The Concept of ME/CFS

Ditto, except, depending on the prolonged length of PEM, will stay as part of the illness e.g. very severe ME.

In my case I've experienced a 6 month crash - teetering between severe and very severe - which has brought with it partial incontinence. I don't know yet whether that will recede when I reach a relatively balanced state again at whatever level.

 

Crumbs, I feel as though the more I think about this, the less I know about…anything

 

I wouldn't look for evidence of PEM being something else. I understand it as a description of fluctuation. Wave on the sea are still sea, not some other stuff. Gusts are still wind. I don't see PEM as a 'different process' but rather the way the ME/CFS process behaves in time relation to stimuli.

From the perspective of being a physician trying to help, which I am not in terms of individual people, I will add, PEM is useful in differentiating mild or moderate ME/CFS from other causes of fatigue or whatever the symptoms are called. The occurrence of crashes and better periods makes that distinction. But for severe cases the distinction isn't so relevant because if someone is severely incapacitated and clinical review and tests provide no other explanation then there isn't much alternative to ME/CFS anyway - bar of course keeping an eye out for rare things if any clues emerged.

 

I'm now trying to get my head around how managed ME levels fit into the picture.

Do I call myself a very severe ME that is now a managed moderate or do I call myself a managed very severe ME that is now moderate.

 

For what it's worth - which is very little in the scheme of things - but as one small voice within a whole...
I am entirely comfortable with that perspective being accurate, and, were you my dr as an individual, it'd be such a relief that my doctor understood (as much as it's possible to).

I actually feel quite moved by your capacity to listen and hear Jonathan, it makes me tear up sometimes, the relief of being heard is so big.

 

I wholly agree with the point that you are making being something worth considering.

Sadly I think that the most important point to make in our whole saga is the issue of anyone who doesn't realise that their vocationally-focused training has not allowed them to focus on critiquing and thereby taking forward existing models and lessons (from history), and aren't expected to adapt these models to different contexts and 'always be testing/checking/looking for exceptions'.

I agree these professions have had their day in the study of ME/CFS, and underlining their deficiency vs the task required/skillset needed is necessary to define what is needed in its place. I can't think of a kinder way to underline it. And there might be other professions where the norm is theory-driven learning 'to do this' rather than critique it as a discussion point - and we aren't there yet on research to benefit from them either as we need people who want to have their eyes open.

It's a workforce they recruited in because the old guideline didn't want people questioning what those in charge wanted delivered no ifs and buts, and how they have reacted when faced with this change (and before it a lot of red flags that those further away from patients had to point out) has highlighted this even further.

We do just need curious scientists. And people who understand methods and research design and see theories for what they are: hypotheses to be tested on an externally valid population appropriately rather than edicts of how the world is that patients have to fit 'because they must always be true'.

As a side note a degree in psychology if it is scientific and BPS accreditation still requires the broad spectrum of areas should indeed be critical and have methodology as part of it (although this could be upped so that you have to be better at it in order to get a good mark/can't be scraping through on that and still gain a good mark due to good writing on the rest). This doesn't suggest that if a proper scientific cognitive psychologist did some properly scientific eye-tracking that would be an issue. It's a totally different subject area.

Clinical Psychology training isn't a psychology degree. And the therapists tend to be lower down the chain and not even all of these areas requiring a qualifiying psychology degree first, but just eg doing a qualification in the 'technique of delivery' eg 'professor of CBT' only looks at the delivery mechanism not questioning whether what is delivered does anything good or harmful. So it's almost an uber-version/issue of that.

Physiotherapy doesn't cover learning about psychology properly in a critical sense at all so I don't understand how we have physios psychologising patients. It's ridiculous. They aren't even regulated to do so like those who are in the professions for such tasks of unquestioning delivery. And yes, uncritical, because they can't be - they don't have the broad understanding in psychology even if they did a whatever later on in a niche specific. Then their underlings have to follow what they suggest on a specific that isn't even the same thing as the area they did that study in. It's all a bit weird.

And a strange gap psychology has been undermined by, having tried to have pathways to ensure all who did these things had to have a broad base in order that they understand enough about the human brain to be controlling for things like primacy-recency (that we all know) and other less well-known things in their methods.

 

I think it is worth considering adding the specialism of rehab medicine into the mix. This seems to either come with or have unfortunately developed a blind spot regarding appreciation of robust methodology (and how that can still balance with context and observing individual reactions to it ie observation not through a theoretical lens but scientifically).

