Sorry, I'm not well enough for conversation. My feedback probably wasn't very helpful as there were some hours between filling it in and posting a comment here, so it was more based on remembered impressions. Probably not very useful.
Seeking Feedback: US TopX HHS AI & Tech Sprint (Cost of Illness Model & Burden Index)
- Thread starter Healthful_Manny
- Start date
Healthful_Manny
Established Member
You have captured the spirit of the HHS Sprint itself. It is what the organizers describe as developing a “minimum viable product.” We all know that six weeks plus the two we have left is nowhere near ideal for something ready for external use. The goal for the sprint is a minimum construction that, with further funding and development (and with the many significant improvements suggested in this thread), could help advance decision-makers’ understanding of the magnitude of costs from invisible illness.
We also recognize that questionnaire design and disability accessibility are specialized skills, and we appreciate the pointer to Action for ME. If we get through to an award, we will be able to take the time we need to get this right, as we absolutely appreciate how much this means for each person living with ME/CFS and Long COVID and other invisible illnesses.
What we have now is a draft and only the start.
With deepest appreciation,
Manny & Team Healthful
Healthful_Manny
Established Member
Hi Trish - your comments are extremely useful! As someone who has lived with 3 spoons in 10 nearly my whole life, I deeply appreciate all the time everyone has taken to review the draft. We will incorporate your comments and those of others we receive outside this forum as best we can.
Thanks Manny but I wasn't sharing my experience (tho there was the odd line with a bit in there as an example), but trying to pick out some of the scenarios. It seems you got that I was warning you that you cannot assume caregivers can describe what a pwme experiences. But I think it is a big enough issue that it would need to only be accepted from caregivers in the cases where that is explicitly put forward by the pwme themselves who has carefully considered that they believe that caregiver can describe the full extent., not come from the caregiver alone. But it is still a difficult situation as even as patients we hope we will be able to improve 'if we just get on top of x, y, z'.
And that similarly to others have put above you run the risk of not including the actual costs. Getting a representative population is imperative. And these are quite different cohorts at this stage. ALthough there are some lessons from some ME/CFS experiences that sadly might serve as warnings for future long covid (should it become ME/CFS of a similar type).
I was telling you that there is a risk that if you have not understood that ME/CFS until maybe recently often meant people being diagnosed past the 3yrs window where some recover. Whereas Long Covid is diagnosed early and might be more likely able to include those who recover within 3yrs.
So they are quite different groups potentially even if it is the ME/CFS type of LC alone for the purposes of comparing 'costs'. Partly because of the past impact of certain things gerrymandering ME/CFS data collection - another point ( prognosis data). Partly because you can't yet necessarily have anyone with LC yet who has had it for eg 20yrs or more. I think it brings up important conversations because there may be some who have had it 6yrs and can't be sure it will improve. And a lot of significant costs come in after a certain length of time only if/when that is realised and because of how certain things work (like sickness policies, giving up a deferred course), but also savings and keeping head above water from eg losing a home or marriage taking time, you don't buy a one-level or detached etc home even if you can afford it until you are sure it is needed etc.
The costs to a younger person might be missing out on things like education or internships that would directly impact earnings in future years which have not yet come. BUt there is another issue - which I explain for ME/CFS as a warning for LC - if someone might be at 6yrs moderate and in a role that is not great for the illness in particular then the nature of the illness vs their alternatives (homelessness) could mean working full time until they become severe and can no longer do any work is their future, and is particularly more likely if they don't have the CV and seniority to find something better-fitting of the illness. Someone older (or younger) might find they are so ill they can't complete the fight to access what they are due in their pension or any policies or anything else they are due by that point. Many won't be aware that could happen to them and assume any stories they hear are exceptional etc.
I don't know how you ignore that potential trajectory whilst also know that they are not the same illnesses.
And that for different groups within these the costs will snowball by different factors. Including what age, severity but also what 'regime' they fell under at key times as well as the direct luck of the draw in whether they got a good GP, employer, support network that stuck by them etc.
