Part 1
Also involvement of our wonderful Mark Vink
Translation ME Steungroep (Support group)
28 MAY 2025: AN EXCITING DAY AT THE CENTRAL COUNCIL OF APPEAL
By Ynske Jansen
On May 28, I attended a hearing of the Central Appeals Tribunal. It dealt with the cases of four ME patients who had appealed against decisions by the UWV not to grant them WIA or IVA benefits or to terminate their benefits. The importance is great, also for many others with ME. There is reason for some hope. My subjective report follows below. It may be difficult to read because of the sometimes technical details, but ME patients who have had dealings with the UWV will recognize a lot in it.
All patients had provided medical information from cardiologists Frans Visser and Linda van Campen of Cardiozorg, a medical center that specializes in ME/CFS and has now examined and treated thousands of patients.
In all cases, insurance physicians from the UWV had dismissed this information as irrelevant. The UWV had even labeled Cardiozorg's methods, such as a 2-day ergometry test (bicycle test) to determine post-exertional malaise (PEM) and a tilt table test with extracranial Doppler ultrasound to determine orthostatic intolerance (OI) and reduced blood flow to the brain, as unscientific.
Prof. Van der Meer as a medical expert
The judges of the Central Council are not doctors, so they cannot judge for themselves which doctor is right, the one from the UWV or the one from Cardiozorg.
That is why they had asked questions about three of the four cases to emeritus professor Jos van der Meer as a medical expert. He has done research into ME/CFS for years and is a member of the guideline working group ME/CFS. Van der Meer examined the patients involved and studied the case files.
This resulted in three extensive reports in which he sharply criticized the arguments and conclusions of the UWV. Van der Meer indicated that the research methods of Cardiozorg are scientifically well-founded and that the cardiologists associated with it, emeritus professor Visser and doctor van Campen, have many scientific publications to their name and are internationally recognized as experts. According to him, the limitations of the patients involved are much more serious than the UWV assumes.
The cases were heard jointly by three judges, Mrs Van der Kris (chair), Mrs Dompeling and Mr Van der Velde. It was too difficult for the ME patients themselves to be physically present at the hearing. They followed their case via a video connection or had a family member do so.
In the courtroom they were legally represented by John Eshuis and Mr Yvonne van der Linden. They had asked Frans Visser and Linda van Campen to act as expert witnesses. The UWV was represented by three lawyers and two insurance physicians.
According to established case law, the Council must in principle follow its own expert. But there was still a lot to discuss. Van Campen and Visser had to go to an international scientific meeting of ME researchers in London in the afternoon. For this reason, they were immediately given the opportunity to respond extensively to questions from the judges on a number of general topics.
Degrees of severity
The chairman noted that the degree of severity of ME/CFS is described in different ways. Van Campen explained how Cardiozorg determines the severity of the disease based on information from the patient. In doing so, they follow the International Consensus Criteria for ME (ICC), which classify the severity of ME as mild, moderate, severe and very severe, mainly based on the activity and functioning of a patient in practice.
Van Campen noted that patients are sometimes forced to behave more actively than is medically responsible, for example because they do not receive sufficient help, which means that they actually do more than their capacity allows. This can make the severity of the disease seem less than it actually is. Visser also noted that 'mild' is a misleading term and that even people with 'mild' ME are often unable to shower daily.
Variation and progression
It also emerged that the disease not only differs per person, but that changes can also occur within the same person. Environmental factors can also play a role, such as heat or stress. Little is known about the onset and progression. For some, it starts mildly and gradually worsens. Others become bedridden immediately after a 'trigger', such as a viral infection.
There is no curative treatment. In addition to providing lifestyle rules, Visser and Van Campen try to help patients with medicines and supplements, intended to alleviate symptoms. That sometimes works (a little), for example when someone who used to be able to take 500 steps a day now takes 1000 steps.
Orthostatic intolerance
Van Campen also explained orthostatic intolerance (OI). This manifests itself, for example, in that you become light-headed or dizzy when standing or sitting upright (orthostasis), have difficulty seeing clearly, have a lower pain threshold and a higher breathing rate and develop muscle pain more quickly.
She indicated that reduced blood flow to the brain plays an important role in this and emphasized that in about half of the cases there are no abnormalities in the area of heart rate and blood pressure, such as in POTS*.
Van der Meer had indicated in his reports that he had previously been sceptical about the importance of orthostatic intolerance in ME/CFS. In a publication he had mainly focused on POTS. But his insight had changed due to the publications of Van Campen and Visser and foreign scientists in this field.
In one case, the UWV appeared to have confused OI with POTS, as often happens. At Cardiozorg they often use a tilt table test combined with measurement of the blood flow to the brain to determine OI. To prevent long-term deterioration (PEM) they tilt only very briefly (5 minutes). In seriously ill patients they tilt only 20 degrees.
Van Campen answered affirmatively to Judge Dompeling's question as to whether reduced blood flow also translates into activities. The more the blood flow to the brain is reduced, the more serious the consequences for the ability to be active.
