UK Research Collaborative Conference in Newcastle: 13th - 14th October

[Simon]

Would love to get@Jonathan Edwards take on Dr Caroline Strchan's work that points the finger at transitional B-cells in chronic fatigue (Breast cancer patients with fatigue post-chemo, and CFS patients)

 

[Bob]

Dr Strachan

Interesting research about b cells.

I might have misunderstood, but this is what I think I heard...

For CFS there is a decrease in transitional b cells.
Physical function correlates with levels of transitional b cells.
And I think she might have said that fatigue correlates with levels of naive b cells. But I might be inventing this.

 

[ukxmrv]

Dr Fluge presented on rtx before that - I don't know if they broadcast any of his talk at all.

No, just tweets

esther crawley ‏@CrawleyEsther 58m58
Fluge: autoantibodies decline in Rituximab responders. Non responders have a higher baseline levels and no significant decrease. #CMRC2015

Sonya Chowdhury ‏@SonyaChowdhury 1h1 hour ago
Fluge sharing emerging data from phase III rituximab trial with #mecfs #CMRC2015

Sonya Chowdhury ‏@SonyaChowdhury 1h1 hour ago
Dr Fluge outlining his phase III rituximab trial with 150 participants across 5 centres in Norway #CMRC2015

Katie Druce ‏@katie_druce 1h1 hour ago
Fluge: there's a number of issues in this work and the results must be reproduced in larger samples and meeting other limitations #CMRC2015

esther crawley ‏@CrawleyEsther 1h1 hour ago
Fluge: 6month lag time to clinical response suggests antibodies may be involved as there is a long half live for immunoglobulins #CMRC2015

Katie Druce ‏@katie_druce 1h1 hour ago
Fluge: B-lymphocytes appear to have an important role is symptom maintenance in a sub-group of CFS/ME patients #CMRC2015

esther crawley ‏@CrawleyEsther
Fluge: it takes 6 months to get a response to Rituximab. One third don't benefit. #CMRC2015

Katie Druce ‏@katie_druce 1h1 hour ago
Fluge: mean lag time of those who clinically respond is 23 weeks. The maximum time was one year. Time is clearly key for response #CMRC2015

 

[Sasha]

Are you at the conference today, @Jonathan Edwards?

 

[Sasha]

If Dr Fluge is sharing preliminary data at this stage (given that the trial consists of treating all patients now and that it's the 24-month follow-up period that will delay final results till 2017/18, as I understand the set-up), does this mean that we can expect papers to be published relatively soon on their initial work, @Jonathan Edwards?

 

[Bob]

Action for ME's YouTube channel:
https://www.youtube.com/channel/UC42_Y8tjFhBbR1zpnmJsGBg/videos

(Nothing new posted on it yet, since Sasha posted the videos earlier.)

 

[Sidereal]

esther crawley ‏@CrawleyEsther 58m58
Fluge: autoantibodies decline in Rituximab responders. Non responders have a higher baseline levels and no significant decrease. #CMRC2015

Which autoantibodies?

 

[elliepeabody]

Dr Strachan

Interesting research about b cells.

I might have misunderstood, but this is what I think I heard...

For CFS there is a decrease in transitional b cells.
Physical function correlates with levels of transitional b cells.
And I think she might have said that fatigue correlates with levels of naive b cells. But I might be inventing this.

Yes, that is what I understood too.

Plus there is also a correlation between breast cancer patient's levels of fatigue and the transitional and naive b cells who are also part of the trial.

ETA: but no mention of criteria used to select CFS patients other than those with psychological disorders and autoimmune diseases were excluded, and no mention of PEM.

 

[Wildcat]

Was Dr Simon Collin's (Bristol University) 12 pm presentation streamed?

It was 'Cohort Profile: The Collaborative on Fatigue Following Infection (COFFI)'

 

[elliepeabody]

Was Dr Simon Collin's (Bristol University) 12 pm presentation streamed?

It was 'Cohort Profile: The Collaborative on Fatigue Following Infection (COFFI)'

Yes it was streamed.

Here is a list of some of the research he has been involved in
http://research-information.bristol.ac.uk/en/persons/simon-m-collin(210d47af-2c3f-405f-be93-804e71b0b71e)/publications.html

ETA
Including this particular gem
Maternal and childhood psychological factors predict chronic disabling fatigue at age 13 years

CONCLUSIONS: Pediatricians need to be aware that children whose mothers experience anxiety and/or depression between pregnancy and child's age 6 years have an increased risk of developing chronic disabling fatigue in early adolescence. Conversely, clinicians need to be alert to fatigue in children whose mothers have longstanding anxiety and depression. These findings suggest the importance of family-based approaches to treatment

 

[Simon]

Sorry to drag things back to yesterday's Mark Edwards presentation on a new MRC-funded project. There was some interesting stuff today (more on Collin study later)

It can be difficult to interpret slides in the absence of dialogue.

What do you make of this slide in the same presentation?