There is a big risk that those who are most ill also are least likely to either fill in themselves or have someone who could. And the issue is that I think that might be the norm/intended route rather than the exception to not have a support network or someone who was prepared to not just enforce the guidelines.
I don't know how you deal with that. Because a lot of the disability and costs might over large numbers of people differ eg if someone was 'not fortunate' and so got it young, got it at a time when they had GET/CBT enforced and their notes covered with things telling people it was functional hypochondria and their support network and workplace misinformed of the same. And anything different to that was fortune that someone else getting it could not rely on. I'm aware the same happens for other illnesses to some extent but cannot name another condition where the paradigm has been actively harmful to such an extent for so long.
How do you code, for example, someone who got it young who might have been already in an office job that could have provided flexible hours/remote working if they had got it at 30yrs+ had they not been ill with something disregarded during the years they were getting qualifications and starting in a career. But instead has ended up with something that had to be close to where they lived and would hire them and didn't have choices. How do you even code the 30yrs+ person who anticipated a certain career progression on that path? Maybe gets told to 'go do CBT' if they ask for adjustments like remote working. Gets sent for CBT or GET if they seek medical help for anything. Even though it made them worse several times before. So theoretically could apply for things, but isn't in reality safe to or could access them.
When really it is the entire 'path' they never even got to start properly - imagine they have to guess that they might have been x, y, z? But other things happen in life so ..? DO you allow someone to use that 'I probably would have been a lawyer in x type company, married' guess?
And compare that suggestion that they would have had the potential to have eg worked full time in a position like their peer in their class when they got ill? And in the UK buying a house at the right time for example would have made a large difference to personal wealth due to the housing market (I assume similar in other countries), so that peer might have sized up on their house multiple times. And what if that is due to having a relationship that the illness probably prevented from happening so the peer didn't actually need to work. But that depends on whether it is 'personal costs' or costs to the economy?
There is then the issue on costs in relation to care and equipment. They can only buy something they need if they either can do the looking for and buying themselves or someone helps them. There is what people would need if there were safe options to provide it, vs what eg because of noise and social contact is available to them. SO then costs for the best workaround to do x task without care. People can only access a wheelchair that they can get into their home, or car yet one suitable for their needs won't. Their 'actual cost' ends up being not being able to leave home as well as other arrangements when it was unavoidable that made them more ill perhaps, or is it the cost of the getting the right home on their own without support. They need a home that isn't noisy etc.
This is interesting stuff.
There is a big risk that those who are most ill also are least likely to either fill in themselves or have someone who could. And the issue is that I think that might be the norm/intended route rather than the exception to not have a support network or someone who was prepared to not just enforce the guidelines.
I don't know how you deal with that. Because a lot of the disability and costs might over large numbers of people differ eg if someone was 'not fortunate' and so got it young, got it at a time when they had GET/CBT enforced and their notes covered with things telling people it was functional hypochondria and their support network and workplace misinformed of the same. And anything different to that was fortune that someone else getting it could not rely on. I'm aware the same happens for other illnesses to some extent but cannot name another condition where the paradigm has been actively harmful to such an extent for so long.
How do you code, for example, someone who got it young who might have been already in an office job that could have provided flexible hours/remote working if they had got it at 30yrs+ had they not been ill with something disregarded during the years they were getting qualifications and starting in a career. But instead has ended up with something that had to be close to where they lived and would hire them and didn't have choices. How do you even code the 30yrs+ person who anticipated a certain career progression on that path? Maybe gets told to 'go do CBT' if they ask for adjustments like remote working. Gets sent for CBT or GET if they seek medical help for anything. Even though it made them worse several times before. So theoretically could apply for things, but isn't in reality safe to or could access them.
When really it is the entire 'path' they never even got to start properly - imagine they have to guess that they might have been x, y, z? But other things happen in life so ..? DO you allow someone to use that 'I probably would have been a lawyer in x type company, married' guess?
