Well, of course. That's provably false. The BPS crowd depends on claims that can't be proven false. They don't care that they can't be proven true, just not false.
Why the BPS people think the way they do
- Thread starter Hoopoe
- Start date
That is a very good reason not to try figuring out other people's beliefs, but to concentrate our energies on examining and finding out our own beliefs.
My belief is that ME/CFS is not one single disease but a syndrome, a concatenation of various conditions affecting body, mind and spirit. Each individual needs to discover their own unique presentation and adress it in their own way.
I'm curious. Do you think the same approach to illness applies to cancer, Parkinsons disease, diabetes, to take a few random examples?
Or is there something different about ME/CFS that leads you to this belief about ME/CFS involving body, mind and spirit, and treatment requiring the individual to sort out their own approach?
If ME/CFS is so individual, what would be the point of scientific research and clinical trials? And what would be the point of this forum?
I seem to have a different view about the BPS theories than some commenters here. I don't think the flaws are "obvious". Quite the opposite: I find the BPS ideas' subtlety is what makes them so effectively dangerous.
When I read my country's mecfs policy a year ago, I thought it was pretty good. Today I recognize it as heavily influenced by BPS proponents and preventing biomedical research.
When I discuss the BPS model with people close to me, they are often attracted to the ideas, and in the past I have found it hard to refute them. They "know someone that recovered" or hear "mind and body are connected" and are convinced.
The local BPS professor supports their claims with trial data (Fukuda criteria) and "values good science". They stay vague enough so that they are not *obviously* wrong. The B in BPS gives them credibility.
The history and prejudice (which I was guilty of too) don't help either. It is easy to be seen as a difficult patient.
I can see why policymakers, practitioners, patients, even researchers fall for the BPS ideas.
Effectively challenging those ideas requires more than exposing the flaws in the science behind them.
When I read my country's mecfs policy a year ago, I thought it was pretty good. Today I recognize it as heavily influenced by BPS proponents and preventing biomedical research.
When I discuss the BPS model with people close to me, they are often attracted to the ideas, and in the past I have found it hard to refute them. They "know someone that recovered" or hear "mind and body are connected" and are convinced.
The local BPS professor supports their claims with trial data (Fukuda criteria) and "values good science". They stay vague enough so that they are not *obviously* wrong. The B in BPS gives them credibility.
The history and prejudice (which I was guilty of too) don't help either. It is easy to be seen as a difficult patient.
I can see why policymakers, practitioners, patients, even researchers fall for the BPS ideas.
Effectively challenging those ideas requires more than exposing the flaws in the science behind them.
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I don't think that's so different from what I think. The flaws in their 'science' and reasoning are not obvious unless you do three things that most people, including clinicians, politicians, and 'the public' never do:
Listen to patients with ME/CFS carefully enough to understand what PEM is, how it is triggered. And recognise that this makes ME/CFS different from any other 'fatiguing condition' in the effects of exertion. Recognise that exertion can cause long lasting harm for pwME, and the ME/CFS research needs to focus only on people who get PEM, not mix us up with other people with 'chronic fatigue' or 'medically unexplained symptoms' and all the other waste bins we get dumped in.
Critique trial methodology Examine the flaws in their clinical trial methodology, particularly recognising that unblinded trials with subjective outcome measures are useless
Understand fashionable wellness advice doesn't apply to ME/CFS Be prepared to recognise that the fashionable advice that exercise is good for everyone, you can think yourself well, work is good for everyone, and rehabilitiation and re-enablement are appropriate approaches for everyone - are false when it comes to ME/CFS.
For anyone who is prepared to open their minds and do the above 3 things, it's obvious the BPS approach to ME/CFS is wrong and harmful. Most people don't see any reason to bother. So I agree their ideas are dangerous because most people don't take the steps needed to see the problem, and the proponents do their best to flood the zone with propaganda to keep it that way.
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Your questions seem to indicate that you got the point(s), precisely.
I'm trying to remember a parable that illustrates my view very well. The memory may or may not come back to me...it's hovering on the edge of my fore brain.
As for cancer, Parkinsons disease, diabetes, etc. I have no experience except cancer, so I have no opinions.