The most important rule of life that ME patients with OI are given is the one about the importance of resting while lying down. 'We do not determine how long someone can stand, but the disease determines that', says Van Campen. She referred to the advice in the English NICE guideline to stay within your limits, within your energy envelope. When sitting and standing causes complaints, patients can only perform short activities and must then always rest while lying down.
Concentration and memory, N-Back test
The chairman could imagine that reduced blood flow to the brain could affect the cognitive functioning of patients. This was also discussed. Cardiozorg illustrates that this is reduced by an N-Back test, a short test for working memory, for example before and after a tilt table or bicycle test, or on a good and a bad day.
Part 2
The UWV doctors involved believe that cardiologists are not allowed to administer such a test and that the result says nothing about 'retaining and dividing attention' and 'remembering'. These are the cognitive functions that they look at in their assessment to determine possibilities and limitations.
Van der Meer already contested both arguments in his reports. According to the UWV doctors present, an extensive neuropsychological examination (NPO) would be necessary to determine cognitive limitations. (I find it strange that they never requested such an examination and yet state with certainty that there are no limitations in the area of memory and concentration.)
Judge Van der Velde asked what Cardiozorg thinks of such an extensive NPO. Van Campen replied that they (as cardiologists) cannot do that, and that it is also much too heavy for their patients. Furthermore, the neuropsychologist who would do such a study must have sufficient knowledge of ME to be able to interpret the results properly.
De-conditioning
Furthermore, the subject of 'de-conditioning' was briefly discussed. Aren't the complaints simply the result of too little exercise? Judge Dompeling asked whether Cardiozorg also sometimes determines that someone does not have ME/CFS. Van Campen confirmed this.
These are exceptions, however, because mainly patients with a strong suspicion of ME/CFS, or a diagnosis that has already been made by another doctor, are referred to Cardiozorg. The difference does come out in a 2-day cycling test. When there is only de-conditioning, someone performs better in the test on the second day. With ME/CFS and PEM, the performance in the second test is actually worse.
In response to Judge Dompeling's question whether you can say that it is an abnormal form of fatigue, Van Campen replied that you should not actually use the word 'tired', it is more exhaustion. 'Patients often cannot express it well themselves', Visser added.
Later during the hearing, the subject of 'de-conditioning' was briefly discussed again. Judge Van der Velde pointed out to the UWV doctors their argument that people with ME/CFS should keep moving and that it would be counterproductive if the UWV were to acknowledge too many limitations.
He asked whether the insights at the UWV had changed in the meantime. Insurance doctor 1 then said that pacing is necessary for PEM, dosed activity and not going beyond your limits. Insurance doctor 2 quickly added that deconditioning can be medical (i.e. a result of illness) but also non-medical (i.e. a result of behavior).
At the end of the general part, chairman Van der Kris asked whether the UWV representatives had any questions for Visser and Van Campen. That caught them off guard and they had none. After a short break, the discussion continued, focusing on the four cases.
Subjective-objective
Van der Meer had explained that the questionnaires used by Cardiozorg (CIS, SF-36/RAND-36) were validated, that is to say, recognised as valid research. The UWV had argued against this that the answers of patients are subjective.
In his response to this, Van der Meer had explained that there are more diseases without objective laboratory tests and that he had based his own findings partly on the anamnesis and his clinical assessment.
He referred to the former professor of social insurance medicine Han Willems, who saw consistency and plausibility as the highest attainable form of objectivity for insurance medicine. (This is also the starting point in the Guideline for medical disability criteria and the Memorandum of explanation of the Assessment Decree 2000, which was partly due to the efforts of the Support Group and which all UWV doctors must adhere to.)
The chairman had missed a response to this in the UWV's written rebuttal and asked about it. Insurance doctor 1 replied that the questionnaires in question do say something about how someone feels. She also said that UWV doctors thoroughly inquire about the complaints and daily functioning before and during the illness (the daily story) and that the consistency in this does emerge.
The judge noted that insurance physicians look at the total picture, just like Visser, Van Campen and Van der Meer, and asked whether they should include the results of the questionnaires and tests. Insurance physician 1 confirmed this.
The chairman concluded that the distinction between subjective and objective was therefore not as absolute and black and white as the UWV had previously written. Insurance physician 2 was quick to add that insurance physicians should also consider whether 'non-medical factors' (behaviour? financial interest?) play a role in order to see whether everything that the interested party claims fits the illness.
The chairman confirmed that the insurance physician has a completely different task than a treating physician, but noted that what the UWV is now saying does come across very differently than what was previously claimed. Doctor Van Campen also explained that the answers to question 3 in the RAND-36 questionnaire correspond well with the objective results of the 2-day bicycle test.
From left to right: John Eshuis, Frans Visser, Linda van Campen and Yvonne van der Linden during a short break
UWV acknowledges the wrong
The UWV representatives also eventually admitted that the N-Back test can indicate that something is wrong and that reduced blood flow to the brain is of course an effect, and possibly not only on working memory.
