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Trial Report Can a consensus occur on a research case definition for ME/CFS?, 2024, Jason
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Yann04
Senior Member (Voting Rights)
Anyone feel like their ME is literally just PEM, and there is a constant level of PEM that comes from like being alive, which causes the “normal symptoms”, and it can be worsened by overexerting.
Whenever my severity got worse, it felt like it was just extra PEM that never went away.
My OI and sleep get better or worse with PEM, but I do suspect some permanent damage that is impossible to be “rested out of” even in a thousand years, has somehow occurred.
Whenever my severity got worse, it felt like it was just extra PEM that never went away.
My OI and sleep get better or worse with PEM, but I do suspect some permanent damage that is impossible to be “rested out of” even in a thousand years, has somehow occurred.
One of the issues with OI is especially with less severe ME not actually realising that OI is a problem for you or understanding what OI is
how many times do we read of people who didn’t know using a shower stool would help. Also issues with shopping- especially queues.
I’ve never passed out so not POTS which might get some attention and never had a discussion with any medic where I raised difficulties being stood up the issue isn’t being captured.
how many times do we read of people who didn’t know using a shower stool would help. Also issues with shopping- especially queues.
I’ve never passed out so not POTS which might get some attention and never had a discussion with any medic where I raised difficulties being stood up the issue isn’t being captured.
boolybooly
Senior Member (Voting Rights)
Yes, you are talking about a cladistic or classification key. As one would use to identify a bird in a field guide for example, via logical bifurcation of groupings based on identifying characteristics.
With ME we could use a similar cladistic logic. If we list all possible symptoms we can create as many research subtypes as there are combinations of symptoms. Every PWME would fit into one of them and all in the same subtype would have exactly the same symptoms.
For the purposes of research one assumes the symptoms define the subgroup even though we do not know whether different subgroups have the same problem. We dont need to, we just need to know the research cohorts are standard reproducible subtypes.
This would also lend itself to computing logic and is probably inevitable in the processing and interpretation of big data.
Looking ahead, research subtypes could even be defined by lab test results.
Then it will be possible to compare apples with apples, as it were. (i.e. closely defined research subtypes become comparable between different studies.)
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boolybooly
Senior Member (Voting Rights)
Another angle we could try with this is start with big data which has self reported symptoms with fine granularity, analyse symptom distribution, create a new subtype for every different symptom combination, then count those belonging to each subtype and derive research subtypes with defining symptoms from the patient data.
With a little statistical wisdom, like nesting subtypes with identical key symptoms, I think that could also yield useful clinical subtypes.
I dont think anyone has actually done this systematically yet have they? All the criteria are subjective attempts to do this intuitively, which is born of noble intent but a notoriously unreliable method.
One hopes DecodeME is trying to make some progress with this in relation to GWAS.
It is the sort of study which could also be done online as an open questionnaire. It would be less rigorous if not linked to GWAS but not entirely useless and we dont know what GWAS will turn up yet.
With a little statistical wisdom, like nesting subtypes with identical key symptoms, I think that could also yield useful clinical subtypes.
I dont think anyone has actually done this systematically yet have they? All the criteria are subjective attempts to do this intuitively, which is born of noble intent but a notoriously unreliable method.
One hopes DecodeME is trying to make some progress with this in relation to GWAS.
It is the sort of study which could also be done online as an open questionnaire. It would be less rigorous if not linked to GWAS but not entirely useless and we dont know what GWAS will turn up yet.
Sounds good. ANd I think back in the days where I was naive about medicine I assumed people thought this way and this type of thing must have been going on for illnesses. It seems so obvious.
Now I'm more informed of how things are (!)
One thing I would say is that to do this then we'd need much more precise definitions of what is and isn't included in each symptom and sub-symptom. There has been a tendency for ME/CFS to use laypersons terms that reflect what outsiders see rather than the internal experience, but also to 'fuzzy them'.
Non-restorative sleep is an example I've mused on above and that's difficult to even articulate with experienced patients. Because you can have sleep that doesn't feel refreshing, and will never 'restore you back to your former self' no matter how much time (unlike for healthies catching up on a heavy week with a few lie-ins etc) but technically is 'restorative' in some ways because it is vital (even in the bits where you are resting in agony, and doing so for enough nights gets you to sleep where it is more 'good sleep' and so on) as part of recovering from over-exertion. But that word 'recovering' is wrong too. One thing sleep, or 'all sleep' isn't for all of us however is 'something that doesn't help' and the 'more is harmful' is not just tosh but the opposite of reality.
