How to manipulate members of parliament; a recipe

  1. Do not give too much information: instead of an elaborated document you present a “factsheet”;
  2. Make sure you start talking about the less important and safe subjects;
  3. Create the impression of an open atmosphere;
  4. Keep talking;
  5. Tell them you’re very pleased with your achievements;
  6. Make sure that there will be not enough time left to discuss the subject you do not want to talk about;
  7. Do not mention the real name of the subject, call it an issue;
  8. When you get a difficult question: start talking a lot again;
  9. Beat around the bush;
  10. Never give a real answer;
  11. Discredit non-convenient opinions, persons or institutions by talking of less scrutiny, suggest that influence can be bought and chuckle;
  12. Explain there is not enough quality on that side;
  13. Exaggerate the amount of developments that will make it necessary to do a new review;
  14. Emphasize the need of scientific proof;
  15. Make sure you emphasize the state of the art at this moment. That will garantee there will be no changes, since you have degraded (see nr. 11) new developments;
  16. Especially do not mention what selections you will make and which criteria you will apply;
  17. Narrow it down to research in your own country that is not threatening because your committee has influence on that;
  18. Be obscure about the process you have followed in appointing the committee of experts, but present that as if you were very open;
  19. Tell them you have invited  opponents to have a talk (which cannot be verified because you do not mention who you talked to);
  20. Tell them that it will be impossible to keep everybody satisfied, even if you did so many efforts to realise that situation.
  21. End with a brilliant remark: one plus one is two!

 

 

Advertenties

Director IOM: Official statements president Dutch Health Council incorrect

Van: Behney, Clyde <CBehney@nas.edu>
Verzonden: zondag 19 juni 2016 22:40
Aan: Lou Corsius
CC: Frakes, Chelsea
Onderwerp: RE: Questions about scrutiny IOM, claims posed by president of Health Council of the Netherlands

Dear Mr. Corsius,

Thank you for bringing this matter to our attention.  The National Academies of Sciences, Engineering, and Medicine (the Academies) stand behind the Institute of Medicine (IOM) report, which was prepared by experts in the subject matter and was subjected to our rigorous peer review process before it was released, as we do for each of our studies.

I can assure you that the only way one can become a member of the National Academy of Medicine (NAM, formerly IOM) is by being elected by the members of the National Academy of Medicine based on distinguished professional achievement in a field related to medicine and health. One must first be nominated by two members of the NAM who are required to document how a nominee meets the criteria for membership and then be subsequently elected by the full membership of the NAM.

One cannot buy a membership in the NAM, nor can one buy a role as a member of one of the committees that conduct studies and produce our reports. Additionally, all members, including the chairs, of our study committees undergo a very strict review for conflicts of interest prior to their appointment, and we also notify the public about the proposed members for each of our committees twenty days before the first committee meeting so that the public can identify any potential conflicts of interest before the committee begins its work.

Thank you again for making us aware of the statements.

Very best regards,

Clyde

Clyde J. Behney
Executive Director
Health and Medicine Division
National Academies of Sciences,
Engineering, and Medicine

 

________________________________________
From: Lou Corsius [loucorsius@live.nl]
Sent: Sunday, June 19, 2016 4:46 PM
To: Behney, Clyde
Cc: Frakes, Chelsea
Subject: Re: Questions about scrutiny IOM, claims posed by president of Health Council of the Netherlands

Dear Sir,

thank you very much for your detailed answer. Would it be ok with you if I present our parliament with your answer?

Thank you very much again.

Lou Corsius

 

________________________________________

Van: Behney, Clyde <CBehney@nas.edu>
Verzonden: zondag 19 juni 2016 22:47
Aan: Lou Corsius
CC: Frakes, Chelsea
Onderwerp: RE: Questions about scrutiny IOM, claims posed by president of Health Council of the Netherlands

That would be fine. We did not intent that to be confidential. It is all information we gladly make public.

