Dear fellow Melanoma Fighters , Dear MRF,
- June 14, 2021 at 5:44 pm
Am I the only one, who finds the Melanoma Forum terrible compared to the previous version. Here is why:
a) all photos and personal data of forum members is gone
b) the icon /badge function does not work. I find it impossible to configure the badges according to my melanoma history
c) It does not work with all browsers flawlessly and seems quite picky.
Bottom line, I am surprised nobody has addressed these issues. Is there a chance to revert back to the old setup ?
I have mentioned those very points – REPEATEDLY!!!!!!!!!!!!!!!!!!!!!! You can try your luck:
- June 14, 2021 at 7:37 pm
This link lists the staff: https://melanoma.org/about-us/staff/
In addition to the points you noted, I added the fact that covering 3/4 of the page with ancient links to divided forums is a waste of space – I suggested that if it is thought that these separate categories are indeed important – the fact that they are little used not withstanding – the space they occupy could at least be minimized since the space they take up makes it hard to find recent posts. Additionally, all the tags and crappola on the right side of the page make it overly busy and are an additional waste of space. Further, I have noted that spam – which we folks with cancer are forced to monitor and report – stay up far too long despite that reporting. For instance, this post – https://forum.melanoma.org/forums/topic/news-update-times/ – is still there, even though it has been duly reported. On the other hand, if I dare to include “too many” (no clue where that line is) links that are valuable to a melanoma patient in order for them to have the tools they need to advocate for their care in a post I make – I AM BLOCKED FROM POSTING!!!!!!!!!!!
All in all, as a member and advocate for this forum for many years, it is the craziest thing that we as the members and folks in need of this service, have no voice in the way OUR FORUM works even though a group of us gave of our time to meet with the powers that be BEFORE the changes and emphasized the need for access, spam control, and maintenance of patient profiles, etc. Our pleas were completely ignored. Further, there is no doubt that this grand update cost a pretty penny. Funds that could have benefitted a melanoma patient in need. These dollars achieved nothing but aggravation for those of us who have not been driven from the site. Don’t know what else to tell you. celeste
The old forum design with the patient profiles was far better (I think these are all lost which makes it hard to help patients without knowing the history). We dont need all these groovy emojis and heart shapes that I click on but have not idea if they work. And bubbles is right now that the general melanoma forum is at the bottom of the forums while the ones above it (which I didnt know existed) typically have old postings. Also its quite hard to even find this forum any more.
- June 14, 2021 at 8:56 pm
Its a pity as this forum and the posters really helped me understand my illness and also together with my doctors and second opinions, find treatments that worked for me. I have no idea why it was changed and the users were not consulted. The end result will be fewer contributors, fewer patients, less help, fewer patients cured. Its a huge pity!
Baby_GirlParticipantYep! I use to come and read this forum almost everyday when I first discovered it about 6 months or so after my diagnosis. (And posted/responded occasionally too) I was so glad I found this community! But when they switched to this new format… I found it confusing and not user friendly. I really hate the spam and how older posts make it to the top. I thought maybe it was just me (I don’t like change lol). I don’t come here and read or respond as much I use to or would like to. Now let me see if I can post this reply correctly….
- June 15, 2021 at 1:06 am
MelMelParticipantChristian, I completely agree with you. They basically decimated a very popular, informative and vibrant patient forum and reduced it to rubble. The old format was easy to use and worked just fine and required minimal changes. The new one is all techno based but with very little or no substance and I find that it is not made for actual patients but more geared to teenagers. Just finding it is a challenge and if they tried to hide it they could have not done a better job. As for being user friendly, it is a complete and dismal failure. Prehistoric posts mixed in with the current ones seem to be just the icing on the cake. Profiles were the key. Now, one has to repeat their history and this gets tiresome and annoying. The forum is extremely difficult to find, tags and emojis as well as the badges are not only totally unnecessary but are super irritating. As melanoma patients, we are here to learn crucial information and provide support to others dealing with the same disease. This is not facebook or a common social chit-chat web site. If it is difficult to use on a lap top, it is even more so using a cell phone. The old version had many posts and patients had easy access to everything. The new version has far fewer posts and patient visits as well as the responses. It is like why bother to go through a maze each and every time?
- June 16, 2021 at 4:29 am
Battling melanoma is difficult enough and using a scientifically based website to obtain and share crucial information should not be this challenging. I am extremely disappointed with the new format.
Agree with everyone above. It is really hard now to find the patient forum and its filled with empty space and emojis, and out of date posts, and many forums no one is using.
- June 16, 2021 at 9:09 pm
The main page of the website also has more advertising and stuff.
this is terrible because people will lose lives as a result of these changes (people here have given me lots of help; i have also learned lots from others’ experiences too like polymath and others whose experiences have given me hope) – less advice and support is being and received and the MRF dont seem to realise or care. The purpose of the forum and this website should be to help melanoma patients and their friends and caregivers. why werent the users / members consulted about any of these changes?
I hope the regulars will still keep posting and the newcomers tell us of their treatments and experiences so we can keep patients alive
- June 17, 2021 at 10:12 am
I have written to the email addresses, Bubbles provided and expressed by discontent.
Lets see if they gradually come to realize that this forum is losing members.
It is such an important platform in so many ways and I am puzzled by the indifference of the administrators on this site.
Thanks, Christian, for reaching out to those with the power to make appropriate changes to the site – or at least with the ability to share our concerns and needs with those who can. I am probably known as the crazy ranter in those circles – not that I care one whit! But, perhaps if they realize we actually have consensus regarding changes we need made to make the forum more workable for the people who depend on it, we may attain some positive result.
- June 18, 2021 at 8:45 am
RoccoParticipantNo, you’re not alone. The old format worked….ask a question, get replies. MPIP.org was a lifeline for me after being diagnosed Stage IV in 2005…..used it daily to get answers, give answers and get hope. A lot of people relied heavily on that bulletin board . The profiles were extremely helpful to me – now they’re gone….and the new format is not well designed and painful to use especially for anyone needing to ask a quick question, find an answer and get the much needed support from fellow warriors and caregivers.
- June 19, 2021 at 9:34 pm
Another issue … and maybe it’s just on my end. Whenever I do a search, it will return several pages with that particular keyboard. However, when I jump to Page 2, it’s blank. So you might have 84 hits from your search but you only get to see the first ten.
- June 23, 2021 at 9:30 pm
How is *that* helpful?
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