at present, for me.

As the title says there is an ME video, made by and with contributions of some members of the Phoenix Forums about ME. The makers are known on forums as Mr. and Mrs. Teej or TeejKay. It is TeejKay - the feminine half - who has the ME/CFS, whose plight it is to be in a wheelchair... on a good day, that is, if she is not in bed.

The members of the forums like it a lot and it seems well done. The reason this may sound like faint praise by me is simply that my computer has no sound on the moment, and a prominent part of it all is a song Everybody Knows About Me - which accordingly I can hear as little as any text or sound that comes with the video, that incidentally struck me in two somewhat special ways, of which a little more below.

So if my praise is verbally less than that of others of the forum the reason is that I have experienced considerably less than half of it, missing the sound and therefore the composite whole.

First a link to the video:

Then why the video struck me in two somewhat special ways. The one is that there is a picture of a woman in it who looks much like the weighted half of two women I've loved long ago, which is a nice personal coincidence, surely without relevance, so I just mentioned it to justify the "two".

The other is interesting in a personal way too but has a possible connection to the or a  cause of ME. I'll explain, in three steps, for it is somewhat curious and interesting.

First, here is a contribution of mine to the forums in a thread called Can you trace your illness back to about 1980. I can, like quite a few of the other members of the forums, and indeed, again like many of the other members of the forums, I can very precisely recall when and where and how I fell ill, because it was rather special.

Here is first my post to the forums, of April 16:

Hi Stormyskye,

Interesting question... any particular reason for you to be interested in this 'cohort'?

 Originally Posted by Stormyskye
Can you trace your illness back to about 1980? I'd like to know how many people here can trace the start of their illness back roughly 30 years. Even if you weren't diagnosed until more recent than that.

I fell ill on 1.1.1979, between 14.00 and 15.00 hours, while cycling with my common law wife in the Dutch polders, while it was freezing very hard and had snowed a lot.

I decided to cycle home as fast as I could since I was collapsing and couldn't afford to do so while it was so very cold. I can still recall the - for me - browngrey sky, that seemed to collapse.

My wife fell ill 9 days later: EBV. We separated 6 years later, and had then been both ill then for 6 years, with all the symptoms found later in the CDC-definition, though it differed some for her and me.


Second, here is an image from the ME video - and the operative phrase is:
" I can still recall the - for me - browngrey sky, that seemed to collapse."

The architecture seems American, but the sky is the sort of sky I cycled home under, on January 1, 1979, of a type I had rarely or never seen, as above, especially in its brown-greyishness. Indeed, till today I don't know whether that sky was there at all, for I was nearly collapsing as I was cycling, for I had to be home before collapsing, since it was freezing something like -20 degrees Celsius.

Third, all of this may be quite coincidental, but there are curious sides to ME/CFS and its outbreaks, for there have been quite a few outbreaks, that is a series of people who develop ME/CFS at roughtly the same place and roughly the same time.

Indeed the above thread called Can you trace your illness back to about 1980 is quite interesting in this respect, and here is a part of a post by a woman who calls herself Oerganix on the Phoenix Forums:

MNC, I have wondered about this sort of thing, too. The "flu" that put me down happened in the summer and was not like any "flu" I ever experienced before or after. I was also exposed to organophosphate poisons and suffered anaphylactic shock a couple of times due to that exposure. I used to bicycle and jog in a park where I could sometimes smell the herbicides and pesticides. At high temperatures, these chemicals behave differently from their "safe" environmental temperature, as in during a fire or unusually hot summer days. They vaporize and become even more toxic.

Many of the symptoms we have in ME/CFS resemble nerve damage by organophosphate poisonings...all of which are derived from agent orange, the defoliant the US military used in Vietnam. Agent orange was contaminated with dioxin, a powerful carcinogen. 20 million gallons of agent orange were sprayed on Vietnam alone, and after the war Monsanto and Dow quickly found other markets for their poisons, mainly in agriculture and parks and golf courses. In the US, golf courses are a major source of ongoing water contamination by poisonous chemicals. Dioxin settles into the body's fat and never leaves. The brain is the fattiest part of the human body.

Fourth, all of the above is circumstantial evidence at best, but it is a fact that some English documents about ME/CFS have been forbidden to the public by the English government till... 2071, that is effectively, three generations from now, when I will be 121 and at long last be able to see what no one is allowed to see now about ME/CFS.