And compare that suggestion that they would have had the potential to have eg worked full time in a position like their peer in their class when they got ill? And in the UK buying a house at the right time for example would have made a large difference to personal wealth due to the housing market (I assume similar in other countries), so that peer might have sized up on their house multiple times. And what if that is due to having a relationship that the illness probably prevented from happening so the peer didn't actually need to work. But that depends on whether it is 'personal costs' or costs to the economy?
There is then the issue on costs in relation to care and equipment. They can only buy something they need if they either can do the looking for and buying themselves or someone helps them. There is what people would need if there were safe options to provide it, vs what eg because of noise and social contact is available to them. SO then costs for the best workaround to do x task without care. People can only access a wheelchair that they can get into their home, or car yet one suitable for their needs won't. Their 'actual cost' ends up being not being able to leave home as well as other arrangements when it was unavoidable that made them more ill perhaps, or is it the cost of the getting the right home on their own without support. They need a home that isn't noisy etc.
This is interesting stuff.
Healthful_Manny
Established Member
Thank you so much! These are important watch-outs for how we interpret the data.
We have included the instructions to caregivers at the start to ask the person in their care directly rather than answer from their own memory or perception. We will still treat the overall risk of under-representing the most severely affected as a real limit on our method, with in-person or direct person-to-person virtual interviewing likely a gold standard which is however cost prohibitive at the scale we would hope to achieve.
That is, we'd love for our work to result in what we have started to describe as a Million Points of Light... each light representing a person who has responded to the assessment so that costs can be counted in decision-making, to collectively show that individual lived experience matters.
When we interpret results we will look at how our sample compares with prevalence and severity estimates from groups that have done sustained outreach with severe ME, and we will be very careful to openly disclose limitations about what the data we collect might support (or not).
Our team is greatly appreciative of the detailed scenarios you have laid our for us. These will help us keep these risks in view.
With deep appreciation,
Manny & Team Healthful
Hi Manny
It would be helpful at the beginning if you stated how many questions there were, in addition to the estimated time for completion. It would enable the user to calculate how long it's likely to take them. This helps them to decide whether or not to create an account.
For example, by the time I had finished reading the front screen my brain was already struggling. I managed the first survey screen, but hit a wall on the second screen with the double negative questions and multiple choice answers - reiterating a comment up thread. I spent 10 mins trying to work out the top two questions before being forced to give up as brain fog was so severe.
I have severe ME/CFS and this took up my 30mins a day that I allocate to being on this forum/internet, so I'm unlikely to try again without the need to create an account. Also, the time lag between saved sessions is likely to be days as I think I saw Trish mention up thread.
The more severe the sufferer, the more costly the financial burden involved, but from the little I've seen so far it will not be user friendly for severe LC sufferers, as it will need the carer/PA to assist.
Hope that helps.
It would be helpful at the beginning if you stated how many questions there were, in addition to the estimated time for completion. It would enable the user to calculate how long it's likely to take them. This helps them to decide whether or not to create an account.
For example, by the time I had finished reading the front screen my brain was already struggling. I managed the first survey screen, but hit a wall on the second screen with the double negative questions and multiple choice answers - reiterating a comment up thread. I spent 10 mins trying to work out the top two questions before being forced to give up as brain fog was so severe.
I have severe ME/CFS and this took up my 30mins a day that I allocate to being on this forum/internet, so I'm unlikely to try again without the need to create an account. Also, the time lag between saved sessions is likely to be days as I think I saw Trish mention up thread.
The more severe the sufferer, the more costly the financial burden involved, but from the little I've seen so far it will not be user friendly for severe LC sufferers, as it will need the carer/PA to assist.
Hope that helps.
Last edited:
Thanks Manny,
That's good but I worry that rather than getting what is accurate, and I think that putting a 'be aware that those more ill aren't well accounted for' is going to hide the sheer magnitude. And minimise the costs hugely for the condition.
Could I ask what the aim behind this is? ie who are you trying to show and what do you think it might get across?
