I’m getting in touch to inform you about a new feedback feature ,to help us better understand how you feel when you read posts.
Underneath posts, a selection of users will soon see the option to tell us how a post “makes you feel”. Please keep in mind that your answer is not, and will never be, visible to others. It only functions to provide the HealthUnlocked team with the information.
This kind of information could help us improve our Search function, and also improve how people at different phases of their health journey receive support on HealthUnlocked.
For example: if someone is posting more negative experiences, we want to ensure they will continue to receive the best support from others that are equipped to help them (e.g. people that have been through the same thing). At the same time, someone who is not as equipped to help (e.g. newly diagnosed) might benefit from avoiding more negative posts.
Please bear in mind that right now, this is a trial run! We know that positive/negative experiences and responses will range from person to person and that it’s hard to label everything in this way. You can make another selection if your feelings change at any point. This is a work in progress and this is why we want your help.
As always, get in touch with us at support@healthunlocked.com if you have any questions, concerns or thoughts. We want to hear from you!
Hi Laura, I think it sounds a good idea but it’s good for those who are newly diagnosed to understand that we can turn negatives into positives and how we do that. Hope that’s not too confusing. Kindest regards Aime xx
As long as that message is clear to those have the option to choose an emoticon - perhaps rather than "will not be displayed anywhere" it could state "will only be available (anonymously?) as a report to HealthUnlocked". Just a thought as we have some sensitive and fragile souls on our Forum who can quickly become very anxious about such things.
I agree completely with MissisB 's comment, that it should be clearly stated that their choice will not appear on the post, and that the feedback can only be seen by HealthUnlocked.
You should have an angry one as well. We have the choice already to like. Now if we are happy or sad. But some replies to posts and post make me angry.
I have realised that as there is no "explanation" of the emoticons, it is unclear whether, for example, the first face means you find the post extraordinarily funny, makes you very happy, very helpful, or ... Does the final face mean you are cross, upset, unhappy - with the post, the poster ...
Hi Laura. Sorry, you're not going to like this but...I think this is a terrible idea.
For starters, in the PAS forum most people post because they are:
a) not able to get a dignosis or treatment from their doctor
b) they are in various stages of decline - to the point of irreparable neurological damage which ultimately leads to death, if not treated
c) misdiagnosed and unable to get their GPs or consultant’s to either listen or take their concerns and obvious health problems seriously
d) are subjected to a sometimes extraordinary level of bullying and hostility from their medical practitioners...
....just to give you a brief picture...no prizes for guessing which 'smiley' would be tapped.
Following these posts with the question 'how did this post make you feel' is quite frankly ridiculous (if not insulting to both the poster and the reader). And yes, the answer is anonymous...but how would you feel if someone asked that question about a post that you'd just written...knowing that your post can do nothing BUT make others feel terrible..
And to go on...
Many of the posts on our forum are highly distressing (to say the least)...however...if you then consider the replies to those posts (which don't get 'smileys')...
The replies are both humbling and uplifting at the same time...many are backed up with solid medical evidence / research and detail ways in which forum members have encountered such difficulties...and either overcome them or found a way to better health (either by being able to access appropriate medical support by following advice given, or by finding other routes to better health). Not to mention the freedom from isolation and recognition that they are not either mad or bad, gleaned through knowing that others have also been through terribly similar experiences (which presumably, in this scheme of recogning, should be awarded more sad smileys).
So...posts will almost always make readers feel terrible...but the replies and support offered unstintingly by forum members is truly uplifting, humbling...and of enormous value to both the posters and to everyone else in the forum.
Attempting to direct readers away from posts that might be 'disturbing' - if that is the ultimate aim - is therefore both reductive and ridiculous.
I agree completely with you. Advisers especially have a lot to do in responding to members of any forum and to have the pages shortened so that sometimes there's about 2 inches of space instead of the whole page that used to be available and which you could read back, instead of inching up/down repeatedly to check what you've written and we have to slowly read if any corrections should be made before you post.
Anonymous judging in any area of life is a slippery slope. When people are not accountable for their opinions and actions, in my opinion, a very important element of maintaining a high moral compass is removed. When transparency is gone we have no chance to stand up for our choices. Judging posts anonymously is a microcosm of problems in today's world. I agree with your post, Foggyme.
