But a rigorously placebo-controlled trial (hitting non acupoints) would have obviously given null results, that's why you don't run it. And if you just want to measure feelings of nicety, well then this trial already accomplished that...
Debate about patient organisation responsibility and research funding
- Thread starter Midnattsol
- Start date
I am sure there are ways to run rigorous studies on TCM.
Acupuncture definitely doesn't "do nothing"—as ME/CFS patients who are too sick to tolerate it can assure you. It has quite intensive effects on the body and mind for 1 to 2 days after treatment. Good practitioners know how to stimulate the body's own powers to move itself toward health and equilibrium.
As for the "feelings of nicety"—I would be cautious about underestimating kindness and compassionate care in chronic illness.
Jonathan Edwards
Senior Member (Voting Rights)
There are. Controlled trials. They will show that the TCM itself does nothing at all - or that you could replace it with any procedure you like and get the same result.
Why should anyone take this as true. We get exactly the same sort of stement from people about treatments that we can be quite sure do nothing. Seeing a therapist will alter your mood, for sure, and being jabbed with needles might help that, but we have no reason to think any practitioner knows 'how to stimulate the body's own powers'.
This is evidence evaluation 101. People can be convinced that treatments work if they want to but there is no reaon why anyone else should believe it. The whole controlled trial business is based on the knowledge that such claims are totally unreliable.
It brought me no psychological benefit whatsoever. The ‘dead qi’ he found led the therapist to advise me to get more involved in projects with other people (even though I was already part of a charity that brought me into contact with people from all walks of life), which left me feeling blues. The pressure points and massages certainly had an effect; my body reacted (negatively)… Acting without fully understanding the mechanisms of an illness and relying on misinterpretations therefore strikes me as dangerous.
In an autobiographical film by Nanni Moretti, only his acupuncturist realises that his lack of response to anti-itch treatment means there is something else going on, and sends him for an X-ray (which reveals cancer). That is how I would like to see alternative medicine practised.
It sounds like you had a really bad experience with that practitioner, and I am so sorry. You’re definitely not alone in that—I’ve heard many similar stories from other ME/CFS patients.
In fact, my very first appointment at my current practice was just like yours. A young doctor gave me a far too aggressive treatment with massage included. I left feeling overstimulated, as if I’d taken a heavy stimulant, and it triggered a severe flare-up the next day. Because I’d had good experiences with acupuncture for depression in the past, I went back, explained that it was much too strong, and asked for a more experienced doctor. I’ve been seeing her ever since, and I am very content with her treatment.
I don’t think TCM misinterprets illness so much as it works from a completely different paradigm of the human body than Western medicine. Interestingly, the practitioners at my clinic actually have a deeper grasp of post-viral pathomechanisms than many people give them credit for—they even published a piece on fatigue explicitly pointing to chronic viral infections like herpes reactivation as the cause of one of the types of chronic exhaustion (and in my view the cause of ME/CFS)
Your mention of the Nanni Moretti film also really struck a chord with me. That kind of holistic vigilance is exactly what a good practitioner provides. My Chinese doctor actually noticed a physical change in my abdomen over time and urged me to get it checked by a Western doctor. I’d been secretly terrified it was something terrible and was too overwhelmed by my ME/CFS to face it, but her gentle encouragement finally gave me the push to get an ultrasound (which turned out to be a benign uterine fibroid).
That’s how alternative medicine should work—listening to the body, knowing its limits, and working alongside Western diagnostics rather than against them.
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I’m not sure whether, within a different paradigm, the em/cfs might not manifest as something the practitioner is unable to detect. It is only if they equate it with the usual condition that they will misinterpret it. (In short: dead qi = fatigue = it needs stimulating). The same mistake that Western medicine makes.
Past actions to a certain extent. But not for some time now, in my view.
I regard it as the core technical and political issue, and an essential non-negotiable requirement for all research, especially RCTs, and also for setting any clinical guidelines and public health policy.
Any person or organisation that doesn't understand and accept how fundamental and critical it is to this whole show has no business being involved.
To be supported, appropriately.
