Psychological and demographic factors associated with fatigue and social adjustment in young people with severe CFS/ME (2018) Chalder et al

The really disheartening thing is this is probably someone's PhD work, so yet another keen young psychologist being taught crap methodology and believing the narrative spun by Crawley Chalder about fear avoidance beliefs perpetuating ME.[/QUOTE]


Sonya C did say at the AfME AGM, this year I think, that they were fed up with funding PhD students who then left ME research...

Hopefully, now that they are aiming to fund biomedical research, this will no longer be a problem. I do think they are aiming to head in the right direction.

 

"Participants were also asked to complete a visual analogue scale rating their fatigue severity on a scale of 1–100."

 

It's still basically a questionnaire item.

 

Sorry if someone has already pointed this out in the thread but I think this is another one that should be used as an example of funding/spending money that can only yield nothing. It's just money (from whoever) that may as well have been burned. This tripe doesn't add anything at all of value. Surely with the changing climate around poor quality research this is one for the bin.

And it raises the question (again) of why she keeps getting money. Is it possible that things look quite different in London? That maybe there are scores of children seemingly recovered? I mean, isn't that the point of all this?

This whole group of researchers need some sort of psychiatric intervention. Maybe PIT (personal insight therapy or personal integrity therapy). They seem to have no awareness that their interpretation of the data is never supported by their own data in a really basic way.

And AYME, now under AfME have a lot to answer for.

 

I think it's just busywork to keep the pretense that research is ongoing. With regular publication of this type of research it maintains the illusion that it is a valid area of research since it keeps on putting out papers (nevermind that they're all pretty much the same "research" done over and over again).

The value it adds is keeping accountability away from the massive failure of implementing guidelines without evidence. So they have to keep pretending that they add to the evidence even though it's entirely performative.

In a nutshell, they're learnding:

 

Yes, and the problem is even worse when you realise that some of these so-called 'research' papers get used in meta-analysis papers.

 

Follow the money

 

The concept of evidence-laundering really needs to have a tough discussion within medicine. "Two wrongs don't make a right but 7 obviously do" is just not the kind of thinking that should have a long shelf life.

 

Even worse: illusion of money. Long-term, this approach is much more expensive than going about it the boring way of working on a problem until you actually solve it.

It only works as a fake number on annual budgets. In real terms, this is a massive, massive waste of everything.

 

More insidious - many of the IAPT providers are private companies with ex NHS staff fronting them.

 

Quite simply, the value of a researcher to a university is the number of papers published. The quality and usefulness of the research is of no relevance at all. EC will be protected by her university because she is an asset.

 

Even more insidious when you recall that Alan Milburn who was secretary of State for health at the time PACE was initially being put together resigned in 2003 to spend more time with his family, or Bridgepoint Capital as they are otherwise known.

Milburn took a post for £30,000 a year as an advisor to Bridgepoint Capital, a venture capital firm heavily involved in financing private health-care firms moving into the NHS, including Alliance Medical, Match Group, Medica and the Robinia Care Group.[10] From Wiki

 

I might be wrong about this, but I think if you add tags in an edit, the tagged individuals aren't notified.

 

I'm going to test it.

EDIT: did you get a notification @Sarah @Michiel Tack ?

 

Nope!

 

Me neither. So it is true: tags in an edit don't work! Thanks for pointing that out.

Gonna delete the original message and repost it.

 

Because there is a factual error in the abstract, I've written a short comment I would like to submit to the journal.

I do not have experience with this however. Are there any forum members who do have experience with submitting letters and could help me out in PM?

Many thanks in advance,

EDIT: I don't know who has done this in the past, so I'm just going to tag some of the more experienced forum members.

@Graham @Esther12 @Sean @Robert 1973 @Dolphin @Tom Kindlon @Adrian

 

Always happy to help, @Michiel Tack , but I'm more content focused than a writer: most of my attempts get lots of editing suggestions. I have the tact of a charging rhino.

The easiest way to do this is to start up a "conversation" with those who offer to help, then post back on this thread when you've got a more polished letter ready to go. Perhaps @JohnTheJack may be able to help.

 

@Michiel Tack
I'd start a PM conversation and give people the ability to invite others - I'm sure you should be able to get some advicefrom someone on here. Thanks for taking a look at this.