Pacing doesn't need professional guidance; it needs personal awareness and experience. Over time, PWME get better at judging when they can do a bit more, and when they shouldn't, and when an activity is worth the expected PEM. Professional guidance for pacing is for the professional's benefit ("See, I'm doing something to help the patient, and if it doesn't make them better, it's their fault for not trying hard enough."), not the patient's benefit.
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Pacing up - why it's as harmful and unevidenced as GET
- Thread starter Trish
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Kitty
Senior Member (Voting Rights)
Ash
Senior Member (Voting Rights)
Glad you’re strong now
I didn’t read @Trish s words on this as being related to whether or not people with ME can build fitness without triggering PEM. As of course some can. It seems from reports as if most can’t, or most can’t most of the time.
But even if that weren’t the case and only a few were harmed with no knowledge of who this may be, no way to assess or inform patient on risk factors in advance, and crucially no evidence at all that attempting to expand patient’s capacity envelope via a program run by a therapist involving the patient (re) learning how to do more, either helps them to actually do more or helps them at all, it’s just not ethical or ‘helpful’ to put sick people through this bizarre experiment. Over and over again.
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I think it's worth pointing out that many (most?) PWME want to be more active. They don't need a professional encouragement. A gadget that reliably warned of impending PEM triggering would be welcome, and would probably increase the amount of exercise people did, but lacking that gadget, people have to rely on their own judgement, and depending on the severity of their PEM responses, they may try to err on the side of safety rather than some trivial fitness improvement.
Professional judgement about how much exertion a person can do without triggering PEM is a non-starter. There is no professional data to support anyone being better at judging an individual's triggering than that individual.
Professional judgement about how much exertion a person can do without triggering PEM is a non-starter. There is no professional data to support anyone being better at judging an individual's triggering than that individual.
Ash
Senior Member (Voting Rights)
I agree.
However the only severity point at which a person with ME could actually be more cautious in a way that fell below their hard limits would be mild. Because everyone else is using up their whole allowance, plus some, just living most basically.
However people who’re mildly affected and therefore theoretically could keep clear of the danger zone, probably can’t actually do so.
At relatively milder stages people with ME likely have to keep working for economic reasons, and are only gonna crash out of the workforce when they’ve pushed on into deterioration to a moderate level, and simply can’t go on and when more likely to qualify for disability support.
So there are probably well off people who at mild levels can support themselves or be supported by parents or partners, taking a break from work or study and staying home on the sofa to recuperate.
But there is an abundance of anecdotal reports that those people who do the least at the crucial early stages tend to do much better compared to those who do more. That would seem to indicate that ‘under doing’ is the best of all possible recovery programs.
If indeed any one ever does under do, which I am doubtful of because avoidance of boredom is a very high incentive to act.
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Kitty
Senior Member (Voting Rights)
In the early stages, some would probably benefit from help with pacing down. I could have used it when first diagnosed; I'd already been ill for over 20 years, but I still struggled with feeling guilty or lazy when I took deliberate rest. It would have been nice to have it underlined, probably several times, that I was only ever comparing myself with people who weren't ill.
I still do it, specially when it comes to how untidy my sitting room is or grubby my floors get. But at least I do it knowingly now, meaning I can point the Finger of Idiocy when I catch myself at it.
I think they could use more information to convince them to err on the side of caution while they learn their limits. It might help to have someone they trust remind them that they might be heading for overdoing it. I just don't think that a professional should be deciding what level of activity someone else should or should not do, since there's no real data to base judgement on.
For people who tend to lose track of how active they are, perhaps a heart rate monitor alerting them to "think about what you're doing and what you've already done" would be helpful. I'm imaging the alert being some really annoying song meant for kids.
From the couple of paragraphs I've read so far @Trish this looks spot on. I've been doing too much reading lately so don't have many words in me today, except to say the cummulative effect of pacing up cannot be under-stated, nor the inherent fluctuating nature of the illness which can, and is, all too often turned back on the patient as their own fault in creating a boom and bust cycle.
