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Fibromyalgia Action UK

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Fibromyalgia Action UK - HealthUnlocked Guidelines

Mdaisy profile image

Fibromyalgia Action UK (FMAUK) HealthUnlocked guidelines

Last updated: 14th April 2020

Welcome to the Fibromyalgia Action UK (FMAUK) HealthUnlocked Community!

The community is moderated by volunteers from the Fibromyalgia Action Team and members who have been asked to be Volunteers and Admins (all are voluntary). The platform is provided by the HealthUnlocked (HU) communities team, but they do not run the community.

Views expressed are those of individuals and not of Fibromyalgia Action UK

All members of the Fibromyalgia Action UK HealthUnlocked Community MUST read and abide by both the specific Fibromyalgia Action UK HealthUnlocked Community Guidelines in this post, and the General HU site Guidelines (see link below). These apply across the whole HU platform, when posting any content on this community, whether public or private.

You can read the General site guidelines via the link below too

Guidelines of FMAUK.HU

1. Members posting on the site should not be assumed to be health professionals

2. In posting about health or medical information outside of your immediate personal experience, show a clear distinction between personal experience or opinion and evidence-based information and be careful to not present information outside of your immediate personal experience as fact unless you can back it up with reputable evidence based information sources.

3. Fibromyalgia Action UK cannot be held responsible for the content of external websites.

4. You may post the non-personal contact details or clinic details of doctors, specialists or other health professionals to encourage members to find helpful medical support. All members should understand that such comments are personal and subjective and are not an endorsement by Fibromyalgia Action UK. When posting contact details, please ensure that you have the right to do so and that it is appropriate to do so.

4a.Health Professionals should not be referred to by name in a negative manner, as per the HealthUnlocked Community Guidelines. HU is not a form to create negative feedback about identifiable individuals.

5. Be mindful not to post offensive material within a post whether it be a picture or written text.

Religion and Politics should not be discussed here as it is hard to not offend someone in discussing these.

5a. We make an exception for Fibro or disability specific subjects, such as disability welfare reform. However other aspects of politics should not be discussed: this includes immigration, party politics, political funding, general (i.e. not disability specific) etc MP's should not be referred to by name in a negative manner as per the HealthUnlocked Community Guidelines as HU is not a form to create negative feedback about identifiable individuals.

5b. In all threads, regardless of whether they are on political subjects or not, care should be taken to avoid offense. Racism, sexism and other forms of discrimination are never allowed.

5c. In all threads inclusive of Private Message facility NO member of the Fibromyalgia Action UK team should be verbally abused in any shape or form. Abusive messages will not be tolerated and could lead to a period of restriction or permanent restriction from the community

5d. Swearing is not permitted in our community. and a comment containing even mild words are likely to be edited. However, we understand that sometimes members may need to express their frustrations so any swear words that have been disguised by the use of ‘Asterisks( * )' will not be edited by Admin.

This will not include subject lines, so please do not use asterisked swear words in subject lines.

As a guide we will follow the BBC watershed guidelines for pre 9pm programmes but it is the decision of the admin dealing with the report at the time that is final.

this post can be of help is determining what is allowed:

5e. Harassment towards our or any HU communities and their volunteers is NOT allowed and will be deleted. Any messages between members & Admin should remain private therefore any of the messages should not be added to the community as a post or within a post.

5f. The admin team where possible will try to explain their reasoning for decisions. However, they are volunteers and reserve the right to reply or not as their time permits. Please be mindful that the moderator is normally responding to another users report of an issue and they are reacting to that report and will apply the rules according to their view of the situation.

6. Criticism of spelling, punctuation and/or wording of messages will not be tolerated. We have members from around the world, many of whom are affected by Fibro. If you don’t understand a message, just ask the sender to clarify it.

7. Spamming of other members through private messaging or on the open community will not be tolerated and may lead to you being removed from the community.

8. Do not solicit members to other websites or forums for your own purposes, either through posts or private messages. You may discuss your blog or vlog only if it is related to Fibromyalgia as a helpful resource but you must NOT post a link.You can however invite members to private message you for the further information.

9. Do not post questions, blog posts or private messages soliciting money for individuals, other organisations or other causes. If you are involved in fundraising for Fibromyalgia Action UK through a secure online system (like Virgin Money Giving or JustGiving), then you can post a blog post concerning this. However, repetitive postings or spamming of other members through private messaging will not be tolerated.

10. Promotion of commercial products & services is not allowed. You may refer to a product or commercial service by name as a useful resource but you must NOT post a link. You can invite people to use the message system to obtain the information from you if needed. Repeated posts about the same product may be considered promotion and could lead to posts being deleted or your account being restricted. Posting about helpful, supportive or informative resources that are freely available IS allowed and links can be given.

10a) This extends to posting pictures of your commercial products and/or services including company logos or any recognisable company image.

11. Do not post details of online pharmacies offering medication without prescriptions

12. Do not offer your unwanted medication for sale

13. Do not breach copyright rules by placing documents into unless you have permission from the author of the document. You can, however, post excerpts and links to the full text of the document.

14. The FMAUK HU Community Forum is NOT an advisory service and does not offer private counselling to individual members. If a member sends a message of distress via a private message to any member they are kindly asked to alert an Admin, who will advise the member seeks professional and medical help.

