Arvo
Senior Member (Voting Rights)
Yes, he's patient representative in the NMCB (the Dutch ME/CFS Cohort and Biobank, the other consortium that does follow the ZonMw ME/CFS research plan).
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The Netherlands - €28.5 million ME/CFS research program - ZonMW funding awards announced April 2023
- Thread starter Andy
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Yes, he's patient representative in the NMCB (the Dutch ME/CFS Cohort and Biobank, the other consortium that does follow the ZonMw ME/CFS research plan).
Thank you. I hope we can get the project cancelled, will be dealing with the fallout for years to come if we don't imo.
Arvo
Senior Member (Voting Rights)
The Lifelines data for "ME/CFS" seem even worse than what they already are on paper.
@Grigor sent a tweet with a screenshot of a conversation between (I think) ME patients, who were participating in Lifelines. (15/5/23)
Person 1 says: "I'm a LifeLines participant from day 1. No one ever asked me about ME, CFS or even about something that looks like it. Even in the corona period, where we got a lot of questionnaires about corona and complaints in relation to corona, no one asked if complaints happened to exist for years already. How in heaven's name does Mrs Rosmalen want to get data from the databank then? New questionnaires?"
Person 2 replies: same here
The tweet this screenshot was posted with says:
"According to Lifelines participants a "diagnosis" wasn't even specifically asked after. Only symptoms are asked about and I think that they make the "diagnosis" on the basis of the answers. Sounds very, very vague..... I wonder if it will now go different at-ZonMW?"
This is in line with e.g. Rosmalen who says in her ZonMw interview: "We have also found people who were found to have ME/CFS but who had not yet been diagnosed."
And the current Lifelines wiki on "fatigue (CDC)" (first created in September 2020) that says:
"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."
PS: tweet link not provided as the personal information wasn't completely blacked out.
@Grigor sent a tweet with a screenshot of a conversation between (I think) ME patients, who were participating in Lifelines. (15/5/23)
Person 1 says: "I'm a LifeLines participant from day 1. No one ever asked me about ME, CFS or even about something that looks like it. Even in the corona period, where we got a lot of questionnaires about corona and complaints in relation to corona, no one asked if complaints happened to exist for years already. How in heaven's name does Mrs Rosmalen want to get data from the databank then? New questionnaires?"
Person 2 replies: same here
The tweet this screenshot was posted with says:
"According to Lifelines participants a "diagnosis" wasn't even specifically asked after. Only symptoms are asked about and I think that they make the "diagnosis" on the basis of the answers. Sounds very, very vague..... I wonder if it will now go different at-ZonMW?"
This is in line with e.g. Rosmalen who says in her ZonMw interview: "We have also found people who were found to have ME/CFS but who had not yet been diagnosed."
And the current Lifelines wiki on "fatigue (CDC)" (first created in September 2020) that says:
"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."
PS: tweet link not provided as the personal information wasn't completely blacked out.
Attachments
It's to be expected by Rosmalen, the more annoying thing is that ZonMw is going out of their way to fuck us. This sort of study wouldn't have come through with just a smattering of oversight from patients.
Arvo
Senior Member (Voting Rights)
Indeed. There's no way ZonMw can explain approving the grant to a project that violates the basic Program requirements so profoundly; it looks to me like they're going out of their way to avoid scrutiny of an indefensible decision.
Arvo
Senior Member (Voting Rights)
I fear the same.
Someone who is a expert on this area motioned that the LifeLines cohort could actually be used to derive an accurate estimate of
prevalence. Think Leonard Jason (DePaul University) used a similar methodology i.e. sample the whole population and then look at those who report disabling fatigue in more detail i.e. to establish whether they have/do not have ME/CFS. So the current LifeLines cohort could be used constructively i.e. to estimate prevalence of ME/CFS - something for the patient community to lobby for.