I'm open-minded to thinking that some others have a different situation.
I also know that my sleep is very vulnerable to being impacted and then it becomes less and less effective and you are into real issues then.
Brain fog is an obviously useless term, which I think for me is something that is just used as a dismissal lowest common denominator term for at least 5 different quite specific symptoms and phenomena (in the sense PEM has specific stages)
Add in that you'll be asking people in different lengths of having the condition (to be rude 'novices' or those newer to the condition) but also people with very different levels and expereinces currently and in the past to draw on - many might be in rolling PEM. So some of these 'phenomena'/symptoms would perhaps benefit from almost having 'little sets of instructions/tests' with them (like the NASA lean test you could have people see what happens if they have a week off work and then exert and so on).
boolybooly
Senior Member (Voting Rights)
So logically we need to get data to improve research case definitions.
IMHO we need better research case definitions because as the title of the thread suggests, research definitions dont agree with each other, so research papers are at the very least comparing cohorts selected by different definitions which is a hopeless state of affairs. The definitions themselves are all so nebulous it is only by practised clinicians intuitively cherry picking patients that any kind of homogeneity in experimental data can be derived.
Replicability has been poor with ME papers. If even attempted papers often contradict each other and assuming experimental methods and materials are easiest to standardise the possibility exists this is due to using differently defined and selected cohorts, because different clinicians are intuitively selecting different subtypes and it is likely different kinds of condition, certainly with respect to infectious agents involved, all present as ME in different parts of the world, yet are subtly different.
Lets face it, ME/CFS is a bucket diagnosis. Assuming the average ME cohort is a heterogenous mix of conditions, of course we are not getting consistent results.
Currently we cannot see the wood for the trees. We have to narrow down cohorts to people with the same condition and not play along with the research blocking gambit of the CFS bucket diagnosis.
Assuming the ‘fatigue’ nonsense assumptions come from somewhere (like another condition) I’d suggest that a line/not regarding some sort of ‘cumulative’ aspect/toll is actually pretty important
When I think of groups like BACME eg old staff with sort of not the worst intentions of all (doesn’t speak to their outcomes or callous indifference to what it does to patients but they weren’t Wessely etc) I think it’s this but they don’t ‘get’. They think getting people to ‘be able tii on perform’ or ‘put aside how they feel’ is the aim. They just don’t realise that’s insulting as everyone already was hugely stoical and did this more than most but also that even if it ‘seems’ sustainable based on their very short term measure based on ‘performance’ they see its very different to the building exhaustion that means year in year someone might seem to be coping eg in a job or situation but their body is getting worse and worse whilst they are just adjusting more
I guess there is a theoretical where someone manages to get everything below threshold but actually this could be a useful one because novices will have snd notice this (if described better than me) and experienced patients will be conscious of it even if they do manage to ‘consciously pace to avoid it’
When I think of groups like BACME eg old staff with sort of not the worst intentions of all (doesn’t speak to their outcomes or callous indifference to what it does to patients but they weren’t Wessely etc) I think it’s this but they don’t ‘get’. They think getting people to ‘be able tii on perform’ or ‘put aside how they feel’ is the aim. They just don’t realise that’s insulting as everyone already was hugely stoical and did this more than most but also that even if it ‘seems’ sustainable based on their very short term measure based on ‘performance’ they see its very different to the building exhaustion that means year in year someone might seem to be coping eg in a job or situation but their body is getting worse and worse whilst they are just adjusting more
I guess there is a theoretical where someone manages to get everything below threshold but actually this could be a useful one because novices will have snd notice this (if described better than me) and experienced patients will be conscious of it even if they do manage to ‘consciously pace to avoid it’
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Peter T
Senior Member (Voting Rights)
I don’t think we have enough evidence to assert this. I accept ME is a fuzzy set with blurring at the fringes and there is high levels of variability between different patients. However there is also high levels of variation within individuals; over the thirty years of my ME my condition has varied enormously and looking just at different cross sections I could have been thought to have different conditions, but longitudinally there is a continuity that I believe makes it clear that this is one condition. Given the variation between different individuals it alway surprises me how much we in fact have in common.
