Symptom perceptions, illness beliefs and coping in chronic fatigue syndrome, 2009, Moss-Morris

[dundrum]

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.

Yes, that is true. There are no studies looking at precipitating and perpetuating factors using CCC or ICC. I see the s4me factsheets also reference older research, back to 2001 and earlier.

It's a bit of a problem if we reject all previous research and don't want to do any more research into psychosocial factors. That creates a bit of an impasse wouldn't you say?

 

[dundrum]

You keep repeating this claim as if that makes it true.

Because it is demonstrably true, and you can see that if you talk to other patients. I have a list of examples, but it's against the rules to post them.

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.

I have read up on that extensively.

 

[Trish]

There are no studies looking at precipitating and perpetuating factors using CCC or ICC. I

Perhaps because the BPS people think they have already established what they believe to be true, and don't understand that their studies are fatally flawed, so see no need for replication, and other researchers realise the methods based on psychological questionnaires are a dead end for ME/CFS, as most of them are not suitable for people with physical symptoms.

 

[dundrum]

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.

That is a frankly ridiculous claim.

 

[dundrum]

Perhaps because the BPS people think they have already established what they believe to be true, and don't understand that their studies are fatally flawed, so see no need for replication, and other researchers realise the methods based on psychological questionnaires are a dead end for ME/CFS, as most of them are not suitable for people with physical symptoms.

Why do you say they are not suitable for people with physical symptoms?

 

[Utsikt]

Because it is demonstrably true, and you can see that if you talk to other patients. I have a list of examples, but it's against the rules to post them.

No, it is not demonstrably true that fear avoidance and deconditioning are ‘factors for many patients’. It is true that some patients claim that they believe that it is for them, but that does not in any way prove the causation that the word ‘factor’ implies.

I have read up on that extensively.

Then why did you say that I can’t claim that PACE was fraudulent?

 

[dundrum]

No, it is not demonstrably true that fear avoidance and deconditioning are ‘factors for many patients’. It is true that some patients claim that they believe that it is for them, but that does not in any way prove the causation that the word ‘factor’ implies.

If a patient says they were too scared to exercise due to broken mitochondria, then they try it after they realise their mitochondria aren't broken, then it's simple logic that it was causal.

Then why did you say that I can’t claim that PACE was fraudulent?

Because clearly it wasn't, and it's a ridiculous assertion.

 

[Utsikt]

Why do you say they are not suitable for people with physical symptoms?

Because the presence of physical symptoms influence how you answer the questions and might give what are essentially false positives for ‘psychological issues’.

If I broke my arm and I answer that I can’t do everything I want to do during a day, the form will take that to mean that I have avoidance. But it is not avoidance, it’s a physically induced limitation.

 

[Utsikt]

If a patient says they were too scared to exercise due to broken mitochondria, then they try it after they realise their mitochondria aren't broken, then it's simple logic that it was causal.

You have said that fear avoidance causes symptoms or maintains the illness for some. That is not what your example describes. It describes that fear avoidance caused a behaviour. Those are two very different assertions.

Because clearly it wasn't, and it's a ridiculous assertion.

Then I challenge you to go to the PACE thread and explain step by step why you believe that all of the things the researchers are critiqued for doing, actually are perfectly fine.

 

[Trish]

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.

That is a frankly ridiculous claim.

Then where is the section in the main PACE trial paper published in 2011 with great publicity claiming efficacy for GET/CBT, showing that the results for the step test and employment/disability benefit data don't support this publicised claim? Where is the per protocol analysis of recovery rates in the paper published in 2014 that again was published with great publicity claiming high recovery rates, when the per protocol analysis showed no significant beween group differences.

Not publishing the contradictory data and claiming success on cherry picked statistical signficance that doesn't reach clinical significance and is in an unblinded trial seems to me to be accurately described as research misconduct.

Those papers should never have got past peer review. Instead they had accelerated publication facilitated by the Lancet editor.

 

[rvallee]

It's not like arguing that vaccines cause autism, as that is not based on any evidence.

But it is! Published in The Lancet, one of the most influential academic journals. Defended for 12 years by its editor-in-chief. Highlighting the many problems with relying on bad evidence: the bad part far outweighs the evidence part.

I'm not sure what you mean that "stress hormone is not a thing". Adrenaline and cortisol are the two main stress hormones.

