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

Invisible Woman said:
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
Click to expand...
My opinion is that focusing on fatigue for PwME is like focusing on what pain is and how pain is produced in the body for people with broken legs - the broken leg in this analogy represents the abnormal reaction to over-exertion, which is either, or leads, into PEM.
 
I see what you're saying, I think, @Andy.

You already know my feelings on the F word, but if I were to say I felt fatigued it would very much be as a secondary issue. So my function declines, cognitive and physical symptoms arise and I increase effort and then fatigue would start. So for me fatigue solving fatigue makes naff all difference - my function has already tanked.

Then there the difference between fatigue and fatiguability.

I can and have lived and worked with fatigue as an ongoing thing as someone with a demanding job with unpredictable hours plus badly managed hypothyroidism and, at times, anaemia. It didn't stop me functioning, I just felt tired.

It's too vague and ubiquitous a symptom and I think we've already wasted far too much research money in it.

Fine for other illnesses where dealing with fatigue is the icing on the cake rather than the only treatment.
 
Invisible Woman said:
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
Click to expand...

I think these questions are one of the reasons why it is worth comparing fatigue in different diseases especially if there are specialists from the other diseases that have data and are doing the studies. The type of thing that Frances Williams was talking about was using the existing data to do comparisons so the cost is in comparison rather than looking at alternative patients. She is also talking about things like using transcriptomics to understand what is happening and here I think there is value in doing comparisons that can explore different mechanisms (or identify where there are common mechanisms).
 
Sorry I don't want to derail the thread so I'll say this then shut up.....

Adrian said:
it is worth comparing fatigue in different diseases especially if there are specialists from the other diseases that have data and are doing the studies.
Click to expand...

I am sceptical and believe it will be a case of garbage in/garbage out. It's simply too common a symptom and fatigue itself isn't clearly defined enough. If it was simply research into fatigue to try to establish what fatigue is and to try to quantify or qualify it then fine. But that's a separate issue, in my eyes, to ME research.
 
Invisible Woman said:
Sorry I don't want to derail the thread so I'll say this then shut up.....



I am sceptical and believe it will be a case of garbage in/garbage out. It's simply too common a symptom and fatigue itself isn't clearly defined enough. If it was simply research into fatigue to try to establish what fatigue is and to try to quantify or qualify it then fine. But that's a separate issue, in my eyes, to ME research.
Click to expand...

I don't think its derailing the thread in that it was a talk given at the conference and there was some discussion about the various existing data sources that could be used for this work (including the twins UK project).

To me its about looking for commonalities and differences for fatigue in different diseases. I do think that think that there are probably different mechanisms but possibily some common ones as well. But it seems like something worth exploring (assuming its done properly) to look at whether there are hints at different mechanisms. If this was just some questionnaire type of suggestion I would agree but I think the work on fatigue in more general terms (including FM) that Francis has been doing is in the omics areas that need to be explored with ME. Thus it helps provide a comparison between the two.

In terms of fatigue being different things I think someone (can't remember who) mentioned pain has now been better catagorised into 8 0r 10 (can't remember which) whether this proves useful is another question but helping separate out the different concepts does seem useful to me.
 
For me, fatigue is something too far downstream to be worth focusing on for us. I'd be more than happy to take advantage of research done elsewhere on it by others, but the longer we put off focusing on whatever broken mechanism produces PEM, the longer we will have people seriously disabled by it.
 
I am sure this has probably been brought up elsewhere so please ignore me.

I sense that I have a lack of energy ( for me ME = missing energy) which causes all my symptoms due to my homeostasis systems being out of whack.
My tin pot understanding is that lots of energy is used by immune systems. So when I use too much energy on daily activities, any infections have a field day cos my immune system hasn’t the energy it needs to fight?

Since mononucleosis when I was floored by the infection, I have never got back in balance and functioning fully.
A bit like being mowed down on a push bike. I have only managed to return to an angle of say 10 - 20 degrees from horizontal. So inevitably trying to ride a bike like that is extremely inefficient.

I wonder if any medical physics scientist could be fascinated by our issue.
Could Sir Paul Nurse of the Crick Institute be hooked?

I have a sense that all our individual genetics, pathways, networkS, life experiences, environments, triggers, etc etc so our downstream end product of our individual homeostasis machines, are hiding some fundamental physics screw up?

Some useful pointers would be appreciated.
 
Personally my wishes for the future would be Stephen Holgate soon retires.

I don’t think he has any sense of appropriate urgency. Probably never met anyone severely affected. And he has been steering this establishment collaboration thing for a very long time, was it 2004 he got involved? I would t want the next sixteen years on a similar pattern.

