Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid."

[Deleted member 2545]

Funny, I was thinking about it earlier today and decided to stop for the same reasons. I’ve just routinely been doing the free app thing but honestly, the patterns are things I am already aware of, have other data being gathered from my Apple Watch and I’m not currently changing anything in my management routine. So, one less thing for me to do.

I had the paid for armband and also stopped. I found it uncomfortable and logging symptoms tedious. I disliked the interpreted hrv algorithm score, which did not allow for false positive excessive highs which I experience in my pem. I get a direct overnight hrv off my smart watch the trend of which is predictable, once I learned to understand them. I now only track 3 things in a paper filofax.

 

[Fainbrog]

I had the paid for armband and also stopped. I found it uncomfortable and logging symptoms tedious. I disliked the interpreted hrv algorithm score, which did not allow for false positive excessive highs which I experience in my pem. I get a direct overnight hrv off my smart watch the trend of which is predictable, once I learned to understand them. I now only track 3 things in a paper filofax.

When I did the armband, it was a) a pain in the bum because the battery didn’t last more than a day and b) needed me to think a lot about the alert thresholds because my HR is too high just existing and was bouncing off the rev limiter just being sat on the sofa, let alone walking my sorry carcass to the loo or anything daring like that.

I get the idea of it, maybe if I was new to the illness and pacing, but, I feel like I’m a grand master of pacing so they got one month of subs out of me and that was it.

 

[MrMagoo]

I have the new band which lasts a week on a charge.

I agree the hrv daily score thing isn’t great, plus it’s being used now as some kind of authority on predicting crashes?

It still pays for itself for me when I can whip it out to show exertion in real time.

 

[Sean]

Maybe it is because I grew up in an analog world, long before any of this modern self-surveillance tech was available, but I just can't get into all this stuff. I just can't see the value in it. Maybe heart rate monitoring has some limited value. Maybe. But if we don't have any clear biomarkers yet, like diabetics do for example, then what is it we are monitoring?

It all just seems like a dead end to me, at this stage.

 

[MrMagoo]

Maybe it is because I grew up in an analog world, long before any of this modern self-surveillance tech was available, but I just can't get into all this stuff. I just can't see the value in it. Maybe heart rate monitoring has some limited value. Maybe. But if we don't have any clear biomarkers yet, like diabetics do for example, then what is it we are monitoring?

It all just seems like a dead end to me, at this stage.

Thresholds.
You know like you pace so you don’t “overdo it” well we no longer need sessions with an OT telling us we’ve been overdoing things if we’re tired (silly us!) or reams of rehashed “how to pace” guides.

The whole thing has been automated for us, giving a second by second account of how draining it is for us to, say, sit and listen to an OT blather on about doing things, but not too many things, after 5 minutes sit down, but not for too long etc

I just like having the actual specifics. No more vague “you’ve overdone it” blame, no I haven’t and I’m still tired, guess what it’s the nature of ME.

 

[hotblack]

I did my own versions of a lot of what visible does earlier in my ME/CFS journey (logging activity, tracking steps, heart rate, hrv, etc) but stopped. What I learned was useful but as an ongoing thing it wasn’t.

I also have some concerns over visible themselves. These sort of companies usually cash in at some point, that means selling up to another outfit (often a tech or health company) and profiting from the data collected. Data which in this case sick people are often paying a lot to give them. They may have a good founders story to tell, but that’s just part of the pitch and pattern. Maybe I’m being too cynical but we’ve seen it many times.

 

[Chandelier]

Posts moved from CrunchME thread
--------------------

He’s also behind visible and a dodgy study using visible HRV stats with all sorts of methodological problems including an especially bad case of non blinding. (ie. showing the participants their HRV in the morning, telling them they will have a good/bad day based on it, asking them how their day went in the evening. And using that as proof that HRV correlates with…)

Page by Elke Hausmann | @drelke.bsky.social

For information for all Visible users, the clinical trial ‚Balance Acceptance and Commitment Therapy for Long Covid‘ is run by Trudie Chalder. So, is the question now: is #LongCovid a state of mind??

skywriter.blue

Elke Hausmann​

@drelke.bsky.social
For information for all Visible users, the clinical trial ‚Balance Acceptance and Commitment Therapy for Long Covid‘ is run by Trudie Chalder. So, is the question now: is #LongCovid a state of mind??

 

[Chandelier]

Page by Elke Hausmann | @drelke.bsky.social

For information for all Visible users, the clinical trial ‚Balance Acceptance and Commitment Therapy for Long Covid‘ is run by Trudie Chalder. So, is the question now: is #LongCovid a state of mind??

skywriter.blue

Seems to be not as bad as thought:

This is disturbing, so I messaged them about it, and this was the response I received.