Clyde

 

Letter to leaders Nasem-HMD (former IOM)

Van: Lou Corsius
Verzonden: zaterdag 18 juni 2016 16:32
Aan: cbehney@nas.edu; cfrakes@nas.edu
Onderwerp: Questions about scrutiny IOM, claims posed by president of Health Council of the Netherlands

Dear madam, dear sir, the president of the Health Council of the Netherlands told members of the dutch parliament last Wednesday that the IOM report on ME is of insufficient quality. “We need to add quality” Since the presentation of this report, thousand new studies have been published en we need to select the relevant ones. He mentions the fact(?) that membership of IOM can be bought and that there is less scrutiny towards conflict of interest. He states that IOM has another businessmodel.

Can you please inform me whether professor Van Gool is right when he mentions the fact that membership can be bought and there is less scrutiny towards conflicts of interest? Can you tell me how it works?

To give you more information on the situation last Wednesday, I send you below a short article I wrote about it.

Yours sincerely

Lou Corsius, Msc Health Sciences

Father of a 25 year old daughter with ME for 15 years

 

No Fair Play Health Council of the Netherlands regarding ME?

The president prof.dr. Van Gool of the Health Council of the Netherlands and the vicepresident prof. dr. Severens informed  Members of Parliament on june 15, 2016 about the installation of the advisory committee on ME.

Van Gool calls ME an “issue” and he does not use the word disease. Doing so, he gives us an impression of the outcome of this committee even before the actual start.

The president of the Health Council of the Netherlands claims that the IOM report on ME is of insufficient quality. “We need to add quality” Since the presentation of this report, thousand new studies have been published en we need to select the relevant ones. (we don’t know which criteria the Council wil use) He mentions the fact(?) that membership of IOM can be bought and that there is less scrutiny towards conflict of interest. He states that IOM has another businessmodel (in Dutch: verdienmodel) (Van Gool and Severens chuckle).

The way they put this, one would get the impression that we cannot trust the advices and reports produced by the IOM.

On the website of the Health Council of The Netherlands however, we can find the statement: “The Council  furthermore maintains close ties with the American Institute Of Medicine.”  https://www.gezondheidsraad.nl/en/about-us/cooperation

Combining these two facts, I get utterly confused. Why does the Health Council maintain close ties with the IOM then? What is the reason they mention these close ties with emphasis when we cannot take IOM reports seriously?

Is it true that they maintain close ties? Or is this some kind of windowdressing?
From another angle: what is the reason the presidium of the Health Council feels the need to discredit the IOM? Was the IOM report on Myalgic Encephalomyelitis perhaps incovenient to them?
detail: Severens, the vicepresident,  is co-author of a reseach on cost-effectiviness of chronic fatigue treatment using CBT and GET. He did this together with Bleijenberg et.al.

 

All in all I get the impression that te Health Council of the Netherlands is not familiar with the expression “Fair Play”.

 

 

https://www.youtube.com/watch?v=P7mVjlO7onc&feature=em-upload_owner#action=share

No Fair Play Health Council of the Netherlands regarding ME?

(scroll down for English version)

Geen Fair Play van de Gezondheidsraad aangaande ME?

Voorzitter prof. dr. Van Gool en vicevoorzitter prof.dr. Severens van de Gezondheidsraad in gesprek met de Tweede Kamer commissie VWS op 15-6-2016.

Onderwerp is de toelichting op de samenstelling en de voorbereiding van de commissie ME, die en passant door de GR is omgedoopt tot commissie MECVS. Van het uur dat voor het overleg was gereserveerd, is ongeveer 12 minuten over deze commissie gesproken.

Van Gool spreekt nadrukkelijk over “deze problematiek” en niet over een ziekte. Daarmee geeft hij een voorschot op de uitkomst van de commissie.

Er is iets wat ik niet kan rijmen als ik luister naar de uitspraak van de voorzitter van de Gezondheidsraad. Hij geeft aan dat het rapport van het IOM over ME van onvoldoende kwaliteit is. Sinds het verschijnen van het rapport zijn er volgens hem duizend nieuwe onderzoeken verschenen over deze problematiek. Er zal een relevante selectie moeten worden gemaakt (welke criteria hanteert de raad daarbij?) Hij zegt dat het IOM minder zorgvuldig omgaat met belangen(conflicten) van leden. Hij geeft aan dat men er een zetel kan kopen. Hij maakt een opmerking dat het IOM een ander verdienmodel hanteert dan “wij doen”. Zowel hij als professor Severens, de vicevoorzitter, grinniken hierover.