Note - the LifeLines cohort currently estimates ME/CFS prevalence at 1.x (?) while generally accepted prevalence is around 0.4(?) - so the current LifeLines cohort overestimates prevalence by a factor of 3X(?) & is therefore unsuitable.
prevalence. Think Leonard Jason (DePaul University) used a similar methodology i.e. sample the whole population and then look at those who report disabling fatigue in more detail i.e. to establish whether they have/do not have ME/CFS. So the current LifeLines cohort could be used constructively i.e. to estimate prevalence of ME/CFS - something for the patient community to lobby for.
Note - the LifeLines cohort currently estimates ME/CFS prevalence at 1.x (?) while generally accepted prevalence is around 0.4(?) - so the current LifeLines cohort overestimates prevalence by a factor of 3X(?) & is therefore unsuitable.
Seems - Boer's [Twitter] offer "I do not mind walking you though details of my project*" isn't being delivered. I asked questions here** - no reply. I suggest more folks pile in with questions --- e.g. prevalence from "Lifelines" is 3X generally accepted rates - will the project refine this cohort so that it accurately reflects prevalence of ME? Data from a cohort which is 3X different from other GWAS cohorts [DecodeME] can't be combined.
Suggested response - "You're "[working] together with DecodeME ---" data from a cohort which is 3X different from other GWAS cohorts [DecodeME] can't be combined."
I've replied to Boer's Tweet -
"I do not mind --- details of - project -Prevalence from "Lifelines" is 3X generally accepted rates - will the project refine this cohort so that it accurately reflects prevalence of ME? Data from a cohort which is 3X different from other GWAS cohorts [DecodeME] can't be combined"
*"Hey Siebe, That would be my project
. If you want, I do not mind walking you though details of my project - For example, I will work together with DecodeME, - or answering questions about it. send me a message.
**
Suggested response - "You're "[working] together with DecodeME ---" data from a cohort which is 3X different from other GWAS cohorts [DecodeME] can't be combined."
I've replied to Boer's Tweet -
"I do not mind --- details of - project -Prevalence from "Lifelines" is 3X generally accepted rates - will the project refine this cohort so that it accurately reflects prevalence of ME? Data from a cohort which is 3X different from other GWAS cohorts [DecodeME] can't be combined"
*"Hey Siebe, That would be my project
. If you want, I do not mind walking you though details of my project - For example, I will work together with DecodeME, - or answering questions about it. send me a message.**
Andy
Retired committee member
From ME/CVS Vereniging,
"Update 5/23/23:
ZonMw has now informed us that our WOO [freedom of information] request is extensive and that more time is needed. ZonMw will use an external law firm to consult with the ME/CFS Association about prioritizing the handling of our request. To be continued!"
https://me-cvsvereniging.nl/nieuws/persbericht-wet-open-overheid-woo/
"Update 5/23/23:
ZonMw has now informed us that our WOO [freedom of information] request is extensive and that more time is needed. ZonMw will use an external law firm to consult with the ME/CFS Association about prioritizing the handling of our request. To be continued!"
https://me-cvsvereniging.nl/nieuws/persbericht-wet-open-overheid-woo/
Oh yes, more money to be spent but now on legal aid. Very PACEy.
rvallee
Senior Member (Voting Rights)
That's how you just know you're doing good medicine and real science, when patients are forced to take the legal route. Again.
And the worst part is that many of the people involved genuinely believe that. They have to, or the version of events they invented to justify their actions crumble into immoral dust. For them to be doing good while opposing us must mean that we are bad, and they seem infinitely capable of believing it. No matter how many lives they destroy, their ends justify the means.
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When you’ve mentioned previously and rightly the HIV/AIDS research model of “nothing about us without us” how much did doing it the right way actually cost vs money wasted (in ME/CFS) on bad research, bad kingdoms and embedded therapies across all sorts of areas over/multiplied by how many years?
Ie how much waste did that proper patient input save and how much did it speed things up by preventing avoidable dead-ends?
Has it or involvement like it ever been repeated in other conditions and is it only this subject area that decides it is problematic then not just doing what they want vs other scientific research? Ie is it nothing to do with the illness, or the patients in question but they just are props for this being an unusual bunch in an unusual subject area that sees itself above/beneath the norms - because I think that’s what it is and who/what this is all about and I wish laypersons would see the real source of the problem and stop falling for their distractions.
