NL: UWV Dutch Employee Insurance Agency ao disability

[EndME]

@Grigor, you are perhaps the most well known patient advocate in the Netherlands so I think you should be well aware of these issues and the very hefty problems that may follow from this decision in the long-term given the historic precedent we have already seen occurring over and over again.

CPETs and tilt table tests have an extremely questionable validity in seperating ME/CFS from well-matched controls on a population level basis. This has been discussed at depth on this forum and has been written about in for example https://mecfsscience.org/discrepancies-in-2-day-exercise-studies/ and https://mecfsscience.org/the-problems-with-pots/. Whilst we can discuss the evidence and p-values on a population level back back and forth, what is extremely and undoubtedly clear is that they have absolutely no validity in determining illness status and disability at the individual level as there is an extreme lack of separation between the groups. Take for example the tilt-table results of from the NIH intramural study (the study can be seen as problematic from different view points, but this part of the study is spot-on but you can also look at other well-matched studies if you want to). The tilt-table test results of the different group look basically identically (the same applies to the CPET results when confounders are accounted for) and provide absolutely no way on how to predict which person lies in which group and that despite ME/CFS patients describing to be heavily disabled by orthostatic intolerance whilst all healthy controls don’t experience any disability. They are all heavily disabled but look no different to their matched healthy counterparts on the tests!

Why does this matter? Well first of all it has no scientific validity. Secondly this can easily backfire. You can have ME/CFS patients being denied disability benefits on the basis of something that has no scientific merits on determining their disability (but I don’t see this as a major worry because the people ordering these tests tend to make a living from providing positive test results). The much larger worry are timelines as the following:

• You have a healthy investigative journalist (or someone else hired by the UWV) report with faked symptoms, go do these tests, inevitable get a positive result precisely because these tests have no validity in determining ME/CFS status on the individual level and then write a story about how “ME/CFS is a fake illness with fake tests that is costing taxpayers millions”
• If I was the UWV I would do exactly the above (for example in form of an insurance investigator which they are known to use in such situations), which they have done in comparable situations, which in the worst case not only questions the validity of ME/CFS but may even lead to questioning the existing benefits people will then have received on the basis of such tests
• You can have a patient that is ill for some months does such a test ends up on benefits on the basis of these tests and then goes to the public and tells everyone how it’s all psychological or fake. Seems ridiculous? This is exactly what we’ve already seen happen over and over. In Long-Covid and ME/CFS a problematic narrative has arisen because Paul Garner was presumably ill and subsequently recovered and has used that as a way to discredit the concept of ME/CFS and Long-Covid with a strong recommendation towards CBT and GET. Eventually the same might occur here.

@ME/CFS Skeptic and @Jonathan Edwards can probabily provide you more details if you wish, but to me it seems entirely backwards to couple insurance benefits to tests who cannot be used to determine anything in a given individual. It seems as ridiculous as offering disability benefits on gentic tests once DecodeME has identified risk genes.

 

[Utsikt]

The case might have been too old for that, but why didn’t they use FUNCAP if it wasn’t? It was designed for this issue specifically.

 

[EndME]

The case might have been too old for that, but why didn’t they use FUNCAP if it wasn’t? It was designed for this issue specifically.

Because there is no reason for it to be used and it wouldn't change anything.

The insurance companies have they're own means of determining disability which should "be equal across different conditions". They are supposed to make their decisions on the basis of how disabled someone is by a condition not on the basis of what that condition is.

The fact that insurance companies have been denying disability benefits has nothing to do with them not having the right tools to assess disability. They simply don't want to pay out benefits and it is in no way beneficial to the insurance physician to hand out benefits. In many instances they are probably denied because they don't believe there is a disability occuring in the first place. FUNCAP and tests without validity don't change the beliefs of people.

 

[Grigor]

@Grigor, you are perhaps the most well known patient advocate in the Netherlands so I think you should be well aware of these issues and the very hefty problems that may follow from this decision in the long-term given the historic precedent we have already seen occurring over and over again.