Deze opmerking roept bij mij de indruk op dat we de rapporten en adviezen van het IOM niet serieus kunnen nemen.
Op de site van de Gezondheidsraad staat over samenwerking: “De Gezondheidsraad onderhoudt nauwe contacten met het Amerikaanse Institute Of Medicine.” https://www.gezondheidsraad.nl/nl/node/3971/samenwerking

Dan gaat er bij mij toch iets knarsen. Waarom onderhoudt de Gezondheidsraad gezien het voorgaande nauwe contacten met het IOM? Wat is de reden dat dit zo nadrukkelijk wordt vermeld op de website als er minder waarde aan de rapporten en adviezen moet worden gehecht?
Is het wel waar wat er op de website staat? Worden er nauwe contacten met het IOM onderhouden? Of is dit windowdressing?

Nog anders bezien: wat is de reden dat het IOM ten overstaan van de kamerleden door de voorzitter van de Gezondheidsraad in diskrediet wordt gebracht? Kwam het rapport over ME misschien niet zo gelegen?

Detail: Severens is mede-auteur (in zijn Nijmeegse tijd) van een onderzoek naar de kosteneffectiviteit van de behandeling van CVS door middel van cognitieve gedragstherapie en graded excercise therapy waar ook Bleijenberg bij betrokken was.

Het maakt op mij de indruk dat het presidium van de Gezondheidsraad niet bekend is met het begrip fair play.

https://www.youtube.com/watch?v=P7mVjlO7onc&feature=em-upload_owner#action=share

 

 

No Fair Play Health Council of the Netherlands regarding ME?

The president prof.dr. Van Gool of the Health Council of the Netherlands and the vicepresident prof. dr. Severens informed  Members of Parliament on june 15, 2016 about the installation of the advisory committee on ME.

Van Gool calls ME an “issue” and he does not use the word disease. Doing so, he gives us an impression of the outcome of this committee even before the actual start.

The president of the Health Council of the Netherlands claims that the IOM report on ME is of insufficient quality. “We need to add quality” Since the presentation of this report, thousand new studies have been published en we need to select the relevant ones. (we don’t know which criteria the Council wil use) He mentions the fact(?) that membership of IOM can be bought and that there is less scrutiny towards conflict of interest. He states that IOM has another businessmodel (in Dutch: verdienmodel) (Van Gool and Severens chuckle).

The way they put this, one would get the impression that we cannot trust the advices and reports produced by the IOM.

On the website of the Health Council of The Netherlands however, we can find the statement: “The Council  furthermore maintains close ties with the American Institute Of Medicine.”  https://www.gezondheidsraad.nl/en/about-us/cooperation

Combining these two facts, I get utterly confused. Why does the Health Council maintain close ties with the IOM then? What is the reason they mention these close ties with emphasis when we cannot take IOM reports seriously?

Is it true that they maintain close ties? Or is this some kind of windowdressing?
From another angle: what is the reason the presidium of the Health Council feels the need to discredit the IOM? Was the IOM report on Myalgic Encephalomyelitis perhaps incovenient to them?
detail: Severens, the vicepresident,  is co-author of a reseach on cost-effectiviness of chronic fatigue treatment using CBT and GET. He did this together with Bleijenberg et.al.

 

All in all I get the impression that te Health Council of the Netherlands is not familiar with the expression “Fair Play”.

 

 

https://www.youtube.com/watch?v=P7mVjlO7onc&feature=em-upload_owner#action=share

ME in Nederland

De Nederlandse medische wereld komt maar niet los van de idee dat ME (myalgische encefalomyelitis), een ziekte die zich kenmerkt door snel optredende en extreme uitputting in combinatie met een complex van andere symptomen, een psychosomatische of biopsychosociale aandoening zou zijn. Men spreekt van somatisatie. Een dergelijke benadering is het ergste wat iemand met ME kan overkomen. Het is een volkomen ontkenning van de werkelijke situatie en gekmakend.

Het lijkt erop dat problematiek tot psychisch wordt verklaard op het moment dat men geen fysieke oorzaak kan vinden. In het buitenland zijn sterke aanwijzingen gevonden dat er bij ME sprake is van een fysieke ziekte en toch blijft in Nederland het beeld van psychosomatische klachten en somatisatie de boventoon voeren.