And importantly I wonder whether due to its name has forgotten the null hypothesis/controls/idea that you might have patients you aren't 'actively rehabbing' and maybe 'nothing from the menu' can sometimes be better than 'which one from the menu'.

It's that concept of effort and behaviourism that is a problem when taken wholesale into a subject because it seems to have been swallowed as an ever-present potential causal explanation for anything that doesn't fit the expected outcome: 'that someone was just not doing things right'. ie the 'critique' is becoming misdirected .

 

My daughter is the same .
Interesting

 

I like the word concept. It's something I know from science and business, then I've seen it used in the social sciences but not in a belief-specific sense. You have 'concept cars' for example. Just because it is communication of an idea doesn't make it about beliefs. And I think bps will try that nonsense whatever it is called anywya. Conceptualisation sounds more like a process and less science, straightforward to me.

But it is also so context-dependent how things are received so I'm interested if your experience from being in the sector is that it would be better-received.

I think the move to remove the word fatigue is unfortunately vital. And yes, even when we use the term it is covering 100 different types we might have including a concussion-type feeling not being able to wake up or more physical types. But utter exhaustion, pain and illness is the point where we acknowledge it and relates to the crash bit and the 'catching up with us' bit. The bits that are distinctive and worth highlighting.

I also agree that certainly if we've had it long enough to stand a chance of describing it because we've had some busy vs slacker times then those with ME/CFS do probably 'look like' a pretty identifiable pattern. And would stand out like a sore thumb to someone who has met a few if we were on their ward for a week. And we wouldn't look like the old cliche or the name with the word 'fatigued' means people expect, but depending on whether they get sleep reversal, restless legs, too exhausted to sleep etc could have all sorts of other (wrong) assumptions made about them as poor best-fits because they don't understand this cycle.

Sadly bps ruin all sorts of terms we need and should be able to just use for straightforward meaning by capture, how to highlight this without having to acknowledge it was a cynical move I don't know other than being more precise and making sure it is differentiated as outside that term. But giving good, almost visually depictive, and catchy examples to go along with exhaustion and the term 'crash' is a good start. So that it also doesn't just get 'captured' and faded as a term too.

Many say you can tell a pwme by their eyes and I think that's generally true (like someone who has flu and a migraine trying to hide it at a job interview), over the assumption someone will always be walking slowly or seem sleepy.

I was thinking on the FM inclusion (and had points to add on getting away from that old habit of people thinking FM and CFS are two sides of the same coin with heuristics like more fatigue = CFS, more pain = FM... now we need to move to calling ME/CFS a condition identified by a PEM-based cycle with some other quite specific patterns of symptoms, rather than the cliched 'illness of exclusion', which has never been accurate and has inferences) and how that harks back to the deliberate non-specificity. Tired people it not really mattering which label they got 'because they all end up at the same treatment in some form' type attitude. Which is why we are in the pickle we are in with stats, funding, outcome info (and indeed 'value for money' like is it really effective) etc.

I absolutely agree atm the default is wanting to just keep it as another one of those bucket ones they chuck under MUS/functional pathway for the 'third way' in medicine, and that they are using a weak reconceptualising of their term 'fatigue' in order to do so.

I think shoving fatigue in very broad terms into all their surveillance questionnaires is a way of fishing out people with a pretty vast spectrum into this functional pathway - which then (once stuck under it) very much has its own concept of what that is. Much like the term 'mental health' uses saying 'everyone feels sad when their dog dies, gets dragged down by an illness I'm just asking you to say that's true because we will help you' to get something on someone's notes but then that in itself is being used to have implications/inferences about the origins or what their condition is.


It's just one of those things if 'outside the medical context' it might be technically as a broader category 'true', what it will actually mean pathway-wise inside that context isn't. And it seems once labelled with that one many have been trained not to be curious it might cover a range/isn't 'one thing' - and that bps one thing is wrong, and not going to get picked apart and differentiated any time soon. So it's not 'fatigue' as per all their literature, policies and pathways.

Shame they literally branded us with the term (which is why the acronym now needs to be encouraged to not be 'spelled out' and in particular sly questions or claims of 'not understanding it' to force us to spell it out and brand ourselves).

 

Just to add to this @Louie41 It wasn't until I hit very severe ME that I was able to look back and recognize PEM in my earlier years. In my earlier years I was describing symptoms as unusual and ' something very wrong'.

 

I read that a bit differently but wasn't on the forum when that happened so hesitated to comment - but I've also read comments saying he wanted his story to be told so.