GET - invidious
APT - insidious
[for APT read also pacing up and whatever they'll be calling it by tomorrow)
GET - invidious
APT - insidious
[for APT read also pacing up and whatever they'll be calling it by tomorrow)
indeed and who knows what other bodily things (like other illnesses, or bits of ME/CFS, for example I get skin conditins others get GI symptoms and so on) are able to resolve from enough rest and not being in the pushing it all the time which then mean that you suddenly are able to get under threshold
the only way the professional can help someone pace is by being the right type of professional and writing letters regarding adjustments and producing information that ensures supporters, relatives etc have the correct understanding.
I found out the other day that OTs have different qualifications that limit what they can do - so 'psych OTs' or OTs in another area can't do a full report in the way someone qualified to do those assessments eg in work or around the home would be
So we are being sent to clinics who can never do this, because unusually compared to any other clinic, noone there would be permitted to do such assessments or reports - although I'm not sure that even the GP referring or the partners or allied within the practice would be aware that those clinics are a weird type of clinic that doesn't offer that.
And the reason it isn't availabale generically is because indeed most clinics would have some consultant or specialist nurse or OT OT who could at least write back that someone's getting worse and a recommendation to the OT who could then write to the employer or whatnot.
I guess many GPs assume the reason they don't get these letters is because they aren't medically needed not because none of these basics are ever possible to be offered in the whole clinic they sign off as part of CCG or ICB to fund. As/If no staff member there is registered/qualified as being allowed to do them or medically specialist to be able to even monitor, spot or report on someone's health condition (for which they've been referred)
Then probably no GP or generic - who is used to receiving such reports as standard from any other type of clinic or referral that uses the term 'management', feels unqualified/unlicensed to start writing something about a specialist territory of illness they might actually know more about than the clinic staff but don't realise (because noone would assume they are that poorly staffed - and the staff certainly aren't confessing or often realising they aren't medically qualified in the illness, they've just labelled themselves as 'whatever it is they fancy delivering' being 'directed at' those patients. I mean to me that's misleading isn't it?)
It's pretty relevant when you think about the interim plan because if you think that many clinics are staff with zero staff who could do a damn thing to do with adjustments, despite us being fooled by their job title, and the fact GPs are told 'not to get involved' because we are a huge energy draw and they are to plough through ten min appointments so 'chronic stuff' should be 'dealt with by clinic' and all the other services have been fed misinformation that none of these are ensuring they are updating (because they don't want to) and then there are normally no services that stretch to providing local on the ground support that area specialist, and the generic ones are both inaccessible and if they know the illness its misinformation (making communication harder) and advocacy is poorer locally than for if you have any other issue because we fall between all the other groups that might have been set up eg to bridge gaps for eg ASD or mental health or physical health and so on it goes.
There is a massive gap which these clinics could fill - even with their pretend funding limitations if they just served ME/CFS (and not PPS or fatigue) and focused on monitoring and writing reports and inputting into eg getting those additional services better set-up that we fall through the cracks of - that they choose to take the money and spend on staff who both often can't and choose not to do that, because they want to instead do six sessions of therapy noone wants. Those 6 appts could be spread across 12yrs! Or 2-3 at the start and then moments of truth and every 4yrs ....so that they are keeping up the data... on the people who actually have the condition they are funded for
rather than the supply-led thing that only ends up seeing 'anyone but' then claiming 'they are experts or have experience in...' which is nonsense.
Most of them have never truly listened to one single severe patient and taken it in for 20mins in their life. So how can they know what ME/CFS even is given that's what anyone mild also has and can end up with if they get it wrong (and they are only going to find that lesson out by hearing or reading about how someone who pushed through ended up with consequences and the signals they felt, but the old misniformation and bigotry suffocated them into not being able to pace ... abusively I think .. unless you have unusual situation in life .. because everyone around us is/was taught to give us none of the leeway we needed).
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Agreed I think it is even more dangerous, and highly deceitful and long-term even more damaging in all ways. The longer and more embedded (so insidious) the more permanent the damage they will be doing which they won't take responsibility for but will have been for lying about 'won't harm'. I still cannot get my head around that 'biggest liability lie' where Gerada is in that old video telling the fake patient to push through 'because it won't harm her' - and at that point in time Gerada had no evidence it didn't harm and was happy and got away with teling that lie in training to tell other GPs to tell that lie.
