By David Tuller, DrPH
Last week I wrote about the questionable decision by Dutch health funders to support a new research project from Professor Hans Knoop, a high-profile member of the CBT/GET ideological brigades. Although full details were not available, the project appeared to presume that post-Covid syndrome patients could benefit from cognitive restructuring designed to prevent them from sabotaging their own recovery.
On the other hand, the same agency also recently delivered some pretty good ME news. Simon McGrath described these developments in an August 5th post on his invaluable site, ME/CFS Research Review. Below is the first part.
The Netherlands is set to make a huge investment in biomedical research
A patient-led petition asked the Dutch parliament to tackle ME properly. It instructed the Government to take action, which eventually led to the Dutch health research agency recommending a ‚¬25m biomedical research programme. Patients are playing a central role in the process.
The Dutch national health research agency ZonMw is proposing spending around ‚¬25m (£23m, $29m) on exclusively biomedical research over the next ten years. The Dutch government looks set to accept the proposal, once the final version is submitted, probably early next year.
The Netherlands is a small country (population 17 million), making this a very substantial investment per head. Allowing for the much larger US population, it would be like the NIH committing $500m over ten years.
Patients have played a central role in making this happen and drawing up the plans,and will be an integral part of the new research programme.
It all began in 2011 with a petition started by ME patient and advocate Mirande de Rijke. The petition called on the Dutch parliament to really tackle ME, with several specific demands, including basing diagnosis on the International Consensus Criteria (ICC), and treating ME as a biomedical illness. Two years later she had 56,000 signatures, more than the 40,000 needed to trigger a serious response from Parliament.
Parliament’s response eventually led to a report from the Health Council of the Netherlands. That led in turn to the Minister of Health commissioning ZonMw, Netherland’s health research organisation, to develop a long-term, substantial ME/CFS research programme.
ZonMw’s work has been delayed by COVID-19, but it recently wrote to the Minister of Health with its outline proposal, which should be finalised and agreed by early next year.
The proposal is to spend ‚¬20€“29.5m on a ten-year biomedical ME/CFS programme.
Patients get a big say
Since Mirande de Rijke started the process, people with ME have continued to play an important role. They were on the Health Council report team and four patient representatives are working alongside four researchers on the ZonMw proposals. As well as helping to draw up the research agenda, people with ME will help set up and run the grant award system. And then they will have a key role in the research programme itself.
You can read the rest of Simon’s post here.
Lou Corsius tracks development in the Netherlands and elsewhere on his blog, It’s About ME. Last month, he posted about five seriously flawed studies from leading Dutch CBT/GET campaigners. Below is the first part.
Inconvenient CBT researches and outcomes that have been disappeared
In CBT/GET research regarding ME/cfs we find a considerable number of studies and outcomes that have been disappeared or reasoned away because they show the opposite of what the researchers want us to believe.
It appears that the academic world has no adequately functioning mechanism for self correction. These articles have been published in scientific journals one would think to be respectable. Despite the severe and well-elaborated criticism these journals have refused to withdraw the publication.
In this short inventarisation some of these researches are presented.
You will find studies or outcomes that have been buried underneath loads of silence or that have been delayed. You will also find studies the researchers bragged about that they were proof their therapy works and in the meantime they chose not to mention the outcomes that prove the opposite. The third kind is mentioning an outcome was opposite to what was expected and then go on polishing that inconvenience away in the discussion and conclusion section. The fourth approach is treating data on and on to obtain a satisfying outcome.
British and Dutch CBT/GET researchers have a longstanding tradition in this kind of scientific juggling.
In November 2017 Frank Twisk and I published an analysis of five Dutch hallmark studies into the efficacy of cognitive behaviour therapy with a graded activity protocol for chronic fatigue syndrome and Myalgic Encephalomyelitis.
These studies show severe shortcomings including inconvenient results that have been hidden.
You can read the rest here.