Our daughter being ill for 16 years allready.

Our daughter, now aged 26, has been ill since she was 10 years old. That feels very bad.

If she is blamed for not working on her recovery, it’s hartbreaking.

The rehabilitation physician, after almost three months of clinical rehabilitation, declared this was a case of puberty that got out of control.

Not only was she persuaded to perform more physical effort than she was able to, they also made her feel guilty for the fact that she did not recover.

One cannot seek help for this illness without being approached with great suspicion. That counts for the patient as well as for the parents.

Instead of being parents we were turned into sickness sustaining factors.

One member of the family suggested that father was suffering from Münchhausen by proxy. The family has been split apart forever

From the very first moment the sickness has been labeled with the diagnosis ME, the opinion of the patiënt nor the patients parents matters anymore. Whatever background one has, the patient and the parents have false illness beliefs and therefore they don’t have any say.

After 16 years passing by, we see our daughter’s health situation deteriorating more and more. With much effort, mostly studying at home and 1 hour a day at school, she managed graduating from highschool.

She had to give up her big dream building a career as a professional singer. She had to end her studies at the conservatorium because she got worse as a result of the exertion of singing, studying and cycling the short distance to the conservatorium.

Increasing her activity level did not make her better, it worsened her health status.

Recently our daughter consulted a physician for advice on medication. The doctor asked father to leave the room and our daughter was questioned about the homesituation; was she getting along well with her parents?

It’s so frustrating, knowing that severely flawed scientific research still is being used to underpin the treatment. A treatment that did not lead to amelioration or recovery but, to the contrary, led to deterioration.

Often our daughter asks herself if she is really ill? She is lying in a dark room, can’t cope with sudden sounds and lights, she can’t climb the stairs anymore, she needs help washing and getting dressed, she has severe metabolic problems.

The gaslighting certainly did its job.

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A Dutch fatigue researcher trying to trivialize the criticism

‘More (in-)convenient thruths’

One can certainly understand the fact that fatigue professor Jos van der Meer is trying to trivialize the very serious scientific flaws the PACE-trial is known for.

The Dutch fatigue researches, not unfamiliar to Van der Meer, are suffering from comparable very severe scientific shortcomings.

Van der Meer commented on a blog Jim Faas published in Medisch Contact (more (in)conveniant thruths). According to the fatigue professor it lacks nuance toward the description of CBT (talking therapy) and GET (moving).

However, a real example of a lack of nuance and a lack of underpinning, can be found in the overenthousiastic publications of Dutch fatigue researchers and their claims in the press about the allegedly great results of cognitive behavior therapy and graded exercise therapy.

The Dutch fatigue studies show very clearly that these therapies have no curative effect whatsoever.

Just some of the problems:

  • There were no objective outcome measures used in the studies, or they were only reported years later, or they were not reported at all. The effects of this objective measures were non-existent.
  • One out of two inclusion criteria was not used in defining and measuring recovery or improvement. The results by the way, were very poor.
  • There was no controlgroup, or essential oucomes were not measured in the controlgroup.
  • Also not unimportant: diagnostic criteria were very loosely applied allowing for a very heterogenious group of patients. Conflating is the adequate English description for this phenomenon.
  • Recovery was defined post hoc, meaning severly ill patients were considered to have recovered.

We could easily add more problems to this list, however, let’s ask a comment on these facts first:

Dear mister Van der Meer, we are looking forward to your, no doubt seriously underpinned, explanation concerning the overoptimistic expressions of what was in fact a multiple null effect.

 

Translation of Van der Meers comment in Medisch Contact

“In a blog one can of course take a leap with nuance, be biased, and claims do not have to be scientifically substantiated. However, colleague Faas is stretching the limit too far.
CBT reduced to “talking” and GET defined as “moving” is a disqualifying simplification.
I don’t want to discuss here the way in which critics have been given opportunity in the Journal of Health Psychology to criticize the PACE trial . It can be noted, however, that the PACE trial is not the only trial that has shown a positive effect of CBT (whether or not combined with a Graded Excercise Program), but Faas has apparently put aside all of these researches. Then he makes a Cartesian giant swing towards his positive appreciation for the Montoya et al. and the Rituximab studies of Fluge et al. However, I have to disappoint Faas: there is very fundamental criticism towards these studies and the results need to be confirmed indepently.”

 

Voor wie ook weer? Ongemakkelijke (on)waarheden

Naar aanleiding van de reactie van de heer Jos van der Meer op de blog van Jim Faas in Medisch Contact

Het is alleszins begrijpelijk dat professor Jos van der Meer de zeer ernstige wetenschappelijke tekortkomingen van de PACE-trial bagatelliseert. De hem niet onbekende Nederlandse vermoeidheidsonderzoeken vertonen namelijk gelijksoortige uitermate ernstige tekortkomingen. Van der Meer spreekt over onvoldoende nuance in de blog van Jim Faas. Een echt voorbeeld van gebrek aan nuance en onderbouwing vormen de overenthousiaste uitingen van de Nederlandse vermoeidheidsonderzoekers in hun publicaties en in de pers over de veronderstelde positieve effecten van cognitieve gedragstherapie en graduele oefentherapie. De betreffende onderzoeken tonen namelijk bij uitstek aan dat ze geen enkele curatieve werking hebben. Enkele voorbeelden: objectieve uitkomstmaten werden niet gebruikt, niet of pas heel laat gerapporteerd, de resultaten vielen enorm tegen (lees: positieve effecten vastgesteld met die objectieve metingen waren afwezig), het belangrijkste inclusiecriterium werd niet gebruikt bij het vaststellen van de definitie herstel (de resultaten waren belabberd), een controlegroep ontbrak of essentiële metingen werden bij de controlegroep niet gedaan. Ook een belangrijk punt: er werd zeer losjes omgegaan met de diagnostische criteria waardoor de onderzoeksgroep bestond uit patiënten met zeer uiteenlopende oorzaken voor hun klachten. Conflating noemen de Britten dat. De definitie van herstel werd pas na afloop van het onderzoek vastgesteld waarbij ernstig zieke patiënten hersteld werden verklaard. Ik kan nog wel even doorgaan…. Beste meneer Van der Meer, we zien uit naar uw (gefundeerde) onderbouwing van de optimistische uitingen over een nul-effect.