They hadn't tested it didn't harm. They never have. They won't read the surveys showing the harm or allow patients to speak who were harmed without denigrating their reputations. So yes it's a lie because they never checked. ANd that's callous indifference.
But this makes 'GET' when they didn't measure the drop-outs and got the wrong patient cohort and refused to check for harms, look honest.
But here's the thing, when you are telling someone eg in their early 20s that then they need to start offering some fair lifestyle chances alongside that - not the odd editorial from the MEA of that one person who eventually found a part-time job in a museum.
These clinics should be focusing on taking responsibility for undoing their besmirching and getting serious adjustments from companies people might want to build careers with and writing literature that gets the condition taken seriously - all it needs is people to understand people will need individual working patterns.
And stopping wrecking their reputations writing nonsense about psychosomatic - whichever unveiled cruddy not hidden hysterical woman wording with fake diagrams pretending they are science they fancy doing to make themselves feel puff-chested.
Otherwise people are facing being told all this and no options to actually do that - because they might be told it but the medics aren't backing them up with letters. And in a career you only get part-time by getting to a certain level, or by doing a bottom of the run and pay job which you couldn't survive on a part-time proportion of.
THere's no full plan that adds up offered to us. It's actually a gap I now know is deliberate due to the background and thinking of those who were in charge for the last decades, but you waste your energy thinking that instead of them having their fingers in their ears because they know it's winding up people they are bullying (or maybe they are that deluded they think we are mad/imagining it) and can tell everyone 'don't worry about them we are treating their madness by not encouraging them', they just didn't realise it because maybe they lived a sheltered life.
to be fair that probably is indeed someone who could teach them a lot.
I suspect they have had to literally manage what they can do in a day vs payback in order to balance money vs longeivity (and sick days) and so on, and live on measures.
they seem to be doing a job where the responsibility is removed and call themselves professionals - which I thought was the definition of that word.
Nailed it. Nice salary, pension scheme...
I don't think there is even any malice in saying it, and those who don't think theya re doing it for this reason are deluding themselves.
the amount of people in jobs that were nicer and more admin versions than mine (that I had to finish myself off doing much more arduous roles to eventually get near) who decided to set themselves up as career coahces in their early 40s is phenomenal.
And these people didn't do it because they had a passion for enhancing their friends careers in the ten years preceding, so when they said it then it was 'oh I can see now that's always been your calling really' - it came from left field.
And physios moving out of jobs where they used to be doing manual things but by the time you hit your 50s they realised they couldn't do that physical stuff until they were 65 and it's all moved onto homework-based sessions in general in many areas.
Goodness why everyone who tends not to be the right personality type to do it suddenly wants to go into coaching other people - normally being incredibly naive in comparison to most as to what their lives are like, but there is a certain type who do - along with it being the sort of thing which has a bit more ability to set your own hours around certain committments more too (than if you were on a ward or doing x).
these people tend to not be trained in monitoring.Glad you’re strong now
I didn’t read @Trish s words on this as being related to whether or not people with ME can build fitness without triggering PEM. As of course some can. It seems from reports as if most can’t, or most can’t most of the time.
But even if that weren’t the case and only a few were harmed with no knowledge of who this may be, no way to assess or inform patient on risk factors in advance, and crucially no evidence at all that attempting to expand patient’s capacity envelope via a program run by a therapist involving the patient (re) learning how to do more, either helps them to actually do more or helps them at all, it’s just not ethical or ‘helpful’ to put sick people through this bizarre experiment. Over and over again.
I've no idea how forensic their processes are for diagnostics but due to the lack of medical qualification (that isn't psychiatry) there isn't an ability I think for them to be noticing if or helping notice how soemone's health actually is. WHich is a shocking indictment of a clinic
We've people there who are physio or OT or psych telling someone 'oh you could pace up' but who isn't medically qualified to spot if their health is deteriorating - because hey this old school bunch too don't really think of it as an illness, but 'fatigue' and their definition of that faituge is 'a feeling' and something which can be trained.