14a. Posts or Questions with complex, distressing content are likely to be edited to be locked to this community to ensure it is kept private within our community if this option has been overlooked. A message will be sent to advise you if this course of action has been taken.

15. Members are reminded to be aware of the internet, regarding your safety, trolling and issues associated with online community forums. To avoid disruption within the community please report offensive comments from members who could potentially be trolling, it is best not to reply and the Admins will address the situation as necessary.

15a)This also extends to Private Messages, please remember to be aware of your security, spam or trolling and any unwanted messages. Please ignore them, delete it and please contact an Admin so we can alert the community.In regards to offensive/abusive messages these are not allowed, please see link below for further information:

15b) Internet safety is an important issue here in the Fibromyalgia Action UK community therefore pictures of minors are not allowed to be posted and will be removed.

16 Due to the amount of members within the community, we ask that you ONLY post one picture per 24 hours. This is to try to avoid the platform being flooded with images and for more information about why this was put into place please see the post below;

17. This community is run by the charity Fibromyalgia Action UK (FMAUK), therefore any research studies or surveys/questionnaires posts MUST be authorised by the charity before posting. If you would like to add a post of this nature then please email with the details to gain permission to do so. Any unauthorised posts will be deleted by the community admin.

18. Moderators reserve the right to restrict a member's account or have a member removed from the community without notice

19. The decisions made by the Admin of any group should be respected as being their decisions and should not be open to discussion or interpretation by the admin or members of other groups.

20. Admin communication cannot be ignored or muted. More information here:

21. Posts with images, videos or links should have accompanying text and not just been posted on their own. Part of the reason for this is that spammers operate this sort of behaviour. But, people should have an idea of a site or video etc before they click on the post. Also, We have some people using our forum with assistive technologies to such as screen readers to help people with sight issues and the text allows them to have context.

22. Research Studies

The forum will post research studies from time to time. All research studies require to have been run through FMA UK's research process as per here:

Any studies posted without going through the proper process will be removed by the admin team. Following the proper process allows studies to be syndicated through all of FMA UKs channels.



What happens if I breach any Terms of Use or any guidelines?

The guidelines of this site are here to benefit all users and promote a supportive environment for all. Therefore any breach of Terms of Use, HealthUnlocked Community Guidelines and/or Fibromyalgia Action UK guidelines may result in the following:

*/Gentle reminder of the guidelines either to all the community or via private message to an individual member.

*Removal of the post or an edit & then you'll receive a private message about the breach, information about the guideline and a gentle reminder to read the guidelines to refresh your memory.

*After recent messages from Admin, you may receive a private message informing you that any further actions which breach guidelines you are likely to be restricted from the community.

*Temporary or permanent restriction from the community

*If a breach is considered severe therefore noted to be highly inappropriate and needs urgent action, members are likely to receive an immediate permanent restriction.

*If members have been spamming, trolling or another serious breach over multiple HealthUnlocked (HU) communities then HU are highly likely to take further action to permanently ban the member from all HU sites.For more information see this link;

Community Admin have the ability to turn off replies to posts, to find about possible reasons for 'Turning off replies' please see link below;

Please note: Volunteers are there to help guide you to post in the community appropriately and may on occasion remind you of the guidelines if they feel it is necessary to do so to encourage the best possible community atmosphere

HealthUnlocked have the following article about the role of the Community Administrator, please see link below;

The role of the Community Administrator

The FMA UK Complaints Policy sets out how complaints are handled. This policy can be accessed on this page:

Edited - 12/10/19 Adding info about rule 20.

Edited - 29/02/20 Added rule 21 to restate links policy clearer. Also added 5f and amended 5e. Also added 22 for Research Study process.

Edited - 24/04/20 - this post can be of help is determining what is allowed:

10 Replies

***********************Please do not reply ****************************

**************************Thank You *********************************

Emma :)

Community Co-ordinator

Hi I have just been told from a rumertolergest that my blood test showed I am border line thyroid. and vitimum d difencey I am in constant pain all the time with pain in both my shoulders, upper and lower back,. hands knees and feet, first thing in the morning is what I would say exhausting even before I get out of bed , I had a dexta scan on my bones and it shows I have thinning of the bones any advice please x

Angal62 profile image
Angal62 in reply to Angal62

Do you think I might have fibromyalgia x

My GP referred me to a Rheumatologist for confirmation of my Fibromyaglia. Maybe that would be the best route for you to take. I had a lot of side effects on the medication the GP gave for it and she changed it for one that suited me.

lord god do his best

I have read all of the above


I am newly diagnosed with FM and have osteoarthritis and dont know much about FM and was told to google by my consultant.

Re assuring to see places like this to know i am not alone.

Thankyou again

Hello Mdaisy

I am really sorry to have broken all the rules. It wasn’t intentional.

This is the 1st forum I ‘ve ever been part of.

I didn’t mean to cause any offence.

How can I find opinions /star chart/experiences

of mattresses, supplements and if they have had any effects ?

Will you be able to Mdaisy

Help me please?



Mdaisy profile image
Mdaisy in reply to bonny12346

You would need to speak to the charity about your intentions and what is the best way to do this on this community. Emailing them is probably best :)

Thank you for posting all the rules but I must admit that when I'm having a flare up or mood issues it is very difficult not to accidentally breach any of them. Having 22 do's and don'ts is quite alot. I apologise now incase I do breach any.

The site is fantastic so I hope to stick to the rules. It will be totally unintentional if I do. X

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