UK: Physios for ME

PhysiosforME said:
Thanks for the feedback - interestingly it is one of the phrases that really helped my son understand what pacing meant.
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It's problematic because it's been weaponized in the BPS/MUS model. And because brushing one's teeth does not qualify as a "boom" and yet it is used in that sense in the MUS model. Might as well describe one very drunk guy with a bent-out-of-shape rake as an invading army armed to the teeth with deadly weapons if we're going to call trivial exertion a "boom" of activity.

It's hard for concepts to make sense when their primary users intend to use it to confuse. It's clearly their hand-wavy explanation for PEM, even though it doesn't fit in the slightest.
 
PhysiosforME said:
Thanks for the feedback - interestingly it is one of the phrases that really helped my son understand what pacing meant.
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I guess it depends what the notion is that gets put across when talking of boom and bust. I suppose, thinking about my wife, if she was not so skilled at her pacing, and maybe pushed herself too hard on a positive half cycle, then she would indeed come a much more severe cropper when dropping into the negative half cycle.

I think the worry is that BPS folk have a way of implying that a boom and bust activity pattern explains why pwME fail to progressively improve overall, blaming the patient for setting them self back each time and thereby undermining the progress that GET would otherwise supposedly achieve. Which is tosh of course.

Question: When someone is genuinely deconditioned and otherwise healthy, and you have to help them get back to full health again, does the notion of boom and bust genuinely apply to those patients? Do they need to find a happy medium between pushing themselves hard enough to recondition, but not too hard lest they undo their progress? I ask because it feels like that is the philosophy being applied to pwME as well, given the deconditioning theory.
 
Also “Boom and Bust” fails as a model, if the belief is that ME patients are just in need of re-conditioning.

No-one when trying to get fit, aims to steadily increase each and every day. I mean if you were training for a maracycle, you would not move up the miles incrementally each day, ending up doing 99 miles the day before your 100 miler. Athletic training is all done in cycles that alternate training days with rest days.

Yet this cycling of activity, is labelled as Boom and Bust when ME patients engage in carefully considered extra activities, sandwiched with rest before and after. No healthy person does an exactly consistent amount of exertion each day, so why expect it of ME patients? Maybe it is because consistency is not possible, so there is always a way to say the patient could have done better?

I wrote a blog post some time ago. At the time I didn’t find the “Boom and Bust” phrase as controversial or annoying as it has more recently become.

"Play-Up & Lay-Up" not "Boom & Bust"
http://sallyjustme.blogspot.com/2014/09/play-up-and-lay-up.html
 
PhysiosforME said:
Thanks for the feedback - interestingly it is one of the phrases that really helped my son understand what pacing meant.
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Many pwME prefer push & crash to boom & bust. Not immune to misinterpretation either but at least, unlike boom, push signifies an effort beyond what's easy for you if you're healthy and beyond what's safe for you if you have ME. And it's easy to understand.
 
Sly Saint said:
in case you haven't seen them @Ravn put together some excellent docs on pacing, PEM
https://www.s4me.info/threads/feedback-please-draft-info-sheets-pem-pacing.13712/page-6#post-252575
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Having looked at the Pacing guide, I would just comment that the objective stated for pacing will likely vary from person to person, both in terms of their individuality and their illness severity.

For my wife her pacing is not to eliminate PEM altogether, but to limit its severity such that her overall quality of life is as best she can manage. For others it may well be a different goal, often driven by necessity.

See my post further up https://www.s4me.info/threads/news-from-physios-for-me.15145/#post-266428.
 
Keela Too said:
No healthy person does an exactly consistent amount of exertion each day, so why expect it of ME patients?
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I think it's a psych thing - intended to break the subconscious/psychological link between activity & symptoms - comes from operant conditioning theory.??? I think??? I sure I read Ellen Goudsmit explaining about it ages ago but I not good at explaining. Something like if you do the same every day but your symptoms still fluctuate (their theory goes) then it will break the link in your mind that activity = symptoms.
perhaps @Joan Crawford could explain that better, or correct me.

@PhysiosforME the podcast is ace well done :)
 
Barry said:
For my wife her pacing is not to eliminate PEM altogether, but to limit its severity such that her overall quality of life is as best she can manage. For others it may well be a different goal, often driven by necessity.
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i agree. ME is a marathon rather than a sprint and sometimes, when we have enough wiggle room to make a choice, we have to balance our mental health needs with those of physical health.

For some, pre covid lockdown, that might be a simple coffee out with a friend, or sitting outside our backdoor for a few minutes or a brief phone call with a family member or friend. Even though there will be payback

In a condition that takes so much from you for so long and is so stigmatized the need to balance mental and physical health is extremely important.

