Sticky Blood-Hughes Syndrome Support
8,078 members8,317 posts


I am not really sure how to put this without upsetting or offending anyone, but I am really concerned about the content of a blog/post recently written.

There are guidelines and rules for this forum and there are at least two rules broken in the blog.I found the rules earlier but for the life of me can I find them now? No !!

What concerns me more than anything really is the content and how it may alter the mindset of someone accessing this site, who is new to APS and is so desperate for answers or to feel better they may try anything.

Who moderates this forum? Who is in charge? Surely some content must be screened to a certain degree to protect its users/members?

Not everyone is (sp) offay with the internet and I feel that in the peoples search for answers, they are in a very vulnerable position here on the big wide web and often give over information without thinking, because perhaps they are so relieved to be here with other people who know how they feel that they forget and perhaps trust too quickly.

I am not saying that this is everyone, and perhaps its the minority of members and I do think some think along those lines.

Just remember that lots of different people access sites/forums like this for ulterior reasons and motives and not all are who they say they are. Journalists and even perhaps the DWP. I am not trying to scare you, but just to warn you to be careful. There is two choices when you do a blog. The everyone is recommended, however you can chose to only let HSF members see it. Sadly not everyone is a HSF member and we really do need as much input in seeking our answers as possible.

I am just concerned and my protective nature is to point this out to you all.

I personally get a feeling that one particular blog is not all what it seems but I am glad that most of you seem to have cottoned on to it too.

When we are first ill, strange symptoms, scary symptoms we are terrified and we feel so alone. Places like this should be a safe haven where we can relax and learn about what is happening to us, gain information through knowledge and the experience of the more *seasoned* suffers (sorry not the best word to use). But at the same time its down to us more *seasoned* of APS sufferers to protect the new and vulnerable too.. I know that myself, I will never forget how scared I was in the beginning and that is a very lonely place to be.

I am just concerned and I hope that I have not spoken too much out of turn


5 Replies

Hi Annie,

I agree with what you have said about us seasoned people protecting the newbies and that this can be a scarey field for any newly diagnoised person.I take on board what you have said about they fact that we have to weight the access for information and knowledge against the idea of protecting and ensuring the saftey of the individual.

There are moderators on the group of which i am one the other moderators are






I do think there needs to be some intro or something so you know who we are and if you feel the way you do and have seen rules be broken that we have not please do email one or all of use and we will look at the matter and take action. We as moderators sometimes miss things like this weekend i am only just catching up as i have been away seeing family but i do take your point and we need to be more vigilant.

I also think this forum is releativly new in development and we as moderators need to tak toKate at HSF about how to make this a forum that is used by a cross group of people and make them feel safe but saying that this is a safe forum and a great group of people and i have been around a number of other forums which are as you say not as safe and make issues.

I hope this will put your mind at easy and i welcome an email from you about which blogs are breaking the rules.



UPDATE Just to also tell you i have taken the decision to delete one of the Blogs as you are not the only complaint.


Hi Paddy,

Thanks hon, glad you back, Hope you well

Take care, hugs Jessielou xxxxxxxx


Hi Sheena

Sorry with my flare up and and life it just got a bit manic here but should be back to normal now. How are you doing we need to catch up in email.



Thanks Paddy for your response, very much appreciated and I also appreciate that all moderators are sufferers themselves with lives, flares and problems of their own to deal with away from t'internet :)

Annie :)



Please note that you, as all members, can "report" a post if you feel the content is inappropriate or offensive in some way. This way the moderators will receive a notification "Report of Abuse" and it may be more likely to be dealt with swiftly by moderators.

Content is not screened before posting but moderation is done as per capacity. Primarily by the the charity and volunteer Admins. A strong sense of community and membership helps keep an eye on a community too.

One other point, please note that restricting the view to members only means to members of this community, not any particular membership scheme that a charity operates (the wording is being altered to reflect this more exactly).

Thank you for being vigilant but going to the Admins hughes-syndrome.healthunloc... is always the best place to start.





You may also like...