The Concept of ME/CFS, 2024, Edwards

I know you’ve used the term subtle in a different way (ie talking scientifically) but in reality PEM isn’t something that is subtle when you see it in someone like me. I don’t know whether during glandular fever you had days where you’d be out of it eg fur 40hrs straight. Then move for an hour and back to the sane for days. Goodness knows what it looks like to outsiders but it’s completely and utterly out of it and debilitated when it’s accumulated and absolutely defenceless. I’ve had it for over a week whilst on a holiday so nothing to do with stress or preference when you’d rather have scraped out to a sunliunger if it was just tired. And there’s been no level of my illness where that severity of that has been different so I don’t get people describing PEM like being tired.

The important bit is that those who’ve had to keep pushing beyond this threshold not only had the most misery of a life doing so but ended up with deterioration from it . You keep having to live in a world of there always being some new undermining out their foot out ‘because think they know better’ no matter how ill you’ve been made from being tortured by not being believed or ‘just try and if it doesn’t works’ over and over until you can no longer fend gif yourself there is still a new awful person who comes in and say don’t help them

it’s a living nightmare of callousness and deterioration and being stared at fir the impact of that as pathetic to justify the next round of watching you scrabble with even more disability to survive whilst being ridiculed

so it does operate like a progressive dusease if you have to try and survive and you live in a world that acts as BACME and others suggest they either should or can . One where you beg for a break and just get your energy wasted.

I’m sorry but I jettisoned me for many years thinking I had the muscle but but wasn’t sure on the brain bit. But the reaction fir me is so extreme my life has been literally like watching the videos from the 90s of Kleine Levin or sleeping princess except being forced through cruelty to ‘make myself work’ so I’m that inside with twenty hours of planning and scraping and caffeine just to look ok enough people stop threatening me . And then being able to find some time I can hide from people and be safe and get that collapse into it for those days I can due to having exerted.

all I’ve had all my life is idiots standing round me talking nonsense about stuff I should do whilst I felt like I was scrabbling on the floor and their ideas summed up to treating me like I was behaving badly and threats.

then then being smug as if it was then as I faked at great pain to me and aftermath and long term throwing my body down the well . And now I’m stuck and can’t move or speak much still no one believes me and just runs to give their help to the ‘fatigued’ because they are easier to help and there are no services gif us still. They don’t even want to give us as much help as at least acknowledging there is no help and backing up our testimony we have nothing we can access.

I’ve never been able to escape being forced constantly above threshold and now I’m in a terrifying place.

cfs is a real problem because it’s permitting resource to go anywhere but us and fir us ti be treated like we are naughty rather than the ones who tried the hardest

it’s clear there is something medically very wrong with me but as soon as someone was allowed to put that label on me no one investigated with any proper gusto just that feeling of the odd but from someone doing their best but still helping the person who might be ‘functional’ . Whilst I was left to try and make people happy in a workplace by overworking to compensate by having a use desoite not being able to be reliable due to my body.

that we are getting conned back under BACME who the psychological harm of being controlled and having my voice when I tried and used all my energy to explain the symptoms over rude it with rumour. After all this struggle. Still no one knew who will just see or hear me and not try and control me. I can’t have that anymore I can’t tell you how horrific the impact that has been. And giving voices who had something twenty years after I was quietly struggling thru, git lots of space vs me and ‘recovered’ from whatever tiredness they had then expecting me to listen to their nonsense when if they did have the same thing the difference was both severity and how different our worlds were to us.

every day is how am am I going to manage to do something impossible otherwise I won’t survive now. And finding out no help is accessible to me then anyone I tell first doubting me then covering it up as if they don’t care or see it as my fault or it’s just a little thing ‘because others have cfs’ in their mind.

mots hard to describe the horror of how the world is to us. I think I have always had something quite different to others even when fir me it’s been more mild and I’ve been less debilitated between cycles but I don’t hear of others not being able to wake at all and scrabbling like a cockroach on their back whilst being shouted at, still out of it just desperately trying to find either somewhere safe to collapse or caffeine to drink fir ten hours to finally be able to speak fir a short time to defend myself. Whilst in agony with aches. Then some idiot telling me how to use my time I don’t have. The same ones responsible for the world I’ve been surrounded by.

 

I think syndrome is probably right for the collection of symptoms presented.

Postural Orthostatic Tachycardia is present in healthy people, that disease requires the Syndrome to be POTS.
Irritable Bowel Syndrome is the same.

So while CFS has the Syndrome part down, what should be the defining words before the Syndrome word? Post-exertional Malaise Syndrome (PEMS) or Exterional Intolerance Syndrome (EIS) or Post-Infection Chronic Syndrome (PICS)?

 

DEID - Deteriorative Exertion Intolerance Disease.

 

Scottish for “dead”

 

But I think that calling it 'chronic fatigue syndrome' makes it very easy to continue to treat it as an issue of deconditioning. A name related to PEM would carry a warning against 'pacing up' in the title.

 

I agree with Kitty that it probably doesn't make a blind bit of difference. Adding in PEM might well make things worse. The problem is an attitude amongst health care professionals who still see themselves as Shamans curing the sick with magic potions that restore twisted souls.

Chronic fatigue syndrome is no less appropriate than 'systemic lupus' or 'gout' (a drop or 'goutte' of 'rheum' fluid) or osteoarthritis or polymyalgia rheumatica or ... all of which are just labels whose meaning is irrelevant. There is no logical link between fatigue and deconditioning. It is purely a reflection of the prejudice of those who want to therap.

