UK CMRC 2018 Conference held September 19 & 20 at Bristol

dave30th said:
I was wondering about this and tried to be alert for it. But it wasn't really evident to me from his talk. Is your sense just a general feeling or is it based on some specific things he said/done recently?
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Based on this review, though he has tried to explain it away.
 

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Trish said:
a proxy for ME'
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To me ME doesn’t feel like it is well described as persistent fatigue, this isn’t a proxy. Or perhaps I just don’t have ME?!

Andy said:
What does this even mean???
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Is he talking about PsychoNeuroImmunology? These tweets are making no sense to me either but hard to judge without watching in full.

The CMRC seems to have improved a lot in a year though. Does this feel real @dave30th ?
 
Jonathan Edwards said:
Yes, it is a pity twitter oversimplifies so much but some important points made.
As Simon says, if subjective reports and objective measures do not match it does not necessarily mean the objective measure is the wrong one.

This again emphasises to me the importance of having a measure that requires BOTH subjective improvement and some objective evidence that the subjective improvement is grounded in something that makes sense. That might be an explanatory mechanism or it might be an expected outcome correlate like more activity. There are all sorts of ways to create better measures. Perhaps it is time to set up a working group to address that.
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[My bold]

Yes, that sounds really good to me. Of all the challenges that need solving in order to move forwards, identifying the right measures is probably in the critical path of any future research project.

The psychology approach seems to be that it's all subjective anyway, so what's the problem! A much more sane approach surely must be that, yes, subjective measures have their rightful place (e.g. pain etc), but they just have to be grounded against objective references, else the measured values just float aimlessly. Like measuring height without knowing height above what?

And of course it's not an easy problem to solve, which the BPS folk seem to conveniently treat as being an impasse. But engineering and science is always like that. The starting point is having the will, determination and sheer enthusiasm to want to solve the problem. Having the skills is crucial also of course, but the skills alone will not get you there.

I'm not sure what skills/attributes might be required, but I would be interested if this were taken forwards.
 
Adrian said:
We also need to remember that subjective questionnaires measure perception of a quantity and not the quantity
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Exactly. Which means you have to be immensely careful about how you incorporate the numbers obtained (very arbitrarily in many ways) into calculations, comparisons, stats, etc. Not just presume oh-so-conveniently as some do, that everything is nicely linear, and everything nicely scaled against everything else, etc.
 
Adrian said:
I think its important to characterize fatigue in more detail. There are the people he is looking at, say people with fatigue after cancer, people with RA, Lupus. But its not clear to me that the fatigue would have the same mechanism or if the experience of fatigue is even the same. So something worth doing would be to try to look at whether the fatigue is the same/different as well as potential mechanisms. But to do some of this would mean listening to patients which doesn't seem popular with some groups.
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Also depends whether Pariente is pursuing this line because he is determined he is right come what may, or is doing it with a view to try and understand fatigue mechanisms better, and prepared to end up being on the wrong track if it turns out that way.
 
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dave30th said:
He was looking at the difference between Hep C patients who took interferon and did not end up with a persistent fatigue state, and those who took interferon and did end up with prolonged fatigue. All cleared the Hep C virus but about 30 % of the participants who got interferon and cleared Hep C still ended up fatigued after six months.
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So there is a comparison group, and a group who seem to be fatigued well after the initial trigger condition has passed. What would be really interesting of course, is what was the objective physical functionality of the fatigued group? Because if all they had was the subjective symptoms of fatigue, but were not actually short of energy, then I would think it not too relevant, other than perhaps for comparing with some people possibly misdiagnosed with ME.
 
Skycloud said:
It's no good - I just can't be fooled by the word 'biological' when its context says something different. I'm trying but it's not working.

eta - Perhaps I'm being premature - I'm refering to the tweet from Pariente's presentation - perhaps it doesn't represent his words well. We'll see when the video is available :cautious:
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Quite. When (elsewhere, not here!) I see Phil Parker saying that ME is all physiological but LP can still fix ... I get very wary.

Is Pariente's use of 'biological' rather than 'physiological' significant? Or are they interchangeable in this context?
 
Barry said:
So there is a comparison group, and a group who seem to be fatigued well after the initial trigger condition has passed. What would be really interesting of course, is what was the objective physical functionality of the fatigued group? Because if all they had was the subjective symptoms of fatigue, but were not actually short of energy, then I would think it not too relevant, other than perhaps for comparing with some people possibly misdiagnosed with ME.
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My family member who took interferon as treatment for a melanoma didn’t just feel ill. He was a very active hill walker, badminton player ( international and county), long distance runner but during that year was crashed as we are crashed. He recovered some after the interferon but never to his previous functioning and died 11 years later from the melanoma.
 
JohnTheJack said:
Based on this review, though he has tried to explain it away.
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"CFS/ME is predominantly a condition triggered by excessive rest" - what complete codswallop.

Further to this. My wife's ME was triggered when she caught a nasty bug whilst recovering from a thyroid operation. But once she had recovered from the anaesthetic, my wife just did what she always does - press on regardless and push through her symptoms, except this time she never fully did. Other than a couple of days, she never did rest. Her ME only really became apparent when she failed to fully recover from her operation as the surgeon expected her to. Her recovery flat lined, but all the time nonetheless, and ever since, she has always done as much as she can ... which I know for sure is always close to her 'rev counter' red-lining.
 
No info from AFME tweet on what C Ponting said in closing the event other than routine thanks. I was expecting something about what next..........I will have to wait for the video to know what was said.

INot that I’m not grateful for the progress since last year by CMRC. I had a look at the James Lind page about the priority setting and I guess it is a tool for raising awareness among medical authorities and community of the need to tackle ME. I saw that one was done for Lyme 8 years ago so it certainly isn’t something that automatically generates big changes in thinking.
 
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