The Netherlands - €28.5 million ME/CFS research program - ZonMW funding awards announced April 2023

How to hijack the whole notion of biomedical and pervert it to whatever ends suits one's desires.

All they are going to do is look for superficial, highly selective subjective correlates, and make sure none of it properly tests for causation, and claim that proves the psychosomatic interpretation is correct.
 
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Sean said:
How to hijack the whole notion of biomedical and pervert it to whatever ends suits one's desires.

All they are going to do is look for superficial, highly selective subjective correlates, and make sure none of it properly tests for causation, and claim that proves the psychosomatic interpretation is correct.
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That's the fear. And it is a very legitimate fear. If they axed Rosmalen now I'd gain a bit of confidence but the whole project seems to have been set up to fail what we as patients wanted. Proper research.
 
Sean said:
How to hijack the whole notion of biomedical and pervert it to whatever ends suits one's desires.

All they are going to do is look for superficial, highly selective subjective correlates, and make sure none of it properly tests for causation, and claim that proves the psychosomatic interpretation is correct.
Click to expand...
David Tuller wrote about these Dutch research funding awards in his last two publications. I quote from one of his articles:

"Last July, ZonMw posted an update about an 'adjustment' to the process of evaluating proposals. According to the update, key patient representatives would not participate in decision-making about funding recipients because of their perceived conflicts of interest."

Conflicts of interest!! I'm truly stunned by that statement. Of course, patients have a HUGE self-interest in this process, and they should have, and that should be respected. It is they we are talking about. It is they whose lives are on the line. It is they who have first-hand knowledge of this disease. It is they who are (or should be) at the center of this research, not the researchers themselves. In my opinion, it is certain researchers who have the huge conflicts of interest here which they then project unto the patients who are merely speaking truth to power and fighting for their very lives. It is certain researchers trying to hold on to their territory who have the conflicts of interest.

To me, the above quote epitomizes the huge power imbalance between these researchers and very knowledgeable patients who must be kept in their place. The researchers' ideas about this disease must come out on top, no matter how many years of lived patient experience contradict those ideas. That quoted statement to me smacks of a power play having taken place. Perhaps I am wrong, but right now, that is how it seems to me.
 
Willow said:
David Tuller wrote about these Dutch research funding awards in his last two publications. I quote from one of his articles:

"Last July, ZonMw posted an update about an 'adjustment' to the process of evaluating proposals. According to the update, key patient representatives would not participate in decision-making about funding recipients because of their perceived conflicts of interest."

Conflicts of interest!! I'm truly stunned by that statement. Of course, patients have a HUGE self-interest in this process, and they should have, and that should be respected. It is they we are talking about. It is they whose lives are on the line. It is they who have first-hand knowledge of this disease. It is they who are (or should be) at the center of this research, not the researchers themselves. In my opinion, it is certain researchers who have the huge conflicts of interest here which they then project unto the patients who are merely speaking truth to power and fighting for their very lives. It is certain researchers trying to hold on to their territory who have the conflicts of interest.

To me, the above quote epitomizes the huge power imbalance between these researchers and very knowledgeable patients who must be kept in their place. The researchers' ideas about this disease must come out on top, no matter how many years of lived patient experience contradict those ideas. That quoted statement to me smacks of a power play having taken place. Perhaps I am wrong, but right now, that is how it seems to me.
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yep it’s a weird delusional claim that has been pushed by the psychosomatic school to persuade bystanders they aren’t the ones who have self-interest but it’s those who might disagree with them who are biased.

god knows how bad a bystander you have to be to try and pretend you are persuaded of that one and therefore quite unable to think properly.

conglict of interest is when you make a lot of money out if a result.

Being interested in the research being done well because you are a patient who is suffering due to poor research influencing treatment bring bad or non-existent isn’t ‘bias’
 
Willow said:
Conflicts of interest!! I'm truly stunned by that statement. Of course, patients have a HUGE self-interest in this process
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Correct. The double standard is appalling.