Hoelang is het geleden dat autisme werd verklaard op basis van het feit dat de moeder een koelkastmoeder zou zijn die geen binding tot stand bracht met haar kind? Hoelang is het geleden dat een maagzweer het gevolg was van stress en niet, zoals naderhand bleek, het gevolg van een bacterie?

Het feit dat in Nederland vooral psychologen onderzoek naar ME en CVS hebben gedaan, vormt een bias, een vertekenende factor. Er wordt bij voorbaat gedacht aan de psychische beïnvloedbaarheid van de klachten. Vervolgens wordt er een wetenschappelijk onderzoek uitgevoerd waarbij de groep die geselecteerd wordt niet meer representatief is voor de gehele populatie. In het belang van eenduidige conclusies moeten verstorende factoren (confounders) worden uitgesloten. Dat betekent per definitie dat mensen met bijkomende klachten vaak worden uitgesloten. En dat is nu juist de groep bij wie er sprake is van ME. Die aandoening wordt gekenmerkt door een complex van gelijktijdig optredende klachten. De groep die wel in het onderzoek wordt betrokken heeft meestal geen ME. Op basis van dat vertekende onderzoek worden vervolgens conclusies getrokken voor de hele groep mensen “met chronische vermoeidheid”. Voor mensen met ME is dat dus onterecht!

Onder andere in de VS en Noorwegen heeft men expliciete wetenschappelijke aanwijzingen gevonden dat er bij mensen met ME sprake is van een fysieke aandoening waarbij het (neuro) immuunsysteem ernstig is ontregeld. De standaard reactie is aantonen dat het onderzoek niet deugt.

In Nederland zijn er aanwijzingen dat bij een aantal psychiatrische beelden , bv bipolariteit, juist sprake is van een (somatische) immunologische oorzaak (Drexhage cs, Rotterdam). De omgekeerde onderzoeksrichting ten opzichte van somatisatie. Daar valt wat uit te leren!

De aandoening ME zal niet herstellen met de goedwillende aandacht van een psycholoog in de vorm van cognitieve gedragstherapie of met graded exercisetherapie. Een acute blindedarmontsteking verdwijnt ook niet door er begripvol mee te praten.

De problematiek van mensen met vermoeidheidsklachten kan niet langer op één hoop worden gegooid. Er zijn mensen bij wie de cognitieve gedragstherapie wel zal helpen omdat zij geen ME hebben en er zijn mensen bij wie een zuiver somatische aanpak vereist is omdat zij een ziekte hebben die expliciet fysiek van aard is, namelijk ME.

Het begint er dus mee dat er onderscheid gemaakt wordt tussen ME patiënten en mensen met vermoeidheidsklachten die een andere achtergrond hebben

Vervolgens is er gericht onderzoek bij deze doelgroep nodig.

Het feit dat er nog geen passende medicamenteuze behandeling beschikbaar is, betekent niet dat de ziekte er niet is. Veel meer onderzoek in die richting is dus hard nodig.

Tenslotte is het heel hard nodig bij deze groep te stoppen met de benadering die uitgaat van somatisatie. De schade die op die manier wordt aangebracht is vele malen ernstiger dan het geven van valse hoop zoals genoemd wordt bij het commentaar door de SOLK vertegenwoordigers op het onderzoek naar het effect van rituximab.

Not-a-bedtime-story for ME…

 

Are you tired? Not just tired tired, but exhausted?  And that every day? And is your condition getting worse? Then this is your not-a-bedtime-story.

Never before I read a book that was a page turner to such an extent that I really couldn’t stop reading. And this concerned all three books of the trilogy.  Later on, I bought the blue rays that were based upon these books, in the original Swedish version off course, with subtitles.  Again I was highly fascinated by the intrigues and by the willingness of some to offer other people’s lives and health just to reach their goals.  I’m talking about the Millennium Trilogy. Mind you: if you are going to read the rest of this story, you will encounter some spoilers!

Thinking about this story I had the impression things like this do not happen in real life.  But then it made me reconsider what happened, and still happens, around a certain disease. Those events are even more horrifying. Let me take you along the path of my thoughts and check out the parallels I noticed.