CPETs and tilt table tests have an extremely questionable validity in seperating ME/CFS from well-matched controls on a population level basis. This has been discussed at depth on this forum and has been written about in for example https://mecfsscience.org/discrepancies-in-2-day-exercise-studies/ and https://mecfsscience.org/the-problems-with-pots/. Whilst we can discuss the evidence and p-values on a population level back back and forth, what is extremely and undoubtedly clear is that they have absolutely no validity in determining illness status and disability at the individual level as there is an extreme lack of separation between the groups. Take for example the tilt-table results of from the NIH intramural study (the study can be seen as problematic from different view points, but this part of the study is spot-on but you can also look at other well-matched studies if you want to). The tilt-table test results of the different group look basically identically (the same applies to the CPET results when confounders are accounted for) and provide absolutely no way on how to predict which person lies in which group and that despite ME/CFS patients describing to be heavily disabled by orthostatic intolerance whilst all healthy controls don’t experience any disability. They are all heavily disabled but look no different to their matched healthy counterparts on the tests!

Why does this matter? Well first of all it has no scientific validity. Secondly this can easily backfire. You can have ME/CFS patients being denied disability benefits on the basis of something that has no scientific merits on determining their disability (but I don’t see this as a major worry because the people ordering these tests tend to make a living from providing positive test results). The much larger worry are timelines as the following:

• You have a healthy investigative journalist (or someone else hired by the UWV) report with faked symptoms, go do these tests, inevitable get a positive result precisely because these tests have no validity in determining ME/CFS status on the individual level and then write a story about how “ME/CFS is a fake illness with fake tests that is costing taxpayers millions”
• If I was the UWV I would do exactly the above (for example in form of an insurance investigator which they are known to use in such situations), which they have done in comparable situations, which in the worst case not only questions the validity of ME/CFS but may even lead to questioning the existing benefits people will then have received on the basis of such tests
• You can have a patient that is ill for some months does such a test ends up on benefits on the basis of these tests and then goes to the public and tells everyone how it’s all psychological or fake. Seems ridiculous? This is exactly what we’ve already seen happen over and over. In Long-Covid and ME/CFS a problematic narrative has arisen because Paul Garner was presumably ill and subsequently recovered and has used that as a way to discredit the concept of ME/CFS and Long-Covid with a strong recommendation towards CBT and GET. Eventually the same might occur here.

@ME/CFS Skeptic and @Jonathan Edwards can probabily provide you more details if you wish, but to me it seems entirely backwards to couple insurance benefits to tests who cannot be used to determine anything in a given individual. It seems as ridiculous as offering disability benefits on gentic tests once DecodeME has identified risk genes.

I'm definitely aware of the issues with the 2-day CPET, but less so with the concerns around tilt table testing. Honestly, I think @ME/CFS Skeptic is overal a lot better informed about both the tests and the UWV situation.

 

[EndME]

I'm definitely aware of the issues with the 2-day CPET, but less so with the concerns around tilt table testing. Honestly, I think @ME/CFS Skeptic is overal a lot better informed about both the tests and the UWV situation.

If anything I would even see the concerns as even larger for the tilt table testing, as also detailed in the above article by @ME/CFS Skeptic, but I'll let others comment as I've already said my piece.

 

[Turtle]

I was one of them, back in 2008. Waiting for an appoinment at this same court UWV restored my disability claim.
On CPET I could not even get to 40% VO2max and still UWV tried to have me work for 20 hours a week.
One argument to downplay my CPET was that my bad leg had not been measured. (???) I made minced meat out of that by using my GP's reaction. He laughed out loud, saying: "Yeah, when you're measured you can run like a lapwing". (saying).