I've read the following for example: https://www.s4me.info/threads/bob-robert-courtney.1068/page-8#post-175922

Which feels to me to be that same underlying 'theme' to Maeve or the other stories we see, just ending up in a different place that couldn't/was further away from those who were positioned to help with the actual issue he had during that 'golden time period' where one is just about well enough to seek it vs their overall condition.

 

I'm not sure whether sometimes it is just my being exhausted right now to think through what might be something more complex ie layered bits that is beign described here. Maybe I'm being thrown by the hot stove analogy which is conditioning of a form. Tho I get the concept of saying 'can't' in straightforward terms. It's a can't in the sense of the 'managing your energy levels' suggestions really doesn't work for the illness.

I get fatiguability (cognitive, just drops off a cliff as I'm still trying to steam through, arms pretty much immediate after eg doing something small above my head) and that was before I had anything that was muscle 'weakness' and strangely I'd have the carry a light carrier bag from a shop then arm shaking as I tried to lift a drink to my mouth at the same time period I was also on other days still trying to force myself through a gym routine which involved small reps (10 done very specifically) of relatively light weights for eg triceps and biceps.

I've also collapsed (despite by that point already felt like collapsing and had been lying flat whilst talking for a while) and then projectile vomited from my inability to stop talking in a conversation I had something to say/was enjoying but feeling it (being sociable and having years of these limits means you get times when you just can't help but pushing through, but also I go beyond tiredness where my sensible switch of 'you can't even think and are stuttering' switches off) ie pushing through. It's quite a physical task when you're 'done'.

There is also that logic puzzle we have historically of stimulant type things not working on the list of drugs tried/mentioned by the MEA (again I suspect on the medium and long term making it worse, not that we 'don't respond to those meds', although some might be that issue of 'over-stimulation' combining with ME/CFS badly too) and I sure as heck used caffeine, sugar, anything as a trick for that day (like loud music to wake up if I wasn't headachey, cuppa soup and moving from side to side whilst presenting to stay standing and talking, and definitely keeping pushing on to get adrenaline - but then the awful aftermath once home) to utterly force my way through.

But then eventually that fails not because you can't take the pain or signals etc, and you are lying on the toilet floor at work thinking the whole time hopefully your colleagues won't notice because its now 20mins and you still can't move, or collapsing mid-presentation out of a side-door whilst doing a surprise hand-over, waking up after having got out the shower half way thru to have to lie on the floor getting ready for work to find it's 11am. And all that happened was within 6months you got obviously iller vs not getting so much iller when I could finally have more rest ie the cumulative over-threshold (and rest needs to be counted as a component here as it needs to be rest at the time body needs it in the comfort it needs, ideally for the time it needs) was lower.

Of course as we all know we've been made to be frightened of presenting these results, even if some of us have naively described it fully after the first time of dutifully following instruction from someone convinced it was good advice. You get the message quickly it won't ever be counted even if someone believes it, and shutting up (and disappearing/hiding it) is the safest tactic. So the evidence 'got disappeared'. Even if apparently there are no tests showing it (who knows), it shows obviously except the risk is those who've been told it doesn't exist as an effect so 'it can't be that'. And we absolutely need the literature to be saying there are consequences like these.

SO I'm trying to put together these bits of nuance for 'fit' vs other things described and it's a bit of a brain-buster to think it all through.

 

I am not suggesting that the two situations are identical, but that they involve similar sorts of processes in combination. I also have variability in my ability to use my knees. If I have a viral infection like Covid, which I have had this week for the fifth time, then 'the power is just not there'. I am assuming that in ME/CFS the inhibition, maybe of a sort similar to that in viral infection, is variable, hence the concept of PEM.

If muscles were simply unable to contract I think we would constantly fall. All our organised movements are done using a servo system in which the messages from brain are mostly negative. The motor nerves to a muscle consist of both main power inducing nerves and gamma fibres that constantly test the state of contraction by getting feedback through proprioceptive nerves in tendons. The brain makes the muscle contract in the right patterns by sending minus signals that change the setting of the reflex loops involving the gamma fibres.

If the problem is in a signalling shift down at the spinal cord and muscle level, however hard you try you cannot get a response. This is one component of my knee problem. But there is another component that I can overcome if the situation is marginal - which is clearly informed by learning from past falls. In the case of PEM I am not suggesting that there have been any falls but that the system has learnt from previous episodes of later PEM. People with ME/CFS say that there are times when they can summon the power to do something aware that it may cost them.

I agree that no simple one step model will do but I think it unlikely that the problem is in the muscle's ability to contract per se. And there would equally be no explanation for why that varied.

