My experience with most ME/CFS projects (including my own) is that they’re usually done in a kind of ad-hoc, seat-of-the-pants manner, but HealClick is a horse of a different color. Long-time ME/CFS patient Joey Tuan had a vision, enrolled developers in it, and ultimately put together a team whose professionalism is evident in the site.
HealClick is one of the most interesting and potentially helpful patient-oriented online project that I’ve seen to date. Think of it as a Forums, Facebook, and PatientsLikeME type site smushed together.
You can post about topics. You can review treatments. Most importantly you can, for the first time, easily find patients with a similar set of symptoms and see what worked for them.
It’s a new approach to talking and learning about illnesses and it was put together by someone with ME/CFS. It’s kind of amazing.
Let’s check out HealClick.
The Forum/Facebook Section – clicking on the Home tab brings you to the conversations page.
Seeing Treatment Reviews or Topics – HealClick has a nice feature that allows you to bring up either treatment reviews that have been posted by people with ME/CFS, or topics they’re talking about in the Forum/Facebook section, or both.
Freedom from Fibro Summit Encore Weekend – Watch Any Presentation
Watch any of the 40-plus presentations from Dr. Murphree’s Freedom from Fibro Summit for free this encore weekend. If exploring alternative health options is something for you – or if you just want to explore what’s out there – Dr. Murphree’s Summits provide a great overview of the possibilities this large field of medicine presents.
The Summit provides simple techniques to reduce pain and anxiety, provides updates on the latest research, diet options (one of which has helped me greatly), ways to boost energy, the latest on fibromyalgia research (my presentation), etc.
Click here to check out the encore weekend and here to see a prior blog on it.
Searching – A nice search box makes it easy to search for topics within those conditions. I love the fact that I can quickly veer into secondary topics I want to check out from time to time, such as Postural Orthostatic Tachycardia Syndrome (POTS) , multiple chemical sensitivities, and chronic pain. If HealClick succeeds, a huge database of information and conversations will be at our fingertips.
Posting Something – If you want post something, just click on ‘Say something’ (nice touch), pick your condition, and then choose the section you want to post in. The sections aren’t as fine-grained as you see in the Forums; there’s only one Treatment Forum, for instance, but the process is quick and easy. HealClick is a gas to use.
Signup for HealClick here
Finding Your Match
The really exciting and perhaps revolutionary thing about HealClick is its ability to quickly match patients with similar symptoms to see what worked and what didn’t work for them. I’ve been thinking about this for years. We tried to produce this in Phoenix Rising several years ago, but our volunteer dropped out after a couple of months.
Our Story in 2 Minutes from HealClick on Vimeo.
No other site that I know of, neither PatientsLikeMe or CureTogether, automatically finds your individual match for you. There is a way to find a match in PatientsLikeMe but it takes time and is complicated, and you have to do it over and over again. HealClick automatically matches up patients who have the most similar symptoms; that’s a very valuable thing in a heterogeneous disorder like chronic fatigue syndrome.
With my non-flu-like onset, my MCS, my racing thoughts, my tight, burning muscles, my muscle pain after exercise, and my early wake times, I’m probably not anything like the fluey onset person with swollen glands who feels weakness but no pain and sleeps for 18 hours a day. There’s been no way for me to find my individual symptom match until HealClick came along.
HealClick has made it possible for you to always be aware of how much your symptoms match with others on the site. You can see, for instance, how much of a match you are with the person who recently reviewed ‘X’ treatment. If you see a strong match, you’re probably going to want to check out that treatment. (Note – it takes overnight for the system to match your data up; you’ll see your matches the day after you join. The matching process is also pretty raw right now and will evolve over time.)
This is a site that will only improve over time as more people sign up, add their symptoms, and review treatments that worked and didn’t work. As the volume of data grows, Joey’s team will be refining the algorithms that match the patients. Don’t expect a lot at the beginning – it’s going to take time both on our end and on Joey’s to get this right. I’ll definitely be checking in periodically to see what people like me are doing that works.
