UK CMRC 2018 Conference held September 19 & 20 at Bristol

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?!

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 ?

 

Yes it’s me! I was at both days of the conference.

 

You read my mind

Or perhaps those green things are stress bogies, or perhaps someone just threw some garbage at him for being a total wally

 

[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.

 

In effect some measures will have a time component as part of the measures. Which I think is what you are saying anyway.

 

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.

 

Aren't they just!

 

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.

 

Yes. Fatigue seems to be many things to many people.

 

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.

 

Wow!

 

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?

 

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.

 

"CFS/ME is predominantly a condition triggered by excessive rest" - what complete codswallop.

 

"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.

 

Just to say this makes no sense in my own condition. ‘Excessive rest ...needing a psychiatric framework’

I was beginning to think the proxy thing might have some value but not with the above as part of the package.

 

AfME has this on their website:
CMRC conference report (part one) now online

the link they give takes you to the report from the conference in 2015


https://www.actionforme.org.uk/news/cmrc-conference-report-(part-one)-now-online/