For years I'd asked for my claim, still working 20 hours in a rolling PEM and deteriorating because of that, hanging on by my fingernails.
UWV needed to point out 3 jobs I could still do, they only came up with one; telephonist., 44% VO2max.
The other two were way above 40% VO2max.
One was orderpicker; after 1 hour or less, I would have become "left luggage."

It took 2 years and 4 months to go through the procedures and restore my income. I was lucky I had a partner with an income.
For someone alone it's almost impossible to do.

 

[Grigor]

If anything I would even see the concerns as even larger for the tilt table testing, as also detailed in the above article by @ME/CFS Skeptic, but I'll let others comment as I've already said my piece.

I'm quite crashed from yesterday so I haven't read the blog again, but if I remember correctly most of the criticism is about the validity of POTS. At the end of the article I believe there was suggested to look at cerebral blood flow reduction instead of POTS and a link to an article by Van Campen en Visser. The ruling was about their work and also partly that measure. But again he'll be able to answer that better than me.

 

[Trish]

If TTT or 2day CPET were a requirement for disability benefits, that would be a serious problem. Some won't get positive results on either, and some are too sick to do them, and the science isn't solid. But if the tests are used as an additional piece of evidence for some pwME, added to FUNCAP and other evidence of disability, I can see they could help show there's orthostatic or energy use problems for those individuals.

 

[Utsikt]

They are supposed to make their decisions on the basis of how disabled someone is by a condition not on the basis of what that condition is.

Which is exactly what FUNCAP captures - it shows how disabled the patient reports that they are based on various everyday activities.

If you report that you get knocked out for a couple of days by taking the bus or having a longer conversation with two people, they can’t reasonably argue that that is compatible with working 30+ hours a week.

Barely any of the other disabling conditions are rated based on objective findings, either (even though they might have biomarkers). I don’t see how this would be any different.

And that has nothing to do with the incentives that the insurers have to not pay out, because you could simply argue that they accept this kind of evidence in other cases. Deviating from their precedent would amount to clear discrimination, and probably be a breach of the UNCRPD that EU member nations are bound by.

 

[Grigor]

If TTT or 2day CPET were a requirement for disability benefits, that would be a serious problem. Some won't get positive results on either, and some are too sick to do them, and the science isn't solid. But if the tests are used as an additional piece of evidence for some pwME, added to FUNCAP and other evidence of disability, I can see they could help show there's orthostatic or energy use problems for those individuals.

It's just additional as not everyone (maybe most?) are not able to do these tests.

The thing is they would often be dismissed all together, but after this ruling they have to be taken into account as well.

But indeed they're not a requirement.

 

[EndME]

I'm quite crashed from yesterday so I haven't read the blog again, but if I remember correctly most of the criticism is about the validity of POTS. At the end of the article I believe there was suggested to look at cerebral blood flow reduction instead of POTS and a link to an article by Van Campen en Visser. The ruling was about their work and also partly that measure.

No problem. The criticism of the validity of POTS is precisely because people with ME/CFS report symptoms of orthostatic intolerance but if you do a tilt-table test or NASA-lean there is largely no difference in POT, i.e. the tilt-table tests look the same for people who don't report symptoms of orthostatic intolerance vs those who report extreme disability from orthostatic intolerance. That is why POTS is questioned in ME/CFS, precisely because the tilt-table test or NASA lean doesn't seem to capture anything meaningful, certainly not the disproportionate disability.

Whether or nor CBF is a better measure to differentiate between populations is a valid question (and I would like to see some well controlled studies), but there is currently no good evidence to suggest it can be reliably used to assess ME/CFS status in individuals or even their disability.

 

[EndME]

Which is exactly what FUNCAP captures - it shows how disabled the patient reports that they are based on various everyday activities.

If you report that you get knocked out for a couple of days by taking the bus or having a longer conversation with two people, they can’t reasonably argue that that is compatible with working 30+ hours a week.

Barely any of the other disabling conditions are rated based on objective findings, either (even though they might have biomarkers). I don’t see how this would be any different.