 

I've had it explained to me by those that propagate GET and CBT that they think that it's kind of like central sensitisation but with fatigue instead of pain. The exact mechanism isn't known but it's the sickness behaviour of fatigue upon acute infection that continues chronically because there's a positive feedback loop or a failure to reset to healthy.

I'm not sure if you've heard that before but that's the level of thinking around the problem. I think there's a simple lack of understanding of how big of a leap of faith that is biologically.

 

I think the failing in the definitions of ME/CFS is that the clinicians and advocates defined the disease around symptoms in such a way to be inclusive of a large range of patients from outbreaks. A focus on the most consistent objective observation or pathology would have been more helpful even if you excluded a lot of people because of it.

Perhaps the approach should be an umbrella term like "inborn errors of metabolism" or "mitochondrial disease" but underneath you have all manner of more specific disease defined by the specific protein impacted.

 

Maybe we need a PROM. Not the one the MEA was involved in; one that asks people newly referred to services to give a snapshot of their lives before they became ill.

Did you work or study, or care for someone?
What about leisure time? What sort of things did you like doing?
How often did you see your friends and family?
Did you go on holiday?

What about now?

I get asked this every year in health and social care contexts, presumably because it offers a rough picture of function and wellbeing that can be tracked across time. It only takes a few minutes, doesn't need medical training, and might be more accurate than numeric scores; saying whether you can still walk the dog is a lot more concrete than assigning a number to twelve months' worth of symptoms.

If something like it isn't done in ME/CFS clinics, I'd quite like to know why not.

 

And a thousand variants on it, yes.

A feedback loop is not unreasonable but traditionally the two problems were lack of any testable detail and lack of any supportive evidence. PACE showed that the evidence is firmly negative. The recent more detailed story based on systems theory and predictive coding in brains is frankly back-to-front, which just shows that there was never any real thought behind the ideas.

 

Is anybody fighting this stuff in the literature?

 

I think it may be simpler than that. Those trying to define ME wanted to include the features of the acute 'neurological' illness in the definition when that has nothing to do with the chronic disabling illness that may have followed those and other infections. This re-emerged with the ICC, which were daft.

The CFS people just wanted to play with sad people feeling tired and magic them better with words and exercises.

But those are causal concepts and without a cause known we have no valid concepts to bring in.

 

Stuff doesn't get fought in the literature. It just gets forgotten when appropriate. The tradition in scientific literature is to offer new ideas and evidence and let bad ideas die on their own. I know that doesn't help patients but it is the reality. More recently letters and blogs that criticise are more common but they rarely appear in journals. Critical editorials do exist but they need the approval of editors - who are mostly too dumb to see the reality in situations like this.

 

I think this makes sense.

When I ask myself how I would recognise ME/CFS I actually think that none of the stuff in the diagnostic criteria lists are very relevant. I see it as a condition with whatever long term disabling symptoms, of a nature and time course that don't seem to make any sense in terms of what we understand of physiology and pathology but have a significant common pattern. The idea of a 'crash' is as useful to me as anything. Without the pathology multiple sclerosis might be just as puzzling but we do have pathology there.

 

Apologies for just popping in.

There's a new review by another 'highly-cited researcher' -- and it seems to me @Hutan 's new thread reviewing research on Cortisol in ME/CFS came just in time.

Review by George P. Chrousos:

https://doi.org/10.32388/5QVYMU

Wikipedia page on the reviewer:

https://en.wikipedia.org/wiki/George_P._Chrousos


Forum thread on Cortisol level in ME/CFS:

https://www.s4me.info/threads/cortisol-levels-in-me-cfs.41615/

 

@Jonathan Edwards did you see there's also another reply to one of your replies? Thought it would be interesting to see if / how the mentioned research on LC has been discussed on S4ME:

https://www.qeios.com/read/42YNT3

Not able to follow the discussion here at the moment, but am happy to just see all these comments -- even if some (most?) also seem to show how common it is to misunderstand each other -- and again even if people *think* they agree.

Also, I think it's extremely helpful to have this exchange immediately visible on the article, and will stay there linked to the accepted article, no matter whether updated or not.

Do others find all that encouraging, too?

 

Which is invalidated as the explanation by the examples (such as my own) where the acute infection was completely asymptomatic, but where that acute infection leaves immunological evidence, identifiable in hindsight. That might be something straightforward and established such as the relevant antibody titres, or newer and more clever techniques involving T-cells as biosensors.

For me there never was initial sickness behaviour, but slowly... and later very suddenly, autonomic abnormalities developed, then a hint of very mild fatigue in isolated muscle groups, then gastrointestinal intolerance, then headache and sound hypersenstivity, until finally a full-on crash with devastating fatigue / near-paralysis, associated with gut and sleep failure, and inability to tolerate any head-up. All developing on a timescale of months, while I continued to try to live normally and exercise, dismissing these developing symptoms as something likely "post-viral" that would resolve soon.

Their ideas just bear no relation to reality: simplistic, at the same level as someone in authority stating we can reduce the number of infections in a pandemic by not testing for the infection. "if we didn’t do any testing we would have very few cases".

 

Yes I pushed back about a lack of evidence and they agree there is a lack of evidence but added that the research to produce evidence hadn't been done. I feel like they think the theory were like the sunken titanic, "we know it's real and it's valuable but we don't have the time or money to actually produce it".