I think it is worse asking if the focus on ‘fatigue’ was/is a deliberate attempt to mask the distinguishing features of ME. I think it is worth looking at the concept of ‘common health problems’ that Joanne Hunt (see https://www.s4me.info/threads/inher...ealth-problems-future-for-lc-2024-hunt.37264/ ) argues was introduced to sell the idea that many chronic conditions were in effect a life style choice rather than reflecting underlying medical conditions, as part of government and insurers attempts at denying benefits.
On the first part it’s easy to jump in and say this but it is context-dependent somewhat whether it matters.
i agree that I notice ME gradually deteriorated the body it seems and so looking for these perfect ‘without comorbidities’ type stuff is missing the point (and as much of a problem as studying only mild and missing the chunk of the spectrum where things accelerate and exercise really does have no benefit at all).
I think if @boolybooly is talking about markers that allow for separation into groups then it could provide interesting insight to data differences- that’s quite different to exclusions.
I also think that some of these might be patterned out (eg some comorbidities might tend to happen downstream from having ME a long time, others often precede) then they could help provide clues where to look or on the different weaknesses the condition creates within the body.
so I agree the consensus needs to be broad - but very firm on the key underlying issue it has settled on. I think whe we meet people for a while there is a point where we know someone else definitely has it. There might be those we doubted in the past who turn out later to deffo have it but that’s based on often how we’ve been taught to mask and act ie I’ve been astounded how over the years I don’t think anyone has the ‘cfs’ they generally all do turn out to have the quite obvious me-y thing. Which is why I’m convinced the BPS claiming .. but there might be some who just have cfs/me so dangerous as it’s sold as a form of denial (or guilt that you ‘aren’t allowed that label as you can still gad about so aren’t as sick as those with full-on ME’ type stuff you get in your head as gaslighting) to those who do have me as much as it is to everyone else.
we need the full gamut of people in research studies is one issue that willl be difficult but necessary to manage somewhere I think.
Apart from the recoverers who you always get either as hearsay or they describe things retrospectively. They can’t test PEM and you can’t go by the look of their eyes unless they are the kidding themselves not really recovered.
For this reason I find Sharpes latest propaganda trying to suggest focusing on ‘those who recovered’ very suss . I can see how the sophism could be twisted to entice some but getting a group all with the same thing is hard enough without ficusing literally and giving more weight to the very ones you can’t test that in. No one can test if someone ‘had it’. AND no one can test their claim of ‘now cured’ so it’s multiplying the ‘error’ exponentially to the point was there ever any ‘not error’ there?
There are cases/points to be had where research is looking at really quite specific things where misdiagnoses could be an issue and I have found it frustrating where this isn’t controlled fir then lack of ‘everyone being the same’ or ‘having a rather than b’ is used as proof it’s a dead end rather than that being probed as maybe subsets or other things.
so I think the issue is about something that provides a strategy that begins meaning data from all the different studies can at least be compared and pieced together - otherwise it feels all eternally pointless
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rvallee
Senior Member (Voting Rights)
Let's look at other diseases. Has it ever happened for a disease definition where there aren't prominent unique signs to precede an understanding of the pathophysiology? Reaching a consensus?
I'm not entirely sure, but I assume it never happened once. Medicine is all about biology, and specifically about the unique pathophysiology of a disease. It's not how it should be built, but it's how it has been built. Anything not fitting this approach simply fails until it fits with the discovery of a unique pathophysiological process or feature. The default is always to go with psychosomatics, which is the main reason why it fails miserably until the biology is understood. This has been the case for centuries.
And if there are exceptions to this, they are extremely rare, so I'd say that what we have is as good as it gets, and that doing any better would simply not make any difference. The problem is with people with an ideological agenda, but there's nothing we can do about that. This is simply how medicine works, and how human intelligence in general seems to function: all the opinions are explored, even the bad ones, especially the bad ones, until all but one are made irrelevant by scientific knowledge, and we don't have that yet.
What we need is data. More data. Better data. Accurate data. The rest is mostly irrelevant.
Ravn
Senior Member (Voting Rights)
[just commenting on the abstract, haven't been able to catch up on the whole thread yet]abstract said:
Is this yet another one of that seemingly endless stream of papers from that group, always pushing the DSQs, always in a slightly different context so as to justify publishing a separate paper?