And that has nothing to do with the incentives that the insurers have to not pay out, because you could simply argue that they accept this kind of evidence in other cases. Deviating from their precedent would amount to clear discrimination, and probably be a breach of the UNCRPD that EU member nations are bound by.

But that's missing the entire point, it's all already been captured.

The insurance physican already has his equivalent of FUNCAP. The stories we are here seeing is patients telling the insurance that they are completely knocked out after walking around the block for weeks, that they crash after minimal cognitive tasks etc it's all already written down and the insurance physician writes down: This person can work 30 hours a week.

That is not because what was written was not written on the right piece of paper, because it is already written on paper that "you report that you get knocked out for a couple of days by taking the bus or having a longer conversation with two people". You can also write things in FUNCAP if you prefer but it's hard to see how that would matter, the information is all already there, in black and white.

You can argue about clear discrimination, but what I describe above is exactly what is happening in these cases.

 

[Utsikt]

But that's missing the entire point.

The insurance physican already has his equivalent of FUNCAP. The stories we are here seeing is patients telling the insurance that they are completely knocked out after walking around the block for weeks, that they crash after minimal cognitive tasks etc it's all already written down and the insurance physician writes down: This person can work 30 hours a week.

That is not because what was written was not written on the right piece of paper, because it is already written on paper that "you report that you get knocked out for a couple of days by taking the bus or having a longer conversation with two people". You can also write things in FUNCAP if you prefer but it's hard to see how that would matter, the information is all already there, in black and white.

You can argue about clear discrimination, but what I describe above is exactly what is happening in these cases.

Then I don’t understand what is happening here.

If the issue is that the insurers are refusing to believe the patient’s and their doctor’s testimonies, then the legal argument should be about discrimination.

Because as you said, this isn’t about wether or not ME/CFS can cause severe disability, it’s about how disabled the individual is. Or are they actually arguing that disability as a result of ME/CFS can’t be accepted for some reason?

 

[EndME]

Then I don’t understand what is happening here.

If the issue is that the insurers are refusing to believe the patient’s and their doctor’s testimonies, then the legal argument should be about discrimination.

Because as you said, this isn’t about wether or not ME/CFS can cause severe disability, it’s about how disabled the individual is. Or are they actually arguing that disability as a result of ME/CFS can’t be accepted for some reason?

I think it's a quite complex, but I don't think anything more complex beyond "these people can't be that sick" is happening.

I think in the first instance it's often an argument between doctors: The one doctor says "this" (your GP, company doctor or your specialist), whilst the insurance doctor says "that". What happens then? I think in cases of disagreement the case then first gets passed on to the next doctor, a different insurance doctor. I'm not sure of the statistics but I wouldn't be suprised if more often than not he's on the side of his colleague with whom he eats lunch everyday.

I guess you can then go to court next etc, but don't forget by the time you even make it there it's probably already been 5+ years, a time in which financial struggles and the whole process might have already outburdend you.

And who to believe if the next doctor just comes along and says: "No problem, this can be dealt with. All this person needs is a CBT rehabiilition program, they simply haven't tried enough" (which was the situation until very recently). I'm pretty sure that one can deny disability benefits if insufficient attemps have been made to get somebody working again.

 

[Utsikt]

I think it's a quite complex, but I don't think anything more complex beyond "these people can't be that sick" is happening.

I think in the first instance it's often an argument between doctors: The one doctor says "this" (your GP, company doctor or your specialist), whilst the insurance doctor says "that". What happens then? I think in cases of disagreement the case then first gets passed on to the next doctor, a different insurance doctor. I'm not sure of the statistics but I wouldn't be suprised if more often than not he's on the side of his colleague with whom he eats lunch everyday.

I guess you can then go to court next etc, but don't forget by the time you even make it there it's probably already been 5+ years, a time in which financial struggles and the whole process might have already outburdend you.