Patients have a vested interest. Those who have committed their careers, reputations, status, empires, incomes, etc, to the psychosomatic interpretation have a conflict of interest.

The one thing the BPS school cannot be described as at this point is neutral objective players, with no agenda. They stand to lose everything if it turns out this is physical disease, and their incompetence, recklessness, and worse, gets exposed to the world. If that is not the most powerful conflict of interest and disincentive to finding out and reporting the truth, then what the hell is?

The foxes are being handed the keys to the hen house. In public, by formal governance processes. It is insane. Or deliberate.

They are not being asked to submit to anything that the rest of science isn't. They are the ones demanding they are a special case, with the right to special exemptions from methodological rigour, but also the right to have their 'findings' given equal epistemological status with results from rigorous studies, with all the power and glory that comes from that.

What is most disturbing about it is just how obvious and brazen it all is. The BPS club is basically saying that they recognise no legitimate constraints upon their claim and methods, and will simply ignore, subvert, and just plain bulldoze their way through any legitimate attempts to impose them.

They know exactly what they are doing.
 
InitialConditions said:
Have details about the funded projects not yet been released? Because I can't see them.
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You mean beyond the basics?

I put the ZonMw message in Google Translate, from there you can click through english descriptions of the studies getting grants:

Eerste biomedisch onderzoek naar ME/CVS van start | ZonMw (www-zonmw-nl.translate.goog)

There are two consortia getting funds, and each lists the studies.
e.g.: Adaptations in skeletal muscle and blood during post-exertional malaise in patients with ME/CFS | ZonMw Projects (projecten-zonmw-nl.translate.goog)
 
And to summarize (correct me if I'm wrong @Grigor and @Solstice ) this is the main line of the situation:

Two consortiums got awarded grants from the first round of Dutch Biomedical Research for ME/CFS funding .

Consortium B (NMCB) contains 6 research projects which will pull their participants from an ME/CFS biobank that AFAIK has used good research criteria for ME/CFS, so the participant pool is acceptable. It has also trusted patient representatives collaborating like Lou Corsius. I don't know much about them, but in basics it seems ok.

Consortium A (ME/CFS Lines) contains 4 research projects which will pull their participants from the Lifelines databank. They will collaborate with patient representatives from the ME/CVS Stichting only (who will be paid -I'm personally on the fence about that), an ME organisation that doesn't have a good track record in being informed, critical and a good patients advocate. There are two main issues with this consortium:

  • This project specifically and the Lifelines biobank are is headed by Judith Rosmalen, a motor behind treating ME/CFS as psychosomatic/MUS/functional disorder. [Added:] And she also seems to have been the one advising on the Lifelines-used criteria for collecting CFS data.
  • There are major questions about the reliability of patient selection from Lifelines. See for example Andy's post here. It seems like they have used more relaxed criteria for prolongued fatigue (CDC94?)* without additional "must have" cardinal features like PEM and cognitive impairment, an added patients that were not diagnosed by a physician, and the chance that their "ME/CFS" patient population is a mixed bag of stuff is considerate. (Personally I would be surprised if Rosmalen has kept a database on strict ME/CFS research criteria given her work.)
Important patient organisations like the ME/CVS Vereniging were not involved in preparing for this grant application and they weren't given enough information (though requested) to assess it - the ME/CVS Vereniging is currently running a FOI request to understand how and on which grounds exactly this grant was awarded.

The situation gets even more complicated as Rosmalen's ME/CFS Lines databank apparently doesn't hold data for severe patients and will borrow severe patients from the other consortium NMCB for their studies - which causes unrest as well-informed patients don't want their body to be used for research led by Rosmalen. (Plus of course patients are livid at ZonMw for giving millions of the money to a leading figure in the bps movement, so they can lose trust in the whole thing.)


I feel a bit bad for the researchers attached to Lifelines, but on the other hand, if it's true that a "fatigue"/CDC94" patient pool is used, then I have some doubts about how well-informed the researcher is - why risk having all your hard work dismissed for bad participant selection?


