No. You have to prove something works. What you don't have to know is why something works even though that is of course the goal. If there would be well-conducted trials of CBT in ME/CFS that showed that it worked, so the opposite of the actual data, then it should be the recommended therapy even if nobody knew why it worked. The same applies to pharmaceuticals. There exists pharmaceuticals of which nobody knows why they work and yet have been prescribed. The proof lies in well conducted trials, the equivalent of which people arguing for a biopsychosocial model of ME/CFS seem to be fundamentally unable to do, I suppose that maybe could tell you something about their strengths and weaknesses as researchers and their own psychology.
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Symptom perceptions, illness beliefs and coping in chronic fatigue syndrome, 2009, Moss-Morris
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No. You have to prove something works. What you don't have to know is why something works even though that is of course the goal. If there would be well-conducted trials of CBT in ME/CFS that showed that it worked, so the opposite of the actual data, then it should be the recommended therapy even if nobody knew why it worked. The same applies to pharmaceuticals. There exists pharmaceuticals of which nobody knows why they work and yet have been prescribed. The proof lies in well conducted trials, the equivalent of which people arguing for a biopsychosocial model of ME/CFS seem to be fundamentally unable to do, I suppose that maybe could tell you something about their strengths and weaknesses as researchers and their own psychology.
I would personally love to have better trials. It's a shame that patient organizations seem to be against them now, so I'm not sure we are going to resolve this question any time soon.
jnmaciuch
Senior Member (Voting Rights)
Again, BPS studies seem to have no problem recruiting for study after study.
The issue is that those studies are repeatedly low quality despite every opportunity to improve.
I’ve personally witnessed other researchers in the field organizing trials for things like meditation interventions for Long COVID. None of them are being plagued by obstinate patient organizations. That perception seems to be entirely founded on the testimony of a few researchers who have been repeatedly, and rightly, criticized for extremely poor study design.
@Hutan and @Trish, among others, have already provided some fantastic outlines for how an effective trial studying stress reduction or brain retraining methods could be designed. I would love nothing more than for their suggestions to actually be taken into account for a trial and for them to be credited for their consultation and collaboration. I want a definitive answer to those questions as much as anyone.
[Added:] if a well-done trial is able to show even moderate improvement for some reliably predictable subset of pwME, I will be legitimately joyful that they now have that proven option. If it doesn’t show that, then I will be thankful that we can stop shoveling money and resources towards the same broken record.
[Edited for grammar]
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We've had plenty of trials of CBT. Patient organisations are not responsible for organising trials of low quality. If you've had numerous trials and the people organising them are repeatedly unable to conduct trials there is no point in investing more money that goes down the drain. You don't have to continuously repeat PACE and PACE is the highest standard they have been able to come up with and continously try to defend.
Perhaps you would be able to propose a (very rough) study outline that you would consider methodologically rigorous, as you admit PACE to be problematic?
This raises the issue: What do you want to show? The trial data is rather clear: CBT isn't worth the effort even in studies that are heavily biased (people don't increase their activity levels, don't resume working, their disability doesn't diminish etc). There isn't anything left to resolve. What do you think needs resolving? People are not becoming more active if they do CBT or GET. So even if the issue was purely psychosomatic, the therapy is still not working!
Utsikt
Senior Member (Voting Rights)
I’m going to let you get away with blaming the patients for the current lack of progress in the psychosomatic field of ME/CFS.
They have had thirty years of being able to do exactly what they wanted. They have produced pretty much nothing of value. They have wasted hundreds of millions of public money. They have ruined countless lives along they way and they continue to assert their influence across all major institutions in science, medicine and politics.
Utsikt
Senior Member (Voting Rights)
You can't say that there is insufficient evidence, and then say you don't want more studies because they've wasted money. It also doesn't make sense to say they have ruined lives (which is true), but then be against better trials with sensible methodology. That's partly why we are stuck in the situation we are in at the moment: we have CBT and GET, and not much else. Long covid seems to be moving past that, with their symptom-titrated exercise trials.
Action for ME was involved in the PACE trial, so they had every opportunity to improve it.
No, that's not how science works. There is never definitive proof, just a growing body of evidence. Think about antidepressants: do they actually work, or is it mostly biased studies from drug companies? Human caused climate change is another good example: there is a large body of evidence showing that humans have caused temperatures to increase due to CO2, but there is no one single "proof". It's just a growing body of evidence.