The Millennium Trilogy is a fictional story about a secret group of the Swedish secret service. Could anything be more secret than that? The members of this group  decide to hide a spy, who deflected. They are convinced he will be useful for their cause. But then they realise there is a problem. Nobody is allowed to know about him. That is really a serious problem! So the first thing they do, is rename the problem. Give him another identity an another image.

Our real life case.

When somebody cannot work because he is ill, certain institutions have to pay him an allowance or a disability benefit because of this inability to work. In the case of the disease ME, Myalgic Encephalomyelitis,  it means that a lot of people have to be paid. As a consequence, the paying parties have a problem.

We have just learned what to do in case of a problem: we rename the problem!  And that is exactly what happened. They successfully managed to change the name and the image of the physical disease ME. The new name was Chronic Fatigue Syndrome. They also changed the diagnostic criteria into some vague criteria, that include other health problems, including psychiatric conditions. As a result this physical disease was altered into a mental illness. From now on, patients no longer suffered from a disease; instead they had false illness believes. And, off course, people with false illness believes no longer get disability benefits. So this part of the problem is solved.  But how did they get this far?

Let us return to the books:

One has to express a statement in a convincing way. In the books the special secret service group come up with an expert. The deflected spy physically abused his wife. As a consequence of his abuse she has a brain injury.  Their daughter, after years and years of ongoing abuse, attacks her father to protect her mother. She throws a kind of Molotov cocktail at him.

By use of an expert, a psychiatrist, the secret group succeed in court to shift the attention from the assault on the mother by the father to the supposed mental illness of the daughter. The psychiatrist makes up a number of observations and produces a false medical report to convince the court that the girl has a severe mental condition that needs treatment in the psychiatric hospital. And so it happens. The fact that the expert is a psychiatrist is useful in two ways. He has a respected expertise on this matter that will not be challenged easily and the fact that he is a doctor who does it all in benefit of his patient, places his actions and his statements  above any doubt or suspicion.

In our ME case this is, what I think, happened: the parties don’t want to pay the disability benefits. Hence, it is important  to prove that ME is not a physical disease but a mental condition that can be treated using rather simple interventions. And so we have not just one, but a whole group of psychiatrists. Even more convincing than only one in the book! These psychiatrists, these scholars, can’t be wrong, can they? When the therapy doesn’t work, it is due to the unwillingness of the patients to cooperate. These scientist are not only working for, at least in earlier times, respected universities, they also have a paid position in assurance companies. These psychiatrists,  put up a scientific research including more than 640 patients with the help of 5 million pounds public funding.

Their research contains many serious scientific flaws.  Amongst many other impermissible actions, they change outcome parameters during the research period without proper analysis. It makes me think of the manipulated psychiatric observations in the book .

Based upon this severely handicapped research, the psychiatrists  come up with a very, indeed very, moderate success rate on some of the parameters, but only after changing the way they are measured and after the elimination of a number of objective outcomes, that indicate there is no positive result at all. Possibly, there even is a worsening of patients situations. But no worries, that doesn’t matter if you have good scientific friends. These friends, from the Netherlands, write a very positive, absolutely unbiased, comment. They come to the conclusion that the outcomes are even better than the researchers thought. This comment is also published in the same respected medical magazine.

And then the next important point! You need people with influence in important places. In the trilogy we have a prosecutor of moderate calibre who is convinced, with some help,  he has a very serious matter in hands which regards the safety of the state. And off course this is a win-win situation. Having handled this case successfully, he will be a very well-known and respected prosecutor! He is willing to stand for this case and he seeks publicity; he is sure he will win!

Back to our case:

The psychiatrists have scientific friends and they have a respected medical magazine that publishes respected authors’ articles, such as theirs. The editor is sure this is an important research, thus there is no doubt the researchers and the magazine will win both!

But, the opponents?!

Those nasty opponents in the book spoil this beautiful win-win situation. The best one can do, is degrade the opponents: discredit them! The girl that attacked her father is, according to the story they spread about her, member of a violent group of satanic lesbians. That is the image they create. And it appears to be very effective too! Newspapers and other media are very much prepared to exploit this story as breaking news, without checking anything.