Also, for myself, I often find myself liking something that the majority do not. This seems like it might make helpful info hard to find for the minority. irina
Absolutely agree with foggyme above, words fail me as well... Would it be possible to opt out of this feature test as a community? Because then, we absolutely want to!
Also, like many questionnaires that have come my way it does not contain enough choices or space for me to accurately express my rating or comments as to why I feel as I do.
Totally agree with Foggyme - should be abandoned right away, everybody reads and determines there own view - what's the point, especially if its anominous and nobody including the admins can see it!
Its hard enough writing posts without thinking people are rating you, thats not we are here to do.
If it goes ahead an opt out option to each forum must be available!
I also agree with Foggyme. You say this is to assist with the Search function, which everyone knows is rubbish and goodness knows needs a major ovehaul. However I fail to see why directing searches by how the posts make people feel would be considered an improvement.
I feel a bit confused as being an administrator receiving posts from people needing support and help is sad, but also its good that they turn to us for help. But It isnt my views that should be looked at , it should be the member who needed help, and their views to be considered. x
I inhabit the NRAS forum I find this idea/project confusing. We already have an excellent forum, that uses #Tags and it is extremely easy to search and find answers to questions. And yes, you will get positive and negative opinions about some topics - so what?
Aren’t people assumed to be capable of reading and reflecting on the information contained in those posts?
You don’t believe that members are capable of reading/reflecting and then asking further questions if they need more information?
You don’t believe that if someone asks for further information, that forum members won’t supply it?
Hi Laura nice to meet you. I think what your doing by asking how this post makes us feel is a good thing. Let's you know how people are responding to posts. Weather it makes them feel good or not. It helps with they felt good about the post or not. Keep it up your doing a good job. Love susie jo1948
Is it possible that how a particular post makes us feel can also be due in large part to how we feel about anything at a particular given time? We see things (incl posts) differently depending on if we are happy, sad, depressed, angry, etc. when we read and speak.
If our mood can't be factored in when evaluating posts then, in my opinion, the value of the evaluation is lost. And don't forget the mindset of the evaluator on any given day.
I have posted several responses to this thread because the subject is very meaningful to me and, after sleeping on this issue overnight, I feel strongly that if this feature was added, I would no longer feel comfortable posting my thoughts on this forum. Which is sad as I only belong to 2 forums on Health Unlocked: ThyroidUK(of which I am a US member) and the Atrial Fibrillation Association. This is the only place I share and receive health information.
I have gotten so much help from my forums I would hate to leave but more censureship through anonymous decisions about my writing is not something I want in my life. This may seem a drastic idea but I believe every control in life put in place by authority starts as a small issue that doesn't appear to be important to many. People slowly begin to be silent about their thoughts when controls and anonymous judgments are placed on what they say. For me this is the first tiny glitch in maintaining freedom of speech.
Tighter controls are never the answer to good communication and helpful exchange of ideas.
Interested in others' opinions-especially from other members of my forums. I've learned to value quite a few posters' opinions from online friends here.
Thanks for listening. irina
Just saw this thread; sorry to be late.
One of the things that makes this forum comfortable is the anonymity of our responses. There is no element of judgment other than someone who responds with their positive or negative opinions. I can then choose to respond if someone doesn't like my post or not. I usually don't. It is just their opinion and they have the right to not like what I wrote.
Also, there is a difference in not liking a post and disagreeing with it. Disagreement , to me, indicates the poster is open to a friendly exchange of ideas, whereas, from my own experience, often not liking my post may have more to do with the poster's anger, mood, and less to do with correct or incorrect information.
There is so much judgment we all face from the world everyday I would feel like I had to 'edit'my thoughts to avoid anonymous judging by someone who gave me no chance to respond. Like having an evaluation at work with no chance to add our comments to our boss's opinion.
In my opinion, most posters are intelligent and discerning and can make up their own minds about posts without added help by a governing body.
To be fair, my thoughts may possibly be clouded by all the control currently being exercised by my own government (US). Let's please continue having a forum that is friendly, extremely helpful, and has a high degree of transparency.
Anonymous judgments, for me, can be very anxiety producing.