I wonder whether given the timeframe at this stage given that LC is what you perhaps know better then it might be best to suggest that ME/CFS is a work in progress but will be tackled later as it is more complex but/and could provide important information regarding those with LC who do end up following the path of ME/CFS and what the future has in store for them, on the basis LC data can only be at the longest including those who had it for 6yrs max. In a way that timescale for LC allows you to provide a model for that which isn't yet complicated by all the longer stuff you need to start thinking for an approach that properly accommodates as a next step and needs to be implicit for ME/CFS?
And then maybe ask for that 'more time' and use it to turn the approach on its head for ME/CFS as it might need a slightly different angle to the method?
The thing with putting something out that is underplaying things with an addendum is noone really reads the addendum and these things linger when it is convenient to other people, which it would be vs any later version with more accurate costs. At any point 25% of pwme will be severe or very severe is apparently the stat, so it isn't just about those currently severe but understanding the way the illness works for all who have it. they aren't 'different people', but also often the sheer numbers and level of suffering is an outcome/consequence that can be happenning to any one person currently sat in a different place on that chart and the risk is the assumption by many they will just stay there as mild 'whatever' etc.
This not understanding and building in the snowball effect and the spectrum and prognosis of the illness into a model that could be used for all sorts could have very big implications indeed.
Particularly for how decisions on whether to give someone who gets it young adjustments that mean they get less ill and have a longer working life vs aren't and are made more severe if it misrepresents the costs associated with one vs the other.
These are the sorts of models that directly affect the things that have transformed some of our life paths, wrongly so getting something that is right could be very good but another incorrect one is a problem.
Simple example: People just see the adjustment to 4 days a week as 'a cost' that they are happy is avoided when the person pushes thru, rather than 'a necessary cost compared to the catastrophic cost if they become more severe'? Or they don't understand how important reasonable adjustments and very accessible university courses or schooling is - to make sure that at the same time as being able to get qualifications that might mean they can have work that is going to fit their needs (let's be hones the more qualified you are the more likely you can find something that pays ok and asks for different hours etc) whilst not being made more ill by it, just see that as a cost and the difference between those who earned more or less as down to 'level of education' etc. It reminds me of the Suits "I got knocked into another life" quote.
another example commonly talked about is ill health retirement and whether people will miraculously get better after decades if they just did the same harmful treatment yet again being used to prevent that and the stats on that when there is also the risk of people getting worse and being even less able to even be independent ie not having support to live.
annother thing I have in my head is thinking about a condition where there is a treatment there might be models where they look at the total costs before across the entire population of illness and then are able to compare the impact which might include fewer ending up as ill or severe as soon and the costs associated with that by doing the same after, and that would of course need to include the most ill and most impacted but also those who it might have changed the trajectory they might have had.
We already have in the UK a 'new guideline' that has decided to keep on just not bothering with the severe as its first step even though for any other illness the focus of a department would be on those most well. And that's made the stuff for those mild and moderate pointless because it means they can treat them on the basis of pretending the illness can't get worse because they just have never seen a severe person.
With regards ME/CFS if you still presented it then it needs to be the opposite of adding a note that 'severe might be underrepresented' because any person with the illness could become severe and that is where the most extreme costs are. It would be like looking at the costs
of cancer or MS and not making sure that those with the most serious forms and levels are focused on first.
I don't know something perfect to suggest in this timeframe so I'm trying something imperfect to get across what I mean:
UNless you include at the very start/top of the presentation (alongside numbers approx guessing at how many this could be) an actual case study with figures of what, without support and/or other resources that can't be guaranteed, the path/outcome basically means for someone who is the least unfortunate (and it would merely be tenacity and luck to not end up that way) then the readers will not understand the magnitude of the destiny the illness + 'system' and misinformation behind that has created for those in that bracket.
Something that is like a blueprint of what the illness+environment+misinformation means as a path 'how would you avoid this' without any seriously strong insulating factors (and I mean bigger than just not being poor when likelihood most employers think bps even contacts if your family hadn't disowned you aren't going to work). Then people won't actually understand that anything different is down to luck taking people out of the steamroller destiny, and not the otherway around where the pathway of support for people is x but of course some have 'additional stuff' or miss windows so are worse off.
