[Thought experiment] In a random cohort of 100 ME/CFS patients (recent diagnosis via CCC), what can you know about them with 90%+ certainty?

My sleep problems didn't occur until fairly late in my ME (10 years?). I wonder whether that's poll-worthy: "Did your sleep problems occur immediately, or later in your ME?" That might be interesting for other symptoms too. I don't think my PEM started until several years into my ME, but it may have been 5-10 years before I noticed that I felt worse the day after I felt better enough to do some serious exertion. I think the muscle aches were a later development too, except for the initial "flu-like aches".

 

I have not seen anything about taking blood samples.
I know there's no diagnostic test but would it be possible to distinguish between a group of 100 pwME and a group of 100 HC from blood work alone?
I mean with 90% certainty.

 

My daughter has not had regular significant pain
Has now had ME for 13 1/2 years

 

Yes it most likely would be possible as somewhere around hundred studies have shown. The question would be whether those factors are actually meaningful or whether they are just identifying some form of statistical noise or even something related to reduced activity patterns, I'm very sceptical of almost all of those findings in regards to whether they have any meaning.

 

Yep. 100% agree.

Those who got given even the correct information to start with the line is 'well they can talk about pacing but' and we all know what they mean. Also noone seems to know that there might be 'no treatment for ME/CFS' but the medical system has actually instructed people over the years not to even try things that might help individuals be a little better. And that includes the 'no investigation' and inference of whatever instructing people to not treat them medically for anything meaning that not only don't they have a cure for ME/CFS but these are people who have something serious that got banned from anything just 'untreated people'.

Hence I wondered whether it was perhaps some massive nationwide guinea pig scheme of if we just choose not to treat anyone with none of these 'red flags' (we can't get away with not treating diabetes or cancer) then forced them through various behavioural versions of 'ignore them and they'll stop crying and asking for help'. But the outrageous bit was they never had any intention to monitor the results.

It isn't even the cheek of that being 'accept your new life' but that noone is telling anyone near you anything other than the opposite. And noone wants to know if it works or helps or if you get worse and there might be something else going on.
Yet that idea that someone would be 'more well' if they had just been careful and only done a little bit each day - with no support or leeway to make that possible or accepted.

So they don't, it has become quite clear, when someone uses that term in the way they do (it should be 'has to conserve their energy and carefully manage to stay within their envelope so need people to be considerate' not advice to the person) that in itself is behavioural, and the world is such it is taken as if you are still ill 'it's because you aren't practising your pacing well enough'. EDIT: and here I'd add the radical rest/letting people overdo on the things they see important but let them rest it off completely.

And if they hadn't been finished off before they got to that stage if they were kids forced through GET then it becomes really pertinent if someone has it in their youth and has it a long time (ie isn't one of the able to radically rest and then recovers after x years). Because they will know full well that they might want to experience once in their life a music festival, or nights out or other things that are rites of passage.

Or want a career or degree that doesn't really have the flexibility to accommodate their illness, and certainly not without them having to sacrifice their health and feel like a bad student/worker at some point. And of course if you are looking strategically at 'a lifetime' then getting a career where there is part time or flexibility on a good enough salary you can live without the stress caused by not being able to afford to be away from noise and difficult commutes and so on, then the pathways there will not be the options conducive to pacing. SO which is better? Try and get through what is needed for those careers and have better for health options long term, or focus on health early on but that mightn't be as flexible in options later on.

I think even those who understand some of the opportunities and invidious choices, noone has nailed getting the big picture across of how it isn't just that one task used as an example but imagine multiplying these competing things up. And people seeing the impact of that time they thought it was just making them do that extra half hour, or manipulated them into doing x - was far more knock-on then they were prepared to imagine. Which I know is disability in general also.

 

Maybe ... that if you made them all go to a proper IMAX type action film (the issue is that ethics thing for some) vs 100 controls and then did a test that involved specific words ie you couldn't cheat and circumvent on word-finding that was done before and after

the ME/CFS group would have a drastically bigger difference from before-after than controls.

EDIT: PS anyone who decides to nick this, the issue with drop-outs needs to know most/many people won't get to the end of the film so better to do some clever stat that still lets them do the test then back-calibrates how much of film they managed (like a CPET identifies 'peak/max') as just excluding drop-outs then averaging score of those who got to end would be very 'BPS krypton factor filter'

 

We all suddenly realise that we actually 'wait for a good moment' as much as we can until we have a shower. like others talk of second wind but it's more like a passing window within the impossible you can't put your finger on

Do/can normal people just get in the shower, basically at any point they need to and particularly when they need to be somewhere or want to crash into bed (without thinking catch 22 as I need to rest to shower)

 

i have gone into P E M from watching an action film .I was unpleasantly surprised that was all it took .

 

I was diagnosed with Fibromyalgia first, I have no idea whether I really have it though. I have pain it waxes and wanes. Who knows?

I’d like to see more about “health fatigue” although, (again, one to hide from the Behavioursaurs in case they hijack it as being evidence of effort preference or some such nonsense) The ongoing, relentless effort to not overdo it; try and rest; renegotiate rest between - medical appointments, social stuff, eating, cleaning. Constantly having a running total in your head of what you have done, haven’t done, can’t do, shouldn’t/should try to do. As well as monitoring yourself for changes in your symptoms. Is this PEM? Am I at my baseline now? Is this new twinge worth attempting to see the GP about? Why is it hot one day and cold the next? Should I take magnesium tablets? Can I be bothered caring? Ooops I-took my eye off the ball and now I’m paying the price.

