Financial Outcome Measure

This explains a lot.

the thing is that if you are looking at potential cures or something that will make a significant impact to reversing things then this should work but needs to look longer term than perhaps some illnesses or treatment might tend to ie 2yr result instead of 6month due to the ‘something that allows you to overdo it’ issue

when it comes to the smaller things I think we’ve been done over by it not being mapped or believed that without both adjustments and ‘all the littler things’ (like meds for other seemingly smaller illnesses like hay fever or skin that contribute to cycle of getting worse feeling worse taking energy etc) we will get worse over time because our threshold is impossible to keep to.

so if you look at 3yrs instead of clinics getting away with 6months, then having gone half time at work and getting some care in early snd a wheelchair means you can head off getting that much worse over 3yrs (if done fully and early enough). Whilst they focus on 6month outcomes we will continue to have clinic’s pushing and manipulating pwme to overdo to fake an ‘increase’ which we can force ourselves to do over that time at massive consequences longer term. Hence I think just shifting the measures (and then being independently measured) to objective long term would change clinics behaviour massively as they are marked in, so have to open their eyes to, objective outcomes at 3yrs,4,5 onwards, with long term responsibility and 10yr outcomes because there are often windows of opportunities to step back for what seems a long time but saves more permanency at 10yrs. And these being objective vs controls who had none of these support and adjustments etc.

The issue here is of course age profiles. And the way adolescents are separated off into unlinked clinics to adult and you can’t use working hours easily over different career stages alone because of the nature of trying to do the early days of certain professions vs once you’ve got your badge currently re employers, uni and genuinely accepting and having options that would work with the conditions and aren’t managing people out.

And of course pwme are within their rights to factor in these career decisions where they decide overworking re health to get to a cushier job/ qualifications which gives them maybe more opportunities that are adjusted later in career as long as the world doesn’t offer much other choice. Same with finding a partner vs having a supportive one already etc. Ie you can’t control all these things.

and at the other end age wise the assumed interaction age might have plus that currently different generation might have different options on retiring early I guess.

on the other hand I can’t imagine other serious illnesses haven’t had to tackle these in their methods

 

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Through the usual grant process you wouldn't need this outcome measure, though ME/CFS research goes up against cancer and many other researchers with historically large projects funded to back then up.

The grants we apply for show us as a group looking to do a clinical trial with little experience or even if we bring in the trial experience through collaboration, we then need to convince a panel that this is more important than a trial for many other more well known diseases.

In Australia there is some influence that government can make towards research they think is important and that's what we'd be looking to target.

Wouldn't have it as a primary or secondary outcome measure of a treatment trial. Just an outcome measure to help provide a financial impact report for future trials but mainly to get the treatment subsidised.

 

I think there is also a big difference between someone who might have been off long-term sick with their employer returning to their post vs someone who has been completely out of that then trying to get back in. But also for a new generation - and that is where the theory 'looking forward' gets complicated.

All sorts of truths and assumptions behind that as well as logistics, not all of which (despite the 'good intentions' perhaps being claimed) always actually work in the interests of the pwme as it is more like they have to prove wrong that they can 'get back in the routine' and are feeling viewed more with doubt and observed vs someone who hadn't been out for a while, which in itself would be a pressure.

And that in itself is relevant to bear in mind because even a miracle cure, won't cure that. Or not until it is actually signed off and enough years down the line to tackle the stigma.

So for that reason the irony might be even if you are thinking of employment differences it could make (and how badly it affects this and QoL long term is a relevant number) to whether people treated could be more capable of work vs if said treatment never existed and their 'natural career lifetime', being able to underline and focus on the actual independent, objective capacity ie if suddenly exertion, sleep issues, cognitive etc are a lot better and that is even after 2yrs of doing it, could be part of removing that stigma. But I do understand aren't the real test for something where over-exertion causes deterioration.

For newbies a cure will therefore be transformative because it will have the potential to stop any of that from happening.

For those who've been through the hellish dystopia, it just isn't going to take the stink off their damaged CV for those whose qualifications and jobs were affected in the past, going by how the world of work works and the snowball effect of a lower degree and then the access to better jobs and conditions associated with that meaning those take more out of people and so on.

Even when that revelation moment happens, I've learned noone is prepared to then see all those past achievements and situations in context just like noone rewrites medical notes properly after finally someone gets diagnosed right and it turns out those suggestions made for a decade were indeed thoroughly wrong. Particularly when it doesn't advantage them - but also because the really nasty BPS hangover is they got to cast vile fake aspersions that people 'just in case' don't want to touch. It's like the whole leaving landmines after a war thing they've done. We could turn up tap-dancing but if someone has written you are a mad perfectionist with a tendency for hysteria and hypochondria and so on then many places won't see that as 'explained' in the way we would know it was actually ME and all about the writer not writee.