From Tomas:
"Further, basal studies have also shown an attenuated diurnal variation [8, 24] particularly with a loss of the morning peak of ACTH [8, 20, 21, 25, 26] or cortisol [8, 20, 27] while challenge studies often, but not invariably, show a diminished HPA axis responsivity. This has been assessed using the ACTH, cortisol, and/or 11-deoxycortisol response to pharmacological challenge using, for example, dexamethasone combined with corticotropin-releasing hormone (CRH) [28], insulin [29], inflammatory cytokines, and metyrapone [30]; to psychological challenge (e.g., using the Trier Social Stress Test [31]), and to physiological challenge (such as wakening) [32–34]."
So, the evidence shows that studies "often but not invariably" show HPA axis hypofunction. So there is fairly good evidence, but it's not especially overwhelming.
It seems you have ignored the post and instead focused entirely on a strawman that you brought up yourself. I used the word "proof" because these are your exact words you chose to use in the post prior to mine. Nowhere did I anywhere write "definite proof" and instead thought you were aware of the contextual language you were using and that nobody was refering to a ZFC like structure.
As I reminder my enitre comment was a response to your quote
I thought that was rather clear, since I quoted you
. I think it would be more meaningful to discuss the actual topics, rather than critiquing's ones own use of language.
Utsikt
Senior Member (Voting Rights)
There is insufficient evidence in favour of the treatments (CBT and GET) and in favour of the underlying assumptions.
There is, on the other hand, more than enough evidence that the treatments don’t work, and that the underlying assumptions fail at producing any meaningful predictions.
The thing that you fail to recognise, is that if a heavily biased trial produces a null result (like PACE), then you can’t discard the null hypothesis that the treatment is ineffective. Ergo, the treatment has been proven to be ineffective.
Bias mostly becomes an issue in terms of the value of the evidence when there are positive results, because bias by nature mostly favours a rejection of the null hypothesis.
Why not? I am not against better trials of future potential treatments based on sound reasoning and plausible theories.
I am against beating the dead horse consisting of CBT and GET. A more methodologically sound trial will not produce a result in favour of rejection of the null hypothesis if a severely biased (and fraudulent) trial failed to do so. It’s absurd to even suggest the possibility.
Is it impossible for you to conceive of a world in which CBT and GET are no longer considered viable options as treatments for ME/CFS or anyone with PEM?
Because in my world, we don’t have anything. That sucks, to be frank, but it’s better than only having harmful treatments.
Even if they had any real influence over the design of the trial, I sincerely doubt that anyone here would approve of their position at that point in time. I am not familiar with all of the history of the UK based associations, but you don’t have to spend a long time looking at threads here to understand that most of them have been pretty bad at their job of promoting scientific rigour on behalf of the patients. Others will probably be able to point you to threads if you’re interested.
Utsikt
Senior Member (Voting Rights)
This is actually technically wrong.
An example would be general statements that are contradicted.
If you say that all plants are green, and I show that there exists a red plant as well, I have definitive proof that your statement is wrong.
There are also proofs by exhaustion as another example, although that is less relevant for medicine.
Yes, but that is a very simplistic example, very unlike the climate change example I gave.
Yes, completely agree.
Utsikt
Senior Member (Voting Rights)
It might be simplistic, but it’s also an example of proof by contradiction of your assertion that there are no definitive proofs. So it served its purpose.
What about the second part?
I agree regarding CBT and GET, but for different reasons. I think it is too simplistic and incorrect to boil everything down to fear avoidance or deconditioning. However, those are factors for many patients, so it's a question of properly addressing that in a trial. You don't need to accuse a study of being fraudulent simply because of bias. That's a logical fallacy.
Yeah nice one. The patient organisations did nothing but ask for the cod psych stuff of bps to use proper methods and design for several decades. They had their money repeatedly repeatedly repeatedly and their gravy train and it’s confirmed one thing:the old people can’t/wont (it’s the same to them ) change to do it properly probably because (some papers like Heins et al, 2013 show they probably worked out they wouldn’t get the results if they used objective and didn’t have bias etc) turkeys don’t vote for Xmas and the whole bps area have an issue with not publishing studies that are disconfirmatorySo what you suggest is an oxymoron . I think you know.
worse it naughty as you must know full well it’s bordering on the usual trolling of patients names to insinuate poor rubbish people who won’t do proper methods are the victims of patient orgs, when it’s not true. They should be unfundBle if you go by history of publication /research quality. Can you name a ‘therapist’ side person who has produced decent methodologies?
