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“Back of a cigarette pack journal”

I assumed not and I think the ‘researchers’ will assume that nobody will bother to check on them so won’t hold back from coming up with their own interpretations of,or excuses why they weren’t able to meet, the requirements.

Can see it coming a mile off oh the reviewers don’t want to be named or their review published because of those people with ME and their friends “maliciously” pointing out “completely inadvertent” :whistle: omissions and errors

And will the NEM be auditing compliance with their requirements?

Spot on @CRG

Love the Tour de France one Helly. :thumbup:

“Gold standard reviewing”

Disgusting

Stanford, California Neurology department

What world do these people live in where naming a questionnaire “acceptance” of a debilitating symptom like pain or chronic fatigue seems appropriate :banghead:

Thank you @shak8 maybe the researchers don’t realise that with @dave30th connection to Virology blog website their discussions might reach a wider audience. Perhaps they wouldn’t have been flippant if they realised.

Thanks @Andy

Makes recommendations about how it is possible to engage people with very severe ME. This will be very useful for people involved in patient participation in research to educate researchers. It’s a shame they had to go to the effort of doing research paper in order to get the message out...

minimal information really we don’t know the full agenda - the topics & speakers to be able to ask focussed questions also not much notice for people with ME maybe it’s more just an informal round table meeting than a conference but the public facing side seems a bit of an afterthought

This refers to a conference “Fatigue 22” Anyone seen information about it?

And it’s also worth noting for example that the charity FNDHope is in fact a US charity https://fndhope.org/contact/ this is international issue, not just UK.

I use a folding stick. Helps with balance which gets worse the longer I’m out.

Just reading the title increased my hypertension :mad:

It’s in the original post on this thread

Hi All The moderators recognise that the involvement of Sajid Javid does mean there is some relevance to ME politics in the current Conservative leadership and Cabinet situation. However we ask that members don’t discuss and speculate about the current situation further as it inevitably leads...