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Would it be possible to have a tiny fridge next to your bed where you put cooling packs in? Oh and I see there are mini freezers too However not a cheap option

I wish I had a fridge big enough to put my bed in. I was looking at the cooling mats for dogs and I am wondering how cool they get and if they are breathable.

English translation of the parliamentary questions of MP Julian Bushoff of Pvda/GL (Dutch labour and Green Left)

Nieuwe Kanervragen over MEcvs door Julian Boshoff van Pvda/GL

Does anyone know why the policy for children with mecfs in the Netherlands was not adjusted after the Gezondheidsraads 2018 report?

Translation: Parliamentary Questions by MP Bikker from the ChristenUnie on exhaustion disease MEcvs

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.