And who to believe if the next doctor just comes along and says: "No problem, this can be dealt with. All this person needs is a CBT rehabiilition program, they simply haven't tried enough" (which was the situation until very recently). I'm pretty sure that one can deny disability benefits if insufficient attemps have been made to get somebody working again.

That’s where the discrimination and legal precedents come in. Surely someone with moderate ME/CFS have had cases before these three?

I understand that the insurers would try to always deny claims and that they can find doctors that agree with them, but that’s why the courts are there - to overrule them when they step over the line.

 

[Turtle]

That’s where the discrimination and legal precedents come in. Surely someone with moderate ME/CFS have had cases before these three?

I understand that the insurers would try to always deny claims and that they can find doctors that agree with them, but that’s why the courts are there - to overrule them when they step over the line.

As a client of UWV I had to prove, objectively, why I could not perform like a healthy person.
That's really difficult with ME/CFS. Untill this courtcase no proof was good enough.
In my case UWV messed up so I would probably have won, but with courts you never know for sure. I already got my disability why go for a ruling of the court? They don't do medical stuff, just laws and regulations.

 

[Utsikt]

I already got my disability why go for a ruling of the court? They don't do medical stuff, just laws and regulations.

They do insurance disputes. You go to the courts if you don’t get your disability.

As a client of UWV I had to prove, objectively, why I could not perform like a healthy person.

How did you prove that?

 

[ME/CFS Skeptic]

Where does that leave the patients without abnormal CPET and tilt table results?

"Scientific methods like a CPET and tilt table test" as we all know carry little to no scientific validity in terms of quantifiying ME/CFS and even more so, there is no evidence to suggest that they quantify disability occuring in ME/CFS as that hasn't even been looked at in said studies.

I agree with these comments. There is a risk that this ruling will make things worse because it seems to overvalue the use-case of these tests. I reinforces the idea that you need to have objective abnormalities in order to be able to receive disability (which for some diseases is almost impossible).

If TTT or 2day CPET were a requirement for disability benefits, that would be a serious problem. Some won't get positive results on either, and some are too sick to do them, and the science isn't solid. But if the tests are used as an additional piece of evidence for some pwME, added to FUNCAP and other evidence of disability, I can see they could help show there's orthostatic or energy use problems for those individuals.

I hope it will be interpreted this way.

Some background to the story: all 3 patients went to Visser/Van Campen who did all these tests. The insurer UWV dismissed their reports so the court asked an independent expert to review the cases: Jos van der Meer.

Here are some quotes from what one of the court rulings said about van der Meer's report (translated from Dutch, my bolding)

Regarding the use of the SF36, in response to further questions from the Council, Van der Meer explained that it can be used to determine the physical and social functioning of those involved. This questionnaire is also widely used in research on ME/CFS and, according to Van der Meer, it shows that ME/CFS is associated with impaired functioning. In response to the Board's question as to whether control questions are used with the aforementioned questionnaires to avoid subjectivity - a question prompted by the insurance physician's comment that the use of the questionnaires involves the collection of subjective data - Van der Meer noted that he has had many discussions with insurance physicians over the past decades on the subjectivity and objectivity issue. ME/CFS is not unique in that “hard” objective markers are lacking. This also plays out in other conditions, such as pain syndromes, depression and more generally psychiatric disorders. Citing the ideas of emeritus Prof. Dr. J.H.B.M. Willems, Van der Meer considers criteria such as consistency and plausibility more useful. Symptoms such as fatigue, pain, nausea and the like can only be determined through self-reporting. In this sense, there is always a subjective interpretation, but this cannot be otherwise. The questionnaires used by Cardiozorg were not developed to determine work ability, but Van der Meer considers it plausible that the more problematic the scores on the CIS and the SF36 are, the more this will have a negative effect on work ability. However, this is not a one-to-one relationship.

