HealClick.com: New Patient Community Seeks to Turn Patient Sharing into a Tool for Research

Joey Tuan, Beth Mazur, and Cari Allshouse have launched a project to bring ME/CFS sufferers together, and to gather data for future medical research. This is exactly what the community needs - a way to find a "buddy," and a secure means of gathering medical data.

There are only 9 days left to fund this ambitious project. Click HERE to donate.

___________________

Reprinted with the kind permission of HealClick.

By Emily Craven

By the time I was 25, I’d already been sick with Myalgic Encephalomyelitis (M.E.) for four years, had seen nearly two dozen doctors, had to quit my dream job, and moved back in with my parents. One day, on a rare coffee shop excursion, an old friend asked me, “What do you do about an illness with no recognized treatment?”

It was a good question. I explained that I’d been combing patient forums and online message boards. I was slogging through endless posts, weighing anecdotes about treatments relieving or inflaming symptoms, despite having no way to know if the person posting and I reacted similarly to such treatments. “I spend a lot of time banging my head against the Internet,” I told my friend; I truly felt isolated and helpless.

An Ambitious Endeavor

Enter Joey Tuan, Bath Mazur, Cari Allshouse, and their new startup, HealClick.com. The founders set out with two objectives: 1) To make it easier to find relevant patient-shared information, and 2) To use this information to further medical research.

Launched last month, HealClick is a revolutionary free platform that connects patients with chronic illness from all over the world. This hybrid of a social network and an enhanced medical forum uses volunteered symptom and treatment information to match members with similar users, while at the same time building a confidential database to be used for research. It serves over 20 autoimmune, neuroimmune and other poorly understood illnesses. The ultimate goal is to turn amassed patient experiences into research-friendly data that will yield treatment solutions.

“If we can arm ourselves with a database that truly captures our health over time, we can then present M.E. and other poorly understood conditions as problems worth solving to the researchers, backers, and philanthropists that can help us solve them,” says co-founder Joey Tuan.

Since the January 14th launch, 1294 patients have joined HealClick. Combined with the 900-plus beta users who shared their experiences prior to the launch, the site now has over 2200 members. Together they have already generated 2247 treatment reviews.

Finding Our Patient “Doppelgangers” and Getting Answers

HealClick makes it possible to not only get information about your illness directly from other people who have your diagnoses, but also to learn who these people are and what their health and treatment experiences have been like. Using matching technology analogous to dating sites HealClick creates a “similarity score” between patients. It uses each member’s symptoms, diagnoses and treatments to suggest other members that are health-compatible based on their input. In addition, the site boasts a number of traditional social networking features, such as chat, personal messaging and detailed profiles, making it easier for members to get to know each other. There are also innovative variations of social networking features such as the ability to mark a post as “helpful” and to send other members “LUV” (support) for posts and comments. The result is a light-hearted, supportive community that lessens the isolation of being chronically ill.

HealClick also sets itself apart from other patient forums with its ease of use and by serving numerous diagnoses. First, highly-sought treatment reviews are in a dedicated section instead of buried among endless posts. Second, users with over 20 autoimmune and poorly understood illnesses can easily discuss their treatments and coping strategies for common symptoms, such as nausea. This information would typically be scattered across more than 20 separate diagnosis-specific forums. Discussions can also be sorted into categories for one diagnosis only, making it adaptable to the user’s needs.

Building Technology to Collect and Prepare Data for Research

The HealClick team recently launched its Indiegogo crowdfunding campaign in order to develop the components necessary to collect data and make it research-ready. “If we raise just $50,000, we can build a state-of-the-art website to help millions of patients,” Tuan said.

Among the features slated for development are an integrated mobile health tracking app and upgraded servers to sustain HIPAA-level encryption of the patients’ data. The team is also working on refining the matching process through the addition of standardized lab results and natural language processing.

As a patient, I’m very enthusiastic about an easy-to-use tracking app, one which will allow me to daily track my symptoms and treatment by answering a few simple questions. In addition to tracking my own health, the data collected by this app can be anonymized and made available to researchers to identify correlations and patterns over time. The idea that I will be able to contribute data for desperately-needed research from my bed is particularly exciting. Many chronically ill patients together could change the course of research for their conditions simply by clicking on a few answers each day.

