M.E. - NICE-ME


Experience  Definitions  Books  Sites  Problems  Medical info  M.E. in Amsterdam (mainly Dutch)


Sections:

1. Withdrawal NICE-ME Guidelines from this site
2. 2007 introduction to the NICE-ME Guidelines
3. My stance on ME in October 2009

1. Withdrawal NICE-ME Guidelines from this site

In September 2007 I read on the internet about the publication by the British National Health Service of a new set of Guidelines for the treatment of ME/CFS in Great Britain.

I decided to put part of these on line by way of my site, although I had some reservations - as a pschologist, with ME since January 1, 1979 - about their recommendations of Cognitive Behavourial Therapy.

Now I have decided to remove these files from my site, because they seem to me to be scientifically flawed and morally false and dishonest.

My personal reasons for this decision will be discussed in a little more detail in section 3, but the main moving factors are these:

  • Due to the discovery of the XMRV-virus and my recent acquisition of ADSL, I did some research in ME and its context as thet exist in 2009, and found material I had not been aware of before (only having a telephone modem and being ill for decades without help).

  • I have recently bumped into three Dutch health-professionals (one MD, one psychologist, one manager) mostly by accident (I need a new GP) who seem to me intellectually and morally totally incompetent.

  • These persons unknowingly supported my own diagnosis of long standing that a considerable number of the MDs and health-professionals I have met with in the last decades in fact have psychological issues (*)

  • I have recently discovered excellent evidence that the well-known Dutch psychiatrist, the late prof.dr. Bastiaans, involved for over two decades in the treatment of former concentration-camp prisoners with LSD and truth-serum, with support of virtually all Dutch organizations involved with the treatment of such persons (like my late father, who refused such treatment on my advice in 1971) including many members of parliament and many so called media-personalities, whom I have always considered a psychiatric charlatan (A) must also have been an obvious sadist while (B) he has been protected for decades by people from the earlier mentioned Dutch organizations who knew or should have known of (A). (**)

  • I only very recently discovered this paper (and others) on line

    A CONSIDERATION OF THE ROLE OF PROFESSOR SIMON WESSELY AND OTHER MEMBERS OF THE “WESSELY SCHOOL” IN THE PERCEPTION OF MYALGIC ENCEPHALOMYELITIS (ME) IN THE UK

    Though the version I link to is (unfortunately) elementary html, it is intellectually and morally quite convincing concerning the intellectual, moral, human and psychological standing of mr. Wessely and his co-workers (Sharpe etc.) See also:

                            CORPORATE COLLUSION?

    for evidence relating Health Care Industries and the above psychiatrist and his co-workers.

  • In fact, I regard them as sadists, and as more probably mentally disturbed than not, for I cannot explain in other plausible terms and assumptions why they would have written as they have done - in fact testifying like so many Tituses Oates in Cromwell's courts.

  • Other internet content I recently read in connection with this (see: MEActionUK) convinced me I don't want to have anything to do with what messrs. Wessely and Sharpe stand for, support, or have some interest in, such as the NICE-Guidelines.

I therefore withdraw them from my site.

2. 2007 introduction to the NICE-ME Guidelines

This is what I wrote in September 2007:


NICE-ME

In August 2007 the British National Health Service published a new set of Guidelines for the treatment of ME/CFS in Great Britain. These go by the term "NICE" - somewhat ironical/Orwellian if you haven't had any help for nearly 30 years, like me - because this abbreviates the British "National Institute for Health and Clinical Excellence".

As a report, that is both aimed at patients and doctors and (so-called) health-professionals, it takes the form of ten pdf-files, some short and simple, and some long and detailed. The first four of the following are relatively short pdf-files mostly for the public, patients and family, and the second five of the following are relatively long pdf-files mostly for medical doctors and health-professionals:

NICE Guidelines for the treatment of ME/CFS - pdf-files

   
Press-Release  
Public Info  
Quick Reference Guide  
Guideline  
   
Full Guidance  
- Appendix 1  
- Appendix 2  
- Appendix 3  
- Appendix 4  
   

It is a bit difficult to say what I think of the report, not only because it is a lot of text - somewhat repetitive, at places, to serve all who are interested - and also because I have not lived in England since the early nineteen-seventies, but especially because the report in effect furthers the interests of both patients and medical health professionals, and the latter perhaps more so than the former, in that it keeps supporting therapies that are funded in England, to the financial benefits of health professionals, but that have been found pretty useless or detrimental by ME-patients.

