Why so little focus on Functional Disability and so much focus on “Symptoms”?

Absolutely agree, for trials etc. But when researchers try to find leads for identifying possible treatments I don't see thresholds as being something that can provide any clear clues. For diseases like RA you just accept that those sort of things are too unpredictable for one to be able to model meaningfully.

The problem I am seeing is researchers focusing on functional loss as if it was the direct target of treatment - so they go looking at mitochondria. And even worse, they do bad trials on exercise. My impression is that they haven't stopped to think what the symptoms are that are causing the disability.

 

But that isn't what the term means. It may well lead to loss of function but if we are to get anywhere we need to make sure we do not use terms both for the causes of effects and the effects of the causes - which is a mistake that has been rife in medicine but gets you nowhere.

(A good example is osteoarthritis - which is a term used both to mean a cause and an effect, with the result that understanding of the problem has not advanced an iota in my lifetime.)

 

It’s that horrible lying in bed all day trope as if it’s chosen isn’t it

but it’s better to be stuck that way not in pain unable yet to even rest and thereby getting worse if you keep getting PEM d on top

but for some reason no one hears that being stuck unable to do anything is awful and deserving of serious investigation snd hurried earnest work to cures and help that really could give us something back of a life.

yet I think this thing bias bigotry of people not being happy if you aren’t in the pushing it and getting worse territory but what they then see as chosen vs disabled people should be trying despite attitude

and then them being the same when we do do that to perform fir them ‘you must be able to come in or sit on phone fir hour like everyone else because it makes their life awkward what you have to request’ then makes you iller too.

we agree - these things do feel a human right that someone should care to fix for us properly not with trick therapies that leave us worse but they get their profit from coercing answers - because the world isn’t going to give us Lee way to survive in the state we do and will permanently require us if we want to not get no care or no money or no advice we can’t be disabled as we are

so I think we need a better phrasing of it to get it across that the function is the condition - it’s just the very nasty bps sophism that turned it into fatigue = ‘mindset

and are now setting to work on PEM

I also can’t emphasise enough how unhelpful I think using the term pacing is vs energy conservation and we are still missing many more accurate less manipulator terms that are relevant for severe .

pacing also makes it sound not like a limitation from illness but about ‘not letting yourself get the better of you’ and as if it isn’t something that applies to reasonable adjustments and others around you. When it’s blue badges to avoid unnecessary walks so you can save that energy for the loo or food when home and still get to whatever thing be it a service or office etc

and it’s that function - but only if it measured over really long timescales - that shows the long term deterioration from overdoing it is the illness and not ‘just’ PEM . And that matters.

currently lots of psychs claim ‘the illness can’t get that severe’ as justification it’s behavioural which is outrageous when it’s behavioural approach that’s caused it. But it also reminds me I suspect the bps attitude snd a lot of how things are written is about removal of liability from everyone around us fif the consequences we wear from things imposed on us either directly or thru refusal to give Lee way. Which of course is invited by their words and given free rein because maybe that over work didn’t cause it but if they had CBT to ‘not get stressed at four jobs’ etc type nonsense they think would muddy the facts in court of public opinion at least

 

Agree

we really need something that will fix the underlying whatever and hope that what’s happened to those of us who’ve got worse over a long time it really isn’t permanent based on how we vary over time and in and out of PEM

but even in these treatment by drugs they need I think much longer timeframes for measures because of what so many of our bodies have been thru for so long. Other things that are downstream might take time to repair as best they’ll get.

but at that point eg six months in and looking at function over a good six months then another after that you can check function had naturally increased, and that (in last six months) it hadn’t come with the usual ‘kicker’ of deteriorating and ending up in bed for having had a six months of pushing it

where the cheating stuff where coercion or words in mouth are used to create positive answers or the ‘feel better doing stuff’ drugs which don’t tackle the underlying issue just make it easier short term to breach threshold will show very different patterns - in fact consistent I think with the same pattern of what many of us ‘achieved’ trying to complete a course or get a promotion or keep a job by using caffeine and spirit to keep riding our limits

and I think that latter curve is worth being somewhere in the literature as the classic ‘hiw the illness deteriorated’ and ‘what it looks like to outsiders who don’t want to know what it feels like inside tgat body’ along with ‘what it might feel like to the person at the time’ as there are fundamental points where what we’ve said git disbelieved but were moments of truth where greater disability could have been prevented with useful action

 

It’s the fact that if you do more than you currently are doing not only will your symptoms worsen, but the threshold for your symptoms worsening will continue to lower.