In real life again, we have those nasty patients who claim the researchers are wrong. And when they get to close to the truth, the other party starts to discredit them. They come up with stories about malicious patients, harassing them. They let all people know, with help from the media, they feel threatened.  They even get help from the editor of the medical magazine: “….one sees a fairly small, but highly organised, very vocal and very damaging group of individuals who have I would say actually hijacked this agenda and distorted the debate so that it actually harms the overwhelming majority of patients,”. This community actively seeks to identify and attack those who are associated with the …. trial.” And the media have no problem whatsoever to endorse this view, without searching for the truth.

That is an effective way of degrading people isn’t it? It is even better than the book. It is more subtle, however not to subtle; that would spoil the effect. In first place, they are patients , so what do they know about our scientific work? Just for the record: there are doctors and scholars of all kinds amongst these patients. They understand scientific principles better than the researchers appear to do. But, mind you, they are patients and that reduces them to whatever you want. Secondly, these patients are so unthankful. They don’t know what is good for them. Third, let’s split them up, the majority of patients is willing to undergo our treatment. And then, these very few patients are aggressive!  They are very damaging.

I really have to admire the resourcefulness, or did they read the trilogy as well?

In the books we meet a journalist who is trying to help the girl with the fictitious mental condition. He is getting very near to find out and prove the ugly truth. What can be done to discredit him? Well, simply hide some drugs and a lot of cash in his house and make sure the police will find it. So in the end, nobody will ever believe him.

Back again in our situation, we find that last years quite a number of scientists and patients with a scientific background requested to release the research data so one can test the evidence. Naturally, also in these cases it helps to discredit  these initiatives. They are vexatious. Why are they vexatious?  I have always thought that scientific outcomes have to be tested and retested. That is one of the most important aspects of science! When one has nothing to hide, it will be a positive challenge to find out that results can be replicated.  But no, only friends can test the outcomes. The argument that the privacy of the patients who took part in this research has to be protected, appears to be a very misused  argument, because data have been anonymised.

Something more on the influence of the psychiatrist

The expert in the Swedish case, the respected psychiatrist, has hospitalised the girl using false arguments based on fake observations. This is happening in real life too. It happens at this very moment. We all know at least one example by name, but there are more!

All of the above is the reason this is not-a-bedtime-story. But there is hope. Hope because the Institute of Medicine in the US have declared that ME is a serious physical disease. (naturally the US scientists are nuts…) In Norway people with ME are treated with Rituximab and the signs are promising this research will lead to positive outcomes (these Norwegians shouldn’t create false hope…) and several researchers all over the world, including the UK, have found changes in the immune system in ME-patients (no doubt these will be false findings…). Thus, where will we pace from here? The future surely will tell us. In the Dutch translation the third book of the Millennium Trilogy is called “Justice”. I am convinced justice will be done!

Wetenschappers belazeren de kluit…

…en er gebeurt niets. Het kan zomaar! Diederik Stapel werd aan de schandpaal genageld omdat hij onderzoeksgegevens zelf had verzonnen. Daarbij stond de gezondheid van mensen niet meteen op het spel. Bij een groot onderzoek in Engeland is de gezondheid van patiënten wel rechtstreeks in het geding en Nederlandse wetenschappers zijn daarbij betrokken. Er worden behandelingen aanbevolen die voor een deel van de patiënten ronduit schadelijk zijn. Iedere eerstejaars student zou voor zo’n wanprestatie van de universiteit worden gestuurd, maar een stelletje artsen in Engeland kon rustig met de uitkomsten rommelen. Zelfs na dat gerommel waren de uitkomsten heel mager. Hun onderzoek werd met veel bombarie in belangrijke tijdschriften gepubliceerd en de pers nam de juichverhalen over. De twee Nederlanders schreven een commentaar en dikten het vermeende succes flink aan. Ook zij kregen de vrije hand. Niemand legde hen iets in de weg. Eén van hen werd in 2005 in een adviescommissie van de Gezondheidsraad benoemd en de ander werd dit jaar in zo’n zelfde commissie benoemd. De richtlijnen in Nederland voor de behandeling van deze ziekte zijn rechtstreeks op deze rommel gebaseerd. Het kan dus gewoon zomaar. Je kunt dus naar hartelust de kluit belazeren en er ook nog voor beloond worden.