'The clinical trials shown in Visible are automatically and programmatically pulled from clinicaltrials.gov, the international registry for medical research. Before a trial is listed there. it must be reviewed and approved by ar independent ethics or institutional review board, whose primary role is to ensure participant safety and ethical standards. Because these safeguards are in place, we don't remove or re-evaluate trials ourselves. Our small team doesn't have the capacity to independentlv review and filter every trial in addition to these boards. If we tried, we would have to stop showing trials altogether, which we believe would take awav a valuable resource. Instead, we make all approved trials accessible so people can see what's available and decide what feels relevant for them That said, if vou have concerns about a particular study, the best route is to raise them directly with the research team or the review board responsible'

 

[Eleanor]

The clinical trials shown in Visible are automatically and programmatically pulled from clinicaltrials.gov [...] Our small team doesn't have the capacity to independentlv review and filter every trial in addition to these boards. If we tried, we would have to stop showing trials altogether, which we believe would take awav a valuable resource.

Then they should make it clear in the part of the app which highlights and promotes these trials that "our small team" aren't endorsing these trials and that they may involve risk.

So sick of people using automated technology as an excuse to avoid responsibility.

 

[Yann04]

Then they should make it clear in the part of the app which highlights and promotes these trials that "our small team" aren't endorsing these trials and that they may involve risk.

So sick of people using automated technology as an excuse to avoid responsibility.

I thought this part of the message was disappointingly pseudo-gaslighty and „damage control“ PR.

Before a trial is listed there. it must be reviewed and approved by ar independent ethics or institutional review board, whose primary role is to ensure participant safety and ethical standards. Because these safeguards are in place […]

Like if you‘re working with pwME you know that this doesn’t prevent bad trials at all.

[BTW these last few posts should be moved to the visible thread]

 

[Chandelier]

Response from Visible‘s CEO over on Reddit:

Posting on behalf of Harry founder of Visible as he wasn’t able to post for some reason:

Hi everyone, Harry here - founder of Visible. I want to clarify a few points raised in the post above and give some more context about what happened and how we’re responding.

The clinical trials shown in Visible are automatically pulled from http://clinicaltrials.gov/, the international registry for medical research. Depending on your location and conditions, you may see hundreds of trials or none at all. The comment above refers to one trial.

One piece of context that’s missing is that any trial listed on http://clinicaltrials.gov/ has been reviewed by an independent ethics or institutional review board. Their role is to ensure participant safety and that ethical standards are met. Because these safeguards already exist, we made the decision not to remove or re-evaluate trials ourselves.

We’re a small team and don’t have the capacity to independently assess every study on top of what these boards already do. If we tried, we’d have to remove the feature entirely, which we believe would take away something valuable for people trying to understand what research exists.

Instead, we show all approved trials so people can see what’s available and decide what’s relevant for them.

We also make it clear in the Visible app that these trials are not endorsed by us, and users must confirm this before they’re connected to a researcher. I hope this helps explain why this trial appears in the app among many others and why we aren’t in a position to evaluate each one individually.

It’s something we offer for free to researchers and participants, and we built it because we felt it was aligned with our mission to drive our understanding of these conditions forward. We’ve already connected 1,000s of patients with researchers, and we’re excited about the potential of this feature to fast-track treatments for these conditions.

If concerns continue, we will consider turning off the clinical trial feature globally.

EDIT: To clarify, he had a techincal issue that was preventing his attempted post from posting

 

[Eleanor]

We also make it clear in the Visible app that these trials are not endorsed by us

It's not clear at all. It isn't stated on the page where the list of trials is advertised. You have to click an 'i' in a circle and go through to a different page that gives the information - and how many people will want to do that or know that they need to?

This is the same issue I had with the Visible app incorporating a 'coherent breathing' function which they promote as a treatment. There's a tiny disclaimer you can eventually click through to find that says you shouldn't do it if your FUNCAP is 2 or lower. But you don't see this warning at any point during the process of being prompted to do the exercises.

 

[Utsikt]

They are using their platform to direct their users to researchers. Of course they have to take responsibility for unintended negative consequences of that feature - like driving patients into the arms of their abusers.

One piece of context that’s missing is that any trial listed on http://clinicaltrials.gov/has been reviewed by an independent ethics or institutional review board. Their role is to ensure participant safety and that ethical standards are met. Because these safeguards already exist, we made the decision not to remove or re-evaluate trials ourselves.

They have to be living under a rock if they think the ethical reviews are going to stop outright harmful studies. Excuses, excuses, excuses..

 

[MrMagoo]

I could actually believe they didn’t realise the danger.

 

[forestglip]

We’re a small team and don’t have the capacity to independently assess every study on top of what these boards already do. If we tried, we’d have to remove the feature entirely, which we believe would take away something valuable for people trying to understand what research exists.

If concerns continue, we will consider turning off the clinical trial feature globally.

Seems reasonable to me. Patients already go on ClinicalTrials.gov, where they'd see all these studies. This just filters it to relevant studies for their condition to make it easier.

Is this kind of study even more harmful to a patient than something like a 2-day CPET study? Should those also be filtered out?

I haven't looked at the app, but maybe a clearer notice that these are direct from ClinicalTrials.gov and unfiltered would make sense. Or just removing the feature altogether, as they've said they'll consider.

Edit: Removed a sentence.

 

[SNT Gatchaman]

Rather than remove the feed altogether, maybe they could add a community vote up/down feature. Below some threshold a study could fade out or have a warning symbol, or just not be displayed unless specifically filtered on by the individual user.