 

That may apply to some PWME, but not all. For me, pushing my physical limits enough to trigger PEM reduced the ability of that exertion to trigger PEM. If I got PEM from riding 10 km, then the next ride of 10 km would not trigger PEM, but would take a longer ride to trigger.

 

So for you GET would help? Like the more you do something the easier it gets?

So if you push yourself a bit you get symptoms but then you have the ability to push yourself further? I got PEM once from riding a bike 10km. Have been bedridden ever since.

 

Yes, I guess theoretically if we aren’t able to adjust

ie a child having to go to school snd with a routine controlled, maybe even with people saying ‘stand up straight’ etc

then the symptoms would be more often ie constant and worse

I was having to work and whilst I had adjustments there were unavoidable issues like car parks being moved further away and until I could no longer do it that meant the symptoms including leg specific were constant and growing and my health become overall permanently worse as there was no compensating out that huge increase forced on me from it. Because I was maxed out on ever tenacious thing, did online groceries already, used every bit of time off for rest already etc.

We get worse because people make us fight during that moment of truth window where if they heard us and we had a few weeks sick leave then the parking was sorted we might recover. But instead the norm is often deaf ears whilst you are forced to carry on for an impossibly long time. Then people act surprised when you are then permanently ill ‘because they eventually have you half what you needed after six months if the added energy of asking’

 

This exactly!

And when I was at my illest only very minor symptoms triggered a big and longterm lowering of that threshold.

@Jonathan Edwards
Think of it as having to budget on a low income using a credit card, that if you overdrew at all, even just a tiny amount, you were are hit with high interest, AND a lowering of the next threshold for the big interest rates kicking in.

Very soon you learn to avoid all stepping into the red (that could be like mild ME symptoms) because you know you don’t have the means to pay back the interest, and are worried that you are going to be hit even harder for the next transgression. Does that make sense?

I am now more able than before. I have more reserves. I can dip into the red (and so have a few symptoms) because I seem to be able to recover from those symptoms (ie pay back the debt - or do the PEM time), and also not have my threshold lowered ( so after the PEM, I return to my status quo).

When more ill, I had to be much more cautious about ever dipping into the red ( so I tried to avoid having symptoms at all costs) because of the double whammy of both the interest repayments, which I didn’t have the income or savings to pay back (ie the PEM was miserable) and the punitive lowering of the borowing threshold along with dramatically increased repayment terms.

With all that in mind of course I’m going to do everything I can to avoid any symptoms (going into the red).

This is why focus on symptoms can be a problem. After many years of effective pacing, long-term ME peeps will know to pull back on even the whisper of a symptom to avoid the crippling penalties.

Yet we can also detect when the PEM threshold lifts a bit. I suspect this is because because most of us bump along close to it (we all have a desire to live well) and end up reining ourselves in on a frequent basis when our symptoms or PEM are greater than anticipated.

We will still do all we can to not poke the bear (to suddenly switch analogies!).

It is a concept that is difficult to explain, even to those that live with us.

(Couple of edits just after posting to make it make sense!)

 

Yes it’s the “cumulative PEM” thing. I overdo it a bit today, not much, a little rough tomorrow and the next day. I overdo it a bit every 3 days for two weeks, two months, six months….different story.

 

Yes, NICE appears to define PEM in terms of worsened symptoms only.

But the US Institute of Medicine, CDC, and NIH define PEM as a worsening of both symptoms and function as do the Canadian and ME-ICC criteria. From the IOM report: "PEM is a worsening of a patient’s symptoms and function after exposure to physical or cognitive stressors that were normally tolerated before disease onset."

As far as cause and effect - I don't think this is conflating those two - just saying that both of these are the consequence when people overexert, exceed their limited energy capacity

 

And at some point the function becomes a symptom unavoidably even if you only count pain or whatever

because you then can’t move for a week

but counting the symptoms after that as ‘less’ isn’t appropriate because we aren’t

now in severe that isn’t the case and Im getting to that stage of realising how (particularly in medical context) it’s not fair to have me try and explain to someone with a cynical face what happens to me when I’m sat up and need to lie back down. I’m so tired of the hurt of it all. We are boxed in where any word we say apparently makes us mad or inferring some science that isn’t proven or it’s caused by not doing it enough even though I tried to max out what I did as I deteriorated every bit of the way. I’m just fed up of the attack on who I am and my story. Why am I having to explain what people aren’t listening to understand or even giving politeness of attention for when I’m the exhausted one who that exhausts too. I can’t . That’s what I have to live in and endure and try and survive with. And yes I get symptoms too.