be better and don’t shame scientific psychology and bring the subject into disrepute (and the subject needs to start calling this all out if it wants its reputation back and clean up and clarify the fake CBT - new old wine to new bottles name ‘brain training’ by the sounds of it - to stop the real old cBTs being misrepresented by made-up reeducation courses of someone’s pet own beliefs nicking the name just because it’s confrontational in its delivery style but with no scientific proper model ). Otherwise it’s just some awkward theoretical posture when there isn’t unflawed properly design and high quality methods being done ever, and there never is any that are likely to be out on the table by people who pretend not to ‘get’ the issue with poor methods - so it feels like posturing as if that accusation means bad methods ones should have to funded in that absence. But that’s got a bit old.
it doesn’t require patient organisations for that. And never had, it’s just been a choice not taken.
but you seem to have a bug bear expecting patient orgs to fund your stuff? Have I missed some specific thing that you mean that got turned down and is taken a bit to heart ?
on the other hand I agree with any patient org that decides to fund the most worthy scientific projects who know method and design and not anymore worry too hard about this lot. There’s been a well-known gap left for only patients to address left by the issue with other funding all going to behavioural and no science for so many decades.
For bps 25,000 bites of the cherry to just do it right once is more than enough chances or ‘best ofs’. No one has been responsible fir the quality of their design except them so it’s galling to suggest it’s anyone but their own fault. they do research with no null hypotheses etc so it never concludes or gets anywhere. And it’s all just iterative stuff trying another go another way to argue via manifesto that the same old thing might work this time if it’s just delivered in red standing on your head etc. I haven’t seen anything innovative in the sense of good design, method or person with a history of good quality scientific research coming thru ?
Vs the amount of funding into scientific avenues that could narrow things down faster and very much do have good quality design because that area isn’t exempt from the regulations of good design etc . And these are only at best ever going to be disproving false claims and looking at niche add-ons not treating the actual illness in the 2021 guidelines and CDC etc if M.E./cfs
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Jonathan Edwards
Senior Member (Voting Rights)
That is just the opinion of one enthusiastic junior researcher writing a review.
Often but not invariably almost always means not in this sort of sicence because there are strong psychological pressures to get a result in all lab science and when a phenomenon is real you get to a point when the methodology is good enough so that anyone can replicate it reliably.
People with gross loss of adrenal function or hypopituitarism do not have symptoms of ME/CFS so we are not going to blame symptoms on a suspicion of slight imbalance in ME/CFS. Beyond that the findings really take us nowhere. Clutching at straws isn't the way forward. I have been in biomedical lab science a long time and when you find something that is important it isn't difficult to replicate every time. You cannot build a theory, let alone clinical practice, on this sort of thing.
Utsikt
Senior Member (Voting Rights)
You keep repeating this claim as if that makes it true.
I didn’t say it was fraudulent due to the bias. It’s fraudulent for many other reasons that have been explained in great detail by people elsewhere. I suggest you read up on that - you might want to start with @dave30th ’s recent presentation about PACE, it’s in the second half.
Yann04
Senior Member (Voting Rights)
If you only include the data that shows improvement, and don’t report the other data. (Ie. Selective outcome reporting). That is data manipulation, which in turn is research misconduct, which added together with the dozens of other dodgy issues crosses the line for fraud if you believe science should be held to any sort of standard of transparency.
As we have already explained many times, patient organisations are rightly critical of badly designed trials. If someone proposed yet another trial of GET or the sort of directive CBT used in PACE, then of course we would be against them because they have already been shown to be ineffective and many report harm. It would be irresponsible to repeat them.
The most recent FITNET and MAGENTA trials found no benefit from CBT or GET in young people and actually reported this truthfully for once instead of manipulating outcome meansures and withholding data as in PACE.
We have already described the sort of trial we would be interested in if someone came up with a treatment that has a sound basis.
AfME was influenced back then by supporters of CBT and GET. They have more recently apologised for their organisiation supporting it.
They may well be consequences of having ME/CFS. I don't think you have pointed us to any research that supports either factor predisposing, precipitating or perpetuating causal factors for ME/CFS as currently defined.
Incidentally, I notice a lot of the 'evidence' you are providing is from more than 10 years ago, based on old diagnostic criteria that don't require PEM, done by people with preconceived ideas of what ME/CFS is, and based on questionnaires that are not suitable for pwME, and involves such badly flawed methodology that no accurate conclusions can be drawn. It's not enough to say 'here's a paper on it', you need to discuss that paper's findings properly, including the limitations and flaws in the research, and whether it's actually possible to support the authors' conclusions.
Also, if you want to refer to a research paper and stimulate discussion on its findings, please start a new thread for it if we don't have one already. We discourage discussion of multiple papers on a single thread, as this leads to massive confusion about which research is being discussed. It's not reasonable to expect sick people to run around after you sorting out new threads for the plethora of old and flawed papers you keep raising as if they were useful evidence.