UK CMRC 2018 Conference held September 19 & 20 at Bristol

@dave30th .

Is there a Dr Melanie Parker there?

She seems to be the new paed Consult for ME, replacing Crawley.

Frightening training course coming up in December, entitled: "Navigating the minefield: MUS and FII"
http://www.bacch.org.uk/about/SouthWest.htm

 

Pariante's presentation looks like nonsense to me - he's found a way to make people persistently fatigued so thinks they might be a useful proxy to PwME.

'Reassuringly' he says
https://twitter.com/user/status/1042715662639087616

 

Actually, people were already being treated with interferon, so he piggy-backed on that. He was looking at the mechanism by which the treatment, while clearing the Hep C virus, simultaneously induced a long-term fatigue state. Now, whether it's the same fatigue as in ME, who knows? But I wouldn't dismiss it as meaningless so quickly--although I understand why it's tempting..

 

So who tweets for AfME and is happy to quote 'classic psychosocial factors' as if it meant anything?

 

these are Hep C patients he's working with.

 

I agree. I think there is avery important message in the alpha interferon story - that fatigue can persist long after the triggering signal has gone. Some other signal must then take over. Moreover, there is no need for any specific autoimmune response.

The pity is that Pariente is still as far as I know wedded to a biopsychosocial view, for reasons that are unclear.

 

Ha! Not sure who the tweeter is. I assume it's referring to the bogus but "classic"--because repeated repeatedly--"unhelpful beliefs" etc that are part of the BPS model.

 

How does he know that the interferon induced the fatigue rather than the virus? Was that part of the presentation?

 

yes, well, that's the question. And the answer is unknown.

 

This looks like a quite interesting approach.. Perhaps it will give us some clues.

 

The CDC CFS program previously funded research looking at fatigue induced by interferon-alpha.

 

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.

 

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?

 

It's fine to see basic research on fatigue. In my opinion, all research on fatigue should specify which type(s) of fatigue it is investigating, though: cognitive, "mental", muscle, motor; fatigue/ fatiguability / fatigue as part of PEM. I think, this should be the premise of comparisons between illnesses. Did Parente even bother whether the fatigue symptoms of people with Hepatitis C are comparable to those of people with ME?

[Added: I see @Adrian made a similiar comment. I would like to stress that I think it is both possible and neceessary to differentiate types of fatigue by capturing the symptoms as precisely as possible before investigating the underlying mechanisms]

 

I agree that not very much insight seems to have emerged from the studies themselves relating to mechanism.

The interferon does not hang around long. I do not think there is any doubt that it is the interferon rather than the virus that causes the fatigue or that the fatigue goes on far longer than there are significant interferon levels present. I have looked after people who have had interferon for hep C. If it makes them feel terrible it tends to be pretty rapid in onset - it just carries on afterwards.

So I guess there is nothing controversial about the model as an instant of a cytokine triggering fatigue for much longer than it is there. The down side is that it is not clear that these studies have taken us any further from that observation made in the original clinical trials.