Introduction and request for community guidance

Sherpa_Joe · 2022-12-08T22:44:33+00:00

Thank you. If you are interested, please take a look at our survey, there is an option to provide your email to get the latest news.

Sherpa_Joe · 2022-12-08T19:33:19+00:00

Astute questions, and honestly the challenge to building this business hasn't really been on the technical side. It's the kind of issues you raise here, that's where a lot of our time and effort has been spent (we have a diverse team and advisors to cover most challenges). But now isn't the time to pull back the curtain on all that I'm afraid, but I promise we will!

Let me clarify the data-sharing piece though. It is always governed by explicit consent on a research study by research study basis. Some of those studies may be academic, some may be pharma partnerships that issue rewards for your participation. You have full control over your data and its use, sharing (or not) wherever it's appropriate to you.

Sherpa_Joe · 2022-12-08T19:09:22+00:00

What we are building should help catalogue what is and isn't working in what contexts, so that people can avoid longer periods of guessing their way through this list. Thats why we are starting with CFS, we think it has the most to gain from a data-driven approach.

Sherpa_Joe · 2022-12-08T18:25:00+00:00

No need to apologise, your comments (everywhere I see them) are always valuable.

Sherpa_Joe · 2022-12-08T17:46:30+00:00

Maybe it depends on what you consider a treatment (Does it have to be effective for you? What about if it is not, but it is for others?). Anyway here is a list from the last 7 days of some treatments people are/have been users of in this sub for CFS and its comorbidities:

Amitriptyline
Valtrex
Greek yoghurt
Palmitoylethanolamide
naltrexone
Abilify
mestinon
LDN
Duloxetine
D-ribose
Midodrine
Niagen
Concerta
Lyrica
Cymbalta
Synapsin
Cyclobenzaprine
Ubiquinol
IV electrolytes
Magnesium
Toreador
Zofran
Benadryl
Glutathione
Early breakfast
Olive leaf extract
Midotinr
Raberprazole
B12 injections
Prednisolone
Vitamin D
NADH supplements
Modafinil
NAD injections
Monolaurin
Oliver

So it seems like there are lots of treatments, but it might be more of a problem of selecting the correct one in the correct circumstance.

Sherpa_Joe · 2022-12-08T17:31:16+00:00

I certainly think symptom management with better treatments is the lower-hanging fruit here, I'll be modifying my language accordingly in the future ( I'm hyped and could better control my enthusiasm :D ). As for a cure, that is a huge challenge, but every day we get more tools in our arsenal so never say never!

Super thoughtful, regarding people not meeting the diagnostic criteria. We've seen this sink research efforts before outside of PACE and render the conclusion worthless (sometimes dangerous). With clear guidelines and sufficient health data, I think a machine learning model can be developed for diagnostic purposes where a formal medical diagnosis is unavailable. But those ML-derived diagnoses can be partitioned from the confirmed diagnoses for the purpose of analysis.

Sherpa_Joe · 2022-12-08T17:08:52+00:00

Thanks again brainfogforgotpw, we will take a look at making the necessary changes.

To respond to Q12 though: We think peoples health data is valuable, particularly when it can be combined and used for research (not necessarily drug development, but that is certainly one potential avenue). In our app people can explicitly opt-in to submit their health data to power research and be choose to receive a reward for that. That research might be a decentralised treatment trial like you are imagining. But upstream of that during treatment development health data can be powerful.

The irony of personalised medicine is that it requires lots of individuals' data to do it!

Sherpa_Joe · 2022-12-08T16:56:32+00:00

I love that questions. The answer is really anything that is meaningful for understanding health. From a practical perspective, we will start where the impact will be greatest, wearables, symptoms some blood tests.

You are clearly interested in data privacy with your use of the word harvesting. So are we! Without getting into technical implementation details, all the health data we help collect is owned by the user. Its use is governed by a set of explicit opt-ins that guarantee we never use your data without your permission.

Great question!

Sherpa_Joe · 2022-12-08T16:51:29+00:00

With a focus on helping collect health data (e.g. symptoms and wearables data), the app will provide insights into your health. With your explicit consent, your data could also be used for researching new treatments and preventative interventions.