*Edited to add: Yes, there are major, major issues with the patient selection for the ME/CFS Lines consortium: self-report, Fukuda, a bps questionnaire and questions on general fatigue.

Edited to rectify that Rosmalen does not lead Lifelines, she is a scientific advisor for it.
 
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Rosmalen on her patient selection (see link above):

"'For almost ten years now, criteria for diagnosing ME/CFS have also been included in the Lifelines data collection,' says Rosmalen. 'So we have a lot of biomedical data and biomaterials from patients with ME/CFS. We have also found people who were found to have ME/CFS but who had not yet been diagnosed."
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But which criteria?
And if Lifelines has found "people who were found to have ME/CFS but who had not yet been diagnosed" how did that work exactly? Based on "biomedical and biomaterials from [other] patients with ME/CFS"? Or did people who enrolled say they were fatigued and did Lifelines then give them a diagnosis? (And again, based on what criteria?)


(Also I saw someone on twitter fume that they apparently have been collecting data on ME/CFS patients for nearly 10 years without making use of it and now that there's a big bag of money for biomedical research they want in - I don't know if they never made use of it, but if so then I get that anger.)
 
ME centraal article:

Who is Judith Rosmalen? (mecentraal-wordpress-com.translate.goog)

"
Ms. Rosmalen – as you are well aware – still calls ME CFS, and so firmly asserts here that ME/CFS is not a medical disorder. You spend € 4.4 million on that, which has in fact been collected with blood, sweat and tears and even deaths from the patient population through a citizens' initiative.

And then you claim that the patients determine the research program. Which patients, we wonder.”


(Dutch original: Wie is Judith Rosmalen? (wordpress.com))
 
Yeah, this is not good. Lifelines has a wiki (the main page refers to it itself).

Here's the stuff on CFS:

Fatigue (CDC)
The Centers for Disease Control and Prevention (CDC) symptom inventory for chronic fatigue syndrome (CFS or ME) is aimed to assess whether a person meets the CDC diagnostic criteria for (CFS)1) (section: diseases & symptoms).
Note that Lifelines also assesses (chronic) fatigue using the CIS and PROMIS instruments plus some general questions. An CFS diagnostic score according to the CDC has been developed and is available for use.

Background
Lifelines repeatedly assessed the presence of CFS/ME by self-report. However, recent studies indicate that this method misses ~90% of the CFS diagnoses2). The CDC symptom survey improves the identification of participants that meet the diagnostic criteria for CFS/ME by assessing the presence of individual symptoms rather than the disease itself.

The CDC symptom survey was developed in English and translated in Dutch 3).
The CDC symptom survey as used in Lifelines assesses 8 symptoms that are part of the diagnostic criteria for CSF, plus a question regarding depressive feelings in the last 6 months to increase the diagnostic value.
To assess fatigue, the core symptom of CFS, an additional question was asked in conjuction to the CDC (see here).

Validation
The validation of the CDC symptom survey is described here4)
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fatigue_cdc [Lifelines Wiki]
(page last modified 30/11/2021, old revisions first version 29-09-2020.)

Researchers from the University Medical Center Groningen developed the Chronic Fatigue Syndrome (CFS) diagnostic score for adult participants using the Fatigue (CDC) variables from 2A Questionnaire 2 and 3A Questionnaire 1. (sections: Diseases & symptoms (Fatigue (CDC)) and secondary & linked variables).

The CFS diagnostic score can be requested in the Lifelines catalogue or by mail (data@lifelines.nl).


