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Nederlog

March 27, 2018

On ME/CFS in 2018 - 1: After 40 YEARS (!!!) my ex and I are REALLY ill, in Holland


Sections
Introduction

1. Summary
2. On ME/CFS in 2018 - 1

Introduction:

This is a Nederlog of Tuesday, March 27, 2018 [1].

1. Summary

This is not a crisis log. As the title says, it is about ME/CFS.

My ex and I have ME/CFS since almost 40 years: We both got it in January 1979, and we both still have it.

This also meant that we were both declared ¨psychosomatizers¨ by 9 out of 10 of Dutch medical doctors (mostly ¨specialists¨) for nearly forty years.

It is a miracle neither of has died meanwhile.

And on 19 March of this year I heard, in fact for the first time on the radio news that my ex and I have a real, serious, chronic disease.

We are not at all amazed, since we tried to tell Dutch doctors this was the case ever since we first saw a Dutch doctor, in January of 1979 (!!!).

And the news is - this time - pretty strong, for it was by the Dutch National Health Council, that worked more than two years on it; read a considerable amount of the medical literature; and concluded - after almost 40 years of telling us that my ex and I are crazy, my ex and I are insane, my ex and I cannot think, etc. etc. etc. - that we have a real, serious, chronic disease, that almost no Dutch doctor wished to treat or take serious the last 40 years, for they believed almost all - ¨a mere 40 years¨ that we were insane and not worth bothering about.

I have slept far too little the last months (because I have ME/CFS since nearly 40 years, which 9 out 10 Dutch medical doctors simply denied we had: They know everything, so we must be insane because they cannot find anything).

The present note -
On ME/CFS i m 2018 - 1 - is brief but gives some materials and references. The main one is in Dutch, for this is the Advice from the National Health Council, that also takes 53 pages.

I will soon return to this topic, for I think it changed my position somewhat. And since I am sleeping too little, there will be no crisis log for today, though there will be one (very probably) tomorrow.


Section 2. On ME/CFS in 2018 - 1

I heard it first on the radio news on March 19,2018:

The
National (Dutch) Council of Health has issued a report that ME/CFS is a serious chronic disease that doctors ought to take seriously.

My ex and I (both of whom are psychologists only because we are considerably more intelligent than the average Dutch student, for we were ill all the time that we studied, which made it impossible to follow any lectures) have ME/CFS since January of 1979.

It started with us also in the classical way: With Pfeiffer´s Disease, that ¨never went away´.

Except that it should have, according to a just starting doctor in Diemen, and if it had not disappeared in two months we simply were insane (¨psychosomatizers¨), as first year students, both studying on study loans.

He called our complant ¨psychosomatic¨, although that is not even a proper medical term (for there is no soul or psyche in real medicine) but that did not stop 9 out of 10 and 27 out of 30 Dutch medical doctors to repeat his judgement.

I can reason, and I am also a philosopher of science:

My conclusion is that for everyone who lives in Holland and gets afflicted by a rare disease is forced to turn to ¨medical doctors¨ 9 out of 10 are wildly and sickly incompetent.

I think I can say far more about the large majority of the wildly incompetent Dutch doctors, but will not say so here.

First here is
Note this is in Dutch and consists of 53 pages of text. The above report is in pdf.

Next, here is an English ¨translation¨ that I did not read at all (in case you want to know what the Dutch were saying):
This works (after some waiting). It is addressed to the Chairman of the House of Representatives of the States General, and the text starts as follows - which is indeed what I also heard on the radio on March 19:
ME / CFS is a serious chronic disease, which
the functioning and quality of life of
people who suffer from it are substantially limited.
Patients with ME / CFS have been fighting for years
recognition and better treatment of their
condition.
My ex and I fought for four decades, but undoubtedly were both insane AND not worth caring for at all for 9 out of 10 (or precisely: 27 out of 30) of Dutch ¨medical doctors¨. I grant we lately gave up on all medical doctors, at least for ME/CFS.

As an aside: I checked meanwhile and the above ¨translation¨ is pretty horrible. (But then it is Google.)

Third, in case you want to know more about the Dutch National Health Council, this is from Wikipedia:
Fourth, here is one more bit from the Health Council (that seems quite bureaucratic with especially non-Dutch texts):
People with ME/CFS are substantially limited in their functioning, for a longer period of time. Treatment cannot address the causes of the disease, due to lack of knowledge. Therefore, research is required, on pathogenesis, diagnosis and treatment. Furthermore, patients do not feel to be taken seriously, which
hampers their recovery. Their limitations are often not fully recognized in the assessment of claims on income and other provisions. The Health Council recommends that health care providers be trained and medical assessors recognize that ME/CFS is accompanied by substantial limitations.
I am sorry, but M.E. was very well described in .... 1965, by an English doctor. My ex and I have been trying to be taken serious by 30 Dutch medical doctors, of whom 27 reacted as if we were crazy and should never have bothered them.

I am not going to accept their utterly sick and often quite sadistic health terrorism as if nothing happened. (But more later.)

Finally, here is the last bit I am giving today:
This is also more or less adequate and correct (but note that none of the incompetent practising Dutch ¨medical doctors¨ are as much as mentioned: everything is supposed to come - after ¨a mere 40 years¨ of stinking discrimination - from new to be educated doctors: O Lord!).

Note

[1] I have now been saying since the end of 2015 that xs4all.nl is systematically ruining my site by NOT updating it within a few seconds, as it did between 1996 and 2015, but by updating it between two to seven days later, that is, if I am lucky.

They have claimed that my site was wrongly named in html: A lie. They have claimed that my operating system was out of date: A lie.


And they just don't care for my site, my interests, my values or my ideas. They have behaved now for 2 years as if they are the eagerly willing instruments of the US's secret services, which I will from now on suppose they are (for truth is dead in Holland).


The only two reasons I remain with xs4all is that my site has been there since 1996, and I have no reasons whatsoever to suppose that any other Dutch provider is any better (!!).


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