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Hi Butter, Interesting that you were tested for that. Was that as part of a study or something available to the public?

Hi Alinda, I am sorry that you had to undergo this treatment. Is is cruel for any ME patient, but especially for children/adolescents. Thank you for speaking out. I hope the media attention will lead to better treatment of ME patients, especially children and young adults. You speak of very...

A longer article in the Dutch newspaper De Telegraaf about a documentary maker, Jessica Villerius. She has longcovid and is undergoing a treatment that is not scientifically supported yet. Therefore she is not sharing what the treatment is. She is doing better now and has been able to resume...

I would not know. I am thinking what is happening in this age group in the Netherlands what is different from other countries. For instance different health policies, more infectious disease? I also wonder if this is the bias from the sample. I am not sure if many people are members of...

Well I added ‘ao disability’ and meant among others disability.

I found this post

That is peculiar. Thank you for asking. Do you have a link to the source? Or do you know where the Dutch figures where sourced from?

Yes Jos van der Meer is a known BPS supporter. Interesting that he supports this case.

Source: Dutch Steungroep Several patients with MEcfs who were denied disability benefits or disability benefits were halted, took legal action. Translation (it does not translate, seems a protected article, so this is a manual version) 28th of May 2025 An exiting day at the Central Council of...

I wish some journalist would delve into his shenanigans because something is shady with this man.

The bigger issue in my view is that the system is not very patient-centered and seems to encourage drs to be dismissive. Drs also seem to have little oversight so can do what they want and only very gross negligence seems to get repercussions. I do like the idea of giving reviews to drs by...

Translated reaction from the NVK (Dutch Association for Pediatrics)

Reactie van de NVK (Nederlandse Vereniging voor Kindergeneeskunde)

Second article by the NOS (public news network) Ouders kinderen met uitputtingsziekte MEcvs botsen met artsen over therapie. Dutch version https://nos.nl/l/2569354 Translation;’Parents of childeren with exhaustion disease MEcfs clash with drs over therapy’ English version...

Well I cannot really say because my health decline was very very slow. So it wasn’t full blown ME immediately. Edit; So I did not answer the poll

It seems like these drugs are promoted for a lot of health complaints. But do we know enough about long term safety? And even in the short term it seems these medications can cause harm.

Sympathetic article on Dutch public news site NOS. Therapy for children with exhaustion disease ME/cvs questioned. Dutch version https://nos.nl/artikel/2569260-therapie-voor-kinderen-met-uitputtingsziekte-me-cvs-in-twijfel-getrokken English version...

But still they are wasting resources on us, cbt we don’t need, physiotherapy we don’t need. These psychologists and physiotherapists could be used for the waiting lists for people who really need/want to be treated. The money freed up, could be used for ME research. (I know too simple)

Sadly yes, and my heart hurts for children that are treated this way. And also for the parents that are treated as if they are the abusers when they are trying to protect their child.

Sigh, is REGAIN long covid’s PACE? Millions always seems available for psychologising studies with questionable methodology. But for biomedical proposals the standards seem to be different. ‘The REGAIN study became the first randomised trial to show a benefit from rehabilitation for people with...