Last edited:
Healthful_Manny
Established Member
Hi,
Thank you for trying it and for the clear feedback. We’re sorry the second screen became unusable. We'll seek to simplify wherever we can.
Stating the total number of questions up front is a good idea and we will add that. Any time estimate we give would be approximate and depend on many factors we couldn't determine in the time we have before submitting Thursday.
One possibility we are considering is whether an AI layer that reads the questions aloud and lets someone answer by voice (or directs a carer/PA) would make things more feasible. Would something like that feel more feasible, or would it still cost too much energy to set up and use and we should instead emphasize carers / assistants or even send individuals to homes (presuming we had funding to do so).
We deeply appreciate that you took precious time towards supporting us.
Thank you,
Manny
Healthful_Manny
Established Member
Thank you so much. Our team has discussed your guidance at length and we agree completely. Our operating position is that we are starting with Long COVID in the current sprint, with ME/CFS as a work in progress given the greater complexity and accessibility constraints.
We truly appreciate all your kind guidance.
Sincerely,
Manny & Team Healthful
MrMagoo
Senior Member (Voting Rights)
Only if you can
-tolerate sound
-speak
Two big if’s for people with LC and ME/CFS
Yes it would definitely help users like me who tries not to take up limited hourly paid carer/PA time with such things.
I'm lucky that I don't suffer too badly with light and sound sensitivities, which MrMagoo correctly highlights.
However, the more features you can add to aid accessibility will likely increase your ability to capture some of the most severe, carrying the highest cost burden.
Sending out people to their homes would take up much more from the sufferer as it would necessarily have to be completed in one trip ( cost implications), and very likely contribute to a crash.
I appreciate the amount of care you are taking with project.
Last edited:
MrMagoo
Senior Member (Voting Rights)
Yes I believe there is a symbol which looks like a person/man which indicates accessibility features on a website.
With ME the ideal would be that offering a full range of accessibility features because people vary in their sensitivities. I cannot use dark mode to read but it seems many prefer it. I couldn’t speak an answer but others would, and so on.
With ME the ideal would be that offering a full range of accessibility features because people vary in their sensitivities. I cannot use dark mode to read but it seems many prefer it. I couldn’t speak an answer but others would, and so on.
Healthful_Manny
Established Member
Thank you so much, Maat! Your encouragement means so much. We're certainly giving it our best. I've never myself pulled two all nighters in a row until this sprint, so please know our team is committed and will continue the work regardless of whether we break through to a win.
Healthful_Manny
Established Member
Thank you to this forum for your great feedback. The final presentations for the TOPx HHS AI and Tech Sprint Cost of Illness is today at 10 AM US Pacific, 1 PM US Eastern:
TOPx HHS: Cost of Illness Final Live Demo
October 22, 2026 | 1:00 p.m. US ET
Registration Link: https://us06web.zoom.us/webinar/register/WN_fYFCSAH6RwC4bJNtB4_trA
Separately, we are now live with what our team is calling 'A Million Points of Light' for Invisible Illness. In under two minutes, you can add your light to the US map, sharing what you wish others knew about living with ME/CFS, Long COVID, and other invisible illnesses:
https://thrive.joinhealthful.com/shine-light
Thank you to this forum for all your support these last few weeks.
TOPx HHS: Cost of Illness Final Live Demo
October 22, 2026 | 1:00 p.m. US ET
Registration Link: https://us06web.zoom.us/webinar/register/WN_fYFCSAH6RwC4bJNtB4_trA
Separately, we are now live with what our team is calling 'A Million Points of Light' for Invisible Illness. In under two minutes, you can add your light to the US map, sharing what you wish others knew about living with ME/CFS, Long COVID, and other invisible illnesses:
https://thrive.joinhealthful.com/shine-light
Thank you to this forum for all your support these last few weeks.