That's the reaction I got yesterday from our ministry of Health. Am mulling a reply, have also mailed it through to the ME/CVS vereniging and ME Centraal to ask them what they think. I'll translate it later, afternoon nap comes first. If anyone else feels compelled to translate it they're offcourse welcome to.
I don't know if anyone needs tagging that should read this so I'll hold on that.
Arvo
Senior Member (Voting Rights)
Ugh, that letter is bad.
I'm toast for the day, but err
Nopety nope
Yeah, see, that's the problem. ME patients objecting to giving professor Maladaptive Response To Physical Complaints a shit ton of money earmarked for solid biomedical research into ME, to expand her psychosomatic agenda (and unjustified claim on ME patients) based on a project that breaks the requirements of the ME/CFS Research Programme in full technicolor is of course about ME patients' lack of faith in science, refusal to take in new insights, closedmindedness and inability to change their minds. Rosmalen's project is fiiine. And we're doing this FOR YOU.
I'm reminded of Lance Armstrong's famous speech to people who suspected him of doping: "the people who don't believe in cycling, the cynics, the sceptics; [I feel] sorry for you. You need to believe in these riders. I'm sorry you can't dream big and I'm sorry you don't believe in miracles".
(But my initial response was: "We don't need to be open-minded Brennan, you're holding a turd." So for your entertainment, it's from a favourite sketch about the far right's attempts to normalise unacceptable views.)
I'm toast for the day, but err
ZonMw said:
Nopety nope
ZonMw also said:
Yeah, see, that's the problem. ME patients objecting to giving professor Maladaptive Response To Physical Complaints a shit ton of money earmarked for solid biomedical research into ME, to expand her psychosomatic agenda (and unjustified claim on ME patients) based on a project that breaks the requirements of the ME/CFS Research Programme in full technicolor is of course about ME patients' lack of faith in science, refusal to take in new insights, closedmindedness and inability to change their minds. Rosmalen's project is fiiine. And we're doing this FOR YOU.
I'm reminded of Lance Armstrong's famous speech to people who suspected him of doping: "the people who don't believe in cycling, the cynics, the sceptics; [I feel] sorry for you. You need to believe in these riders. I'm sorry you can't dream big and I'm sorry you don't believe in miracles".
(But my initial response was: "We don't need to be open-minded Brennan, you're holding a turd." So for your entertainment, it's from a favourite sketch about the far right's attempts to normalise unacceptable views.)
Dear Mr Solstice,
Over the past few days, ZonMw has received many responses to the announcement of the starting ME/CFS consortia and research projects. It concerns both substantive questions and positive and negative reactions. The negative reactions mainly concern the choice of the ME/CFS Lines consortium, which is led by Prof. Dr. Rosmalen, and the decision-making procedure.
We understand the anxiety and emotion experienced by patients and their loved ones given the long and sometimes turbulent journey that has preceded the start of this new research program.
The 10-year research program aims to generate much new biomedical knowledge about the causes, diagnosis and treatment of ME/CFS. A committee of substantive experts has reached a careful decision-making process. In this it was partly fed by the advice of a sounding board group, consisting of patient (representatives) delegated from patient organisations. All assigned projects and consortia meet the conditions of the call for proposals and the programme.
The Ministry of Health, Welfare and Sport supervised the careful progress of this process, with the independent scientific committee preparing the decision-making by the ZonMw board. The sounding board group has made a valued and positive contribution to this process. With the construction that has been chosen, both the scientific assessment of the proposals and the contribution of patient perspectives by the various patient representatives are guaranteed. ZonMw thus ensured that the assessors were well aware of the multifaceted interests of the patients for whom this study is intended.
We have faith in science, which means that you take new insights with you and are open to them and, if there is reason to do so, can change your mind. As ZonMw and the Ministry of Health, Welfare and Sport, we therefore express our full confidence in the researchers who will work within the ME/CFS Research Program to learn more about the causes, diagnosis and treatment of ME/CFS.
