family intervention for chronic fatigue syndrome

[alex3619]

I have been wondering how many of the clues to the pathophysiology and etiology, that have been hinted at over the recent years, could have been discovered or explored many years or even decades earlier with the right funding direction. Obviously the technology has improved greatly in the past few decades, so perhaps that has been missing too.

In 1955 we had three things. A study showing that the blood from outbreak patients caused the same brain and spine lesions we see in patients in various animals, killed others outright, and some were immune, was published here in Australia. We had the Royal Free Hospital outbreak, from which Ramsay (I think) eventually decided a delayed energy crash was a primary symptom. It was also six years after the technology for CPET was available, at least, it might have been longer but I traced it back to at least 1949.

If someone had put these things together, we could have had the 2 day CPET before 1960! CPET only went mainstream decades later though, but from 1963 we had an approximate CPET where they used predicted maximal heart rate, and didn't measure the anaerobic threshold.

So ME could have been validated in 1955! Researchers would then have been on the right track, and known its about a reactive crash in energy metabolism.Sadly it never happened till 2007, and most docs etc still don't know about it, and the CDC still refuses to use it.

 

[Snowdrop]

They always go with the misanthropic patronizing interpretation, in good Freudian tradition.

It is very patronising. It's almost as if it's really not about the ill person at all but about the medical practitioners who spout this stuff.

Like they've been pushed and pushed and pushed without mercy and now they're going to get even. . .by picking on the vulnerable of course.

Again, physician, heal thyself.

 

[CBS]

@Esther12, thanks for the link. My bad. Deleted.

 

[Esther12]

Weardon was behind FINE. Nasty manipulative stuff that didn't even lead to improvements in patient's self-report measures compared to normal care.

I saw on twitter that they're still spinning this as a success to students:

https://twitter.com/maxwhd/status/426140469697863680

Weardon deserves no respect and no further research funding.

 

[biophile]

http://psychologyatmanchester.edubl...-wearden-by-as-level-work-experience-students

Interview with Prof Alison Wearden by AS-Level Work Experience students…
August 2, 2013 by psychologymanchester

Interview with health psychologist, Professor Alison Wearden

By Stephen Williams, Zozan Polat, Ellie Nicol Lowther & Ellie Kinney (Work Experience Students)

[...]

What moment from your career has made you proudest?

Speaking about my career as a psychologist, I suppose the thing I did that I’m most proud of is I ran a large treatment trial of pragmatic rehabilitation treatment for patients with chronic fatigue syndrome, which is a quiet controversial condition and it’s poorly understood and it’s been quite difficult to treat. We successfully carried that trial out and found a treatment that improved patients’ fatigue, so that’s probably the thing that I’m most proud of.

Being proud of contributing to a major clinical trial is one thing, but taking pride in the pathetic results as a career peak is another, when the results were poor even compared to typical superficial changes to questionnaire-answering behaviour in non-blinded trials where the active group received more encouragement and optimism than the control group.

I wonder if she was proud that the poor results were pervasive enough that it encouraged the view among trial nurses that the patients were "the bastards that didn't want to get better"?. The 1M+ pound funding was sorely needed elsewhere, but exploring and discrediting dead-ends in research, such as the cognitive-behavioural model of CFS, is also important.

http://psychologyatmanchester.edubl...l-inaugural-lectures-dr-deborah-talmi-reports

Professorial Inaugural Lectures… Dr Deborah Talmi Reports
June 1, 2012 by psychologymanchester

Three professors in SPS have given their inaugural lectures this week. The lecture theatre was packed with friends, colleagues, mentors and family members. Rachel Calam, Alison Wearden and Kevin Munroe made an impressive entrance, proudly donning beautiful gowns, which won them a round of applause.

We were then treated to a series of three exceptional lectures. [...]

Alison took us through her journey at the University of Manchester. She told us how she found clever ways to help sufferers of Chronic Fatigue Syndrome, and about her finding that emotional expression in sufferers of diabetes and their carers influence their well being. In his concluding words, the dean emphasised the challenge Alison had overcome in order to produce robust data from such difficult populations.

Was it clever to tell patients that "there is no disease" and that exercise is safe despite major post-exertional symptomatology being a hallmark characteristic of the disease? "Robust data" that was the closest you can get to failure without entirely confirming the null hypothesis at all time points with all outcome measures!