Psychotherapy, for example, or graded physical exercising, is very good for the psychotherapist's or the physical therapist's incomes, but of no avail whatsoever for someone with real ME/CFS, while forcing him or her to engage in useless, debilitating, and pain-producing physical trouble.

On the other hand, medically speaking, the report is a lot better, e.g. in terms of evidence-based medical reasoning and argumentation, than what was deemed acceptable and morally right hitherto, as regards British ME-patients, in the eyes of British medical doctors.

Hence, my overall judgment must be that it is medically, morally and scientifically a considerable advance, but that unfortunately also some of the useless or harmful therapies for British patients with ME have been retained, apparently so as not to make health-care professionals breadless, or suffer unduly.

last update: Sep 18, 2007       


3. My stance on ME in October 2009

I dit write in 2007, in the above section 2, that

Psychotherapy, for example, or graded physical exercising, is very good for the psychotherapist's or the physical therapist's incomes, but of no avail whatsoever for someone with real ME/CFS, while forcing him or her to engage in useless, debilitating, and pain-producing physical trouble.

On the other hand, medically speaking, the report is a lot better, e.g. in terms of evidence-based medical reasoning and argumentation, than what was deemed acceptable and morally right hitherto, as regards British ME-patients, in the eyes of British medical doctors.

It now seems to me - having had a very recent taste of the prose of Wessely and Sharpe over the last 20+ years, parts of which I consider simply sick (evidently: disturbed, insane, sadistic, demeaning, lies) - that the NICE-Guidelines are more probably than not a fraud, manufactured to ward off real scientific evidence and investigation of ME/CFS, and meant to secure the incomes, status and positions of psychiatrists, so-called health-workers, medical professionals only in the profession for the money, psychologists and psychotherapists hell-bend on giving their psychobabble to physically ill people to improve their own financial position, and other rotters involved in the businesses of health and therapy.

And it now seems to me that I have been tricked in 2007 in giving such qualified consent as I did. The reasons I was tricked were essentially these three:

  • Due to poverty and ill health due to more than three decades of no help with a debilitating and painful physical disease, in part thanks to the efforts of messrs. Wessely and Sharpe to make money from ill people by scientific fraudulence, misrepresentation and dishonesty, I only in July got ADSL, and therewith far better means to search the internet than before
  • The NICE-Guidelines, it now seems to me, tried to undermine the standing of bona fide real scientific research into ME/CFS by verbally consenting to some of the evidence that patients with ME really are ill, and thus pretending to agree with it: I did not see through the pretenses, in part because I got tired soon of the medicalese prose (that very possibly was crafted for just this sort of purpose: to sicken possible qualified critics, while taking in health bureaucrats)
  • The real aim of the NICE-Guidelines, it seems to me now, just like the real aim of the Dutch messrs. Wessely and Sharpe, who are called Van der Meer and Bleijenberg, is to keep psychiatrists and psychotherapist as the prime receivers of whatever money is provided by health-insurances or the state to help patients with ME. I did not see this, in part because I don't know enough about the English situation, and in part because I simply was too trusting, too friendly, too kind, too naive, especially when faced with professional medical hypocrites.

Indeed, if I find the health and energy, I will alter my public stance on ME, and will proceed to personal attacks on a number of Dutchmen to whom I think I owe over 30 years of discrimination, pain and poverty, for the one hypothesis that has withstood the test of time all these 32 years is that the majority of health-professionals - medical doctors, psychologists, bureaucratic co-workers of such persons, often styled as "nurses" or "secretaries" - are either incompetents (who never should have studied at all or never should have studied medicine or psychology with a view of practising these subjects on laymen) or frauds (who know that they are personally incompetent, but also know their co-professionals, many of them known to them since their student days, will cover up for them) or loonies (I have met far too many medicalese persons without any evident real intellectual capacity (***) but with a very clear hang up on power and money, and I have also been lied to far too many times by medical doctors to waive the evidence of 32 years).


This restatement of my position on the NICE-Guidelines on my site dates from October 28, 2009. Those who disagree with me may tell me so by e-mail, and will be answered if they do so politely and rationally; those who want to bully me (by going to court, for example) are invited to try: I rather die than lie, about certain things, and ME is one of them - and I have been lied to for over thirty years now, all for the benefit of disgusting psychatric shits as named in this pages.