We are working on a Q&A based on frequently asked questions in response to our news item. This will appear on the ZonMw website as soon as possible. For substantive questions about the consortia and sub-projects, we would like to refer you to the UMCG (ME/CFS Lines) and the AMC (NMCB).
Yours sincerely,
The Secretariat of Public Health
Over the past few days, ZonMw has received many responses to the announcement of the starting ME/CFS consortia and research projects. It concerns both substantive questions and positive and negative reactions. The negative reactions mainly concern the choice of the ME/CFS Lines consortium, which is led by Prof. Dr. Rosmalen, and the decision-making procedure.
We understand the anxiety and emotion experienced by patients and their loved ones given the long and sometimes turbulent journey that has preceded the start of this new research program.
The 10-year research program aims to generate much new biomedical knowledge about the causes, diagnosis and treatment of ME/CFS. A committee of substantive experts has reached a careful decision-making process. In this it was partly fed by the advice of a sounding board group, consisting of patient (representatives) delegated from patient organisations. All assigned projects and consortia meet the conditions of the call for proposals and the programme.
The Ministry of Health, Welfare and Sport supervised the careful progress of this process, with the independent scientific committee preparing the decision-making by the ZonMw board. The sounding board group has made a valued and positive contribution to this process. With the construction that has been chosen, both the scientific assessment of the proposals and the contribution of patient perspectives by the various patient representatives are guaranteed. ZonMw thus ensured that the assessors were well aware of the multifaceted interests of the patients for whom this study is intended.
We have faith in science, which means that you take new insights with you and are open to them and, if there is reason to do so, can change your mind. As ZonMw and the Ministry of Health, Welfare and Sport, we therefore express our full confidence in the researchers who will work within the ME/CFS Research Program to learn more about the causes, diagnosis and treatment of ME/CFS.
We are working on a Q&A based on frequently asked questions in response to our news item. This will appear on the ZonMw website as soon as possible. For substantive questions about the consortia and sub-projects, we would like to refer you to the UMCG (ME/CFS Lines) and the AMC (NMCB).
Yours sincerely,
The Secretariat of Public Health
Thanks Trish. It isn't even a non-answer this time but just straight-up lies. Patient representatives have been sidelined and the project didn't meet requirements.
ME Centraal directed me towards their website where it said this:
I've left out the bit in the middle about a petition for insurers to pay for treatments for ME patients. Source: https://mecentraal.wordpress.com/2023/05/26/ons-vws-en-zonmw/
ME Centraal directed me towards their website where it said this:
I've left out the bit in the middle about a petition for insurers to pay for treatments for ME patients. Source: https://mecentraal.wordpress.com/2023/05/26/ons-vws-en-zonmw/
I think the last paragraph of the ME Centraal letter is an excellent description of the feeling of a lot of people at the moment. We've fought too long to get to a point where good things are happening for us to now let it be overturned again. Not letting this slide.
rvallee
Senior Member (Voting Rights)
That letter could have been simply the words: "we don't care, we can do what we want and there's nothing you can do about it".
To talk of being open-minded while being stuck in an infinite loop of failure is something. They keep pushing pseudoscience on this, and speak of faith in science. Well, science isn't about faith, and these people are completely derelict in their duties and beyond unethical.
They basically set the conditions so that patients can never trust anything they do, which they will no doubt simply use to continue doing as they want. This is frankly way more Art of war than about a medical textbook.
To talk of being open-minded while being stuck in an infinite loop of failure is something. They keep pushing pseudoscience on this, and speak of faith in science. Well, science isn't about faith, and these people are completely derelict in their duties and beyond unethical.
They basically set the conditions so that patients can never trust anything they do, which they will no doubt simply use to continue doing as they want. This is frankly way more Art of war than about a medical textbook.
Arvo
Senior Member (Voting Rights)
Looking up some stuff. ZonMw removed this, while making no mention of edited/altered text.
Edited to add links to the posts by Solstice and me this refers to, where ZonMw said in a FAQ in the article "Verklaring ZonMw op reacties toekenningen ME/CVS-programma" (=ZonMw statement on responses to ME/CFS program awards) of May the 4th:
ZonMw on the 4th of May said:
which I see today has been removed from the article.
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