I think it is also worth emphasising the eventual end/maturity to this whole 'well-intentioned circle'
which is that people who initially believe it helps because of 'the whole package' in particular of a lovely therapist who cares about what the patient is going through and wants to give them a nice experience (as well as whatever 'the treatment does or doesn't do) goes so far to try and 'help' by getting these 'effects' proven all in the aim of helping those patients by getting it signed off as part of insurance/healthcare
And it then ends up in a system that for a variety of reasons strips out the 'therapist being nice' and 'amosphere caring about what the patient went through' and is just charged with 'delivering the bit paid for' without added extras, and if those are there then instead of someone being judged as to whether they are intuitive and/or have got themself up to speed with an attitude and understanding of what patients need, decide they know better and they will act how they want to act.
So the actual bit that was so vital, when funding is coming in a direct sense from the patient themself who gets to choose on an open market the person who provides what fits their entire need and makes them feel better ... well you end up instead with a sausage-machine focused on churning out basically the coercion of ‘therapist must achieve the KPIs’ (set on ‘get your figures confirming ‘fatigue reduction’ at best cost) that promise 'transformation' from 'that bit'
and before you know it focusing on getting patients to say the right thing (thru intimidation as we all know with our system of 'don't upset the person who has power to write notes that affect your employment, access to other healthcare can state you are non-compliant etc)
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Hoopoe
Senior Member (Voting Rights)
The patients with unmet need for emotional support, that they don't get from the mainstream system, may end up looking for it elsewhere and risk end up being exploited by quacks.
Much of the pseudoscience being produced in this area seems to be the result of attempting to give credibility to a treatment by showing that it treats the disease. I suspect the value of the treatment is mostly limited to emotional support.
People have difficulty accepting their own fragility and their need to be listend to with their problem, in an intimate setting by a caring person. For those who have not experienced it, it is difficult to comprehend just how much a serious health problem can upend one's life and erase a person's confidence, identity, hopes, life plans, etc. Perhaps this is why people fear judgement for seeking emotional support.
Surely we can do better than all this?
Maybe a model that would work is a "regulated free market" approach. Once an unmet need for emotional support has been identified, the patient is provided a list of activities offered and they can choose to participate in one session a week. When given a choice, patients will naturally gravitate towards those activities they find effective. Some rules need to be in place to ensure the programs don't do things that are problematic (like making claims about recovery, patients being indoctrinated to believe things that are problematic, etc.)
Much of the pseudoscience being produced in this area seems to be the result of attempting to give credibility to a treatment by showing that it treats the disease. I suspect the value of the treatment is mostly limited to emotional support.
People have difficulty accepting their own fragility and their need to be listend to with their problem, in an intimate setting by a caring person. For those who have not experienced it, it is difficult to comprehend just how much a serious health problem can upend one's life and erase a person's confidence, identity, hopes, life plans, etc. Perhaps this is why people fear judgement for seeking emotional support.
Surely we can do better than all this?
Maybe a model that would work is a "regulated free market" approach. Once an unmet need for emotional support has been identified, the patient is provided a list of activities offered and they can choose to participate in one session a week. When given a choice, patients will naturally gravitate towards those activities they find effective. Some rules need to be in place to ensure the programs don't do things that are problematic (like making claims about recovery, patients being indoctrinated to believe things that are problematic, etc.)
Surely counsellors can meet the 'unmet need for emotional support' without the pseudoscience trappings? I suspect the AI counsellors will be pretty good soon, and cheap. I don't know how that will go, but I imagine at least there is less of a feeling of judgement if you are talking to a non-sentient being that has been programmed to be calm and kind.
I can't see why anyone should pretend these alternative therapies work, just so that people get emotional support and don't have to accept that there is no treatment.
Hoopoe
Senior Member (Voting Rights)
Pretending that they work and demanding evidence that they work (as treatment for the disease) seems to just cause problems.
Jonathan Edwards
Senior Member (Voting Rights)
Assuming that we are talking about the costs being shared through an insurane system, whether government-run or subscription my view is that if you are going to spend some more money for support, which I am all in favour of, it make more sense to employ more health care workers in the mainstream to provied that support. I used to be able to do that in my clinics in the 1980s. No problem. I would see people year in year out despite having nothing to offer except a hello and an ear. I think we should go back to that model. Sack all the managers and abandon both 'internal markets' and separate primary care.
