• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

John Darvall (BBC radio) wants us to tell him how he can help us!

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
But why the need to conduct it in a private forum?
I don't know if this is what people have in mind, but private forums are not searched by Google and the other robots who scour this site. Whether that would matter to him, I guess we don't know.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
But it doesn't have to be a free-for-all. Any discussion would have to be set up with a clear purpose, mostly for him to ask us Qs and/or to respond to the viability of some of the suggestions that he is asking us to put forward.

But any discussion here is, by definition, a free-for-all unless you're going to require the moderators to prescreen posts (which is not fair on them). It's an open forum and anyone can post. And on such hot-button topics, it really can go bad very fast.

Saying that, if organisations purport to represent us and don't (eg are wedded to PACE) then that is information that should be made clear to anyone looking into all this.

There's nothing stopping anyone posting such a comment on his blog (which he will see, even though he might not want to let it through moderation) or emailing him about it.

As @Scarecrow says, he's invited us to post on his blog. That's going to be where he's most comfortable and where he can control things.

He's doing us a massive favour - I think we should play on his home turf and not expect him to come to ours.
 

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
I don't know if this is what people have in mind, but private forums are not searched by Google and the other robots who scour this site. Whether that would matter to him, I guess we don't know.
It was eafw's suggestion to have the discussion in a member only area, unless I misunderstood.
 

eafw

Senior Member
Messages
936
Location
UK
I think we should play on his home turf and not expect him to come to ours.

I don't even remotely "expect" him to come here.

I do know, that if I was doing research into a subject I was new to and was offered an invite onto my subject's forum, I'd be delighted at the opportunity to do that.

He doesn't have to respond to an invite, he is completely free to say no thanks, he may well have plently of stuff from his own blog or other communications (facebook etc).

Are there any specific PR rules or precedents for such invites, or do people just sign up of their own accord if they want ?

It was eafw's suggestion to have the discussion in a member only area, unless I misunderstood.

Yes, because it's the internet equivalent of inviting someone round to the local group meeting for a chat - off the record. There are people out there who would sabotage any effort by the media to stray from the usual line remember.
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
John Darvell's comment, posted on his blog this morning, in regard to my invitation to the PR forum.

"I have now looked at the thread on your site. I am first and foremost a journalist so will take all views and give a voice to all while making sure that what is said is true and real. Thanks for the link."