Science at the UK CMRC Conference, 1-2 Sept 2014

user9876

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This isn't necessarily the same as confusing the condition of ME with simply having "chronic fatigue" and certainly doesn't seem to be so in these papers on inflammation. Quite a few researchers have been trying to identify mechanisms that might be driving some of our key symptoms and looking at whether there might be commonalities with other diseases in which severe, persistent, disabling fatigue are symptoms. Prof Julia Newton has been doing some of this in looking at PBC (primary biliary cirrhosis) and ME:

http://phoenixrising.me/archives/17009

In this interview, she says (my bolding):

“I firmly believe that studies like this have a direct implication for patients with other fatigue associated diseases. We have previously shown, using data from questionnaires, that the experience of fatigue in one fatigue-associated disease is the same as that in another, i.e., the fatigue experienced by patients with ME/CFS is similar to that in character to PBC, which is similar to that in Sjogren’s syndrome, etc. The severity may change and the relative contribution of various biological factors but overall the perception and the symptom itself is the same. This means that if the experience of fatigue is the same in different diseases then the underlying mechanisms may well be the same, which highlights the fact that by performing studies in one fatigue associated disease we could potentially understand more about fatigue overall, which can then be applied to other diseases.”​

This is important. If we can relate immune activity to one of our key symptoms, that's a crucial piece of the biomedical picture.
I think that Sonia tweeted:
"We need to deconstruct fatigue" prof Robert Dantzer
I see that as a comment that we need to understand more about what we mean by fatigue and how it might change with different diseases.

If I were to de-generalise Prof Newton's statement and quote specifics she says that fatigue associated with ME/CFS is similar to that in PBC and that fatigue associated with Sjogeren's is similar to PBC. Iff fatigue is associative then ME fatigue is similar to Sjogren's.

But I think there are two different questions
1) Is fatigue a single concept or is it a grouping of different things that could have different mechanisms (even if triggered by the same thing). I wonder are mental and physical fatigue different.
2) Is fatigue the same in all things or just a selection. I think Prof Newton was looking at Rituximab for treating PBC. So there could be common mechanisms.

My guess is that in the questionnaire they use they are profiling different elements of fatigue.

From a sample of 1 (not very scientific I know) a friend who had ME symptoms (never formally diagnosed) and then cancer had different fatigue. After the cancer treatment things like the pain associated with ME went as did the PEM which I think of as part of fatigue.
 
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Sasha

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Lunch and poster-viewing now until 2 pm.

Workshops coming up next. I don't know if they're parallel. If so, we might not be hearing much!
 

Sasha

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I see that as a comment that we need to understand more about what we mean by fatigue and how it might change with different diseases.
I read it as maybe pulling apart different types of fatigue, particularly so that their relation to immune function can be studied. I think we need some more detail about his talk!

If I were to de-generalise Prof Newton's statement and quote specifics she says that fatigue associated with ME/CFS is similar to that in PBC and that fatigue associated with Sjogeren's is similar to PBC. Iff fatigue is associative then ME fatigue is similar to Sjogren's.

But I think there are two different questions
She's very familiar with both ME and PBC and if she's using questionnaire data, she should be able to compare the two directly. I read this as saying that all three are similar, though I see why you read it the way you did.
 

user9876

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I read it as maybe pulling apart different types of fatigue, particularly so that their relation to immune function can be studied. I think we need some more detail about his talk!



She's very familiar with both ME and PBC and if she's using questionnaire data, she should be able to compare the two directly. I read this as saying that all three are similar, though I see why you read it the way you did.
I think I went on to say some of that (I was trying to!) but pressed the post reply button too quickly then edited.

I think I would like to see fatigue described in as a vector rather than a scalar so that different aspects are represented in case they give a clue as to different potential mechanisms. I'm not even convinced fatigue in ME is consistent across patients and also over time.

In terms of Prof Newtons statement I read that as a general claim based on a couple of specific comparisons hence I was just trying to pull out the specific comparisons. I feel uncomfortable with general statements unless backed up with proposed mechanism.
 