Our perception of voluntary action is known to be very illusory. You can trick it in bizarre ways. All our experiences of not just the world but our own bodies are narrated in artificial stories in our brain cells. This is where Nath and Walitt end up oversimplifying and coming up with 'effort preference'. It may be a bit like saying someone prefers not to listen to classical music when in reality the problem is that there is a bug in the radio software that controls the channel selection button and however hard they try the radio keeps jumping to the jazz channel. The radio aerial is perfectly capable of picking up classical music but the radio is not capable of producing it on demand.

 

That is clearly not what I was implying at all!

The question is why cold sores crop up after a period of exertion. I don't think we have an answer but it has been standard dogma for a long time that herpes HSV1 infection can produce cold sores following general physiological upsets, presumably via hypothalamic signalling. The virus lives in nerves if I remember rightly. So there would be nothing very surprising if HSV1 popped up during PEM I think.

 

I think that is the thing, that we don't really know when PEM starts. And @AliceLily has some very good posts regarding the rolling PEM and cumulative stuff that just puts the cherry on the cake, along with the 'type of activity' vs 'type of symptom/PEM/fatiguability'.

The thing is I can talk about the things that have become hallmarks of time periods after 'physical' things for me - although really these are appointments where my legs are down with various different amounts of travel and/or talking and thinking. And the distinctive thing is perhaps orthsotatic-related as it is my calves going into this in overdrive type pain.

And I can think of what are commonground I've heard from other pwme as 'PEM-specific' and come up with 'needing to wee really frequently'

For me both of those particular PEM stage hit at 36hrs. But there are probably other things at other times I'm noticing less or are more specific to doing other things before-hand

But that doesn't of course cover the totality of what each 'PEM' is. Because yes there are some symptoms that get worse, some that I think are PEM but would have been there in the cumulative bit, and are in different stages of PEM like the aching wrists and ankles to the extent I need cool sheet, or other cold things.

And it was similar body-parts but different types of pain when I was less severe, but I was also doing different things in the lead-up (extreme ongoing shin or calf pain that finally might ease after 9 days but never really went)

yep putting aside whether it is feasible from an anatomical perspective it feels like a build up of something is going on.

I know this from the going from not functioning to ‘refreshed’ from the 9dsgs Strsight when I booked a week off every six eeeks.

I’ve read that paper suggesting lactic acid might turn out to have been misinterpreted and might be ‘good/help’ I’ve no idea as it isn’t replicated if that’s the case or just a ‘what if’ paper but it makes you think.

I think there is something in the recovery process that doesn’t clear as fast or repair as fast. And that constant only being able to have as much rest as you can fit in between working days if you were lucky and slept well keeps leaving something not fully done so accumulates.

the one time I had a better work portfolio for a session (and all that goes with that) I got told by my GP my bloods were the best they’d been since they’d started doing them so it does seem to affect general condition even if it isn’t in a consistent ‘flags’ across different people nor something that specifically describes the symptoms just side issues which I’m convinced a decline in me/cfs affects.

and it’s that pushing through despite the pain etc so it accumulates that seems to lead to that. If only I did listen to those signals. And if only some of those signals didn’t themselves prevent rest and tip into a vicious cycle around the very severe mark (a drain on the body so I bet ironically being in pain causes PEm in some cases and probably exhaustion etc)

I can understand the idea of saying ‘the engine warning light is on’ but not knowing what the fault in the car is. But I don’t think it’s a faulty light coming on by itself (and that having some special mechanism to slow the engine) because if you keep driving on it not only does the light burn brighter but the strange noises and judders and ability to start get worse and worse. particularly on a cold day, or hot day, or uphill etc.

And then you leave it too long or overdo it too much and the 9days no longer recovers to near where you were seven weeks before.

 

I have recently wondered whether the symptoms I experience after cognitive effort are fully attributable to the cognitive effort or could be attributed at least on part to the fact that it is carried out whilst sitting upright with feet on the floor. If I am at my desk and a wave of symptoms hit me (which isn't what I would call PEM as is immediate) but I have to keep working then lying on the sofa with my legs on cushions can enable me to keep going for a while. It isn't good for hand positioning though and causes pain flare ups after too long!

 

I have to do all cognitive work lying flat, which is why i find it so bizarre when I get bodily symptoms after it.
Just as an aside, in case it helps - I use an adjustable Lavolta laptop stand, and various small cushions and hand made little supports to get hands/arms in correct position to prevent pain. (so as not to derail the thread PM me if you want more info)

 

Oversimplifying what?