Calculation of CFS diagnostic score
To identify participants with a positive Chronic Fatigue Syndrome (CFS) diagnostic score, the 1994 Centers for Disease Control and Prevention (CDC) criteria are taken into consideration. More specifically, participants have to meet three specific criteria in order to receive the CFS diagnosic score. In other words, if all criteria are met the participant receives a positive diagnostic score and when at least one of the criteria is zero the participant receives a negative CFS diagnostic score. If all three criteria are missing, the CFS diagnostic score is also missing. Below the three criteria are highlighted including details on the included statements in the calculation.
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cfs_diagnostic_score [Lifelines Wiki]
(page last modified 22-12-2021, old revisions first version 30-11-2021)

Lifelines participants were asked the following questions about their experiences with fatigue (section: Diseases & symptoms).
Note that fatigue is also assessed within Lifelines using the PROMIS and CIS instruments.
Chronic fatigue syndrome is assessed using the CDC instrument. The FATIGUE1-3 variables were formulated as an addition to the CDC.
Click to expand...

fatigue_general [Lifelines Wiki]
(last modified 8-3-2023 - very recently, old revisions first version 18-07-2019, which said "Participants were asked the following questions about their feelings of fatigue. Note that fatigue is also assessed within Lifelines using the PROMIS instrument. Chronic fatigue syndrom [sic] is assessed using the CDC instrument." The link to that CDC instrument stays dead until the version of 29-09-2020, see above)

Secondary & linked variables
This section contains two types of data:

  1. Secondary variables, i.e. variables derived (typically by coding or calculation) from primary variables collected directly from Lifelines participants.
  2. Linked variables, i.e. that were not collected by Lifelines but are obtained from another data source and linked to Lifelines participants (typically via postal codes).
The following secondary variables are available:

Click to expand...
secondary_linked_variables [Lifelines Wiki]
(last modified 30-1-2023, old revisions first version 08-09-2021: CFS is not a part of this list then, it is "to be added in the future" and gets added 30-11-2021)

Fatigue (CIS)
The Checklist Individual Strength (CIS) is a 20-item fatigue questionnaire developed in Dutch 1) (section: diseases & symptoms). The questionnaire has been translated into multiple languages and is used to set diagnostic criteria for various illnesses, including chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS).
Note that (chronic) fatigue is also assessed in Lifelines using the CDC and the PROMIS questionnaires, and some general questions.

Scoring
De CIS consists of 20 statements on fatigue-related problems respondents might have experienced in the past 2 weeks. A Likert scoring scheme is used: with each statement respondents have to give a score between 1 and 7, indicating how much the statement applies to them.

A factor analysis indicated 4 components in the 20 questions:

  • Subjective fatigue (8 items)
  • Concentration (5 items)
  • Motivation (4 items)
  • Physical activity (3 items)
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That checklist is referenced at the bottom, it's
Vercoulen et al. (1994). Dimensional assessment of chronic fatigue syndrome. Journal of Psychosomatic Research 38(5): 383-392

fatigue_cis [Lifelines Wiki]
(page last modified 8-3-2023 - again very recently, old revisions first version 07-10-2019)


This last quote also contains the only hit for the search "myalgic" in the whole wiki, ME is not part of Lifelines.



Edited to add data of first versions.
 
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So, in summary, at best the "ME/CFS" patients from Lifelines are selected by a bps questionnaire from 1994 (Vercoulen et al), the 1994 Fukuda criteria (überproblematic in their creation and no PEM needed) and some general questions on fatigue, but for a long time they just relied on self report. And they do not look for ME/CFS, but CFS.

I would not have expected anything more from Sharpe's second in command, but what the hell ZonMw.
 
Bwahaa, holy shit, the reference for this weird statement:

Lifelines repeatedly assessed the presence of CFS/ME by self-report. However, recent studies indicate that this method misses ~90% of the CFS diagnoses2).
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is Warren JW, Clauw DJ (2012). Functional somatic syndromes: sensitivities and specificities of self-reports of physician diagnosis. Psychosomatic Medicine 74(9):891-895


This is not subtle.


I'm going to make a cup of tea, as I don't want to spam this page with my ongoing jawdrop.
 
Arvo said:
Bwahaa, holy shit, the reference for this weird statement:



is Warren JW, Clauw DJ (2012). Functional somatic syndromes: sensitivities and specificities of self-reports of physician diagnosis. Psychosomatic Medicine 74(9):891-895


This is not subtle.