He doesn't like Freudian explanations/hysteria, or reattribution (interpreting emotional problems as physical symptoms, if I understand right) - but he is big on abnormal illness beliefs, the result, in his view, of flawed learnig styles. Who knows, maybe he's right - some of the slides were interesting, and as you say were hard to interpret without the background. But the conclusion seemed pretty unambiguous:

Bringing it together: Learning Style Favours The Development of False Beliefs

My fundamental problem with this, at least as applied to mecfs, is that if fails when the rubber meets the road. CBT, specifically targetting false beliefs (and symptom-focusing, another issue Mark Edwards has said is a factor) produces only mediocre gains in self-reports in unblinded trials, with no gains on objective measures. That seems like a good reason to question a false-illness belief theory. (Mark Edwards uses or recommends CBT in his cliniic, but that's for functional movement and maybe it's a whole lot more successful for functional movement disorders)

 

[Simon]

Just been watching Alison Russell report on her/Carmine Pariente's MRC study on persistent fatigue in post interferon treatment of Hepatitis C patients. While I think this is an interesting model that may be relevant to mecfs, it seems that the project has largely been overtaken by events: There's a new Hep C treatment/cure on the market.

The problem with using interferon alpha as a treatment for Hep C (it works by boosting the immune system's efforts to clear the virus) is the many side effects, including fatigue. And it generally isn't a cure, while new treatments incuding simeprovir can cure many people (depending in part on your genotype). The new treatments mean fewer people are getting IFN-alpha treatment, which is great news for patients but has slowed down the project - and seems to doom any long-term use of this as a model for mecfs.

 

[Sasha]

Expecting Prof Jim Horne's talk to be livestreamed at 13:45 (i.e. in 10 minutes).

No title for his talk is listed - I don't know anything about him.

 

[elliepeabody]

Expecting Prof Jim Horne's talk to be livestreamed at 13:45 (i.e. in 10 minutes).

No title for his talk is listed - I don't know anything about him.

If it is this chap http://jimhorne.co.uk/
Then his area of interest is sleep and psychology - a sleep neuroscientist apparently

 

[Sasha]

My fundamental problem with this, at least as applied to mecfs, is that if fails when the rubber meets the road. CBT, specifically targetting false beliefs (and symptom-focusing, another issue Mark Edwards has said is a factor) produces only mediocre gains in self-reports in unblinded trials, with no gains on objective measures. That seems like a good reason to question a false-illness belief theory.

I think the fact that the idea is so inherently implausible and in such direct contradiction to the everyday lived experience of patients is what scuppers it. Who can make themselves too tired to clean their teeth, just by focusing on how tired they are?

I can understand that paying attention to a minor feeling can increase the experience of the symptom or lead to worries about whether it might be serious, but there are limits. ME is so way off the scale for this sort of explanation.

 

[elliepeabody]

I think the fact that the idea is so inherently implausible and in such direct contradiction to the everyday lived experience of patients is what scuppers it. Who can make themselves too tired to clean their teeth, just by focusing on how tired they are?

I can understand that paying attention to a minor feeling can increase the experience of the symptom or lead to worries about whether it might be serious, but there are limits. ME is so way off the scale for this sort of explanation.

Ahh the irony for Edwards of having false beliefs about false beliefs!

 

[Sidereal]

Including this particular gem
Maternal and childhood psychological factors predict chronic disabling fatigue at age 13 years
CONCLUSIONS: Pediatricians need to be aware that children whose mothers experience anxiety and/or depression between pregnancy and child's age 6 years have an increased risk of developing chronic disabling fatigue in early adolescence. Conversely, clinicians need to be alert to fatigue in children whose mothers have longstanding anxiety and depression. These findings suggest the importance of family-based approaches to treatment

I laughed out loud at the "family-based approaches to treatment" bit because it's clearly hinting at family therapy. Interesting data nonetheless. Looks like there may be a role for the mother's diseased microbiome being passed on to the child at that crucial early age, setting them up for problems later on when puberty hits.

 

[Simon]

The Simon Collin talk 'Cohort Profile: The Collaborative on Fatigue Following Infection (COFFI)' was intriguing. It aims to set up an international consortium of post-infectious cohorts, looking at post-infectious fatigue (including but not restricted to mecfs)

So, I know a lot of people will be suspicous of a project driven by Esther Crawley, Peter White and Andrew Lloyd. But there are some really interesting things about this study, not least that it's huge, and includes the Dubbos cohort (one of my favourite studies), the Katz/Jason huge NIH-funded prospective study of glandular fever in college students and the intriguing Bergen Giardia outbreak (Giardia lambia is a nasty gut parasite) that led to many cases of IBS and CFS.

Also, Collin said there had been an attempt several years ago to construct a huge UK cohort, including a Gene Wide Association Study, that failed to get funding. You could see that as one arm of the Grand Challenge mapped out by Stephen Holgate, that would add gene expression, proteomics, metabalomics and immune profiling (and more) to this approach.

The feedback from rejected grant applications was that the combination of a) a broad and disputed case definition - and almost certainly a lot of patient heterogeneity (ie probably lots of different illnesses), coupled with b) the lack of specific hypotheses made it too vague. They hoped by focusing on post-infectious cases (getting in at the beginning of the illness too) they would have a much 'cleaner' patient cohort, combined with much greater statistical power (ie ability to find real effects) from a huge group of cohorts, would given them more chance. Potentially patients (the mecfs ones) from this international consortium could be just what's needed for the Grand Challenge and other studies.

 

[Sasha]

I know they haven't announced that they'll be livestreaming anybody but Jim Horne this afternoon but my impression is that they're just asking presenters right before their presentations and that some are saying 'yes'.

I'm really hoping that we might hear George Davey Smith, or at least Prof. Holgate again, later this afternoon. I'm going to leave the channel open.

 

[Sasha]

Livestreaming again now...