Hi Laura Hu, honestly I've not had a problem with it. As far as how a person reacts to a post. Yes I do believe the person reacts differently to a post depending on there mood at the time of reading . She wants her feelings about posts for people without others behind the scenes reading how a certain post made her feel. For one thing telling her feelings about a post. She isn't able to talk about the post because other s behind the scenes know how she's feeling. That's making her very uncomfortable. She just wants to be able to keep her friends and there posts. New posts from newbies she would be able to respond to people s posts If they want to have a friendly debate and not having everyone behind the scenes knowing how it made her feel. She feels as if that isn't private that all these people behind the scenes don't need to know how she feels about a post. Hopefully I've explain ed it The best I can. susie jo1948
Would like to hear how Matt another Dr thought up HealthUnlocked it's a very good place to be. With others like our selfs. We get to hear others telling there stories about there illnesses and I for one I enjoy helping others. susiejo 1948
Sorry but this is a silly and pointless exercise. A great deal of time collating meaningless trivia. My life's already been shortened enough by statins!
Hi Karis. I know statins is not the main subject here, but i've read in different sources that these kind of drugs when chronically used cause dementia and, according to some cases reported, lead to Alzheimer's. There are many less toxic options out there such like nattokinase, gugulipid, polyphenols, to name some. As for the subject in trend, to me is more confusing than helpful.
Hi Ayekila! I have yet to find one single bona fide non drug company funded medical research paper that can provide categorical proof of the benefits of statins. As you observe, dementia and a shopping list of other problems are well documented in association with any lowering of cholesterol - including supposed natural things like nattokinase and plant sterols. Slowly but surely this money making scam is coming under scrutiny. The fallout from this will be bigger than thalidomide in time. Too late for me and some of my friends, but many others have seen our rapid and alarming deterioration so will thankfully not be brainwashed by big pharma and fake science. The bottom line is the own research then make your own choices. Not easy but essential.
That's quite righ, but at least with natural approaches you're giving your body the kind of information it can understand. When you use medications you are giving your body information it can't understand. Let's remember that for your body a drug is a toxin.
Hi Ayekila! There's research and patient experience on my FACEBOOK that might be helpful. Just posted undedheartproject.com - which is an experience many can relate to on statins. Enjoy your day 🤗
Hi Laura, as pointed out by some other members, the "meaning" of the emoticons is not clear.
For example, sometimes there is a sad post, or one which describes some painful conditions/manifestations in great details. I wholeheartedly empathize, and believe that the post is helpful because it actually echoes the experience of other members, so that we can identify with it, and hopefully offer feedback of how we dealt with a similar occurrence.
So, in such case what emoticon should we choose: happy- (because the post is useful and relevant) or sad- (because we feel for the person).
In my opinion the idea behind the use of these emoticons is valid, but we need more clarification of how to actually use it, so that it will ultimately produce the meaningful results you are looking for.
Greatly enjoy the LDN videos especially those that apply to Graves disease. I was wondering if it was possible to email Terri from the US with Graves disease interviewed about 4 years ago, to see how she's doing I am starting LDN at the end of this month for Graves disease also. Thank you if you can put me in touch with Terry from the US with Graves disease.
I am 76 with heart and lung conditions so attend gym twice a week with personal trainer for best results. I now have very strong legs again and have completely stopped falling. I feel marvellous but am now going on the Michael Mosely life diet to feel even better. When I cut out sugar and starch My body feels better still and all my bits function much better.
I seriously need to reduce the weight because I also have lymphodema inmy legs which means I carry 10lbs extra weight and this will reduce my weight in the legs and help reduce the awfulness of lymphodema and the weight it imposes on my ankles.
I am now using wobble plastic cushions in the gym to help strengthen my ankles which have begun to weaken from the weight the condition puts on them and which also sends them into a form of collapsing. This seems to be working.
I do not see how this can help anyone. It is easy to rate the posts, where they are pictures or light hearted. When it comes to real problems and help sought, how can I give a smiley face when someone says they have just been dignosed with Crohn's and want advice, but I cannot give the negative either, I would need an "empathetic sorry" and I would then offer what help I could. Steering people away from a certain type of post on the grounds that a lot of others had found that type of post negative, could reduce the help others on that site can offer. I think I have only bothered a couple of times, because I kept arguing with myself as to whether I could honestly say I found a request for help a smiley face, or a miserable/unhappy face. It is neither, it is a fact find and a reassurance. Would I react to a friend who's spouce is dying of cancer, that I was happy with her post, or that I was miserable that she had asked for help, so would she stop asking?
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