Ultimately, HealClick strives to empower patients by designing the tools for them to educate each other and to directly participate in research solutions.

To join: www.HealClick.com

To support the fundraising effort click HERE.

____________________

Emily Craven is a former domestic violence advocate and Reed College graduate. Prior to becoming ill she was an avid traveler and passionate about education. She has severe Myalgic Encephalomyelitis and has been battling the invisible illness since 2002.

Chronic Fatigue Syndrome Patients Feel Increasingly Isolated

Source: Female First, 20 September 2013

By Taryn Davies

Sufferers of Chronic Fatigue Syndrome (CFS) are feeling increasingly isolated due to their family and friends’ lack of understanding of their condition, a study has revealed.

The study, carried out by talkhealth, one of the UK’s leading online social Health communities, revealed that a massive 70 per cent of CFS sufferers felt that their family and friends did not understand their condition and appreciate the effect it had on their lives.

Furthermore, nearly half of the respondents felt that their condition had not been taken seriously by a medical professional, adding to their feelings of isolation.

The study showed that the top five most common symptoms experienced by CFS sufferers are tiredness after exertion, un-refreshing sleep, muscle and joint pain, chronic physical exhaustion and cognitive difficulties such as memory loss.

Dr Jon Rees, a spokesperson for talkhealth comments:

"Chronic fatigue syndrome is something I see surprisingly often as a GP. It is an extremely frustrating condition not only for patients who often feel that their problems are not taken seriously but also for relatives and friends who may struggle to understand a condition that has no outward signs of physical illness. Patients may also experience cynicism from some people in the medical profession including doctors, who do not recognise CFS as a true medical condition. However GPs are increasingly realising the true impact of the symptoms and are better equipped to offer support and onward referral to specialist services."

Dr Rees continues:

"It is vital that patients receive adequate support as CFS can have a huge impact on their quality of life. They must be fully assessed for any underlying cause that can be treated, such as underactive thyroid or coeliac disease but if no cause can be identified and the symptoms are significant, referral to a specialist chronic fatigue service can often be useful."

Chronic fatigue syndrome (CFS), affecting 250,000 people in the UK, causes persistent fatigue (exhaustion) that affects everyday life and doesn't go away with sleep or rest.

The condition is also known as ME, which stands for myalgic encephalomyelitis. Myalgia means muscle pain and encephalomyelitis means inflammation of the brain and spinal cord. Both CFS and ME are commonly used terms.

YOU ARE NOT ALONE

First published on ProHealth as "You Are Not Alone." 

One of the harshest punishments that CFS/ME inflicts upon its sufferers is isolation. Human beings are social animals, and we do poorly when placed in situations that remove us from contact with other people.

Isolation is not the same as loneliness. Loneliness is an emotional state, the result of feeling alone, even when other people are present. Isolation is a state of being prevented from interacting with other people. The distinction between the two terms may appear to be a fine point, but the crucial difference is that isolation is usually imposed upon us. 

Of course, there are those who voluntarily remove themselves from society, but these people – recluses – usually are content with their state of separation from the world. Why? Because they have chosen it. When people don’t choose to be isolated, when it is forced upon them by circumstances beyond their control, it is unbearable. This is why solitary confinement is the ultimate punishment for inmates in prisons. It puts people in a state of complete helplessness.

The Center for Constitutional Rights considers solitary confinement to be a form of torture – a violation of the Eighth Amendment’s prohibition of “cruel and unusual punishment.” Prisoners who are placed in solitary confinement, even for a few weeks, experience “increased anxiety, nervousness, headaches, nightmares, fatigue, obsessive ruminations, confused thought processes, mood swings, depression, memory lapses, confusion, problems with impulse control, paranoia, feelings of overall deterioration, and thoughts of suicide.” These prisoners, by and large, were healthy before being placed in solitary confinement. Imagine how this type of isolation would affect a population that is ill.

People with CFS/ME don’t have to imagine the consequences of solitary confinement on an ill population. Those who are severely ill experience the torture of solitary confinement on a daily basis. The four walls of a bedroom, for months, years on end, can feel exactly like a prison cell. In effect, it is no different from a prison. Whether your jailer is the judicial system, or the unpredictability of an illness, the result is the same.

