UK CFS/M.E. Research Collaborative [CMRC] conference, 10th and 11th March 2020

[mariovitali]

"Altered calcium flux". Let's keep that in mind.

 

[Andy]

 

[mariovitali]

We don't need *Big* Data. We want smart and effective types of analysis and sufficient, good quality data. Not Big.

 

[Andy]

 

[Andy]

 

[Andy]

We don't need *Big* Data. We want smart and effective types of analysis and sufficient, good quality data. Not Big.

 

[Andy]

 

[Andy]

 

[Andy]

 

[Jaybee00]

Lower or higher ESR?

 

[Andy]

 

[Andy]

 

[Andy]

 

[mango]

Thanks a million for sharing all the tweets, @Andy. Much appreciated

 

[Andy]

Thanks a million for sharing all the tweets, @Andy. Much appreciated

No problems, you are welcome.

 

[Invisible Woman]

Creation of evidence across the diff domains to influence clinical practice and treatments is critical....

No. We've had enough "creation" of evidence thank you. Finding evidence is an entirely different matter. Now, can we focus on looking for it please Prof H?

 

[wastwater]

Was it revealed what was in the blood then or is that still to come later on

 

[Adrian]

Currently a Kings rheumatoid researcher on chronic fatigue in general population. I don’t know why this got in the agenda? Or what we can learn from it. Kings fatigue research input to date not helpful to ME, in fact the opposite.

One of the things she is suggesting (I think) is that cohorts with fatigue should be used in comparison to PwME and has pointed out various different sources of data including twin study data. One thing that was being discussed is the notion that if you look at fatigue in general and then look at different bio markers with different diseases can you pick out what could be fatigue mechanism but also can you pick out what is different and hence may be core to ME.

 

[Invisible Woman]

One of the things she is suggesting (I think) is that cohorts with fatigue should be used in comparison to PwME and has pointed out various different sources of data including twin study data. One thing that was being discussed is the notion that if you look at fatigue in general and then look at different bio markers with different diseases can you pick out what could be fatigue mechanism but also can you pick out what is different and hence may be core to ME.

The issue I have with that is the assumption all fatigue is the same. I don't believe that's the case. We might not even be comparing apples with oranges, but with a veg instead of another fruit.

Then there's the question of whether it makes a difference whether or not fatigue is a primary or secondary symptom.

Then how do you quantify it objectively and does that matter?

Before more time and money is spend on fatigue I would rather they went away and actually worked out exactly and precisely what fatigue is and how to measure it objectively. Preferably using someone else's research funds.

Edit - clarity

 

[Natalie]

I've just put this on the Dialogues thread, but since the video was mentioned here yesterday, here it is....
www.dialogues-mecfs.co.uk Following the first screening of 'Understanding Post-exertional Malaise in ME/CFS' yesterday at the CMRC conference in Bristol, the new 'Dialogues for a Neglected Illness' project website is now live. The project now includes the last video finished, 'An Introduction to ME/CFS', as well as two new PEM videos (one longer and one brief) and two GET videos released earlier.