But it wouldn't amaze me if there is a connection to ME/CFS of the following kind

  • ME/CFS is related to the partial breaking of the Krebs cycle (that produces the energy in one's body) over the usage of phosphates
  • This partial breaking of the Krebs cycle over the usage of phosphates may have a genetical component (some kinds of people being sensitive to it)
  • There are and have been far more organo-phosphates around in the world's environment the last 50 years or so
  • Some organophosphates have been used by/for the military, as outlined in the above quotation.

How much this does or would explain about ME/CFS - or indeed whether it plays a role at all - is an open question....but I still very clearly recall the quite extra-ordinary browngrey sky, that seemed to collapse, when I cycled home feeling very ill on the day my ME/CFS started.

And apart from military uses, it simply may be so that some people are genetically disposed to get problems with the amount of organophosphates that now are in the earth's environment in general or at particular times or places, which may be just too much for them to handle without permanent health-damage.

And indeed it may be the case the documents about ME/CFS that have been forbidden to the public by the English government till 2071 do detail some specific English military knowledge about organo-phosphates that the English government much likes to be kept a secret e.g. because of the claims for damages that would come in if the facts were known, and the same might be the case in the US...

...which in turn might explain why both in the US and England the governmental reactions to ME/CFS have been peculiar, cramped and indeed crazy-sounding ("you must be mad if you think you're ill") since decades.

I do not know. But as speculation it has some merit, especially in view of the fact that the treatment of people with ME/CFS by governmental institutions has been consistently awful, immoral and indeed illegal in terms of the Universal Declaration for Human Rights, and it would be nice to find some explanation for this beyond the general melancholic reflection that alas many human beings are neither moral nor particularly intelligent, and precisely such manner of men are most prone to make careers in governmental and other bureaucracies.

Anyway... the above picture of the somber and threatening browngrey sky is both a good and evocative image for what one's life with ME feels like and for the thing called brainfog that plagues many people with ME, that permits little brainfunctioning and has been related to parts of the brain not receiving enough blood.

P.S. An interesting speculation is what Vietnamese doctors - who live in a country that has been bombarded with poisonous organophosphates - may know about being poisoned with organophosphates.

See also

And some of the evidence that Herr Professor & Frau Doctor Wessely vom Weasel zum Weisel are mentally sane if and only if (iff) I am not - as they wholly agree, miraculously almost!

But see here which of the two logical alternatives a true iff comprehends applies:

1. Anthony Komaroff

Ten discoveries about the biology of CFS (pdf)

3. Hillary Johnson

The Why

4. Consensus (many M.D.s) Canadian Consensus Government Report on ME (pdf)
5. Eleanor Stein

Clinical Guidelines for Psychiatrists (pdf)

6. William Clifford The Ethics of Belief
7. Paul Lutus

Is Psychology a Science?

8. Malcolm Hooper Magical Medicine (pdf)

Short descriptions:

1. Ten reasons why ME is a real disease by a professor of medicine of Harvard.
2. Long essay by a professor emeritus of medical chemistry about maltreatment of ME.
3. Explanation of what's happening around ME by an investigative journalist.
4. Report to Canadian Government on ME, by many medical experts.
5. Advice to psychiatrist by a psychiatrist who understands ME is an organic disease
6. English mathematical genius on one's responsibilities in the matter of one's beliefs:
   "it is wrong always, everywhere, and for anyone, to believe anything upon
     insufficient evidence
7. A space- and computer-scientist takes a look at psychology.
8. Malcolm Hooper puts things together status 2010.

"Ah me! alas, pain, pain ever, forever!

No change, no pause, no hope! Yet I endure.
I ask the Earth, have not the mountains felt?
I ask yon Heaven, the all-beholding Sun,
Has it not seen? The Sea, in storm or calm,
Heaven's ever-changing Shadow, spread below,
Have its deaf waves not heard my agony?
Ah me! alas, pain, pain ever, forever!
     - (Shelley, "Prometheus Unbound") 

    "It was from this time that I developed my way of judging the Chinese by dividing them into two kinds: one humane and one not. "
     - (Jung Chang)

Maarten Maartensz

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