(*) Specifically: Many knowingly lied to me, pretending knowledge and understanding they did not in fact have, and often could not possibly have; some clearly spoke and acted in contradiction with the Hippocratical oath, and must have done so knowingly.

None of them cared, for all of them knew that the position of a patient against a health-professional is like that of an unarmed individual against an army of armed professionals.  And all of them had very well-paid jobs, with very high status, and great power over others, especially their patients.

Well... all power corrupts, and medical power corrupts absolutely, or so I have learned over the past 32 years. And please note that there are good medical doctors, good GPs, yea - I am one of them, after all - there are even good psychologists, but (1) as in ordinary life, as with people with less power and status, good men and women are in a minority and (2) one sign to recognize them by (probabilistically) is that good medical doctors do not pretend knowledge where they have none: They honestly admit their ignorance, if such is the case, and especially (3) they avoid diagnoses that they cannot support by real scientific evidence and (4) avoid the whole idea of psychosomatic disorders, which is at best medieval (as is the believe in witches and succubi), and normally is based on fraudulence or scientific incompetence.

(**) The relevance of this is that my father and grandfather have been inmates of German concentrationcamps, because they were members of the Dutch communist resistance against the Germans during WW II, for which reason I know quite a lot about Dutch organizations involved with provinding help for or treatment of former concentration-camp prisoners and/or with the study Dutch history during WW II, and notably of the Sachsenhausen-comité, Auschwitz-comité and Verenigd Verzet as regards groups consisting mostly of these former prisoners, and of the RIOD, NIOD and Stichting 40-45 as regards groups consisting mostly of professional healthworkers or historians making money from this. In my experience and by my extensive knowledge, the last three organizations are mainly fraudulent.

Here I should add two things:

One. I considered Bastiaans a fraud and a charlatan since I knew of his purported "therapy", around 1971, basically because (1) at the time I already knew rather a lot about psychology and especially about methodology and philosophy of science, and all I knew from those sources implied Bastiaans's claims about his purported "therapy" were false or improbable and anyway had no independent evidence whatsoever and (2) in the summer of 1970 I was the leader of a so-called Sleep-In in Amsterdam, a project paid by the City of Amsterdam to provide very cheap sleeping accomodation for "young tourists" (mostly - as met in the Sleep-In - varieties of so-called hippies) in the course of which I had learned much about the dangers, psychoses, panics etc. induced by LSD on healthy young adults, and very probably had had much more experience with such problems than Bastiaans himself ever had or saw.

Two. By now - October 2009 - I must be about the only person living in Holland who has not received any money or help or assistance "because of what your parents / grandparents / family suffered during WW II". In contrast, thousands of "healthworkers", "therapists", "medical doctors", "historians", "psychologists" and so one have literally drained hundreds of millions of tax money (through subsidies for "studies" or payments for "help") into their bank accounts. And whereas some of this money was morally and intellectually speaking legitimately spend, most of it was used for many diverse fraudulent ends.

(***) I may say I am personally very well endowed in this respect (that also tends to go with considerable naivity, that undoes much of the theoretical benefits of being gifted intellectually), and most medical people I have met in my life were clearly less gifted than I am - as can be easily seen, by highly gifted persons, from the conversations and writings of those who are not.

However... this does emphatically not mean that such people may no be good doctors for they well may be (and if they were geniuses or considerably more brilliant than they were, I would never have met them in Holland - but then being a good anything professionally never requires brilliance or genius, whatever the profession) and it also does emphatically not mean that such a person as I am would have been a good doctor, for I very probably would not have been so, not for reasons of intellectual (in)competence, but for reasons of character: Like many - and especially: male - medical doctors I have met, I lack the personal character to be a really good medical doctor. Notably, I am too impatient, I don't tolerate fools as easily as a medical doctor should, and I just am not practical enough - but then indeed I was already clear about this when 19, when I briefly toyed with the possibility of studying medicine, but decided I was not the right kind of person for it.

Most medical doctors I have seen should not have studied medicine, and having studied it, should not practice it. But then I do agree it pays well, and provides a lot of status, and I have read Mandeville - also a medical doctor - to whom I refer the reader for further enlightenment on the motives and practices of "healers" like Wessely, Sharpe, Van der Meer and Bleijenberg.

 last update: Oct 28, 2009