It’s crazy making. And we’re the last people who should be burdened with it.

More than 98 of the 100 people will reach the “F%!& this” point at some stage

 

Yes this has been shown several times. The problem is then using that rule on a different set of pwME and HC to get that same accuracy. A proper validation never seems to work as well.

 

Yes can confirm you do just get in the shower whenever you want when single.

When you have multiple small kids you go when you can.

When you are unwell (with an infection) you tend to go when you muster the motivation.

 

There is some effort towards trying to use AI devices to do the thinking for you. I think it's a good angle because this is common of most chronic diseases that people do take their eye off the ball. It's natural.

 

In some ways I found life easier when I was more severe and only got out of bed to go to the toilet or eat. I did not have to balance the energy ledger, I only did what was necessary to sustain life and a shower once a month was an achievement. Now I am able to do more, there is as @MrMagoo points out continuous evaluation, self monitoring and energy budgeting. Then how do you explain why you can’t go to the pub for lunch today, though you went last month. There is the energy demands of planning. Four or five years ago there was a family funeral that I really wanted to go to, but the planning to make the journey conceivably possible was making me crash so I realised actually going was futile. This month I am going to my niece’s wedding but most of my non essential activity since February has been taking up with planning and organising. And this week I got an invite to a first birthday party in Wales next month, but even if I am not out of it from the wedding I don’t have five months available to plan and prepare (fortunately the mother understands).

 

Have only been able to skim this thread but there seem to be 3 layers of discussion going on

1) outsiders' reactions to the illness and diagnosis

Very high certainty that the vast majority of the 100 pwME have experienced some form of stigma, gaslighting, symptom minimisation, unhelpful advice, etc

2) symptoms reported match the CCC requirements - but that doesn't mean they're all the same

High certainty that the 100 all reported all the symptoms required by the CCC or they wouldn't have been diagnosed. But language is slippery, therefore low certainty about what people really mean when they report fatigue, PEM or sleep disturbances. We've seen over and over again that each time we go beyond the shorthand headline terms and try to describe our experience in detail we end up describing highly varied experiences (and don't get me started on the many misconceptions of PEM out there!). This heterogeneity of experience also applies to a single patient over time; our experience of the "same" symptom doesn't necessarily stay the same over the course of the illness. So while the CCC do narrow the field compared to older criteria they still leave a lot of room for heterogeneity even when carefully applied (but especially when poorly operationalised)

3) the disease entity hiding within the CCC syndromic criteria

If we look at diagnosed people - as opposed to affected but not necessarily diagnosed ones - in Western countries most will be female, white, middle-class and/or have above average education (unless they fell ill as children). It's highly likely most of that is simply due to biased diagnosis. I'm inclined to think the higher female prevalence is real but wouldn't put 90% confidence on it.

I'd be fairly confident though that most people would have tried - and failed miserably - to exercise and positively think themselves back to health at some point.

To get to the core of the disease itself I'm wondering about a different thought experiment. I wonder if it would be helpful to look at pwME who don't meet the CCC, more specifically those who once did meet the criteria but then went into remission. Not complete remission mind you, only nearly complete, and for long enough to wash out any lingering effects of any secondary deconditioning and so on. The logic being that whatever symptoms remain throughout the remission may be the ones closest to the core of the pathology whereas the symptoms that disappear during remission might have been more downstream ones. Thoughts?

 

If people who only met your description for a few years can be included, I'm one of them. I've spent around 12 – 13 years of my illness at this stage, over separate periods.

At the time I felt recovered. I worked full time and could exercise regularly; at various points I did distance swimming, weight training, hillwalking, and contemporary dance, and always more than one of those in the same period.

Looking back, though, I still had ME. I never stopped needing to space out demanding activities, or having muscles that fatigued earlier than others, or experiencing PEM, or going to bed every night with burning quads, or having the light and sound sensitivity when I was worn out, or having daffy ME moments. Or sneaking off early or turning down invitations so that I could grab some rest, for that matter.

But the dose/concentration of the illness was diluted by about 85%, and it felt as if I just lacked the core of stamina my friends and peers had. At the time I didn't feel I needed an explanation for this, it didn't seem at all significant—some people naturally have more than others. I can see now it was distinctly odd that people my parents' age also usually had more stamina, even though they were less aerobically fit and most of the women lacked the muscular strength I had from training!


ETA: might be useful to add that I spent the first 23 years of my illness undiagnosed, and it never occurred to me that all the symptoms I'd had since I was 17 were part of the same illness. About 10 of my 'recovered' years were during this period, so it was a very confusing pattern.

 

I hate to tell you this, but my severe pain kicked in suddenly.... at year 14. Before that I was relatively pain free. Same thing happened to one of my old university friends. Fingers crossed that doesn't happen to your daughter. Some people do seem to avoid the pain.

 

90% of the patients would have OI, but you only get to 90% if you do a tilt table test with Doppler.
(And if you don't put POTS sufferers in the control group as the NIH did)
Don't worry too much about referral bias in van Campen/Visser. It's the patients that do the referring by means of a letter by the GP.

 

The CCC allows for post exertion fatigue in place of PEM so it could include non ME patients.
https://me-pedia.org/wiki/Canadian_Consensus_Criteria

 

They all had an insufficient workup during the acute and sub-acute stage of their disease/trigger event, making it close to impossible to hunt down the actual pathology.

ME/CFS being diagnosed after 6 months, and people only going through what is currently the standard medical diagnostic approach before that is what all patients have in common and is the reason why we wil never get answers.

There is a time dynamic to this disase and its biomarkers that is currently being missed/not controlled for.