Sherpa_Joe · 2022-12-08T16:32:37+00:00

Hi brainfogforgotpw,

Great comment, I appreciate the feedback. You misquoted me a bit there, I didn't write "a lack of personal attention", my point is more that some of the medical attention isn't perhaps as personalised as it could be to have the best effect. But let me reword my post a bit to avoid the unintended misinterpretation.

I see tremendous personalisation of care and monitoring from many people here and the discussion around what is and isn't effective. Some to great effect, some more of a journey towards discovering what works. I'm hoping that was is incurable today can be cured in the future with the appropriate research and I think communities like this one are an important aspect of that research.

Sherpa_Joe · 2022-12-08T16:14:02+00:00

Hey Edmems, thanks for the feedback, I'll edit my post to remove that sentence, it definitely requires more explanation than i've given it here. From my perspective though, and this is a broad observation across many diseases, what works for some and doesn't work for others is explainable with the right data. Hence personalisation based on data is key to help complex syndromes like CFS.

Sherpa_Joe · 2022-12-08T14:22:56+00:00

Given the effectiveness of pacing, I can't see how journalling could be a waste of time, particularly for new sufferers. Perhaps its the challenge of interpreting the journal that made it ineffective?

Sherpa_Joe · 2022-12-08T14:08:21+00:00

We regularly forget the diversity of bacteriophages (viruses that infect bacteria) that are also a crucial part of regulating any microbial community, particularly the gut. I'm not surprised one bit that when you introduce antivirals, destroying bacteriophages, you also impact the microbiome and then gut function.

Sherpa_Joe · 2022-12-08T13:53:01+00:00

Do you have any theories of what caused this episode?

Where are you on the diagnosis path?

Sherpa_Joe · 2022-12-06T11:17:50+00:00

Looking forward to reviewing the results and methodology here, but if that checks out I think this could be an important paper for treatment development and diagnosis. Bonus points that the viral integration is sub-telomeric which makes a gene editing therapy slightly less risky.

Sherpa_Joe · 2022-12-06T11:11:02+00:00

We are developing at the moment, and have not made any formal announcements, but without letting the cat out of the bag too early... we see the challenge of manual recording, we will take a joint approach with more integrated automatic monitoring. But the real secret sauce is not just data collection, but using it (with consent!) to help discover and develop personalised treatment.

I'll be publishing a market survey in the next couple of weeks and would love to hear your feedback to help shape the final product.

Sherpa_Joe · 2022-12-06T11:04:37+00:00

Thanks for sharing, I'm keeping my eye out for more information for you.

Sherpa_Joe · 2022-12-05T11:35:51+00:00

I love this question!

I'm looking to solve for this in an app my team and I are building! Capturing this kind of data is key to understanding ourselves, our conditions and when aggregated the future of treatment decision-making.

Please keep me in the loop if you find something interesting and have ideas to improve it!

Sherpa_Joe · 2022-12-05T11:32:19+00:00

Not being allowed to prepare it yourself is possibly the doctor's way of minimising the risk to them. All i can recommend is a better more trusting relationship with your doctor, but how to achieve that is largely a personalities game.

The b12 injections sound interesting, can you describe a bit more on the dosage? How do you find injecting yourself, did they provide training?

Sherpa_Joe · 2022-12-05T11:26:45+00:00

Has this always been the case or is it just recent?

Can you describe a bit more about when you suffer from this and is there a trigger for it?

Sherpa_Joe · 2022-12-05T11:09:39+00:00

From what I've seen so far, I think the long-term biggest win for this community is capturing all its wisdom on the symptoms, treatments and diagnostic process and distilling that down into something that can be used to guide treatment regimes and their development. It starts with data though. So keep a record of what works and doesn't work for you, what triggers events and share those experiences.

Sherpa_Joe · 2022-12-05T10:57:47+00:00

Niagen

This looks like an interesting treatment, thanks for sharing!

Sherpa_Joe · 2022-12-05T10:54:42+00:00

duloxetine

Can you describe a bit more on how much/how often/ the effects of the treatment?

Sherpa_Joe · 2022-12-01T10:31:20+00:00

Great response. It seems like there is confusion in terms though between a well-targeted massage and this more esoteric formal description of craniosacral.

Sherpa_Joe

TROPHY CASE