Much like prisoners in a penitentiary, people with CFS/ME feel themselves to be stigmatized, rejected by society, ignored, dismissed, unable to fit in. Even among those who can get out and about, CFS/ME is profoundly isolating. The illness is their “dirty little secret,” something they can’t talk about for fear of being labeled as “defective.” When they do dare to bring up the topic, they inevitably become objects of misplaced advice (“You should work out!”), psychologizing (“Were you abused as a child?”), false sympathy (“I’m tired, too…”), and all the other well-intentioned but ultimately distressing comments that anyone with CFS/ME dreads having to respond to.  If you combine this social minefield with the physical limitations imposed by CFS/ME, and then add the very real fear that the illness will result in the loss of a job, or a spouse, or friends, the isolation becomes complete, for now it exists not just in daily life, but projects itself into the foreseeable future ... for all time.

Breaking the Chains of Isolation

According to Dan Moricoli, founder of the ME-CFS Knowledge Center, there are 24 million with CFS/ME worldwide. Other estimates place that number at a more conservative 17 million, but any way you measure it that’s a lot of people. It’s also cold comfort.  Simply knowing that a lot of other people have this illness can’t help you break out of solitary confinement - or can it?

The fact that so many people are experiencing – right this very moment –  exactly what you are going through is not a comfort unless you also realize that they, like you, are seeking break the bonds of isolation. They are tapping a code on the walls of their cells, hoping someone will answer. Tap back and you may find that with the right co-conspirators, you will be able to tunnel your way out of jail.

These are some of the ways people with CFS/ME have connected with one another.

Support groups: Back in the day when dinosaurs roamed the earth, support groups used to meet in person. There still are support groups that have regular face-to-face meetings. But there are also a slew of groups that meet online. How do you find one? You can simply type in the words “facebook” and “chronic fatigue” into a google search. Many support groups not only have Facebook pages, but websites. State and national CFS/ME organizations also keep lists. Find these organizations HERE.

Buddies: Having a buddy to talk can be a real lifesaver. A CFS/ME buddy is someone who is also ill, and who you can compare symptoms with (“I have this strange prickling feeling in my feet. Have you ever had that?”), who you can talk about treatments with (“Have you tried D-Ribose?”), who you can commiserate with (I’m having a bad day), or celebrate with (“I’m having a good day!”), and someone with whom you can simply feel as if you don’t have to keep up appearances. Just one person who really gets it can make a huge difference. (And that person could be you!) You can often find a buddy through a support group or meet-up. But sometimes they just appear, like ports in a storm. Once you start looking for friendship, it comes knocking.

Forums: There are several excellent, longstanding forums where people come to exchange ideas, talk about the latest news, chat, and generally feel welcomed into a community: ProHealth, Phoenix Rising, Hawkes’ Health Forum, Not Crazy, ME-CFS Community, and ME/CFS Forums are among the best. Forums are great because they are organized into topics, which allows you to focus on whatever area interests you.

Yahoo Groups: It is surprising how many yahoo groups there are for people with ME/CFS. If you do a google search on “Yahoo Groups” then, once you are in the directory, type in “chronic fatigue” or “Myalgic Encephalomyelitis” in the “Find a Yahoo Group” bar, dozens of groups will pop up. Many of these groups are local, that is they are meant for people who live in a specific city or region. Yahoo groups are not just a good way to connect with people, they keep you informed about the latest news in the CFS/ME community.  

Meet-ups:  Meet-ups are local social groups that share a common interest. Like old-fashioned support groups, meet-ups get together in person. There are 115 CFS/ME meet-ups in 8 countries. 

Blogs: ME/CFS Blogroll is a list of over 300 CFS/ME blogs started by Elisa, a longtime ME/CFS advocate. In her words, “It helps with the isolation - to "hear" all our voices and views and it gives me hope to find help... and to feel better, some day!” I couldn’t agree more. It is very liberating to read a blog post that expresses precisely how you feel. What’s more, you can always leave a comment, or start a blog yourself. Expression is a safety valve for the frustrations of “down time.”

Helplines: Many CFS/ME organizations provide helplines. These are usually staffed by volunteers and are meant to help people with CFS/ME find support groups, local physicians who may be receptive to patients with CFS/ME, legal help for obtaining disability, and other sorts of assistance. Although much of this information can be found online, it is nice to talk to a person who is helpful and sympathetic.

Don’t give up on finding fellow inmates! 

You are not alone.