Anyway, I don't think now is the time for yet another research definition; to make worthwhile improvements on the existing ones we first need some new knowledge based on solid data.
What is long overdue, on the other hand, is improving the way we use the existing criteria.
First, we could do with better symptom definitions. The term PEM (which would better be called a feature or a phenomenon than a symptom) is applied to everything from early fatiguability during exercise to delayed-onset muscle soreness. The term cognitive impairment is applied to everything from being generally too exhausted to think clearly to highly specific memory problems. The term fatigue is applied to everything from sleepiness to feeling poisoned. And the term unrefreshing sleep is applied to everything from waking up exhausted despite sleeping through the night to day-night reversal and insomnia. Trouble is almost everybody assumes, wrongly, that everybody else shares their particular definition of the terms.
Second, we need to find reasonably foolproof ways of operationalising the criteria so even novices to the field can identify symptom patterns in a consistent & meaningful manner. And sorry, authors, but the DSQ ain't it (as discussed at length elsewhere). Most crucially we need to figure out how to ask questions about PEM that don't mislead people to confuse PEM with early fatiguability during exercise, DOMS, deconditioning and all the other stuff we've seen it confused with. Plenty of room for a whole horde of devils to slip into the detail here unfortunately. And that's not even counting wilful misinterpretations.
Third, we need to get better at comprehensively documenting individual phenotypes, irrespective of diagnostic criteria used (as long as the criteria include PEM). Yes, that takes more work and therefore funding but currently we're trying to interpret conclusions from Fukuda studies with unknown numbers of participants with and without PEM, CCC studies who use PEM synonymous with DOMS, and heaven knows what other confounders. Sure, there's a limit to how much detail can feasibly be recorded but we can surely do better than that.
By using existing criteria more wisely, if we later suspect a particular symptom or pattern may be really critical, or is defining of a subgroup, we can trawl back through the data to check. Plus it would give AI something to get its teeth into without risking too much GIGO. This, hopefully, can contribute to generating more solid knowledge about the shape of ME and help get us out of the chicken and egg situation we're in right now. Then we can refine the diagnostic criteria.
Thank you @Ravn for setting out the problem with all ME/CFS definitions so clearly. I think the heart of the problem is how PEM is defined and diagnosed, and I agree the questionnaires designed by Jason's team under the DSQ heading are unhelpful.
We need very clear ways to distinguish between:
fatiguability - immediate increase in symptoms and reduced function during and immediately after exertion
exertion intolerance - as seen in some heart and lung conditions that stops a person exercising at the time but does not have delayed PEM type reaction
post exertional fatigue - feeling tired/fatigued after unaccustomed exertion that occurs with healthy deconditioned people and anyone after a big exertion such as running a marathon, and may continue for a day or two
delayed onset muscle soreness (DOMS) - also normal reaction to larger than usual exercise or exercise that uses muscles not often challenged
post-exertional malaise - abnormal increase in mental and physical symptoms and additional symptoms, usually delayed by a day or two, and leading to greatly reduced function that can last for days, weeks, months or lead to long term deterioration. So far only really specified in ME/CFS and Long Covid.
To add to the confusion, some pwME describe their PEM starting immediately which may be true or may be a result of pwME experiencing all of fatiguability, exertion intolerance, PEF, DOMS and PEM, so it can be hard to say where the boundary is between the immediate effects of fatiguability and the beginning of PEM.
As far as I know the only objective way we have of determining the existence of PEM is the 2 day CPET, which ideally would be done before and after a clinical trial, but ethically can't be justified because it triggers PEM which studies have shown can last for weeks or occasionally longer.
We need very clear ways to distinguish between:
fatiguability - immediate increase in symptoms and reduced function during and immediately after exertion
exertion intolerance - as seen in some heart and lung conditions that stops a person exercising at the time but does not have delayed PEM type reaction
post exertional fatigue - feeling tired/fatigued after unaccustomed exertion that occurs with healthy deconditioned people and anyone after a big exertion such as running a marathon, and may continue for a day or two
delayed onset muscle soreness (DOMS) - also normal reaction to larger than usual exercise or exercise that uses muscles not often challenged
post-exertional malaise - abnormal increase in mental and physical symptoms and additional symptoms, usually delayed by a day or two, and leading to greatly reduced function that can last for days, weeks, months or lead to long term deterioration. So far only really specified in ME/CFS and Long Covid.