Hoopoe
Senior Member (Voting Rights)
I have been imprecise in my choice of words. Counsellors can provide emotional support. However, that is not what every patient needs or even in the form that a patient needs it. I don't know how to call it - support to feel better in general which can involve completely different forms.
Being believed is an important kind of support for those patients where disbelief leads to problems. Other patients will not have such a need.
Some patients need pleasant activities to distract them from thinking about their problem all the time.
It's all the possible answers to the question of what do you need to feel better in this situation?
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Well, I think people might be quite happy to see a manager or two when the operating rooms run out of supplies and the staff haven't been paid for a month. But, otherwise sure, I like your plan.
Jonathan Edwards
Senior Member (Voting Rights)
Theatre sister did the supplies perfectly well in the 1970s.
The most useful thing any therapist can do in the current situation is in effect give permission to patients to be sick, defend them from exploitation and abuse by others, and advocate for them to get adequate appropriate material support.
The whole notion that we need to be fixed, particularly by 'removing the psychological barriers' on the road to 'recovery', simply needs to be completely abandoned at this stage.
The whole notion that we need to be fixed, particularly by 'removing the psychological barriers' on the road to 'recovery', simply needs to be completely abandoned at this stage.
V.R.T.
Senior Member (Voting Rights)
This is what my partner and I were denied when mild, which ultimately caused us to worsen our conditions in an attempt to not be sick without permission anymore.
Which is all especially galling in the era of AI where sycophancy is not only a big issue, it's one thing that is routinely criticized for its harmful potential. Agreeing with someone is not supporting them. The most common scenario for an LLM leading to harm is to enable and amplify bad ideas through repeated agreement, ending in a "you can do it", where it might be suicide or worse.
Except here it's even worse, because it's explicitly acknowledged that this agreement is fake. When they write how "symptoms are real", no one is fooled, they don't mean that, don't believe it, hell they write about how they say that simply as a means to deceive us. None of this is secret, it's all out in the open, and everyone easily understands that it's fundamentally bad, because they all find ways to criticize the exact same behavior and methods they use when they are applied to something they don't agree with.
Hoopoe
Senior Member (Voting Rights)
Yes. I felt strongly that I wasn't given permission to be sick.
Agree on the regulated free market bit. Of course even that is hard in getting regulation to work (not captured by having interaction because it's those who work in the industry hired to do it, or might go back into it etc) - but it is the model needed.
And it absolutely needs that market bit but done properly - which requires the regulation bit to not be predatory. We know too well what doesn’t work is getting dodgy suppliers to ‘do PPI’ because all they do is look for ways to coerce the patients in that too so that they can continue coercing the patients they get paid for. The power has to sit outside of those who intended to profit from it. And lots has to sit with end user having no coercion on them - whether that’s ’vote with their feet’ respect with also a regulator who takes their word and only proper science seriously and cuts out the therapists being allowed to play a part in their own research (and all the risks of perceived threat and coercion involved there even when they are ‘just delivering x therapy’ and not a PI there is so much room for mind games during a visit).
And it’s really important that what WE mean by that term ‘emotional support’ isn’t actually sadly what most layperson who are paternalistic mean
In fact it’s just being considerate and respectful and someone fulfilling the patient need which is indeed provision of something practical (ie acupuncture) properly, in a way that helps them
And NOT putting them in the nightmare where whether it’s needing something to fill in a form the way they need it filling in or getting a massage the way work for them instead they now live in a nightmare world where people amateur psychologise (which is actually harmful actions disguised or deluded as if it’s support or care - hence my phrase ‘I think you are confusing what you are doing as psychology instead of misogyny’ when you get some woman who fails to have the empathy skill of seeing someone’s situation and bring considerate to that and instead levying false labels at them so they can force BS at then against their consent instead of delivering what someone paid for or signed up for is what a normal person would get).
So we perhaps need a very specific term for what is actually needed (otherwise those delivering just deliver what they want to deliver on that or are misguided) even in that. Remembering the lack of insight or ability to hear answers clearly even when they ask questions certain ideologies or training can produce.
I doubt anyone who visited a good acupuncturist would want to switch it to ‘getting cod psych from a bacme physio/ot’ when they walk into those sessions looking to get what they got from that good acupuncturist where the whole experience worked for them.
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