They came up with the extended NPO again, with a 'symptom validity test' to signal dishonest answers or exaggeration ('malingering'), but were a lot less certain about the question whether this can be asked of the patients involved and whether this is still useful 2 years after the 'date in question'.
When discussing the double bicycle test, insurance physician 1 said that it does indeed give an indication of resilience. The chairman found that enlightening because the UWV had previously stated that the test was not sufficiently validated. Insurance physician 2 also stated that over the years more attention had been paid to PEM. Judge Dompeling told the UWV that it had initially been stated that this test says nothing about the severity of the disease. Insurance physician 1: 'I take that back'.
The tilt table test was also discussed. Judge Dompeling told the UWV that they had stated that this test says nothing about POTS. Insurance doctor 2 responded that he had seen no 'evidence' (he meant scientific proof) for a connection between blood flow to the brain and limitations. 'The measurement is something different than the complaint and the complaint is something different than a limitation'. This had already been discussed in more detail in the general section. Van Campen later explained that POTS is a heart rate response and that the heart rate itself says little about the complaints. The OI does say something about that. OI is about the complaints. Fainting can be one of them, but at Cardiozorg they do the tilt table test in such a way that people do not faint because of it. She had already explained that OI involves much more than just being dizzy or fainting
Finally, the question was addressed when the diagnosis of ME/CFS should be ruled out (exclusion). One of the patients had, in addition to ME, a whiplash disorder. The UWV had stated that she could therefore not have ME/CFS. Partly in response to Van der Meer's report, the UWV doctors quickly admitted that they had been wrong about that.
In their response to questions from the judges, the UWV doctors admitted on many points that they were wrong, both with regard to their assessment of the research methods and results of Cardiozorg and in their response to the reports by Van der Meer. They had gone in with a straight leg on paper, but in court they could maintain little of their previous positions.
but keeps patients in uncertainty
After this exchange of questions, answers and arguments, the Chairman asked: 'What does it mean for matters, if we follow Van der Meer's reports?'
John Eshuis argued on behalf of two clients that the Council should then decide that they are fully fit for work because no arguments have been put forward for not following the reports. However, Van der Meer is not an insurance physician and therefore cannot and may not draw up a precise functional possibilities list (FML), on the basis of which the UWV determines the possibilities to work, and thus the earning capacity and the percentage of disability. This also applies to Van Campen and Visser.
Attorney Yvonne Van der Linden had therefore asked Mark Vink on behalf of the client she represents together with Eshuis to issue a report based on the available documents.
Mark Vink is an insurance physician and general practitioner, but is no longer BIG-registered because he can no longer practice these professions due to very serious ME. He is also a scientific researcher and has several international publications on ME/CFS to his name. In his report, Mark Vink indicated, based on the data available to him, what the functional (im)possibilities of the patient in question are.
Van der Linden proposed that the Council submit this report to Van der Meer. He is not allowed to draw up an FML himself, but could indicate what he thinks of Vink's findings.
The UWV's answer did not come out so smoothly. The chairperson expressed surprise at the fact that the UWV had apparently not prepared for her final question.
She gave the UWV representatives some time to deliberate among themselves, including on the question of whether they would uphold their decisions.
After that deliberation, one of the UWV lawyers stated that the UWV does follow the Van der Meer reports in some parts ('as regards PEM and POTS') and does not follow them in some parts ('not as regards the N-Backtest').
After a question from judge Van der Velde, an insurance physician present corrected the UWV lawyer and it became: 'as regards PEM, POTS and OI'. The UWV indicated that it still had to investigate what following the Van der Meer reports meant for the FML in the four cases.
It therefore remains to be seen how seriously the UWV will actually take the restrictions associated with PEM and OI of the four patients.
Hope for ME patients
The Council will make a ruling on 9 July at the earliest, which could be an interim ruling or a final ruling. The Council may also first have an additional expert investigation carried out.
For the four patients involved, this means even longer uncertainty, but in my opinion they do have reason to hope. I have only been able to read the part of the documents that was sent to me by the patients involved, but I was impressed by the reports of Van der Meer and Vink. Also the calm and expert manner in which Van Campen and Visser answered questions from the judges
The calm and expert manner in which Van Campen and Visser answered questions from the judges will also certainly help to arrive at good rulings. I was struck by how well the judges had immersed themselves in all aspects of ME/CFS.
And, last but not least, the strong involvement of the two legal aid workers, John Eshuis and Yvonne van der Linden, also helped. I know most about Yvonne van der Linden's thorough approach, because she had regular contact with the Support Group about her cases that were being dealt with until shortly before the hearing.
The rulings will also be important for the (many) ME patients who were previously assessed by the UWV using the same type of arguments as those that have now been refuted, or who are still awaiting a (re)assessment for the WIA or Wajong.
*POTS: Postural Orthostatic Tachycardia Syndrome. This is characterized by a sharp increase in heart rate (more than 30 beats per minute in adults) when changing position from lying down to standing. This can also lead to serious complaints.
Some linguistic corrections/adjustments were made on June 1, 2025 (ed by Ynske Jansen)
I'll maybe try reading it later, when I have a dictionary to hand.