 

[Yann04]

Or just simply add a disclaimer. It’s not that hard.

This would all be fine if they had a visible (*smirk*) disclaimer saying they don’t endorse the trials listed and that exist are predatory researchers.

 

[Chandelier]

Statement on the website:

A note about our Clinical Trials feature

www.makevisible.com

A note about our Clinical Trials feature
DECEMBER 6, 2025
•
4
MIN
‍

As someone living with one of these conditions, I founded Visible to help move our understanding of under-researched chronic conditions forward.

Our Clinical Trials Near You feature, which we launched 3 months ago, is a part of that mission and one aspect of the Visible app that I’m most proud of.

I want to provide more context on why the team at Visible built this feature, where the information comes from, and how we think about our role and responsibilities.

Why we built this feature​

Recruiting participants is one of the biggest practical challenges in clinical research. Researchers often struggle to find and enroll eligible participants, and many people who want to take part in studies don’t know what’s available or how to access opportunities that might be relevant to them.We built Clinical Trials Near You to help solve that: making it easier for people to discover studies they may be eligible for, and helping researchers connect with participants more efficiently. We offer this feature for free globally to researchers and participants because it supports our mission to drive understanding forward and accelerate progress.

We’ve already connected 1,000s of patients with researchers, and we’re hugely excited about the potential of this feature to help speed up research and, ultimately, improve treatment options.

Where the trials in Visible come from​

The clinical trials you see in Visible are automatically pulled from clinicaltrials.gov, the international registry for medical research. Depending on your location and your conditions, you may see hundreds of trials or none at all.

Importantly, any trial listed on clinicaltrials.gov has already been reviewed by an independent ethics committee or institutional review board. Their role is to ensure participant safety and that ethical standards are met.

Our role and responsibilities​

Visible’s clinical trials feature is only possible because clinicaltrials.gov require independent ethics approval for each study. Without those safeguards and the oversight of IRBs, we wouldn’t be able to offer this feature, certainly not at a global scale or free of charge in a way that aligns with our mission.

As a small team, we don’t have the capacity — or the mandate — to independently evaluate each study in addition to the work already done by these boards. Creating our own review process would require us to operate as a parallel ethics body and apply our own standards across hundreds of trials, which isn’t feasible or appropriate.

For that reason, we’ve chosen to display all trials that have been approved and registered so people can see what’s available and decide what’s relevant for themselves. We also clearly state in the Visible app that these studies are not endorsed by us, and users must confirm they understand this before being connected to a researcher to request further information.

Selective removal or inclusion of studies would mean replacing the judgment of the independent review boards responsible for participant safety with our own. If we start removing individual trials, we open the door to decisions that could become subjective or unevenly applied, and it would place us in a role that belongs with established ethics review bodies. That isn’t a role we can or should step into.

I recognize that this may be frustrating to some members. When we face difficult decisions, we look to our mission — advancing understanding of these conditions — to guide us. We believe that presenting all clinical trials is consistent with our mission and provides the greatest long-term benefit for everyone. The only alternative would be to remove this feature altogether, which we do not wish to do, given our ultimate goal of fast-tracking treatments.

We’ll keep listening and continue improving how we present trial information (including making it easier to report trials directly to review boards), and being as transparent as possible about why we make the decisions we do at Visible. I take our responsibility to the patient community deeply seriously, and I hope this blog post demonstrates that.

If you have questions about this feature that I haven’t answered, you can reach our member support team in the Visible app; they’ll always reply, or contact me directly at harry@makevisible.com.

Author
Harry Leeming

 

[MrMagoo]

Statement on the website:

A note about our Clinical Trials feature

www.makevisible.com

Basically the same disclaimer.

I know I Stan Visible but I really think they’re a bit….pollyanna. They are IT people with LC. They added a research feed feature, it pulls data from a dot gov website, that’s nice, what could possibly go wrong?

I think this might be the first difficult political thing they’ve had to tackle.

 

[Utsikt]

I recognize that this may be frustrating to some members. When we face difficult decisions, we look to our mission — advancing understanding of these conditions — to guide us. We believe that presenting all clinical trials is consistent with our mission and provides the greatest long-term benefit for everyone. The only alternative would be to remove this feature altogether, which we do not wish to do, given our ultimate goal of fast-tracking treatments.

As people in tech, they should really know that the purpose of a system is what it does. Not what it’s intended to do.

They are lending their brand, their platform and their technology to the researchers, indiscriminately. Wether they like it or not, Visible will be associated with the researchers, and they researchers will be associated with Visible.

Hiding behind ethical approvals is not good enough, and if it’s not feasible to vet the studies, they at least have to acknowledge that they will be directly contributing to patients being harmed because the patients would not have come into contact with the researchers without the intervention by Visible, and that they consider the benefits (primarily faster recruitment to good studies) to be greater than the costs.

Although with the ethical and moral duty to first, do no harm when you’re in the field of healthcare (which they most definitely are), it could reasonably be argued that the costs are not acceptable.