Regarding PEM, Van der Meer explained that the American Institute of Medicine (IOM)1 has made PEM a mandatory criterion for the diagnosis of ME/CFS based on extensive literature review. The IOM also believes that PEM as a symptom has high specificity. In other words: PEM occurs almost exclusively in people with ME/CFS and, as recent research shows, in people with pulmonary COVID and other forms of post-infective fatigue. Citing scientific international publications, Van der Meer concludes that the two-day exercise test is a validated instrument and provides reliable and objective insight into limitations. In this regard, Van der Meer explicitly mentions the VO2max (oxygen uptake) which is impaired in the two-day exercise test and affects the functioning of an individual. Van der Meer knows of no studies in which the findings of the two-day exercise test are linked to work capacity. A poor result on this test does mean that a person does not function well and that complaints about PEM are serious. That this leads to reduced performance in work is very obvious, according to Van der Meer.

In his reports, Van der Meer discussed in detail OI in the form of POTS and/or orthostatic hypotension. These symptoms are not necessary for a diagnosis of ME/CFS, but are relatively common in this diagnosis, at just over half the cases, according to Cardiozorg. Although Van der Meer considers this percentage relatively high, he says this does not take away from the fact that OI can lead to symptoms such as dizziness, being lightheaded, palpitations, fainting and fatigue. When OI is objectively proven, Van der Meer says the complaints should be taken seriously and the question should be asked to what extent it limits a person in daily life and work. Van der Meer considers the tilt table test “state of the art” to objectify OI and much experience has been gained with this test in cardiology and vascular medicine. A Doppler ultrasound, performed in conjunction with the tilt table test, can be used to determine whether and to what extent there is reduced cerebral - that is, to/from the brain - blood flow and a possible lack of oxygen.

If a person is limited in his working memory due to the reduced blood supply to the brain, according to Van der Meer, an N-Back Test is suitable for determining cognitive limitations (if any). To the criticism of the insurance physician objection and appeal, that an N-Back Test is only used to investigate working memory and is not suitable to determine cognitive limitations, Van der Meer responded in his further report of February 28, 2025. According to Van der Meer, working memory plays an essential role and underlies virtually all higher cognitive functions, including task comprehension, problem solving, decision making, multitasking and also general learning skills. A reduction or interruption in blood supply affects the functionality of the brain resulting in cognitive processes not functioning optimally. An impairment in working memory will therefore negatively affect functioning in work, Van der Meer said.

Source: https://uitspraken.rechtspraak.nl/details?id=ECLI:NL:CRVB:2025:990

There are a lot of good points in the report: that ME/CFS is more disabling than the UWV physicians assumed, that PEM and OI are recognised symptoms that should be considered when assessing disability, etc. But Van der Meer does seem to overstate the value of 2-day CPET and tilt table testing.

What would probably help patients the most is a guidance for insurance physicians on how they should evaluate the disability of an ME/CFS patient, with a requirement to consider important symptoms such as PEM and OI and their impact on work capacity. It could also explain that lack of of objective tests or abnormality in ME/CFS doesn't imply that patients are not disabled and that there are other criteria (consistency in reports from doctors, school/work for example.) that can help to make the impairments plausible.

 

[Jonathan Edwards]

I agree that these tests should not contribute to insurance/disability assessments. We have very little idea what they mean. Introducing invalid tests into this context is only going to make matters worse in the long term.

 

[Turtle]

They do insurance disputes. You go to the courts if you don’t get your disability.

How did you prove that?

There was a 3-step procedure. First UWV, they stood by their own decision 20 hours a week. Then appeals court, that decided, in short, UWV had to do their homework again, in doing that they considered my objections again. An objective CPET-test with numbers does not allow talking up the numbers from 40% to 44%, because that was measured to be enough for a job as telephonist. Only one job offered was not enough, the law required 3, with each 10 realistic openenings available. The other 2 jobs were energetically out of the question (probably not VO2max measured).
Maybe there was more but these were the most important.

Not using CPET at all would have meant for me no disability and still working 20 hours that made me worse or accepting no work no income.