cassava7
Senior Member (Voting Rights)
Another LP acronym — the coincidence is unfortunate.
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Effect of Pain Reprocessing Therapy vs Placebo and Usual Care for Patients With Chronic Back Pain an RCT, 2021, Asher, Gordon et al
- Thread starter JohnTheJack
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Another LP acronym — the coincidence is unfortunate.
Agreed. At least using brainwashing makes people ask 'in what' and think that could be negative as well as anything else and puts the focus exactly where it should be: 'where's the evidence that is both useful and won't backfire?'.
And when we think about the 'false beliefs CFS-CBT' that seems little different in premise to the gay conversion courses' aim of teaching people you can choose or that something is based on beliefs rather than 'is'. I see no benefit when I see charities calling it psychology (which too many laypersons assume means it is 'good') - at best it is a behavioural paradigm using pseudo techniques to change these to something at odds with their body. Why is the CFS one not noting this and getting outrage people actually did this too? It's important for both and any others that are stuck under these dodgy ideas that they are clubbed together and 'outed' as being some of the things that have been believed in and done under the category-label of mental health/psych.
The harm of, even if it was hi-tech like they infer (rather than a bunch of people saying persuasions and manipulations to get a patient to think like a bigoted layperson about themselves), that idea is for some reason never investigated or seen as questionable and potentially damaging - I find it weird that is lost into 'taken as given' under the distraction blather that brainwashing is good by naming it as something else.
That they don't care about this is evidenced by the never follow-up long term and properly where it is out of the control of the investigator. Where is the yellow card reporting? This is free access to people's minds and lives and feels like old psych experiments in the 70s and before you hear about, so where is the register that requires follow-up on these things as they are far from non-serious. Particularly if you consider only the fact it deprives access to real investigation or treatment in the first place being a serious issue for those injuries that could be fixed biomedically. But also, ironically for their press claims, I imagining this is incredibly high risk for damaging mental health/causing psychological damage
- acknowledgement of which would mean at least there would have to be sections in these reports where these aspects (risk) were discussed and would lead to better thought-through and less off-the-shelf of nonsense treatments that didn't need to have safeguards built in.
shak8
Senior Member (Voting Rights)
Great if you can be taught to ignore chronic pain (mostly used on chronic back pain). The trick must be to convince yourself that you are the cause of the pain or the pain continuing.
If your nerves are churning out aberrant pain signals and won't stop doing it, though drugs mask that effect somewhat, then how is that under your control? This is insulting to people with moderate to severe chronic pain.
The adherents to this approach are using the post hoc ergo propter hoc fallacy (I got better therefore it's because I had wanted to get better...and presto chang-o, magic voila).
Improvement is likely due to unknown reasons, one is based on the premise that the body does try to heal itself via various mechanisms.
My antenae are activated by this sort of practioner: to me it reeks of an easy (read: lazy) way to practice medicine or psychology and still make money.
If your nerves are churning out aberrant pain signals and won't stop doing it, though drugs mask that effect somewhat, then how is that under your control? This is insulting to people with moderate to severe chronic pain.
The adherents to this approach are using the post hoc ergo propter hoc fallacy (I got better therefore it's because I had wanted to get better...and presto chang-o, magic voila).
Improvement is likely due to unknown reasons, one is based on the premise that the body does try to heal itself via various mechanisms.
My antenae are activated by this sort of practioner: to me it reeks of an easy (read: lazy) way to practice medicine or psychology and still make money.
Mithriel
Senior Member (Voting Rights)
Comparing CBT for ME with gay conversion therapies is exactly right. Let's face it they want to change our slothful, self pitying ways! But in the same way you can't change someone from being gay we can't cure our serious biological deficits. Both things are doomed to failure and that just adds to the moral outrage felt about us.
The instructions in the DWP handbook which said "People with ME think they can't walk but they could if they wanted to" are typical of the way ME was dismissed as a moral vacuum.
The instructions in the DWP handbook which said "People with ME think they can't walk but they could if they wanted to" are typical of the way ME was dismissed as a moral vacuum.