To add to the confusion, some pwME describe their PEM starting immediately which may be true or may be a result of pwME experiencing all of fatiguability, exertion intolerance, PEF, DOMS and PEM, so it can be hard to say where the boundary is between the immediate effects of fatiguability and the beginning of PEM.
As far as I know the only objective way we have of determining the existence of PEM is the 2 day CPET, which ideally would be done before and after a clinical trial, but ethically can't be justified because it triggers PEM which studies have shown can last for weeks or occasionally longer.
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Sid
Senior Member (Voting Rights)
I don’t think we need another consensus definition because such a definition would just be another opinion based definition with no basis in tangible biological mechanisms. No useful new data or diagnostic tests have come out since the IOM definition so I think people should focus on rectifying this rather than arguing about things that have no solution at present.
tornandfrayed
Senior Member (Voting Rights)
Another way we've been harmed by the bps cabal is in the recording and recognition of symptoms. It's clear from what they say and do that they have no idea what this illness looks like. I don't know if they ever ask pwME about their symptoms but they certainly don't listen. The model in their head just autofills, replacing anything the patient has said.
There is very rarely any chance to talk about symptoms in a clinical setting. If a HCP does ask, it's usually a matter of mentioning the 3 or 4 principal symptoms and how bad they are, quickly because there is unlikely to be any further discussion unless it's to diminish the patient's experience. I suspect most of it is never recorded, which makes surveys based on patients' electronic records pretty worthless.
Recently I saw posts by a clinician who denied that a sizable section of LC is ME. One of his arguments was that LC has many symptoms but ME doesn't. This is probably what most HCPs think - a bit of tiredness, a bit of pain, a bit of brain fog and that's it.
We as patients don't attribute all our symptoms to ME. It's only through discussions such as here that we can see common patterns in non-core symptoms and through research that suggests possible pathologies. Ironically, we may risk raising symptoms we consider non-ME with our GPs, and because the GPs also see them as non-ME, there may be investigation and treatment.
There is very rarely any chance to talk about symptoms in a clinical setting. If a HCP does ask, it's usually a matter of mentioning the 3 or 4 principal symptoms and how bad they are, quickly because there is unlikely to be any further discussion unless it's to diminish the patient's experience. I suspect most of it is never recorded, which makes surveys based on patients' electronic records pretty worthless.
Recently I saw posts by a clinician who denied that a sizable section of LC is ME. One of his arguments was that LC has many symptoms but ME doesn't. This is probably what most HCPs think - a bit of tiredness, a bit of pain, a bit of brain fog and that's it.
We as patients don't attribute all our symptoms to ME. It's only through discussions such as here that we can see common patterns in non-core symptoms and through research that suggests possible pathologies. Ironically, we may risk raising symptoms we consider non-ME with our GPs, and because the GPs also see them as non-ME, there may be investigation and treatment.
tornandfrayed
Senior Member (Voting Rights)
Going back to this about Nonrestorative sleep - my sleep is the opposite of this - deep, heavy, groggy, drugged, sometimes feverish. I have throughout my illness slept a lot, including during the day. Sometimes I've had 48 hours or more of sleep, only half-waking a few times to crawl to the loo and drink some water. I don't have a choice in this and as @bobbler said it's necessary, even though I feel awful on waking.
The Decode ME surveys are invaluable. There was also the ME Action Chronic Illness Adventure. I regretted starting it because it was so massive. However, it investigated 100s of symptoms, plus frequency and severity of each, so could be really useful. Does anyone know if any results have been published?
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Kitty
Senior Member (Voting Rights)
I agree, but think it's only practical to do that if they're broken down into groups of symptoms on questionnaires.
For instance, I'd never describe symptoms that aren't delayed as PEM—in my mind, part of the definition of PEM is that it is delayed—but if some people are using it that way, the two descriptions should be separated. 'Post-exertional symptoms' needs to be a category with several subsets.
Same for sleep, same for muscle symptoms, same for cognitive problems. It would make filling in screening questionnaires hard work, but would make for better analysis.
spot on - really well elucidated