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That would be the estimates I am used to hearing for Norway (I've also seen 15 000 mentioned), so it sounds small when used for the UK. I don't remember what the Norway numbers are based on, though.

I wish, but it was the words used when Kennair left the program. The attitude is alarming.

She is research director of the department of systematic reviews at the Norwegian Institute of Public Health :(

Ah, their project was only to be generalized to other, similarly motivated patients. The patient-blaming possibilities with such an approach are huge.

Just saw the Dax18 piece. At one point the reporter says "As a researcher you Kennair does not want to talk to patients or their carers". Wow, just wow. o_O

It is strange, I'm sure there are plenty of studies that are stopped by REK, you don't see them getting so much press. It has been said that this is the first time a patient organization have been in contact with NEM, which could explain at least some of the interest, but I haven't seen it...

A nice opinion piece from our ME association :) En viktig avgjørelse for uavhengig og god ME-forskning An important decision for independent and good ME research

I hope the irony of Kennair asking people to just stick to the facts and then goes on to say he can't take into account what a representative from the ME Association says is not lost on people (the translation is not good on this point, I want to say he can't be bothered but that wouldn't be...

I wouldn't be surprised if it could, but also hormones can influence our metabolism so it could be whatever change happens due to the hormonal change is also affecting your ME? I can do more in my follicular phase than in the luteal phase, and apparently in the follicular phase the female body...

An update on their facebook page recently, nothing big but I like that they write something :) I might argue a bit about the "occationally" poorly tailored services. I'm mild/moderate and can't say it has been an occational thing. They have previously had a "both sides" approach.

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With nutrition, there is at least the acknowledgement that not everyone can/will adhere to a dietary treatment, and there is little point in prescribing a diet not everyone can follow.

I liked this one, except for calling PEM increased fatigue.

For example it can be a requirement for disabilities to have been through a course of CBT or a rehab stay.

To draw a parallell to CBT treatment, it doesn't matter if a psychologist or psychiatrist (or even a rehab centre) turn down the patient - the GP will in some cases be required to keep asking until the patient is accepted somewhere. That has been the case in Norway at least. I don't think the...

Sigmund Olafsen has again written in Forskning.no about the study Ikke rart at ME forskning ble stoppet No wonder ME research was halted Brings up the NICE guidelines and how similar psychosocial research has been graded as low/very low quality. Edit: He also links to an older Norwegian...

We have a Norwegian word "tydet" that fits :P

Forskning.no has a new post about it today Kan en stanset ME-studie få følger for andre forskere? Can a halted ME study have consequences for other researhcers? Some of those interviewed (also in the NRK article) seem to believe this was just about the conflict of interest.

From the Norwegian NEM document, I would say they agree with you. It is the lack of mitigating factors together with the COI that is problematic.

I don't see the term "Well documented" in this context often.