New Article Alert: The Best Treatment Options for Lyme Disease!

Oh dear.

Jim HW Admin,

Earlier today, over on the Bipolar Disorder forum, you posted the following:

"We’ve noticed the forum has been a bit quiet lately, and we just want you to know—we’re here for you, and this space is always open for your thoughts, questions, and stories."

Here on the Lyme Disease forum -- one of the few active forums on what remains of this site -- several of us have tried to interact with the new owners of this site. Some attempts were direct e-mails to the CEO which went unanswered. Others attempts were in messages that HealingWell management pinned to the top of the main page of the Lyme Disease forum. In some of those pinned threads, several of our messages were deleted.

Since this site was purchased by EHS, they have told us great things are coming, that the site would be improved, that "we're here for you," yet the evidence shows, again and again, this is not the case.

1. There was a failed attempt to launch a new version of this site which resulted in many users getting locked out of their accounts (the site was rolled back to its original design -- this same current design today) with no further communication about what happened or what might be planned.

2. Messages to the site owner and admin have gone unanswered.

3. Replies that we have posted in response to messages posted by EHS have been deleted.

Now, we have the above article you posted which seems to be something one would read on the websites of the CDC or the IDSA. Many of us are here, because those guidelines did not work for us. That's how many of us find forums like what HealingWell used to be.

This site was initially started by someone suffering with his own chronic illness. He recognized the need for people who were not getting better through conventional means to have a place to connect and share stories and resources. The fact that the original site owner had walked in our shoes and dealt with his own chronic illness gave him a direct understanding of our plight and the importance of community for all of us who were abandoned when the "standard of care" didn't work. The site wasn't started to take advantage of the sick and monetize their suffering.

Understandably, though, there is an expense to running a website. Currently, GoDaddy's e-commerce bundle (the most expensive plan they offer) is $251.88 per year -- or, $20.99 per month. So, the former owner did run ads on the site. That was fine with us, as that the result of starting this site, not the reason for starting this site. Yet, despite this shoestring budget and one person handling all admin-related requests, our e-mails rarely went unanswered. If one was missed and I sent a follow up, he responded.

Now that EHS has purchased this site, it would seem there's more money and resources to support this site, but the opposite has happened. There's less support and a clear lack of communication. EHS can (and is doing) whatever it wishes, as it is their right. However, I offer the above as feedback for consideration, should EHS really want to not only improve the current site, but also make it better for existing members and even attract new members.

Regretfully, whether it's Lyme Disease, Bipolar Disorder, Chronic Fatigue, Depression, or any of the other conditions for which HealingWell has individual forums, there are new people being diagnosed with each of these conditions daily. Sadly, many are also misdiagnosed, if not outright marginalized or gaslit. Those folks need support that the medical community and even family and friends can't provide. Again, that's how most of us have ended up here on HealingWell. A lot of us have lost our spouses, jobs, savings, housing, family, friends, etc.

If you're a new EHS employee and were hired to manage this site, then that's great news, assuming you will respond to posts. However, dropping in every few weeks or months and posting run of the mill articles and giving scripted "we're here for you" messages isn't going to move the needle for most of us.

I hope to receive a reply and hear your thoughts on the matter.

Thanks,
Dude

Thanks, Dude, you said it well. Exactly what I thought when I read the "we're here for you" posts Jim from HW Admin posted in several of the forums. Posts like those will never be the 'kick-starters' EHS hopes for.

i imagine revenue comes from:
1, collecting data on unique users and selling that to marketers of products and services
2, click through on ads

most users find their way here though search engine results - but the actual members that contribute to the site are a tiny proportion of the above - probably under 1%

so - as a business - i guess its tempting to simply avoid cost and effort of maintaining that 1% in the belief that revenue doesn't come from them - and that they tend to be sticky anyway, having invested themselves in the site already.

i am not naïve - so i do not expect business entities to put peoples feelings first, but from a purely business perspective - i think this is an example of classic short-termism - gaining sort term returns at the expense of greater long term ones.

The content that brings people here from search engines is generated by the active users - i.e. the 1%.
That active user base is slowly dwindling - posts per day have been dropping for several years now.
the reasons for this are clear:
1-the forum is out of date, lagging behind features common on other similar sites
2-the number of active users is down to a handful - and posts per day down to a similar number - often less
3-new members questions get few answers - as there is now just not enough of an active userbase
4-a significant number of members got locked out permanently when unsuccessful changes were rolled out
5-there is very little to attract new members or retain them - other than historical posts
6-the less new posts there are the less there is for active users to interact with - and a downward spiral ensues
7-existing members questions, support requests etc go unanswered - alienating them
8-the owners and their employees/ representatives are not aligned with the members needs or lived experience

if the business goals are to simply milk this historical content for as many clicks / referrals as they can while spending nothing or next to nothing on it, until it eventually dwindles to nothing - then i guess that's one strategy.

but it seems a little odd to go to the trouble of buying/taking over the thing in the first place if that's the plan

an alternative strategy would be to view the content generators as value creators and therefore as collaborators, and to engage with them to see to see what they think is needed to allow the site to prosper.

Peter built something imperfect but clearly providing genuine value, both socially and presumably financially - its sad to see this gradually and avoidably crumble.

Back to the original topic
In terms of suggestions to make the article more accurate and relevant:
1. You could use respected and up to date information from reliable sources - Such as:

• https://invisible.international/ an education and advocacy non-profit focussed on Lyme disease and other vector born illnesses - ran by world leading infectious disease doctors and researchers - they produce board certified training materials for medical practitioners – and are very careful to only make statements that can be supported by the latest research.
• https://www.lymedisease.org/ – another patient advocacy and support organisation that also does a good job of fact checking everything they publish
Both pf these organisations are very much aware of the schism in the medical community and go to extra lengths to ensure what they publish is properly referenced and fact checked
• The books of board certified medical doctor and Lyme disease treatment pioneer Dr Richard Horowitz MD – who has served on the US governments HHS Tick-borne Disease Working Group and was recently elected to the NY State Department of Health TBDWG. who has treated around 13,000 Lyme patients. in particular – his most recent book “How can I get better”
• The video’s and presentations of Dr Joseph Jemsek MD - another board certified infectious disease doctor who specialises in treating under-served patient groups – initially AIDS patients in the 1980’s and now specialises in treating chronic Lyme disease. He has treated over 10,000 Lyme disease patients, winning multiple awards for his outstanding contribution to this area of medicine.

(Note -This is not an exhaustive list - there are actually a much greater breadth and depth of sources available in addition to those listed – for example in the published scientific literature – but the above is a good starting point for an overview)

2. You could also ask for input from people with in depth knowledge of the disease or those with real world experience of the disease and the best treatments for it - i.e. the exact topic of the article – such as some of the people on this forum ( I would suggest this would be best done before publishing – rather than afterward).

3. Given there is so much misinformation out there on Lyme disease – If you would like the article to be taken seriously, I would suggest adding references to show where the main facts being reported have been drawn from.

I hope its of some help

My thoughts are to skip those guidelines. Reason being that the more BS we post, the more that real information gets diluted.

Plus, to a real patient, reading that is somewhere on the annoying spectrum. Maybe depressing as well, to remind us of a lack of progress and that the topic was anchored years ago.