An important note – As stated above, the system processes overnight the data inputted during the day. You won’t get your matching results until the following day.
My Role at HealClick
Given that we’ll be opening a Forums at Health Rising, why am I promoting HealClick, and why will I be blogging there once a week? Because HealClick just might be the next big thing, and if it is I want to be on board. Joey has developed HealClick in a methodical and impressive manner. I encourage you to sign up for HealClick, get your data in there, and we’ll see what happens!
HealClick is a massive project and it’s going to need funding to fully realize its potential. If you like what you see and want to help out go to Indiegogo and help HealClick grow.
Thanks so much for sharing our story on here Cort.
I just wanted to point out about “Home”: it’s automatically filtered by your conditions. So if you have M.E., Fibromyalgia, and say Lupus, then the feed is automatically just for Topics and Treatment Reviews by patients with those conditions.
Then as you mentioned, the matching percentages takes this personalization a step further so you can sort by highest overall match.
The whole idea is that although most of our users have M.E., users without M.E. might not want to see anything from those users. This was our concept of getting autoimmune and neuroimmune diseases to share the same “feed” (i.e. facebook) while making sure they don’t get content from patients that have nothing to do with them.
Thanks for clarifying that Joey. Nice step 🙂
Wish to cancel my info on this site. Chatting wears me out. Can handle blogs. Did not know that was what site was about. Please cancel my membership to HealthClick. Not what I was looking for.
Also ask for too much personal info.
Hi Carol. Please email me at joeytuan@Healclick.com I don’t know what your username/email are so I can’t cancel your membership.
FWIW after a user signups up, we don’t require any info besides primary diagnosis. It’s totally up to you how much you want to share.
I went there and got some support and was able to encourage others~found out my intolerance of some supplements and most meds may be due to “leaky gut” but now how do I get better? That’s what we ALL need the most. In 26 yrs with chronic fatigue I haven’t found one single practitioner who has helped me much or knew much about ME. They all expect what works on most to work on me, and I have bad reactions to most of the adrenal and thyroid supplements plus ALL the new meds they’ve tried on me in the past few yrs! I’m feeling desperate! The depression is so terrible in the winter( last yr nearly killed me with 2 feeble suicide attempts) and this winter is even worse! It started in mid-Sept this time, this month I’m feeling hopeless again at times (about 1/2 of every wk, at least!) During the bad days I can barely function. I’m seriously considering trying Gupta, but just read about the Mickel program~which do you think is better? I like that the Mickel prog gives more scientific explanations…but then I like the fact that Gupta has tapes which I can listen to over and over if necessary. Wonder if I can find some “used” tapes?
Just wanted to be sure I get feedback if anyone answers~forgot to check the box!
Oh and the patient-matching should work immediately as of 5 minutes ago 🙂
If you don’t see anything it’s because they’re still being calculated. But yes, there’s a lot of room to grow to make it more accurate. We have a precise roadmap for how to get there: we just need everyone’s help to make it happen: igg.me/at/healclick
Nice to see this change in tack. I have been ‘at it’ since my daughter developed CFS/ME/lyme in 2006. Without support or even remote help from medicine, I vowed to find answers. It helped I have a medical background and have been an integrative health professional for almost 30 years – but that aside, I had to do this myself as most colleagues were floundering as badly as medicine was in this field.
Well, I did find answers and I do share. Every day, globally. Some via my facebook pages –
– and others via the website or in person. I have more facebook pages according to illness and needs but I think these best show what has been going on. I no longer am in active practice but am now helping many times more people globally than I ever could face-to-face. Some of my best cases have been the most difficult, those close to death with no hope. They now live active, healthy lives.
There are answers but I am afraid they all lie within an integrative field combination and I am glad to see such groups forming for the good of what is essentially an invisible community. Of course it’s not as easy as saying ‘take this’ or ‘do this’ as each case has its own set of puzzle pieces (as one in my network, and who has arguably been my biggest supporter, often says) and many have been brought suitably close to destruction by medical ‘care’ – needing med detox, removal of titanium type implants, environmental detox, mental health re-education and so on.
