Search results

This is questionnaire pseudoresearch at its worst. It’s pure propaganda. The Norwegian government is paying for this by funding the «researcher’s» salaries.

There are two redactions in a version of JE’s testimony that I downloaded from somewhere May 2025.

There is no doubt whatsoever that he is using the threat of lawsuits in an attempt to silence critics. That is just a matter of fact. If the lawsuit is baseless depends on what was written by the author, but defamation requires that the statements are untrue and we know there is a lot to pick...

It’s the same «it’s good for the economy» meme, ignoring that the 12 people with the most money own more than the 4 billion with the least, so it’s primarily good for the wealthy.

I think they will find that this is completely inappropriate for the more severely affected. What is that supposed to mean? They say they will go through their health records, that sounds awfully invasive and very prone to bias towards psychologisation. How have they managed to not include...

Wasn’t there a recent court case from the Netherlands where it was used? I might have gotten the country wrong.

That’s why you need trials with large enough groups. Those kind of events would be randomly distributed and shouldn’t affect the final result on average.

Update on funding from the funding thread: 3.5 MNOK (£300k, $400k) is missing as of 16th Jan 2026. Update on recruitment (same source): 25 % started treatment 25 % waiting to start treatment 50 % not recruited yet (but applications are still being assessed). Speculation by me: If recruitment...

That’s great news! And very helpful information.

This government page says that peer reviewed acadmic publishing is protected in the defamation act of 2013. https://www.gov.uk/government/news/defamation-laws-take-effect

Thank you for sharing. I still don’t understand how many were EDS proper. This doesn’t say how many were in each, but they label «hypermobile» as a genetic one: This shows that 35 were «hypermobile»: But only 25 did genetic testing, so many of those would have to be based on the 1997...

Where have we seen that before..? I hope they give a prompt and public response where they explain why. I also hope that any adjustments made in this period will be documented.

Wow, I googled it and found one news article saying that cost in UK might be 100 times higher than elsewhere in Europe. Please excuse my ignorance then! Although that means that it would be equally expensive for Wessely, and I can’t find any mention of him actually going through with one.

I’m severe and experience that it takes a lot of time (weeks) to get used to different kinds of strain on my body. I doesn’t enable me to do more in total, so the adjustment period lowers my effective capacity.

I agree! Not based on your first source, that contributed to the confusion by giving an inaccurate representation of the old criteria.

I agree that it’s messy. The book says the following: If it’s autosomal dominant, each child will have a 50 % chance of inheriting the condition from the carrying parent. The 2017 criteria does not require a family history for hEDS: https://www.ncbi.nlm.nih.gov/books/NBK1279/ The 1997...

If this is the right book, then it talks about the genetic ones. One of those is classified as «hypermobile», but is distinct from hEDS if I’ve understood things corectly...

The case report on Paula (pseudonym) is horrifying. They do an excellent job at demonstrating the absurd logic used by those refusing to give her appropriate feeding support, e.g. that worrying about slightly lowered life expectancy from tubing-associated infections is irrelevant when the life...

I agree with the premise that the more severe end of ME/CFS needs more attention, but the abstract gets a couple of things wrong: This is not the case, and asserting it as fact might make the people that do not have an abnormal enough response on a 2-day CPET be excluded from benefits. This...

Sounds like the lawyers and publishers need to learn that there is a difference between being sued and being sued successfully. It can only be defamation if what is being said is untrue.