Persistent fatigue induced by interferon-alpha: A novel, inflammation-based, proxy model of Chronic Fatigue Syndrome, 2018, Pariante et al

The Telegraph article (and its syndicated spin-offs) has a serious error. They say infections or emotional stress can trigger the illness, while the paper specifically refutes the latter. They may need to amend their article, because it's incorrect.

 

Tweet was deleted. It was just somebody from BBC World Service looking to interview Pariante.

 

Tweeted author of article, Sarah Knapton, with this info, though doubt she will reply. She has form and noticed she hasn’t tweeted about this article.

 

I agree with this. I think it’s better to more mindful of tone than content. It’s worth remembering that the person suddenly getting a bunch of tweets is going to likely have 1% of the knowledge that we patients have on all the history and politics of ME. It doesn’t really matter if we say “well I was just pointing out facts”, it’s very difficult to articulate issues in such a small space on Twitter, and barely any of the tweets I’ve read to the journalists involved would sway me if I was a bystander. It’s a shame.

I’m sure that some will read into this and criticise me for saying we should go easy - that’s not what I’m saying. Just need to be better at winning people on side, I couldn’t really care less how it’s done - but the online equivalent of shouting is definitely not going to achieve that.

 

well done; just listened.

eta: just goes to show that it is possible to get the right info out there, and ask the right questions.

 

Well done John you were superb. Great to hear a really informed patient so the interview with Carmine pariante was much more incisive. I just wish patients could engage with the fatigue researchers more.

 

It seems to be a case where this could be relevant to us but not necessarily specific. If it could serve to advance greater acceptance of the debilitating nature of extreme fatigue, something found in many other diseases, this could still be useful.

But the leap that this applies specifically to the cause of ME (or do they mean CFS as distinct from ME? so much confusion) is most definitely wrong.

 

I'm wondering whether high baseline levels of immunosuppressive IL10 or elevated IL6 levels post treatment contribute most to developing the persistent fatigue state (or perhaps they're interlinked?).

 

This one was written by Pariante (well, co-author anyway), BTW.

 

Give the devil his due -- there's actually quite a lot of research that says emotional stressors incite an immune response. Though I'm not so sure of its quality.

Every. Time. Reinforcing the opposite stance is not something we should be doing ad infinitum.

The implication is that her arguments were from emotion rather than facts, or that women arguing in general should be thought of as emotional. I like your joke about all of Westminster being emotionally motivated, @TiredSam but I think we know what the author is implying here. Morally repugnant use of language.

 

It can be pretty serious, but your point is taken re: 1 pnt on the Chalder scale.

Yes.

 

@EspeMor - this is great news but 'Don’t forget you can use ME Action’s toolkit pinned on top to contact your MP to ask him to attend the debate when it happens'? There are women MPs too! In fact, it's the centenary this year of when the first women got the vote in the UK and the first female MP was elected to parliament. Can we get this language fixed, please?

 

Pleased to be in the company of such clever people, as always.

 

I accept that interferon can cause serious symptoms, but this study still stinks. Why would someone define persistent fatigue as the smallest possible worsening on the Chalder scale? According to the principle that the things that are omitted are often important, I suspect it tells us that this persistent fatigue (in most cases) is not associated with substantial impairment of the kind required for a CFS diagnosis (what is omitted is an analysis that tells us how similar this persistent fatigue is to CFS).

It's like the PACE trial again with its nonsensical definitions. No surprise there when PACE authors are on the author list.

 

You were excellent, well done.

 

Does the paper specify where the KYN/TRP was sampled from? Phair has stated that the KYN and TRP of significance is intracellular, which isn't an easy measurement to make.

 

If they only had funding for a very small study, I can see why they'd want to do what they could to avoid overlooking any possible signal. Even with that very loose criteria they still only ended up with 18 participants classed as having persistent fatigue. It's not ideal, and it seems that there's been a media campaign to exaggerate the importance of this work for ME/CFS, but I don't think that this is just nonsense research or close to being as bad as PACE.