Psychological Medicine paper: behaviours that perpetuate ME: Chalder and Ross-Morris

[taniaaust1]

I am doing some research with King's College London into the attention and concentration difficulties that many people with CFS/ME experience. This research aims to understand these issues further by developing neurological tasks which assess attention and concentration.

what lies. I hope someone who did the study based on that lie puts in a complaint about them using deception to get people to get involved in this. Im glad most of the community realised they were lying so didnt participate.

 

[medfeb]

And what research is that patient education to be based off?.

The therapists who provided the self management programme were occupational therapists, not psychologists. It never entered anybody head to use a psychologist.

The other professional group, at least in the U.S., who research this area are physical therapists and people in sports medicine - people like Chris Snell, Staci Stevens, and Mark Van Ness who have been doing the 2-day CPET studies and recommending the use of heart rate monitors to stay below the anaerobic threshold.

These presentations by Mark at the MEFM Society in British Columbia show what they are focused on
Part 1 -

Part 2 -

 

[Barry53]

Within the therapy professions - physiotherapy, occupational therapy, psychotherapy - there is a culture that considers it legitimate to believe you must be doing the right thing because your theory says it is right.

Whilst constantly asserting - and convincing people in high places - that your theory must be right, because the things you are doing can be "proven" to work ... albeit their "proofs" actually require the theory to be valid in the first place. Nonsensical circular logic, dressed up to masquerade as intelligent rationale.

How is it such quackery has managed to take over the establishment? There must surely be tremendous peer pressure, at some level, from the great majority of good, high integrity researchers of all disciplines? Even within psychological disciplines? Surely they cannot all be bad? I know for sure there are some good, very genuine practitioners. Or is it just that these folk's skins are so very thick, that common sense and common decency just never penetrate?

 

[Chrisb]

How is it such quackery has managed to take over the establishment?

Peter Hennessy , the political historian from QMUL, was on the Daily Politics the other day. He quoted a saying of Lloyd George expressing his view of government:

"What you can't square, you squash. What you can't squash, you square."

One suspects that some of Hennessy's academic colleagues must have heard of this principle.

 

[Sean]

Although the principles of good scientific methodology are common sense in practice very few people can among the critical reasoning needed to stop themselves from trying to prove what they want to prove. All Freudian psychology is based on proving what you want to prove, as Popper pointed out. Even highly intelligent people cannot stop themselves ruining their science.

The first principle is that you must not fool yourself — and you are the easiest person to fool.

Richard Feynman

 

[worldbackwards]

Peter Hennessy , the political historian from QMUL, was on the Daily Politics the other day. He quoted a saying of Lloyd George expressing his view of government:

"What you can't square, you squash. What you can't squash, you square."

One suspects that some of Hennessy's academic colleagues must have heard of this principle.

I think within the politics of ME, all the grubby low politics is on the one side, whilst we only seem to have two modes - walk away into irrelevance with our fists raised in the air, or stand there nodding along as we get creamed.

I remember Barbara Castle had a phrase about Jack Straw, saying that he'd go far in politics because he had what she called "low peasant cunning". I think we could probably do with a bit of that to even up the scales. It becomes clear that no one ever won anything without, if not breaking the rules, then knowing them well and exploiting a few for our benefit, something our opponents know plenty about.

 

[Snowdrop]

I note the above 'crash' in my case came after I thought I knew my disease, and had it for 20 years.

Since we have a disease, I expect that the disease process sometimes carries on and any activity management that we do is moot. Activity management is important and in my opinion while an outside observer may help no one will know or understand better than the patient learning to cope over time with the illness. While objective tests and tools are also useful the sad truth is not everything is in our complete control.

 

[RogerBlack]

Since we have a disease, I expect that the disease process sometimes carries on and any activity management that we do is moot.

Do you, however, have evidence for this.
In what proportion of patients are severe crashes (post initial period) correlated with unusual activity, and which aren't.
There is currently no evidence on this.
Both would be enormously valuable to patients.

Few people care that much about PEM lasting 4 or 5 days - if it can be avoided most of the time by modulating activity.
In comparison at least to if activity can trigger months or years of (worsened) disability.

If 'just got worse with no real reason' is vastly more common - then perhaps doing a bit more on average may be worthwhile.
If 'overdid it leading to crash' is - then research into better activity management.

The comment I made initially 'solidly psych' - was strong and incorrect - the final treatment may in some people involve development of coping strategies to work out your limits, even when you have cognitive problems leading to problems determining those limits. What I was actually meaning is there is value in principle in studies which do activity tracking and 'how are you feeling now' - with no 'biomedical' interventions (like the above study) but this wasn't clear.

There are reasonable mechanisms for 'just got worse randomly' - for example reinfection with some virus or other agent that triggers an echo of the original cause of CFS/ME.
And for 'was worse for 6 months after overdoing it' - just the 'normal' disease.

We have no way of knowing which is the case (or if both are). Any current data is terrible on this - any activity trials never follow up people who have withdrawn from the trial due to being unable to comply with the activity. Self selected surveys are equally problematic for many reasons.