It is just a wholly irresponsible situation - which I see as worse than the recent fiasco about Physician Associates - where all of a sudden the medical associations claimed they were really concerned these people would be 'mistaken for doctors' or they weren't be upfront with patients about the fact thye weren't seeing a GP (not knowing these physios or OTs can't really tell if your illness is getting worse, despite them reccomending 'give it a go' on x, y, z)
And it mightn't be the place but whilst I'm sure there are always stories to be found , I'm not wholly convinced that the reason the medical associations suddenly got up and arms in support of 'sorting' Physician Associatiates was because of the patients' worries, or not just that alone.
Mainly because that's what they've done to us but with cherries on top of the icing, definitely none of these professionals are up front about their limitations in being not medically qualified with any of their advice and don't want to change it.
And none of their suggestions are based on safety-testing and yet they sure as heck want to infer it's a good idea and some outrageously say it is 'safe' when they are neither qualified to nor is anyone 1. because it isn't and 2. because they refuse to look into it/look away at anyone who gets worse.
Whereas this one is telling people who often go to the GP with serious life-changing symptoms and change in their abilities then get dumped out to clinics with spiels that might give them hope or they know they are beign silo'd... firmly being lied to that what they are being referred to is medical care
which isn't true in nearly all of these clinics. But they are set up to even lie to themselves that what they are doing is this, so the deceit is even worse because those doing it believe in it. And when they say things like 'it won't harm' but are firmly not even qualified to understand what it would look like if it got worse, or even measure someone's blood pressure. ...
How many of the people writing this are aware that if I physically overdo it that I get both physical and cognitive PEM, and overall/central PEM that doesn't 'look to the outsider' like they think it does. When I was a very fit person but getting very bad PEM (didn't know about PEM) I'd wonder why I couldn't wake my brain for days.
NOw this happened so regularly, and I have one of those memories anyway but it was also such a clear pattern not just to me, that it is plain that overdoing it will lead to sleep being affected and symptoms they probably would think erroneously were 'mental health' because whilst they pride themselves they 'get taught both sides' the medical and HCP professions are the most dualistic thing ever because anything they fancy suggesting is these days 'mental health' they do, but if its another illness they don't and in the end it's part of the same illness and symptom. But you can imagine me trying to say very clearly from the time patterns that it's not that (and these days I think the fact PEM is known about it would be clear it was exhaustion - at least people would have that language, and once you've heard it then to us it is barn door it's exhaustion). But I'm not sure I trust any of them would pick this up in these newbies talking about feeling fuzzy-headed all week from having 'paced up a bit' and come to the correct safety advice.
So none of these people could spot someone deteriorating if it hit them on the head and the patient told them it along with 25 experienced patients. They aren't qualified to monitor anyone. I absolutely doubt they wouldn't pick up on the 'over-threshold' showing itself as disturbed sleep (and would call that sleep hygiene and lack of naps) or brain fog (and would suggests something else silly) - yet apparently they'll advise these newbies how to spot if they are long-term keeping themselves always in the red zone, but encourged along by 'good feedback pats on the head' and adrenaline. At least with GET the patient was only being gaslighted at first, until they started getting iller because the symptoms would at some point be so obvious they'd know they were being gaslighted by comparison.
SO they aren't qualified to make the statements of 'we can still offering pacing up because I've seen the results' because I assume it is probably someone who isn't qualified to monitor ME/CFS. They've no clue whether someone's illness is worse / more severe?
In fact... they are deliberately not looking for it - and trying to have measures in 'anything but' , heck if there was such a thing as 'being fitter, but worse ME' that's what they are aiming for (sleeping 28hrs straight but I managed my 5mile walk) the thing is if you try and even achieve that (torture at the time) then in 6months time you are really done for, and for a very long time (because you've been doing it for so long - it's the long term stuff like this that did me permanently each time) and definitely not fitter.
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This is one of the best and most important posts on this whole forum, and it needs to be spread far and wide.