Yet another challenge the very severely ill face.

I also echo the comments above - I am very grateful to you for all your efforts @PhysiosforME. It is very heartening to see you making an impact.

We may challenge an idea or disagree from time to time but it is in a spirit of collaboration. The "boom and bust" theory made some sense to me as a newly diagnosed adult but hindsight and conversations like this one has made me realize that such an oversimplification (for an adult at least) can be counterproductive to managing life with ME.
 
JaneL said:
Thanks so much for your ongoing work @PhysiosforME. I have shared your stuff with a physio friend. She tells me that a member of her team who is off work with ME has also sent your information to her recently and that she will go through it. It seems like your work is having a big impact :thumbup:
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Thank you for this - great to hear we are reaching other physios which was always our intention
 
JemPD said:
I think it's a psych thing - intended to break the subconscious/psychological link between activity & symptoms - comes from operant conditioning theory.??? I think??? I sure I read Ellen Goudsmit explaining about it ages ago but I not good at explaining. Something like if you do the same every day but your symptoms still fluctuate (their theory goes) then it will break the link in your mind that activity = symptoms.
perhaps @Joan Crawford could explain that better, or correct me.

@PhysiosforME the podcast is ace well done :)
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That's what CBT/GET for CFS is aiming to do. You explain it spot on. :-)

CBT/GET for CFS is aiming to 'help' the patient to break the cycle between symptoms (these they believe you have been conditioned to (over) react to through experience - rather than disease/bodily dysfunction process) and then experiential learning.

So, for example, if they can 'encourage' patients to be more active (via CBT/GET methods) then their therapy holds that patients will gently learn over time that they had nothing to fear. Essentially, patients can be deconditioned / have their fear(s) extinguished - in a systematic and progressively more ambitious program of increasing activity and decoupling from symptoms - in a similar way to how phobias are treated. Basically: they think patients' fear of activity along with excessive symptom focusing keeps patients disabled/trapped. In their heads symptoms are all self generated from within / are the patient misinterpreting benign bodily sensations / overly focused on minor symptom and so forth. There is no room of biological issues, not even a nod to physical possibilities, dysfunction, disregulation, disease.

If all that above were true, then imo, CFS or MUS would be fabulously straightforward to treat.

But alas, they (CBT/GET for CFS friendly folks) present no such convincing evidence that what they propose works - either theoretically or empirically.

It occurs to me that the CBT/GET for CFS/MUS crowd have a very narrow focus (perhaps this is common in academia - I don't know - I have no experience here but I tend to think many academics work well collaboratively......) - But it clear that 'it' is determined to succeed - in spite of contradictory evidence. It's a closed shop of researchers with perhaps a lot of group-think. Lots of ugly in-group; out-group dynamics. And, of course, then lots of fear and cognitive dissonance - that they might actually be rather barking up the wrong tree. So, they vent that anger/fear back at patients; people who won't believe them (other researchers) and so forth - hence the thin skin to being heckled transmuting into 'threats' by patients.

When objective measures of activity are used e.g. Black, O'Connor & McCully (2005): "Overall mood and muscle pain worsened in the CFS patients with increased activity." That objective evidence matches patients experience - time and again.

I/we have no idea what patients actually do in CBT/GET trials as patients have not been monitored objectively: during, pre or post. Nor has anyone to my knowledge defined / operationalised deconditioning and demonstrated objectively that pwME are deconditioned pre CBT/GET for CFS and then not deconditioned post therapy. That 'should' all be easy to do if they were talking about observable concepts.

So much that could be done to demonstrate their theories and ideas are good proposition / sound - but alas so much avoided.
 
Hmm, I'm not sure about using the ICC criteria for ME (with its specifics like ion transport impairment) in this comparison. [Edit to add: Listing like this makes it seem like all the symptoms listed are a required part of ME, which they are not, eg not everyone with ME has POTS]. Also it makes it look like ME is something different from PVFS in terms of symptoms, and that the ME symptoms only develop after 4 months.

The trouble is, PFVS can be anything from not shaking off the active infection for a prolonged period, to tiredness and feeling low after a viral infection, to ME that starts straight after the infection but is waiting to be labelled that according to some arbitrary cut off point at 4 or 6 months. It is only retrospectively that we are sure that it was ME all along if it goes on for more than a year or so.
 
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adambeyoncelowe said:
I probably would've lined up the symptoms for ease of comparison. E.g., putting cognitive difficulties side by side in each case. It just makes it easier to see what they do/don't have in common.
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Yes exactly this - when I saw it was a comparison that’s what I thought it would be - I was rather befuddled by the skipping around trying to see the read across or lack of.
 
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