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
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.
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...
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