I'm not sure it is something for an individual funding app and needs indeed the bigger report that could be referenced - because I think it is more extensive and complicated for ME/CFS

 

Completely get that, and the need to exploit whatever angles you can.

You might even be able to frame one aspect of the research as a useful contribution to understanding the economic burden of diseases like ME/CFS and long Covid. As well as the core questionnaire, maybe it would be possible to develop a voluntary one asking more questions about the impact on participants' financial status.

Some may have gone from working full time to claiming social security, or now rely entirely on financial support from a partner and are no longer paying income tax; others may have had to abandon training that would have qualified them for a well paid professional occupation, or found their inability to take part in childcare has limited the earning capacity of their partner as well as wiping out their own.

It would highlight how important it is to make progress on treatments, without necessarily implying that this particular study will solve the problem—and underline that people have not just assumed a sick role for [imaginary] secondary benefits. They had a life, had plans for the future, and it was derailed to a devastating extent.

 

Ultimately financial cost/benefit type measures form part of the decision (made by NICE) on whether to fund a treatment - I think that's why NICE didn't recommend CBT (failed cost/benefit test)? However, we don't have a drug/intervention which works!
Perhaps the political argument should be focused on social justice --- lots of people are unable to live a normal life due to the consequences of COVID -- Government should fund research. We've seen a positive outcome from the [UK Government funded] MRC group which was asked to identify research opportunities i.e. this led to DecodeME.

 

But isn't dealing with a glue ear and shortsightedness just a case of treatment working for that person?

I am extremely sceptical of this 'cost to society' story. The great majority of people in my part of the world waste their lives moving money around. And money doesn't even exist the total amount for a population is zero because it is just an IOU.

Life would be very enjoyable if income tax was at 35% instead of 20% and most things were available through co-operative systems.

And it is living people who are so expensive. Health care is never economically advantageous. Tings would be much cheaper if everyone died at 60.

I have my tongue in my cheek a bit but the ironies of money and health go very wide. I doubt people were aware that although insurance companies don't like subscribers to cheat on their claims they love the private clinics to cheat on them. That puts the costs up and justifies higher premiums and profit is a percentage of the premium. Insurance companies have dark webs of connections with private healthcare and try as hard as they can to keep people out of university hospitals.

And of course US physicians were very against rituximab for RA because it meant fewer infusion fees for them.

If civilised countries spent about 15-20% on national co-operative insurance systems (as the NHS was originally intended) everyone would be much happier and there would be no need for the one person in 500 with ME/CFS to be shamed into going to work when they cannot do it.

I never took any notice of financial considerations. The only downside is that I didn't get my name on a patent worth tens of billions in turnover. But I wouldn't have known what to do with it anyway.

 

Whilst I see your point and see it similar, I'm not sure everyone would have the same depth in view as you.

I think many politicians or people being addressed will simply think: This diseases affects many people of working age and so and so many billions are lost, so that is a convincing argument to invest into some research or it can be used to justify research politically. I don't think such an argument would have to be fully logical rather than goal oriented. It seems in the discussion in America surrounding funding for LC, the "economial costs", independently of whether that is a truely useful notion, have been of large importance to secure more funding for LC research.

 

I suspect that is the case, although in reality it is the rich people in charge being worried that there won't be enough poor people able to work long hours to make money for them. Nothing to dow with 'cost to society'.

 

But the story isn't for the patients. It's about getting money for the patients, and you have to use whatever devices will work at the time.

It doesn't matter that we're living in a fiction we've created. We can't opt out, so however ridiculous the game is, we have to survive by playing along. We hold onto some self respect by not cheating.

To stick to the clumsy analogy, appealing directly to political concerns breaks the fourth wall. It's always odd, always risky, but it can work.

 

It's a nice idea, I admit. But the irony is that the 'cost to society' and 'getting people back to work' has only ever in the past been raised in relation to illnesses that people don't really believe in - back pain, depression, and of course ME/CFS. And the solution has always been worse than useless. For illnesses like RA, where 0.5% of the population are too disabled to do at least any manual work, never in the history of research did any one ever raise the argument that finding a treatment would help the 'cost to society' or 'get them back to work'.

 

But it doesn't matter, because it's nothing to do with solving the problem. It's about offering someone who hands out cheques a reason to give you one. A reason they think will make them look good.

It might not work, but when times are hard, money's short, the only governments with any vision are malign ones, and you're arguing a case backed by scant evidence and few experts, you have to look for ways to get attention.

 

@MelbME I don't know whether this is a side issue prompted by your question but not directly tackled by what you are planning or not. But sure as heck others are trying to use this tactic, and manipulating it with bad and biased reports on tiny numbers focusing on niche ideas to try and distort the narrative here. And I think it is getting sucked up.

So anything that could distort back (although these people seem to often not look across literatures but only see it if its in their areas) the 'interventions' suggested to sensible things ie noting that the 'solution' isn't basically weaponising mental health to keep them out of everyone's hair. Perhaps somehow linking into 'this' ie the claims of 'being all about the budget' and the poor overwhelmed services (who knows if that's the case or its just bias) at least stops the wrong dumping ground and made-up conclusions or suggestions being the 'end-point'?