I'm going to make a cup of tea, as I don't want to spam this page with my ongoing jawdrop.
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If you've got the energy to keep going, by all means... I've tried to dive into it but I lack the energy for it. It's important that people from around the world can see the scope of the problems and you're doing a hell of a job of it. Fully agree with the posts you've made here.

It's also all too familiar. ME/CVS Stichting = AfME before they turned decent. Putting Rosmalen as lead is what happened with Crawley. Using useless criteria is something people in the UK and globally are all too familiar with too.

There are 2 main reasons there's no trust whatsoever in this project.
1. The leading scientist, which you might fix by replacing her with someone that actually knows what he/she's doing.
2. Selection criteria which I don't think you can retro-actively fix. This is a longitudinal study where from the outset the wrong criteria have been used so the entire project is useless in finding out why people develop ME. It's 4.4 million down the drain, unless it's stopped. All the more egregious as there are many good researchers and projects around the world that are begging to get funded.
 
Hard to avoid the suspicion that no matter what the evidence is from the study, Rosmalen is somehow going to twist it into a functional narrative, with causation assigned according to doctrine not evidence based logic.

Time for a patient strike?

We have the right to say no to being experimented on for no good purpose, to refuse to participate in sub-standard research run by somebody with a clear agenda.

Might be time to start openly asserting that right.
 
Grigor said:
I'm not sure what you mean by that? We only know what was mentioned here in the thread.
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People are debating who this person is, but I can't actually see what the proposed/funded projects are (unless I've missed them). What has Rosmalen been funded to *do*?
 
Arvo said:
And to summarize (correct me if I'm wrong @Grigor and @Solstice ) this is the main line of the situation:

Two consortiums got awarded grants from the first round of Dutch Biomedical Research for ME/CFS funding .

Consortium B (NMCB) contains 6 research projects which will pull their participants from an ME/CFS biobank that AFAIK has used good research criteria for ME/CFS, so the participant pool is acceptable. It has also trusted patient representatives collaborating like Lou Corsius. I don't know much about them, but in basics it seems ok.

Consortium A (ME/CFS Lines) contains 4 research projects which will pull their participants from the Lifelines databank. They will collaborate with patient representatives from the ME/CVS Stichting only (who will be paid -I'm personally on the fence about that), an ME organisation that doesn't have a good track record in being informed, critical and a good patients advocate. There are two main issues with this consortium:

  • This project specifically and the Lifelines biobank are headed by Judith Rosmalen, a motor behind treating ME/CFS as psychosomatic/MUS/functional disorder
  • There are major questions about the reliability of patient selection from Lifelines. See for example Andy's post here. It seems like they have used more relaxed criteria for prolongued fatigue (CDC94?)* without additional "must have" cardinal features like PEM and cognitive impairment, an added patients that were not diagnosed by a physician, and the chance that their "ME/CFS" patient population is a mixed bag of stuff is considerate. (Personally I would be surprised if Rosmalen has kept a database on strict ME/CFS research criteria given her work.)
Important patient organisations like the ME/CVS Vereniging were not involved in preparing for this grant application and they weren't given enough information (though requested) to assess it - the ME/CVS Vereniging is currently running a FOI request to understand how and on which grounds exactly this grant was awarded.

The situation gets even more complicated as Rosmalen's ME/CFS Lines databank apparently doesn't hold data for severe patients and will borrow severe patients from the other consortium NMCB for their studies - which causes unrest as well-informed patients don't want their body to be used for research led by Rosmalen. (Plus of course patients are livid at ZonMw for giving millions of the money to a leading figure in the bps movement, so they can lose trust in the whole thing.)


I feel a bit bad for the researchers attached to Lifelines, but on the other hand, if it's true that a "fatigue"/CDC94" patient pool is used, then I have some doubts about how well-informed the researcher is - why risk having all your hard work dismissed for bad participant selection?


*Edited to add: Yes, there are major, major issues with the patient selection for the ME/CFS Lines consortium: self-report, Fukuda, a bps questionnaire and questions on general fatigue.
Click to expand...

Ok, thanks. So she is involved with the proposed biobank.
 
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