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

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?

 

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 have read up on that extensively.

 

That is a frankly ridiculous claim.

 

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

 

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.

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

 

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.

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

 

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.

 

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.

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.

 

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.

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.

 

Correct.

 

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.

 

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.

 

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.

 

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.

 

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.