RedFox
Senior Member (Voting Rights)
That's completely at odds with how I describe my condition to others. For example, I was once on the phone with someone at a physical therapy clinic, and I said "I have no physical limitations in the conventional sense..." then described PEM.
The way I've seen it described by others is that if you "can" do something but it makes you incapacitated for days afterward, you're not really able to do it.
Mithriel
Senior Member (Voting Rights)
They might have changed it now but that phrase was thanks to our BPS overlords. The way I would describe it is that we do not have broken structures but the power to make them work is not there. Nowadays, people can understand having a perfectly good phone with a broken battery.
I did not get many points when I went for PIP. I believe their get out clause now is that you only get points if you are not able to do something not if you feel better not doing it. So no points for feeling better if someoen cooks for you if you could do it with a struggle.
Of course, that contradicts the fact that you get the points if you can't do something without it making you ill, like being able to climb a flight of stairs but getting angina.
All comes down to not believing ME is a real disease, I suppose.
I did not get many points when I went for PIP. I believe their get out clause now is that you only get points if you are not able to do something not if you feel better not doing it. So no points for feeling better if someoen cooks for you if you could do it with a struggle.
Of course, that contradicts the fact that you get the points if you can't do something without it making you ill, like being able to climb a flight of stairs but getting angina.
All comes down to not believing ME is a real disease, I suppose.
Simbindi
Senior Member (Voting Rights)
If you 1ook back to the origina1 government iterations of the PIP criteria, it's obvious they wanted to exc1ude what they considered 'fatigue conditions' from obtaining the benefit.
https://assets.publishing.service.g...ip-assessment-thresholds-and-consultation.pdf
It's revea1ing to read page 18 of the above document to see how they construct a 'CFS' sufferer (2 points awarded for care, 0 for mobi1ity) with an MS sufferer (14 points awarded for care, 15 for mobi1ity).
The criteria for being ab1e to comp1ete an activity re1iab1y, repeated1y and without pain and fatigue was on1y inserted into the 1egis1ation after the origina1 PIP criteria were pub1ished, and was a resu1t of a 1ot of campaigning by the chronic i11ness community.
https://www.disabilityrightsuk.org/...ion/personal-independence-payment-regulations
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Utsikt
Senior Member (Voting Rights)
My (now former) physiotherapist recently used this study as proof that my LC, PEM and ME/CFS was cureable if I was willing to trust him and let him push me. I wish I knew about this thread then, it would have saved me a lot of effort to ‘disprove it’ to him..
It’s not the same David Clarke who was behind founding IAPT is it?
And of course when you are incapacitated (maybe by whatever that is, maybe by a shower, maybe something essential like a medical task) you can’t
I think @Kitty said once in a thread she’d describe ME as ‘waiting’
And you get so used to the aggression of others plus have respect for everyone but your own situation you spend that waiting rearranging everything to make yourself as trouble free to others still . So it’s a swan thing of trying to stay as invisible as possible in suffering whilst you don’t stop and think is it ok I now just get to dream of the wait to get a shopping order in or a shower after ten days and be grateful for it whilst others have a life of teas with others and holidays snd work and friends snd put all those things they assume above as their ‘needs’ not to lose vs us waiting another two days for that shower or it doesn’t matter apparently if we lose something else - we will just have to get used to it.