Thank you, @Trish.
Thank you, @Trish.
What they said. And especially this:
To boot it sounds like we might have physios or OTs or people not either qualified in nor licensed with a professional association and responsibilities of said registration basically creating psych reports on people in 'MDT' meetings. And I'm pretty sure any such reports would normally, if done by a proper qualified person, have been based on a heck of a lot longer series of interviews not assumptions and claimed 'observations' based on a glance or feel they got rather than you know 'a long observation session' from someone qualified in it.
I might have got this wrong, but reading between the lines it is starting to sound like there is potential for this to happen. And it being signed off as 'the clinic' or 'a multi-disciplinary team' is covering up for people perhaps noticing the jar of it, along with of course someone being sent to a medical clinic and a report coming back about something they weren't sent for?
Could/should this happen? Does it?
As I've said elsewhere, a terrific article by @Trish.
On Creekside's point about pacing not needing professional guidance, maybe just a pamphlet.
When you have severe ME/CFS, pacing is really hard. You need to marshall your capacity for activity so carefully, to survive while not going out of your mind with boredom or triggering PEM, to have a reason to want to keep living. Someone who has experience working out how to do that, maybe a parent or a partner of someone with severe ME/CFS, maybe someone who has been at that severity, will have useful ideas on how to manage. And on how to create a routine that helps carers manage, while also allowing for spontaneity that keeps life worth living.
Also, I think helping children pace (and helping their families support their child to pace) may be another area where a pamphlet doesn't necessarily cut it. Do you persevere with school attendance for the social benefit, or can you achieve that in some other ways? How to balance education and social development and fun and keeping well? How to keep a child safe when they desperately want to go out and play football with their friends? How to manage pacing when the child is having a growth spurt?
I think there is a role for professionals, for people with real practical knowledge, so that every family doesn't have to learn everything about living with ME/CFS by trial and error. When dismissing those who would push GET or pacing up and rightly noting that pacing is a self-management technique, I don't think we should shut the door on the benefits of having people with real expertise and humility available to help.
On Creekside's point about pacing not needing professional guidance, maybe just a pamphlet.
I've said much the same myself. But actually a member here said something along the lines of 'hang on a minute, there actually is a role for professional expertise. I would like some help with pacing'. And they were right.
When you have severe ME/CFS, pacing is really hard. You need to marshall your capacity for activity so carefully, to survive while not going out of your mind with boredom or triggering PEM, to have a reason to want to keep living. Someone who has experience working out how to do that, maybe a parent or a partner of someone with severe ME/CFS, maybe someone who has been at that severity, will have useful ideas on how to manage. And on how to create a routine that helps carers manage, while also allowing for spontaneity that keeps life worth living.
Also, I think helping children pace (and helping their families support their child to pace) may be another area where a pamphlet doesn't necessarily cut it. Do you persevere with school attendance for the social benefit, or can you achieve that in some other ways? How to balance education and social development and fun and keeping well? How to keep a child safe when they desperately want to go out and play football with their friends? How to manage pacing when the child is having a growth spurt?
I think there is a role for professionals, for people with real practical knowledge, so that every family doesn't have to learn everything about living with ME/CFS by trial and error. When dismissing those who would push GET or pacing up and rightly noting that pacing is a self-management technique, I don't think we should shut the door on the benefits of having people with real expertise and humility available to help.
Sasha
Senior Member (Voting Rights)
I thought this was great, @Trish! And it came as a helpful clarification of things and as a reminder to myself not to push my activity (a thing that we need constant reminders of). Thanks for all your work and thought on this - I think a lot of people will find this useful.
I agree that this would make the basis of a great contribution to that project but I think we need to think about what features those pieces should have, in terms of length, references, structure, and so on. I don't want to derail this thread by talking about them here but I hope we can have that discussion at some point, maybe on the other thread, when the committee are ready.
Thanks again for putting the time into this - I hope it made the recipient think!
I don't want to derail either, so I'll just say I think there are likely to be different categories of material published by the forum, which can include short fact/information sheets and longer articles. If that happens, this sort of article would fit in the latter category.