UK CMRC 2018 Conference held September 19 & 20 at Bristol

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.

 

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.

 

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.

 

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.

 

I heard the interferon treatment can cause such a terrible depression that people can kill themselves.

 

I think Raison or Miller might have been the principal investigator
https://www.ncbi.nlm.nih.gov/pubmed/?term=Miller+AH[Author]+Fatigue+interferon-alpha
https://www.ncbi.nlm.nih.gov/pubmed/?term=Raison[Author]+Fatigue+interferon-alpha

Another name that rings a bell is Lucile Capuron

 

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.

 

No it is a different substance altogether. One is alpha and one is beta.

 

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!

 

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).

 

Tweets recommencing...

 

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".]

 

Pariante waffle
https://twitter.com/user/status/1042784314717626368


What does this even mean???
https://twitter.com/user/status/1042784851257176064


https://twitter.com/user/status/1042785950798163969


And what a load of rubbish
https://twitter.com/user/status/1042789340659830785

 

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

 

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

 

The poor man is trying to explain to himself what he ought to be thinking.

Perhaps he should realise that no explanation of this sort is needed.

cytokines make you feel yuk - that is all we need to know.

 

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.

 

is the blue man saying 'stop'?

eta: my goodness is this the protomolecule from the Expanse