except even in those windows where people aren’t bullying us directly by shouting at us when we are in PEM, there is subtle deliberate undermining that they don’t realise they do and flip into like it’s human training (because most people don’t like to help or be considerate - just look at how they line up others jumping to their ‘Im running early’ expecting others to drop things or tradesmen telling you x time early just do you are ready snd wsiting so they don’t wait, and is it definitely increases in most when you are down as having a disability because of the bigotry that means ‘we’re not busy’ when nothing could be further from the truth we just aren’t the vocal elbows out ‘chosen busy’ people - they prefer to therefore’coach’ as if that y it s help but us just arrogance of imposing their own way whilst making the person who can’t do it thru coercion on their timeframe
coaching should only be permitted in a situation where consent and right to withdraw it is 100% protected. And I’m talking outside of ME or disability, where mostly sadly and sickeningly that comes from people with no experience of disability offering their wisdom of how them being lucky means they are better. If you can’t tell the thick person they are the ones being dumb and ignorant - which nearly all the ‘therapists’ and ‘professionals’ bps and establishment contrive to be all we are allowed access to then it’s a situation so bad and coercive of imposing untruth on someone it is hard to find the right extreme of word to describe it. Here’s your bigot coach so that you cave in to tell them their bigotry about you is right and hurt yourself because that’s better than their abuse. Of and ps when it leaves you much more disabled they’ll either refuse to look and acknowledge what they’ve done or say something stupid like ‘it can’t be the illness, you must be a nutter it’s something else’
I find this whole thread traumatic because the ‘space’ some of us have been allowed to exist in in this world is truly so appalling and whilst we get shards of hope eg in 2018 with cdc changes and then physios for me etc so we feel we aren’t invisible and what we say isn’t gobbledygook these horrific people and sentiments and human instincts end up never being called out or won over.
No one else has to battle being swamped in narcissists being told they’ve free rein to kick the dog every single day with no one standing up and even tutting even when they are caught. So we’ve this brazen nonsense written down that should be seen as the type of manifesto that would put them on a watch list for either their mental health and re education or political beliefs or bigotry and needing training and oversight in any position of responsibility due to it , and emperors new clothes with too many wanting to all jointly pretend it’s ‘science’ rather than make believe.
ps the same people I get stuck surrounded by who this cruddy oozy belief you can tell underlies as permission fir them doing the selfish thing (which is what this is) are hilarious when they get a non illness or injury. I’ve spent more time listening to the details if a sore wrist or cold that lasted weeks than they’ve given me for concerning tests results and been told ‘noone wants to hear you go on’ when just trying to have someone help me with a plan of action
I think a lot of this is more about the war of personality types and selfish finding new ways to grabby take and it always be their turn no matter how worn out and chewed up and spat out and more in need those they used are, they are still looking for reasons why they are the victims
yes, of course all of this is created by and then turned into an industry by people who want a cushy way of earning a living that works around their wants and delights of life. And as they don’t need to sell to us because they can get others to coerce us that’s what they do.
no one really cares if it works hence we aren’t asked properly , just coerced to say something nice for the funding sign off. It’s using people as objects but worse.
They can tell themselves they aren’t at the least wasting peoples energy by dragging them in and that people choose to sign up so it must be good - despite the coercion they are part of
but look at how angry and aggressive they get when anyone critiques to make our voices be properly asked - how very dare we
and to me that’s disability bigotry and taking advantage/using in a very insidious way in a nutshell - if someone claiming they are a helper gets sophist, threatening and silencing when those they claim the help is for communicate
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Trials we cannot trust: investigating their impact on systematic reviews and clinical guidelines in spinal pain, 2023, O'connell et al
That study (done by people with an association with Cochrane) found that there were a substantial number of studies of CBT for back pain that were seriously flawed. They found that these studies materially affected reviews and guidelines. From memory, they didn't even mention the serious flaw of only subjective outcomes in unblinded trials. They noted that the effect of CBT was small and that it was not helping everyone.
CBT is pretty much the same as the therapy that is the subject of this Asher, Gordon et al paper and both address treatment of back pain.
That study (done by people with an association with Cochrane) found that there were a substantial number of studies of CBT for back pain that were seriously flawed. They found that these studies materially affected reviews and guidelines. From memory, they didn't even mention the serious flaw of only subjective outcomes in unblinded trials. They noted that the effect of CBT was small and that it was not helping everyone.
CBT is pretty much the same as the therapy that is the subject of this Asher, Gordon et al paper and both address treatment of back pain.
It's not about ignoring pain. It's more about removing the emotional attachment to pain, distraction, stress reduction, etc. It's not directly under your control, but factors such as stress and emotions can upregulate the pain, and other mental factors can downregulate the pain. Having said that, dealing with chronic pain is notoriously difficult, and most of the techniques out there seem to be very hit and miss.