There is no such thing as a hormone that can be used to measure stress, which is a very vague and hard-to-define thing. Cortisol and epinephrine do a ton of things inside the body, and any measured value in the blood does not correspond to any idea of stress, however vaguely defined. This is the exact same problem as with polygraphs: measuring something that correlates loosely does not mean any causality.

The standards on this forum are a lot higher than what you are using. There are many communities that would happily agree with you, but we discuss science from a scientific basic, where claims need scientific evidence.

 

[rvallee]

I believe the key element of comparison was the suggestion of studying something over and over even though we’ve already been down that path.

Correct.

 

[rvallee]

So technically, it hasn’t been disproven. But at some point you might want to stop and consider if another path might be more fruitful.

And working from that, it also hasn't been proven that vaccines don't cause autism. That would be proving a negative, which is impossible.

But the bad evidence used to assert this has been debunked, leaving no evidence. There is no positive evidence for psychosomatic models that have been claimed for decades to explain chronic illness, just as there is no positive evidence that vaccines cause autism. In science, the burden of evidence is on those making a claim. Positive evidence.

Plus we know that the assertions were made before any studies or trials, thus making the whole thing a bunch of silly nonsense.

 

[Trish]

And working from that, it also hasn't been proven that vaccines don't cause autism. That would be proving a negative, which is impossible.

I thought it had been shown from population studies, but this is off topic for this thread to go into any more.

 

[Yann04]

I thought it had been shown from population studies, but this is off topic for this thread to go into any more.

I think we’ve shown it generally isn’t the case for the average person, just as GET has been shown not to work for the average pwME.

But technically it’s impossible to disprove that it may be the case for any one person or a negligable minority of people.

 

[Hutan]

It's a bit of a problem if we reject all previous research and don't want to do any more research into psychosocial factors. That creates a bit of an impasse wouldn't you say?

A lot of us here don't see ME/CFS research of therapies arising from a psychosomatic paradigm as a priority. That's because it is clear that the very flawed studies have identified, at best, benefits that are entirely explainable by the bias the trial design and poor data analysis decisions create. And, we know that the paradigm causes harm.

But, there is recent research that mostly honestly reported that the therapies are not useful and can be harmful, sometimes extremely harmful. As we have already said, check out the MAGENTA study, that was undertaken, from memory, about a decade ago, but the paper was only recently published.
Here is the thread: Graded exercise therapy compared to activity management for paediatric [CFS/ME]: pragmatic randomized controlled trial, 2024, Gaunt, Crawley et al.

The lead investigator of that study used to be a very prominent proponent of psychosomatic therapies for CFS in children. For whatever reason, she is not now.

 

[dave30th]

Because clearly it wasn't, and it's a ridiculous assertion.

PACE absolutely was "fraudulent." That's not saying it legally meets definitions of fraud. But it was certainly deliberately deceptive. They presented deliberately manipulated results using outcome measures they weakened after collecting their data. Then they refused to conduct any sensitivity tests for the changes or to provide the data themselves. They claimed "twice as many people got back to normal" using their interventions--when "normality" has nothing to do with the "normal range." So that was a lie, delivered at the press conference by Prof Chalder, and never corrected. It certainly is "fraudulent" to publish research without telling readers than 13% of the participants were already "recovered" at baseline for a key variable.

 

[rvallee]

I thought it had been shown from population studies, but this is off topic for this thread to go into any more.

I just mean it in the sense of not finding Russel's orbiting teapot in a given volume of space meaning there isn't one. The evidence is pretty convincing for vaccines, and I don't mean to open this can of worms, just the fact that negatives can't be proven, and how even bad studies published in high-impact journals asserting something is no guarantee of anything.

 

[Hutan]

We have moved a number of posts about hypothetical brains with no input, Hume and triangles, among other things, to
Mind, body and ME

 

[Friendswithme]

A lot of us here don't see ME/CFS research of therapies arising from a psychosomatic paradigm as a priority. That's because it is clear that the very flawed studies have identified, at best, benefits that are entirely explainable by the bias the trial design and poor data analysis decisions create. And, we know that the paradigm causes harm.

That's a shame given the thousands of people reporting the brain retraining has helped them improve or recover from M.E.

To my mind, it means it very much is the top priority.