I was exceedingly unimpressed with his ten minutes. He acknowledged it was being recorded but had no engagement with us the patients at home (contrast to zaher nahle at the solve conference).
Apparently everyone was amazing etc. He’s obviously happy with the gwas progress, I assume that’s what he meant by the progress and transformational stuff. (*Some might feel fair enough )
He accepts they’ve taken quite a long time to get here (but we still don’t know where we are going do we? )
He’s excited about working on a fatigue project with versus arthritis, when most ME patients haven’t this interest , I couldn’t understand whether that was supposed to be relevant to us or a side issue
And then he’s talking about the next level. (How many levels are there on “this journey” and at what level does it start to get really good?) He’s talking about the need for restructuring (agsin) , the CMRC is apparently informal ( but was formed because the mrc disbanded what was probably the more formal ME expert group).
 
Last edited by a moderator:
Helping to build an ME/CFS Bioresource from Kristian Spreckley, NIHR National Biosample Centre
Code: 
https://youtu.be/eOMXWIivkRI



Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis – ICanCME – Research Network: Opportunities for Cross-National Collaboration from Prof Alain Moreau, Université de Montréal / CHU Sainte-Justine
Code: 
https://youtu.be/G6riAVu0l50

 
Oral Presentation: A patient’s perspective. Key quantitative and qualitative analysis from Action for M.E.’s Big Survey from Sam Bromiley, Action for M.E.
Code: 
https://youtu.be/nFpTIKI_Bjs



The Mason ME/CFS Biobank in Australia: the SWOT of building a biobank from Adjunct Associate Professor Dr Heidi Nicholl, Emerge Australia
Code: 
https://youtu.be/S_3nTrdTBCg

 
ME/CFS medical education from Dr Nina Muirhead, Buckinghamshire Healthcare NHS Trust
Code: 
https://youtu.be/NjFKLFr8hqw



Presentation from ME CFS Priority Setting Partnership: awareness raising workshop from Katherine Cowan, Senior Adviser, James Lind Alliance,
Code: 
https://youtu.be/S7-7-mWgCMc

 
Oral Presentation: ME/CFS Significant negative impact on Quality of Life of both patients and family members from Esme Brittain, Cardiff University
Code: 
https://youtu.be/sU28dAbbCVU



Cochrane reviews, protocols and plans from Richard Morley & Rachel Marshall, Cochrane Library
Code: 
https://youtu.be/VA29FPjtpTw

 
Plasma metabolomics: a tale of two cohorts from Dr Karl Morten, University of Oxford
Code: 
https://youtu.be/-yyusmxizQk



The UK ME/CFS Biobank: virological and immunological participant characterisation from Dr Jackie Cliff, London School of Hygiene & Tropical Medicine
Code: 
https://youtu.be/52j0ivCIlQg

 
Is there evidence for T cell clonality being a ME/CFS biomarker? from Prof Chris Ponting, University of Edinburgh
Code: 
https://youtu.be/sTe3zDbPveQ



Upregulation of Epstein-Barr virus induced gene 2 (EBI2) in ME/CFS from Dr Jonathan Kerr, Norfolk & Norwich University Hospital
Code: 
https://youtu.be/Q8YrWldqB4U

 
Chronic fatigue in the general population from Prof Frances Williams, King’s College London
Code: 
https://youtu.be/S1JWLc8axw8



Deconstructing post-exertional Malaise in Myalgic Encephalomyelitis: an exploratory biomarker study from Prof Alain Moreau, Université de Montréal / CHU Sainte-Justine
Code: 
https://youtu.be/9nmkKLLJ4-0

 
Oral presentation: Could antiviral and chemotherapy agents have an impact in ME/CFS due to direct effects on mitochondrial function? from Megan Stoker, University of Bath
Code: 
https://youtu.be/oX2hXQLJT8E



Abnormal cerebrovascular reactivity among ME/CFS patients from Dr Michael VanElzakker, Massachusetts General Hospital/ Harvard Medical School
Code: 
https://youtu.be/87iCTkdOfBQ

 
Infectious etiology behind Mitochondrial architecture and Cell danger response in ME/CFS from Dr Bhupesh Prusty, University of Wuerzburg
Code: 
https://youtu.be/ePLeSfekP88



Is using high quality HCP (Human Connectome Project) MRI to investigate effects of mild inflammation on brain function in ME/CFS? from Dr Jessica Eccles, Brighton and Sussex Medical School
Code: 
https://youtu.be/Wll4JodgSvg

 
You must log in or register to reply here.
Back
Top Bottom