My own cancer was fortuitously cured by surgery after I refused Chemotherapy.
I can actually be thankful that ME/CFS made the chemo unbearable after the first session. In fact I had primary HCC plus it was discovered in the course of surgery, another unidentified gremlin in the gall duct.
No doctor, no scientist, no one can fully understand ME/CFS without actual experience, and second-hand is actually anecdotal and hearsay.
Whatever the case, my theory is as good as any other; if the cap fits,
wear it.
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I think that you want to say that you believe ME/CFS to be on a spectrum and not being a syndrome. A syndrome is a distinct, uniform illness that shows up fairly similar in most of the patients.
You may of course believe anything.
However, from the research at hand it is already clear that ME/CFS is a syndrome. This is not just judged from the outer symptoms with its typical features of flu-like inflammatory episodes, a sore throat, pathological exhaustion and PEM but also from the changes in the immune system and other parts of the body.
Isn't that true for any illness, if you mean the experience of living with the illness. But scientists and doctors can understand a lot about cancer, PD, diabetes, and many other diseases, and thereby find and apply useful treatments, without ever having first hand experience.
Do you think ME/CFS is different from these other conditions? Do you see any value in genetic, metabolomic, and other sciences being applied to learn more about ME/CFS?
Are you aware that the concept of autism spectrum, ADHD, and other diagnoses are contested within psychiatry and that the idea of neurotypicality is an idea founding the identity struggles of a political movement but hasn't any scientific credentials?
Since I have myself a content oriented and critical personality style I might have fallen for these theories myself. However, there's better explanations within and outside of academic psychology. These theories have the advantage that they don't pathologize certain personality styles on the one hand while they also not put people with different psychological reasons for example for being easy-going and not-rocking-the-boat behaviour in one basket.
For example Ron Kurtz, the founder of Body-Centered Psychotherapy. The Hakomi Method after decades of practice with clients writes in his book of the same name that he's been meeting with folks with ten different and distinct coping styles. Lindsay Gibson who wrote the NYT bestseller Adult Children of Immuature Parents makes an extensive list of about 15 approaches to deal with life and in relationships unskillfully. The best theory however was developed by two Chilean scholars, one of them a psychiatrist who was able to come up with the idea that there was a healthy expression of personality styles that fit the unhealthy "personality disorders" in exactly nine distinct expression. The theory was given the name of the nine-type-personality-theory or Enneagram. Their contemporary "bible" is The Wisdom of the Enneagram by Rizo and Hudson.
Before these approaches the psychiatrist Jung and others were already working at such a theory because they were also witnessing distinct psychological styles with which to approach the challenges of life but got nowhere in the end.
I can highly recommend to check out these theories. I find it very sad and scandalous that so many normal and healthy children get psychiatric diagnoses at such a young age now with psychiatrists communicating to them that at their core something is abnormal and different with them when according to the above theories they simply have their strengths in other areas that are the most appreciated by our culture but have a completely healthy and typical expression of their psyche.
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I believe there's more to it than people not taking the steps needed to see the problem. One needs to be sufficiently knowledgeable and know where to start. I think that cannot be expected from 99% of people, even if they're well-intentioned. The whole story should be made very accessible to them. Even getting the chance to bring the story across is not a given.
I think that the psychologist that introduced CBT for MECFS to me and 20 other patients yesterday had good intentions. Perhaps she could be convinced of the harms of their ideas. I find it more difficult to gauge the character of the professor/psychiatrist that leads the group and their poor quality trials. There's probably more ego on the line.
Let's say I want to engage with them, try to at least plant a seed of doubt in their minds. Pointing out the flaws in their research might push them into the defensive. How do I handle this without being seen as a difficult patient --how do you even get someone to read beyond the first sentences of an email when they may be prejudiced against you?
I agree with that. I wasn't trying to suggest it would be easy for most people, much as it should be for clinicians.
I don't know how to make it straightforward for your therapist to understand. I wish I did. There are good resources but they have to be willing to put in the time and effort to learn, and a patient in a new group is unlikely to be the person they turn to for information on why their approach is wrong.