I have come across the following: Interventions to manage use of the emergency and urgent care system by people from vulnerable groups: a mapping review (nihr.ac.uk)

and when I looked through it, and noted that their remit had specifically been given as a list of certain defined 'vulnerable populations' but even in the abstract they noted they instead crowbarred in a 'new group' which was 'to blame' for high frequency use I smelled a rat. Certainly of their 'project' getting twisted from vulnerabilities to 'whose to blame'.

And I looked through table 4 with a horrible feeling that 'new group' - given their naff methodology of only reviewing things that people had already done research on, so apparently not setting foot into any actual EDs themselves to ensure any sort of external validity (?) - would/might be 'MUS'

And find the following, which also happen to be the UK ones (it seems the US is at least focusing on addiction etc), standing out to me based on 'population investigated' as being part of the 'remit creep'. One of these even in the table mentions they just picked out 7 of their 20 'most troublesome frequent attenders':

Frequent callers to the ambulance service: patient profiling and impact of case management on patient utilisation of the ambulance service | Emergency Medicine Journal (bmj.com)

Frequent attendances to a London emergency department: a service improvement project embedding mental health into the team (tandfonline.com) I'm intrigued this one is about West Middlesex and is written by a number of psychiatrists and liaison psychiatrists and seems to be about what a miracle idea introducing liaison psychiatry is.

A PILOT PROJECT TARGETING FREQUENT ATTENDERS AT THE EMERGENCY DEPARTMENT WITH MEDICALLY UNEXPLAINED SYMPTOMS | Emergency Medicine Journal (bmj.com)


Not read them all in full yet but just have that whiff in 'patient profiling'

 

The middle one for example: Frequent attendances to a London emergency department: a service improvement project embedding mental health into the team (tandfonline.com)

is the hospital where Carla is currently, and is from 2012 with a 12 month follow-up, so I don't know whether the 'initiative' developed from those 7 'selected patients' still goes on to this day.

Under the title of 'the west middlesex frequent attendances model':

Then (my line spacing for readability):

And perhaps bringing up warning bells regarding relevance to things happening in other threads including BACME and care plans (but also noting how sure as heck when it is sold as 'in their interests' or allowing them to decide it's amazing how these can be instigated so effectively.....):

And the following

The interesting part is when you scroll down to Table 1 which actually goes through what each of these 7 patients (I find it astounding this counts as anonymity, 5 people is the minimum for reporting answers to a yes-no or 'tick a category' such as age question on a survey for most things due to it revealing people), had as an issue (you know like sickle cell and no GP or relationship with haemotology, prostate cancer and recurrent UTIs) and that all or nearly all were offered psych-education.

Goodness knows why given the real issue was like the guy with COPD apparently having bad inhaler technique, or the person with sickle cell needing a relationship with haemotology why a basically functional ED department with staff who were decent and had sufficient time hadn't asked these questions and spotted this before. None seem to need a 'liaison psychiatry' input for either diagnosis or treatment. And I fail to understand why they would be needed to coordinate care or other services.

It when you look at this table seems to speak more about the 'biopsychosocial 'issues'' of the staff and system that seems to potentially leave those with cancer and arthritis in agony who are old and sees that the solution must be that said patient needs 'psycho-education'. So goodness knows why their hidden punchline is that it needs liaison psychiatry at the centre of this.

But I guess it provides a sense of the tiny studies giving themselves ethical exemption because "this was a service evaluation, not a research project, with all cases fully anonymised" that any sensible care plans and Nice guidelines are battling against

 

PS one thing I'm now utterly astounded by is that the 'twist' put on the remit is cited as being due to one paper:

And yet the conclusion of that paper itself is that there was no relationship (even in its abstract):

The relationship between health literacy and quality of life among frequent users of health care services: a cross-sectional study | Health and Quality of Life Outcomes | Full Text (biomedcentral.com)

Surely this has to end where, and yes it very much seems to be medics and academics from certain backgrounds and leanings, propagandic statements are made and bolted non-sequitur with references it suggests 'back up' said point or suggestion, which then turn out to actually be saying the exact opposite and do not back it up at all.

I've noticed it is common fare in psychosomatic literature for example from finding enough of them myself in the limited clicking through I've done and I have severe ME. So why the heck aren't fit and well peer reviewers who are receiving salaries to be in these areas, part of which does involve career-wise being part of these things and doing checking either not doing the checking or noticing and choosing to let such issues slip by - or is it editors and funders?

It seems even more of an outrage when someone has used it to mission-creep their remit for which they were funded?


And why isn't it happenning to a sufficient extent making such areas and papers a laughing stock who can't be listened to until the wheat is separated from the chaff, instead of certain patients who are being 'something'd out' (sorry anomia on first word)?