And sadly, 9/10 as you probably already know, do not want to hear what you can offer. This could be because they have tried everything, spent a fortune on promises that have left them no closer to a cure. But those who take the chance, follow the full protocol (you can see mine on my blog and tips on my facebook pages) inch closer to life daily. Those who have come through, then share their story – and sadly they too usually face aggression and closed doors.
The path is not easy but it is worth it!
I love, as always, your non-competitive spirit. It is all about the PWME with you!
You have my respect and admiration….and my gratitude!
P.S. Looking forward to checking out HealClick!
I’ve signed up although how much time I spend on HealClick will depend on how it develops.
I did though provide as much data as I felt might be useful to researchers who might want to ‘data mine’. That would be a major benefit compared to other forums and I’m sure some enterprising researcher could devise a suitable algorithm to pull out sub-groups or clusters.
Best of luck with it!
Thanks Marco! I think you speak for a lot of us. The “project” has really only begun. I consider us very much in a beta phase: we just moved to a public domain!
The major focus of our crowdfunding campaign is getting faster & more accurate matching, and developing easier ways to track data (mobile app). With funding I believe we can become an extremely useful medical tool for neuroimmune and autoimmune patients.
Cort I wanted to make clear:
The matches happen immediately when you sign up. It’s after you signup that it updates periodically.
Also, we’ve now added a much clearer way to sort topics from reviews on the home page. Check it out and let me know what you think !
I like it Joey. It’s clearer the way it is now 🙂
I hope your new site is a great success!
(I’m gathering it’s open to people over 40 now?)
And Cort, gosh, I don’t know how many more forums I can handle checking. But I will do my best to check your future forum once in a while.
I love the idea of Heal Click! But I can’t “name” my disease as easily since I’ve recovered from it. Originally it was FMS. With lots of mystery symptoms. Then added nerve dysfunction, and more immune dysfunction, leading to allergies, rashes, paresthesias, tremors, you name it.
It actually turned out to be dental amalgam mercury poisoning. So, I propose a new concept and naming effort that doesn’t silo symptoms based on where they occur in the body, but what causes them: an unlucky combination of genes and toxins, which causes inflammation, the root and common cause of chronic diseases.
I’d like to get feedback on the following:
CMINDS – chronic mercury immune and nerve dysfunction syndrome
ANDS – acquired (or amalgam) neurological deficiency syndrome
and others folks might suggest. there are many variations.
On HealClick, patients don’t have to select a condition. If you don’t see yours listed, you pick “Other” first, then we encourage you to click “don’t see yours listed?” and add it to suggest it. We’re keeping an ongoing tally of patients’ diseases to add them in a standardized way to our master list.
Can a doctor rating page be incorporated, we’re thinking about doing it in the UK with ME/FM FB friends?
We plan to add a way to list favorite doctors while protecting patients very shortly.
We’ve held off on it thus far due to concern that doctors will sue our patients for negative reviews, and we wanted to shield our patients from that.
Whoa, HealClick is amazing!
I’ve quit every “forum” I’ve joined pretty quickly, but this one is very well designed! It’s already so much better than most chronic illness forums. Bravo.
I really look forward to seeing what comes of it.
Thanks so much Cort, for all you do. You’re a rock star.
Cool. Thanks to Joey to creating such an innovative site 🙂
Thanks Lucia! It’s been a pleasure getting to know you these last few days.
My video update: http://www.youtube.com/watch?v=jvU99aka1Mw
I’m always happy for any new approach or effort toward making advancements for patients. Is there a way to peruse what the site has to offer without signing up first? [I am very cautious with my privacy and it takes me a while to trust a site enough before signing up – we have to be this way in our world today, even for the best sites. I’m also signed up to a ton of sites already, so I like to add only what really fits me.] So I’m really happy this exists and would like to lurk around it for a few months before having my own account – it sounds like the kind of thing I would eventually want to be a part of. But when trying it look it up, I saw only a log in page, and a blog page. I wanted to look through the more unique things the site has to offer, like the match page (just to see what kind of things they ask – I get that I’d have to sign up to use it), and treatment reviews. I’ll be honest, I’m not going to give out my email and info before I even get into the site to see what it’s like. I want this site to be successful – it could be a goldmine of for future cures if a lot of people eventually sign up and contribute info on their personal symptoms and expression (not to mention share reviews of doctors!). So am I missing something? Is there a way to search around what the site has to offer (other than the blog articles, which every site has), before signing up? In support of the struggle for all of us, Sunshine
We intentionally made the site private until we can figure out how to make the content discoverable without revealing usernames, pictures, and profiles. This actually hurts us with respect to getting traffic.
