Updated NRAS Community Guidelines

[EmmaS-NRAS]

This platform is provided by NRAS and HealthUnlocked (HU) to enable people with RA, inflammatory arthritis and other health concerns to provide support to each other in regard to their health issues. As the HU guidelines clearly state it is not a forum to create negative feedback. We therefore reserve the right to remove negative and damaging references.

Whilst we positively encourage supportive comments, personal views and sharing of personal experiences from our Members and Supporters, we do not accept or indeed tolerate comments that are disruptive, slanderous, incite others or are off topic/ill-informed and lack an evidence base, this contravenes HU guidelines and terms of use.

We want the platform to continue to be a safe, informative and supportive environment for people to support each other. A number of you have let us know that a few individuals go beyond what is acceptable and some recent posts infringe the community atmosphere we want to create and so we are responding to your notice of this.

We do not seek in any way to stifle, dismiss or ignore your comments but ask that it be delivered in appropriate channels so as not to disrupt the main purpose of this forum which is health-related issues in regard to RA, Adult JIA, other forms of inflammatory arthritis and any other health problems or conditions which people may have in addition to their RA. If anyone wishes to engage with us in regard to non-health issues we would ask you to write directly to us by email [e-mail] or by letter to our registered office address (or to visit us) or to phone us on 01628 823524 and we will be pleased to respond directly to your concerns.

For reference, the HealthUnlocked guidelines and terms are as follows;

Your contributions must:

•be accurate (where they state facts);

•be genuinely held (where they state opinions); and

•comply with applicable law in the UK and in any country from which they are posted.

Contributions must not:

•contain any material that is obscene, offensive, hateful, inflammatory or defamatory of any person

•promote any discrimination based on race, sex, religion, nationality, disability, sexual orientation or age

•infringe any copyright, database right, trade mark or any other right of any other person

•be threatening, abuse or invade another’s privacy, or cause annoyance, inconvenience or needless anxiety

•be likely to harass, upset, embarrass alarm or annoy any other person

•be used to impersonate any person, or to misrepresent your identity or affiliation with any person

Community Guidelines:

support.healthunlocked.com/...

Users T&Cs

healthunlocked.com/policies...

[Matilda7]

What has prompted this?

[EmmaS-NRAS NRAS in reply to Matilda7]

Hi Matilda7,

It's been over two years since we last updated our community guidelines so they were overdue being updated and brought in line with HU's own guidelines. Also, we had a variety of pinned posts covering different topics so felt it was best to merge them into one post to make it easier for new users to see.

Thanks

Emma (NRAS)

[Matilda7 in reply to EmmaS-NRAS]

Thanks Emma!

[Eiram50]

I for one fully appreciate and wholly agree with your statement Emma. I am happy that NFAS have taken this position.

Marie

[Mall]

Thank you for the clarity Emma and NRAS. This will keep us all safe and continue to maintain this awesome community.

[Kai--]

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EmmaS-NRAS , may I ask, how/ why onesizefitsall post, 'The end of RA...?': healthunlocked.com/nras/pos...... , disappeared?

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I read 👓 it, replied 📝 to it, & then (when I went back to look 👀 at it), it went 💨 poof 💨 ! 😳

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[The URL/ link 🔗 to the post read: "It looks like that post has been deleted . "]

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I'm unable to contact 👉📧👈 (PM) onesizefitsall, either. 😯

Any clues? 🤔

Thank you kindly for any insights you're comfortable sharing. 😌 🙏

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I've placed the text 📄 of his post (& my reply) here ( healthunlocked.com/nras/pos... ), for those of us who are interested in what he kindly share with us. 😌 🙏

[I don't think his post breached any 'NRAS Community Guidelines'? 🤔 Therefore, I'm trying to understand 🙇💭 why the post disappeared 💨 — was "deleted" — along with the replies.]

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🙏 🍀 🌺 🌞

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[EmmaS-NRAS NRAS in reply to Kai--]

Hi Kai,

Thank you for your message. We did receive a number of reports about the post overnight but by the time my colleague clicked on the links this morning the post and user had both disappeared. Either the user took the decision to do this themselves or it's possible that HU have removed the user/post - either based on the content/number of reports received or they've been picked up in their automated spam filters.

Sorry I can't be of any more assistance.

Emma-NRAS

[Kai-- in reply to EmmaS-NRAS]

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Thank you kindly for explaining, EmmaS-NRAS. 🙏 😌

In meantime, is it problematic or inappropriate for me to re-post onesizefitsall's original text into a new post? 🤔

The text is under an old post ( healthunlocked.com/nras/pos... ) if you'd like to view it to assess whether it violates, NRAS's 'Community Guidelines'?

Again, I'm not seeing anything 'violating' or 'problematic' about it.

Can't understand why it was deleted. 🤷‍♂️ 🤷‍♀️

I think the information he (onesizefitsall), kindly shared with us is of USE to those of us who are interested in the topic.

If you wouldn't mind letting me know if it's safe to re-post, I'd appreciate it. 🙏 😌

Thank you again, EmmaS-NRAS.

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[EmmaS-NRAS NRAS]

Hi Kai,

I've had a quick chat with the other admins and we're all in agreement that even if the post hadn't been removed (either by the user or HU) then we would have taken the same action so feel it is not appropriate on this occasion to re-post.

The problem is not with the general content of the post but that they were advising people on what to do and the information, such as NICE not being allowed to suggest diet to anyone, was untrue. It’s not that they couldn’t have put a post up about how diet helped their wife's psoriatic arthritis, they just can’t suggest that people are struggling ‘unnecessarily’ on medication and that this would cure their condition. It’s all in the phrasing! The reason we were looking to remove rather than edit is that we took issue with so much of it that in order to stay, it would really need to be rewritten by the author rather than heavily edited by us.

Many thanks

EmmaS-NRAS

[Kai-- in reply to EmmaS-NRAS]

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Ahhh . . . I see, I see. 😌

Understood. 👍

Many thanks for clarification, EmmaS-NRAS! 🙏

Will post over at state-side Cure Arthritis Community ( healthunlocked.com/cure-art... ) forum & will link to your explanation from there to here. 👍

Think 🤔 that should cover all the bases:

• satisfy those who are interested in essence of what onesizefitsall shared about PsA wife Sharon

• and, address the problematic elements you've kindly just noted. 👍👍

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Thank you again, 'again', EmmaS-NRAS. 😌 🙏

🙏 🍀 🌺 🌞

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[Kai-- in reply to EmmaS-NRAS]

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EmmaS-NRAS, re-post/ updates now at:

• Why Does the Medical System Ignore the Importance of Diet? A Fable Told by John Robbins: healthunlocked.com/cure-art... (toward bottom of page)

• Warm welcome, Hopeyj19!: healthunlocked.com/nras/pos... (toward bottom of page)

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[pauluk60]

in other words you have to let someone /somebody who think they are of a god like status with their gang of subordinates take over the place