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Kamervragen v kamerlid Bikker vd Christenunie over MEcvs

The hypocrisy; patients have bias, so unreliable, while the research of these ‘bps’ researchers is a smorgasbord of bias :D.

Would the NICE guideline be helpful as well?

Thank you @Tao Fogger for so diligently reporting all this. The answers usually do not support a like, but your work is very much appreciated!

Thank you Adrian and everyone else who is making this happen!

I wish we could have a fact-check team that would confront his untruths.

These statements have the potential to really cause harm. Especially for the very severe who end up in hospital. Because of his eminence people will take him seriously. Severe patients in hospital could be confronted with healthcare workers who insist on opening curtains or remove blindfolds...

Yes it annoys me that governments seem to be willing to spend tens or hundreds of millions on AI and apps and other technologal innovations, but there is no money for true healthcare.

What kind of symptom with your gallbladder, do you have? I was told by a dr I had an issue with my gallbladder (because of nausea and vomiting). Don’t know if this was correct. I have heard about ME ptnts who had issues with their gallbladder. Do not know how common that is.

I posted this on the APPG thread as well. But this applies to disability benefits too. The Canary has an article on the disability cuts. Apparently two MP’s who sit on the APPG for ME are in favor of the disability cuts. https://www.thecanary.co/long-read/2025/04/01/dwp-cuts-me-cfs/ Have not...

The Canary has an article on the disability cuts. Apparently two MP’s who sit on the APPG for ME are in favor of the disability cuts. https://www.thecanary.co/long-read/2025/04/01/dwp-cuts-me-cfs/ Have not read it

Fatemeh Arastehnazar, Mohammad Hessam Rafiee, Mohammad Reza Deyhim, Faezeh Ghasemi, Amir Teimourpour Funding: This work was supported by Blood Transfusion Research Center, High Institute for Research and Education in Transfusion Medicine Iran ABSTRACT Background COVID-19 can affect...

Der Spiegel has a videopodcast about MEcfs, that tells the story of Mila an MEcfs patient. https://www.spiegel.de/thema/shortcut-videopodcast/ I have not listened to it myself.

If you do not mind me asking, you seem to have a vast knowledge of all these studies. How do you keep track and organize these studies? I struggle to keep track so was interested in how you do it.

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