UK CMRC 2018 Conference held September 19 & 20 at Bristol

dave30th said:
I was wondering about this and tried to be alert for it. But it wasn't really evident to me from his talk. Is your sense just a general feeling or is it based on some specific things he said/done recently?
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It is based on things he has said in the past and in particular on a referee's report he wrote on someone else's paper that became public. He basically said that any paper that did not say that ME was biopsychosocial had to be rewritten (he considered that non-negotiable). He might have changed his view but I have seen no indication of that.
 
Jonathan Edwards said:
It is based on things he has said in the past and in particular on a referee's report he wrote on someone else's paper that became public. He basically said that any paper that did not say that ME was biopsychosocial had to be rewritten (he considered that non-negotiable). He might have changed his view but I have seen no indication of that.
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I genuinely wonder how they arrive at such strong views. There isn't a single publication that unambiguously demonstrates that any psychosocial factors perpetuate ME/CFS. So the actual contribution could well be zero.
 
dave30th said:
He was looking at the difference between Hep C patients who took interferon and did not end up with a persistent fatigue state, and those who took interferon and did end up with prolonged fatigue. All cleared the Hep C virus but about 30 % of the participants who got interferon and cleared Hep C still ended up fatigued after six months.
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Thanks for the explanation. I still don't see how that confirms that it is the interferon causing the fatigue and not the Hep C but I'm having a bad day so it might just be me.
 
I can see that studying fatigue, however it has been induced, is a valid and potentially interesting thing to do that might contribute something useful to understanding of the fatiguing aspects of ME, MS, and any other fatiguing condition.

The bit I have difficulty with is the phrase 'a proxy for ME'. We have been harmed so much by PACE, Crawley and others who explicitly or implicitly work on the assumption that fatigue is a proxy for ME that we are understandably wary of this as a starting point for research.

Can anyone tell us whether there was any data collected about whether the patients in this Pariante study had PEM?
 
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Jonathan Edwards said:
If I remember rightly you feel terrible with hours of the interferon injection. It is likely that you have had the hepatitis for years at that point.
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I don't know if these are the same interferon injections that people with MS get. PwMS report flu-like symptoms for 12-24h after their interferon injection, but no prolonged fatigue after the flu symptoms are gone.
 
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Trish said:
I can see that studying fatigue, however it has been induced, is a valid and potentially interesting thing to do that might contribute something useful to understanding of the fatiguing aspects of ME, MS, and any other fatiguing condition.

The bit I have difficulty with is the phrase 'a proxy for ME'.
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Yes - and this type of fatigue research should not be described as ME research. It should not suck up funding that could otherwise be used on ME specific research!
 
Trish said:
The bit I have difficulty with is the phrase 'a proxy for ME'.
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exactly; Crawley did it a lot with her use of CDF (chronic disabling fatigue) as a proxy.
By and large the NHS regard ME/CFS as fatigue; any services for pwME tend to be in fatigue clinics.
It seems that when dealing with any other condition that might result in fatigue, this is nearly always the only symptom where they draw comparisons with ME (for pain it tends to be FM).
 
Trish said:
I can see that studying fatigue, however it has been induced, is a valid and potentially interesting thing to do that might contribute something useful to understanding of the fatiguing aspects of ME, MS, and any other fatiguing condition.

The bit I have difficulty with is the phrase 'a proxy for ME'. We have been harmed so much by PACE, Crawley and others who explicitly or implicitly work on the assumption that fatigue is a proxy for ME that we are understandably wary of this as a starting point for research.

Can anyone tell us whether there was any data collected about whether the patients in this Pariante study had PEM?
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Thanks @Trish this expresses my thoughts that I was trying to get at not very well in my comments - not a good day today
 
Jonathan Edwards said:
No it is a different substance altogether. One is alpha and one is beta.
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Would it be worthwhile to investigate the immunological mechanisms linked to interferon-ß induced flu-like symptoms in pwMS then? I think a majority of pwME has flu-like symptoms, at least during PEM phases, and these seem to me to be more specific than "fatigue".

[Edited to add: I realize that the interesting part of Pariente's finding are the persisting symptoms. And it would be really unethical to conduct a trial comparing pwMS's with pwME's reactions to interferon-ß in order to investigate whether their flu-like symptoms would persist..... Thus, my question might be rather a response of defiance of Pariente's sloppy use of the term "fatigue".]
 
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It's no good - I just can't be fooled by the word 'biological' when its context says something different. I'm trying but it's not working.

eta - Perhaps I'm being premature - I'm refering to the tweet from Pariente's presentation - perhaps it doesn't represent his words well. We'll see when the video is available :cautious:
 
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Jonathan Edwards said:
If I remember rightly you feel terrible with hours of the interferon injection. It is likely that you have had the hepatitis for years at that point.
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I have had a family member given interferon a for melanoma. He had the treatment for a year and felt utterly dreadful the whole time. Extreme flulike symptoms, nausea, severe fatigue. @Trish I don’t know if the fatigue had a pem aspect to it. I don’t remember that being talked about so possibly not. He could only work about 3 halfdays a week. Interestingly he couldn’t drink alcohol, which was a part of his normal lifestyle.

ETA: forgot to add that he struggled with depression during this year which was very different to his usual state
 
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With all the talk of behind the scenes talks going on I’d half expected some kind of announcement at the end, either way hay we have some funds, or we have some type of exciting new thing to show for the year but nope, it’s just thanks see ya next time. Seriously, what’s happening regarding a dementia platform thing? I thought it had been decided now was the time to ask for MRC funds.,, We deserve better than being told MH and inflammation research might have some spin offs and AFMEs finish tweets were just thankyous.
 
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