Here are a few mockups:
What the feed looks like: https://www.dropbox.com/s/byc0j4b0d4kwgpg/best%20match.PNG?m=
What my treatment tracking page looks like:
If you want a username/pw we use for demos, please email me at firstname.lastname@example.org
Sorry that was an old screenshot. This is what the feed really looks like now:
I’m not sure that I am clear on what exactly the goal of HealClick is and also not sure how it’s to be utilized. Would you address this one more time? I did complete the survey, made a comment re: adding “secondary” to types of hypothyroidism to designate HPA-axis dysfunction, and took note that spondylosis was among the diagnoses to choose (which I found of interest as I had 2 cervical neurosurgeries in 2012 due to stenosis (calcification) of the interior of my vertebra which were subsequently squeezing down around my spinal cord). How many others besides myself might there be and is this info of value to researchers?
I thought this survey would be for compiling similar symptoms to be available to researchers perhaps searching for sub-sets as this seems to be the idea….. that they would find differing sub-groups of patients. If only 1,000 patients would enter the survey questions then that alone would give some level of interpretive result and in time would further quantify and qualify….. We would, however, need to be individually notified of updates in the survey questions needing re-completion. Can this be done? Says the computer ditz.
I want to say that the concept of having a patient survey such as HealClick….. which has JUST begun…. is in it’s infancy and can be fine-tuned in the future I’d like to think…. has ENORMOUS MERIT AND POTENTIAL. I do not intend to “chat” with people per se because I never do such but would like to hope that it will BECOME A RESEARCH TOOL in it’s own right by the ?collating of the various diagnoses and symptoms. If this is not the intent of this site, then I’d have no use for it myself. Hence my request for further exploration of the goal.
For those feeling invasion of privacy, consider assigning numbers as research has done. I DO want to see how many people would have, for example, active viruses and degeneration of their vertebrae. I DO WANT THE POWER OF OUR SURVEYS UTILIZED FULL FORCE HERE. WE CAN TALK LATER AND ELSEWHERE. Please.
marcie myers, BSN, patient advocate.
I responded to you via email but pasted here in case others are wondering the same:
“Yes, we plan to use everything from our tracking system for research. We have yet to identify the researchers we will work with, but multiple discussions are taking place.
The matching with other users is a feature (although it’s our main one). The research is the ultimate goal.”
Do you make the distinction between Chronic Fatigue Syndrome and Myalgic Encephalomyelitis?
We technically call it “ME/CFS” on the site. In an ideal world, I would call it M.E. as I have in all my interviews and videos to reinforce it. But a lot of patients still don’t look for tools for ME/CFS based on ME so we had to include it.
With that said, I despise the name Chronic Fatigue Syndrome. I think there’s Chronic Fatigue and then there’s M.E. but that’s just me.
Just wanted to send a special thank you to Joey
Tuan. Heal Click has been a wonderful addition to
my learning to cope with CFIDS/MCS. I have always appreciated the amount of information I could get from Cort’s site + now find that combined with Heal Click,
there is a growing, supportive + incredibly informative
community. Thank you for both of these endeavours—
I can’t imagine the countless hours Cort + Joey and your staff spend on making these resources available to all of us. BLESS YOU ALL — you are a true God Send to those of us with these conditions!
When I originally commented I seem to have clicked on the -Notify me when new comments
are added- checkbox and from now on every time a comment is added I receive
four emails with the exact same comment. Perhaps
there is a way you can remove me from that service?