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.