No, it's more down to neuroscience, which is mapping out pain networks in the brain. One example are opioids, which work on the descending pain inhibitory system, but there are upregulation pathways as well, and there is also a significant emotional component to pain.
shak8
Senior Member (Voting Rights)
I have had severe FM since 1998. I had been an RN for two decades before that. I quickly became disabled.
I reserve the right to state my opinion about certain chronic pain research. I am well aware of high levels P in the CFS and reduced NGF in FM, as well as the ascending and descending pain pathways and which drugs affect these. I have read all pertinent research for FM in order to bring drugs to my doctor's attention so I could try them. I am proud of my self-management of the illness. This includes recognizing quackery and risk/benefits of any treatment.
My main point is that pain, as experienced by me (I have been told that I am quite stoic to pain by an MD) is not a light-weight perception. It is such a primary and overwhelming thing.
As for emotion and its affect on pain, I would like to point out that pain affects multiple brain areas and try as one might, uncoupling emotion from the onslaught of severe pain signals isn't under much conscious control.
Outsiders, or normies, be they psychologists or other healthcare professionals, seem to posit that certainly a pain patient is exaggerating the pain and should exert some control over it (by whatever means is suggested). As with ME/CFS, the non-patient has no reality of the condition and assumes a normality for the patient with ME or FM that does not exist.
When pain is present for most of waking hours, and life, too, is present (stress/emotions) how exactly is one to lessen the stress and emotions when pain increases stress and emotions ipso facto?
I reserve the right to state my opinion about certain chronic pain research. I am well aware of high levels P in the CFS and reduced NGF in FM, as well as the ascending and descending pain pathways and which drugs affect these. I have read all pertinent research for FM in order to bring drugs to my doctor's attention so I could try them. I am proud of my self-management of the illness. This includes recognizing quackery and risk/benefits of any treatment.
My main point is that pain, as experienced by me (I have been told that I am quite stoic to pain by an MD) is not a light-weight perception. It is such a primary and overwhelming thing.
As for emotion and its affect on pain, I would like to point out that pain affects multiple brain areas and try as one might, uncoupling emotion from the onslaught of severe pain signals isn't under much conscious control.
Outsiders, or normies, be they psychologists or other healthcare professionals, seem to posit that certainly a pain patient is exaggerating the pain and should exert some control over it (by whatever means is suggested). As with ME/CFS, the non-patient has no reality of the condition and assumes a normality for the patient with ME or FM that does not exist.
When pain is present for most of waking hours, and life, too, is present (stress/emotions) how exactly is one to lessen the stress and emotions when pain increases stress and emotions ipso facto?
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Utsikt
Senior Member (Voting Rights)
That seems very much like what ‘to ignore pain’ would mean in practice.
Besides, the goal of PRT is to get you to ‘engage’ less with the pain and to reframe it as something else (and importantly not something to worry about). Which is just another way of telling you to ignore it.
Pain networks?
Based on what? How significant? Can you quantify it?
jnmaciuch
Senior Member (Voting Rights)
Every time someone suggests to me that I need to work on my “pain management” by distracting myself or whatever else, I wish I had the power to swap bodies momentarily.
Like please demonstrate how you would distract yourself from feeling like your spine is being ripped out. Right now. How’s that deep breathing working for you? How attached do you feel to the sensation of your spine being ripped out? Is there anything you’re stressed about that you’d like to address right now?
The assumption is always that I’m simply not trying hard enough, not that those methods are simply laughable beyond the mildest headache if they’re applicable at all. I’d swap bodies with my doctors for a day just to show them how much pain I was already grinding my teeth through and distracting myself from
I think they’d probably have an immediate breakdown if they were in my body
Like please demonstrate how you would distract yourself from feeling like your spine is being ripped out. Right now. How’s that deep breathing working for you? How attached do you feel to the sensation of your spine being ripped out? Is there anything you’re stressed about that you’d like to address right now?