Maybe we could ask them to provide us with follow up evidence from their clinic's patients showing what effect the treatment had. If they allow discussion in the group and sharing of how people are getting on with the advice, maybe tell them you're not finding it helpful, and ask what effect it's supposed to have. Get them thinking.
V.R.T.
Senior Member (Voting Rights)
Yeah I certainly didn't see the flaws and obfuscations in BPS logic until it was far too late. It's very compelling at first glance, especially for someone with a humanities background who's understanding of medical science and psychology is through popular memes and therapy sessions and having read outdated people like Freud who were influential in 20th century literature. Which explains why so many journalists fall for it. Can't explain why so many medics fall for it though. That's just embarrassing for them.
What resources are you thinking of?
They have already shown us data from their patients. It went like this: first they said CBT is not a curative treatment. "But", they said, "we see improvement!" Then they showed a graph (not based on data, drawn by hand) of function levels increasing slowly, then polynomially. Then they show a graph that *is* based on data: (subjective) CIS levels improve up to 10% for 45% of people (no controls) in a gerrymandered plot, but levels remain problematic, except for 9% of superresponders. Also, 25% of patients get worse. The next slide explains 'risk factors' for this group, which they like to call the 'non-improvers': stress, anxiety and "somatic symptoms". I don't think an extra negative data point is going to make these people think twice about what they're doing.
These are the people that sit in government decision boards. EDIT: show the first graph, or the second graph and some compelling words to the casual listener, and I imagine they'll agree we should fund more of this research.
Genuinely, what is the right approach to challenge this?
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And worse. They are actively dangerous, and I am now firmly of the view that they are simply unacceptable on their own. Adequate blinding, and/or objective measures, or get out of the game.
You don't. You appeal to those with power over them.
The approaches you are suggesting were tried for decades, and all that happened was they took advantage of it for their benefit, not ours.
Truth is that they simply refuse to hear what we have to say, or accept any major criticism, from anybody, even the highest levels of their own profession (e.g. NICE). But especially from us allegedly delusional, in denial, lazy idiot patients. Especially when we are right.
The deep and often harsh cynicism about the psycho-behavioural club's motives and tactics that you see among many of the old hands in the patient community is entirely justified. We didn't start there, we ended up there after decades of wasting our time and energy on trying to appeal to their better angels. It was very hard earned. We have literally paid for it with our lives. Turns out they don't have any.
They have profited handsomely from our suffering, made it worse, and continue to do so.
So, excuse me if I don't feel too fucking charitable towards them or inclined to waste another second of my life trying to persuade ruthless dishonest fanatics.
Hoopoe
Senior Member (Voting Rights)
I know little about the topic. I've also started moving away from thinking that I might be in the spectrum. For me the attractiveness of the idea was that it allowed a different angle and highlighted certain ideas that I was interested in. But ultimately I find this diagnosis is not useful and probably more of a barrier than a help.
It's certainly a highly subjective diagnosis.
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Barry
Senior Member (Voting Rights)
I'd say it's simply down to a fundamental human trait in some people, who prioritise eminence over expertise, eminence over evidence. Eminence is paramount with these folk, especially dangerous when they have the skills to BS their way into the realms of the rich and powerful.
I am glad you gained some distance again to autism spectrum theory. I don't think it is a "subjective diagnosis". I simply think it's not a very good theory. And the pathologizing of normal is its most harmful flaw.
Well, Freud was a doctor and psychiatry is a medical field. Psychoanalysis is still very powerful within medicine, a bit less so only in the US, I guess, where they established a new cult around psych drugs polypharmacy.
I find that many people here on the platform are not aware that psychiatric interventions, drugs and psychotherapy, are ineffective or harmful for many patients. In exactly the same way as these therapies don't work for ME.
You might be interested to read the classic Against Therapy. Emotional Tyranny and the Myth of Psychological Healing by Jeffrey Masson. It was written in 1988 – it should be expanded with a chapter on CBT for ME.
I can't follow you when you say that your humanities background made you prone to buy into the bps model of ME. My humanities background made me highly aware that doctors managed to become a part of the political establishment in the 19th century in order to police the sick.
I can direct you to more enlightening reads on the topic if you're interested.
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That is the problem. The rot goes all the way to the top, with the occasional exception.The chain seems to go quite high up, maybe I best start praying