But let’s be honest all this is about not believing us in the bigoted hysterical woman pretend you can get away with it by pretending your sympathetic it’s about motivation and not some horrific catastrophe for a person that just needs peace and empathy to imagine what it’s like to try and survive in. It’s about trying to make us speak just so we wear ourselves out and they only listen to parse our words as we get more exhausted and say things wrong.

I may have had times when moderate but they’d be few because I was never able to have control to mean I wasn’t having to be over threshold cumulatively thanks to all the bps nonsense and how everyone sucks it up so even asking for leeway just wasted energy with whoever was going to ignore me anyway

No one cared then that my leg pain increased with moving the car parks away because I’m sure they thought I was wrong about my body because it would benefit me so we’re writing down those notes in that gross ‘patients feels/believes’

but if I’d known then that my function was that I couldn’t have a social life and for working I had to spend the rest of my time in bed and was in pain all the time

rather than ‘can you walk up those stairs’ as a one off or go to a supermarket theoretically even though I couldn’t in goodness knows how many years snd before that collapsed in them because other things meant I didn’t have a point I want too exhausted to


They moved away from function because its objective and because the Crawley eg al (2013) paper that included white and was the same time and design as Pace found that there was no change even in their functional scales (nevermind objective measures) just the Chalder fatigue

so that’s why no one is measuring function and moving to proms focused on even worse measures that the cfq- because no matter how much they have to manipulate things they only want to be proven right.

over a long enough time period and measuring period even we can’t kid ourselves as much with a functional scale. Even if we do adapt our frames of reference as we get more used to worse disability if someone asks us if in the space of a month we could do x,z normally or get to a supermarket reliably without adjustments or how far we now walk there’s less ability to self-kid vs the ‘do you feel more positive’

it’s just not used for deliberately all the wrong reasons

 

This is why FUNCAP is revolutionary

 

That’s a really important issue

and quite worrying that Nice isn’t the same so isn’t drawing that concept of deterioration in function from continued overdoing

 

It wouldn't help now, since I no longer get PEM from physical exertion. Before that, doing a specific activity would have gradually allowed me to do that activity longer without triggering PEM, but wouldn't reduce triggering from different unrelated exertion; I would have had to develop each set of muscles separately. I don't think that validates GET.

My comment was mainly to point out that triggering PEM doesn't necessarily reduce the trigger threshold or worsen future PEM episodes in all PWME. Theories shouldn't be based on responses that only apply to part of the population (of PWME) unless you have a valid explanation for why the other part has that response but also has some sort of counter overriding it.

 

What causes PEM in your case then? Is it emotional or mental exertion, sensory?

 

I think hypotheses in medicine have to be able to consistently explain the majority of what is occuring and yield sufficiently good predictions but they don't have to explain the experience of every single person, especially not when there are outliers, different kinds of comorbidities or a small percentage of people that will later get diagnosed with other conditions. In other conditions you will also find that certain medications work for some people and others don't, with reasons that are typically to complex for researchers to figure out. What the "majority" now means is an entirely different discussion and it is plausible that not everything that seems to be a representation of the majority on S4ME is also the majority elsewhere.

However, if I am understanding you correctly, your own theory briefly stated is "cumin cures a subportion of people that experience ME/CFS from PEM caused by physical exertion", but if one applies what you are saying above such a theory ultimately results in there having to be subtle differences in what is now considered to be ME/CFS (which I don't think is unlikely), so according to your own theory I don't see why one has to come up with a "unifying theory" that would have to explain what is occuring in every single person, precisely because your own theory predicts the existence of different phenotypes.

 

For what it's worth, I view symptoms and threshold imposed by worsening of symptoms as two different things. If I know that I'm not going to get any worse, I can power through the symptoms. But we do know that PEM is there lurking and ready to pounce if we overdo just a little bit. And that's what really keeps us from functioning, not the symptoms themselves. At least that's how I used to explain to people who says we all have fatigue and ache: it's not the fatigue and ache, it's the worsening of symptoms after functioning that is the disability.

 

Delayed PEM is a loss of function and distinctive from immediate PEM symptoms. They are not interchangeable in my experience. It's a surprise 14-16 hrs later that can not be predicted unless you know your own personal limit and from experience. I can not push through, it's full stop. I could not explain this any other way to my GP.