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Thank you for your post and engaging with this group. It is our policy not to publish posts which may make unsubstantiated claims against individuals, groups or organisations. It is also our policy not to post speculations which have previously caused distress or upset to group members, for compassionate reasons. We apologise that, in this instance, our group administrators – who have personal experience with different forms of CJD – have decided not to accept this post at this time.

Though it may not be appropriate for us to post certain questions/topics in this forum, as a charity we do not wish to shy away from these topics and offer a number of avenues for people to seek accurate, unbiased and up to date information via our charity, for example on our website ‘FAQ’ page. We can also direct questions to national and international experts in the disease when put to us directly via email [email protected].

We also do not wish to suppress anyone’s freedom of speech. Our Facebook group is a closed, private group with a limited scope and members are encouraged to explore other forums if wishing to discuss topics which fall outside of this scope.

We are a very small organisation with limited resource and these decisions involve the time of volunteers. We therefore apologise for any delay in this response.