The assumption is always that I’m simply not trying hard enough, not that those methods are simply laughable beyond the mildest headache if they’re applicable at all. I’d swap bodies with my doctors for a day just to show them how much pain I was already grinding my teeth through and distracting myself from
I think they’d probably have an immediate breakdown if they were in my body
jnmaciuch
Senior Member (Voting Rights)
Side note, one of the greatest things about finding a supplement that really works for my ME/CFS is experiencing a normal level of pain from exertion for the first time. Made me realize how much my scale had been shifted outside the norm.
I was lucky enough that those supplements gave me back the ability to walk for nearly two hours straight for the first time in 6 years. I walked all the way to my parents’ house without planning to do it initially (I just said to myself I’ll walk as far as I can along a main street and I can take the bus back when I need to).
when I finally got to their house, my mom asked how much pain I was in. I said there was pain, but for the first time it was a normal level of pain/soreness that you would expect from just being out of shape and walking for two hours. If I needed to walk another hour it would be an absolute cake walk for me to push through it.
finally made my mother realize that when I said I was in too much pain to do something, I actually meant it was debilitating beyond any technique I could apply to lessen or ignore the pain. Not just that I didn’t feel like “pushing through it” in the moment.
I was lucky enough that those supplements gave me back the ability to walk for nearly two hours straight for the first time in 6 years. I walked all the way to my parents’ house without planning to do it initially (I just said to myself I’ll walk as far as I can along a main street and I can take the bus back when I need to).
when I finally got to their house, my mom asked how much pain I was in. I said there was pain, but for the first time it was a normal level of pain/soreness that you would expect from just being out of shape and walking for two hours. If I needed to walk another hour it would be an absolute cake walk for me to push through it.
finally made my mother realize that when I said I was in too much pain to do something, I actually meant it was debilitating beyond any technique I could apply to lessen or ignore the pain. Not just that I didn’t feel like “pushing through it” in the moment.
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Cause or effect? Short term pain or chronic pain?
Many women learn stoical acceptance of pain when they start their periods. In my generation (I'm 75) mothers told their daughters to hide their periods even from family members, and continue activities as normal, however bad the pain. Even when I was curled up on my bed in agony, fainting and vomiting, I was told I was not ill, therefore should just cope with the pain. Only paracetamol was allowed and it had no effect on my period pains.
It was quite a revelation going through labour and childbirth and being offered a range of NO gas, pethidine, and epidural to help with the pain, yet the pain was no worse than my worse periods, and my emotional state was euphoric excitement at the imminent birth.
Around the time I was having babies there was a fashion for 'natural' ie drug free childbirth promoted particularly by a woman who had the good fortune to have relatively painless labour. Many women suffered dreadfully and it spoiled their joy at giving birth because they felt they would be failures if they couldn't manage without 'breathing through the joyful waves' or whatever crap the woman promoted. She never seemed to understand that her experience was not the same as others, and was down to her own good fortune to have the sort of anatomy that slipped babies out quickly, easily and relatively painlessly.
It's odd how some pain is deemed real and to be treated with medication by the medical profession and other pain is all in our heads, controllable with brain training etc.
Experiments have been done with male partners trying having the same level of pain induced as their female partners to mimic the level of pain the woman experiences with her periods. The men were begging for it to stop well before the women. It gave them a better insight into what their partners were going through each month.
My point is that nobody has a right to judge others' pain as 'emotional', or having an emotional component. Nor does anyone have the right to judge the reality of living with chronic pain.
Utsikt
Senior Member (Voting Rights)
I’m glad she finally understood. I have the same thing when it comes to talking - my dad doesn’t understand that my sometimes short reponses are caused by severe brain fog and not that I’m being rude or crass. Apparently, I can choose to always speak properly if I want to. But he has no issue understanding that his mum with dementia can’t remember things.
Jonathan Edwards
Senior Member (Voting Rights)
How does mapping out networks bear on any of this. It does not matter whether nerve pathways are on the right or left or above or below or join this or join that if we have no means of understanding what the result is in terms of thought. And we have absolutely no way of relating the two because we understand nothing about the way cells draw inferences from incoming data. This is the are of science I work in when not looking at ME/CFS. The neuroscience still tells us nothing whatever relevant to any hypotheses about causation in ME/CFS.