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Bob

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Depending on the nature of the research, I'm not always keen on 'fatigue' research, as a way to find answers about ME/CFS, as I think there must surely be multiple separate mechanisms that lead to a similar subjective experience of 'fatigue', but with very different causes and biological processes. For example, fatigue can probably be caused by various dysfunctions at the cellular level: e.g. mitochondria dysfunction; chronic infection; immune dysfunction; cytokine abnormalities; genetic mutations; and then there's things like sleep problems, stress, anxiety and depression etc. that also cause fatigue.

I'm not saying that all 'fatigue' research is useless. Indeed, researching other diseases alongside ME/CFS may well bring us serendipitous findings about ME/CFS. But I am wary about discussions of generic 'fatigue'.
 
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user9876

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Depending on the nature of the research, I'm not always very keen on 'fatigue' research, as a way to find answers about ME/CFS, as I think there are probably multiple mechanisms that lead to fatigue. e.g. various dysfunctions at the cellular level; mitochondria dysfunction; chronic infection; immune dysfunction; cytokine abnormalities; genetic mutations; and then there's things like sleep problems, stress, anxiety and depression etc. that also cause fatigue.

I'm not saying that all 'fatigue' research is useless. Indeed, researching other diseases alongside ME/CFS may well bring us serendipitous findings about ME/CFS. But I am wary about discussions of generic 'fatigue'.
I think projects looking at mechanisms that cause fatigue or trigger fatigue are probably worth while in that they may help bring an understanding of where to look for ME. I would differentiate research understanding fatigue from a biological perspective to that of CBT to reduce a generic fatigue (which judging from trials has failed).

I wonder if there is an additional thing which is around PEM where there is a fatigue mechanism (or signalling system) that interacts with an antibody to then cause further effects. It seems to me that an understanding of the various mechanisms may help explain the dynamics of ME.
 

alex3619

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I think its highly probable there are common pathways in the sensing, reporting and interpreting of fatigue. However this says nothing about causes, as in anything that triggers the common pathways will be reported as fatigue, and that is probably a very wide set of things.
 

Sasha

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Sonya tweeted a couple of photos from the workshop and people are putting ideas and sticky notes on a diagram entitled "Public Involvement in the Research Cycle" in a session that involves researchers, clinicians, patients and carers.

That's one of five workshops in a two-hour slot which is coming to an end at 4pm - I'd guess those workshop sessions were in parallel.

Half-hour break and then one-hour panel discussion at 4:30 pm including Dr Ian Lipkin, among others.

Loads of networking stuff after that, including a dinner, and then tomorrow is mostly wall-to-wall research papers.
 

Sasha

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We were discussing the value of researching fatigue as a symptom earlier.

Just been looking at @Jonathan Edwards's account of the IiME conference and colloquium (I've started a thread on it - it seems to be a new report). He lists the main points of research strategy that scientific consensus is pointing to. One of them was "clarification of the effector mechanisms of fatigue including central nervous, vasoactive and metabolic pathways and mediators such as cytokine or antibody".

There were several papers on that today. Good to see the IiME conference work being built on and drawing new scientists in.
 

Sasha

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@Scarecrow - I see from another thread that you're intending to post about the conference at some point - just wanted to bring this thread to your attention. :)
 

Scarecrow

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user9876

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Sasha

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I don't think that this has been put up yet. It's particularly useful as background to the panel discussion yesterday.
http://www.actionforme.org.uk/Resources/Action for ME/Documents/cmrc-conf-patient-session-full-programme.pdf

Apologies for not posting before now. I'm still in brain fog hangover mode. Just off to be a tourist and take a trip to Bath. I'll try to make some brief posts from the bus.
Thanks, Scarecrow - that patients/researchers collaboration workshop looks very interesting. Looking forward to hearing what came out of that.

In Bath, I highly recommend the Roman Baths, the area around the Abbey and Royal Circus and the Royal Crescent. There are open-top tourist hop-on/hop-off buses to save your legs. Enjoy!