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

adambeyoncelowe said:
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.
Click to expand...
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.
 
Last edited:
Londinium said:
Also (the devil's advocate bit), given that we have a PR problem as a patient group, I do sometimes think seeing tens of negative comments under science reporters' tweets on this topic may represent a bit of an own goal.
Click to expand...

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.
 
Lucibee said:
I really don't understand how they can possibly reach these conclusions from this study. They have presumed that IFN-alfa-induced persistent fatigue after HCV is a good model of CFS, but then have demolished that by only being able to match one of the cytokines measured (IL-7).

All they've done is looked at persistent fatigue in HCV. To align this HCV-PF with CFS seems to completely misunderstand what CFS (and by inference ME) actually is. It is not "persistent fatigue". They claim to have looked at CFS prospectively, but clearly haven't at all. How can they make any assertions about what goes on "early in the course of the illness" when they haven't even looked at it? Are they assuming that the fatigue element of ME/CFS is somehow induced by IFN-alfa (or some similar unspecfied mechansim)?

I guess by this logic, my bowl of oranges is a good model for your bowl of apples because they are both roughly spherical objects.
Click to expand...

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?).
 
Esther12 said:
I didn't see anything in the study to suggest that emotional stress triggers an out-of-control immune system, and it seems that wasn't tested.
Click to expand...

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.

Esther12 said:
The articles framing of *challenges CFS is 'all in the mind'*
Click to expand...

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

TiredSam said:
Looks like either Carol Monaghan or Westminster Hall are now officially "emotional".
Click to expand...

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.
 
Cinders66 said:
Apparently the House of Commons debate was offered for this Thursday, declined for reasons below. I don’t know when it was decided, maybe has some relevance to today



I hope there’s awareness we need advanced warning otherwise MPs don’t be briefed
Click to expand...

@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?
 
Michiel Tack said:
I think I would have found this an interesting study if they presented it as a study of persisting fatigue that can be relevant for conditions like ME/CFS.
Click to expand...

strategist said:
it actually seems to be primarily about who gets the right (or burden) of treating patients with the illness in question.
Click to expand...

Snow Leopard said:
There is also an assumption that it was the interferon-alpha intervention that was the primary cause of the persistent fatigue, rather than being a bad-luck consequence of the underlying chronic infection they are attempting to treat.
Click to expand...

Pleased to be in the company of such clever people, as always.
 
Jonathan Edwards said:
I detect a certain reluctance by people to take this seriously - just a bit of fatigue or whatnot. I can assure everyone that interferon alpha induced fatigue can be every bit as debilitating as PWME describe. I had one patient who was devastated by interferon. Moreover, it did not work for him and he died of his Hepatitis after a couple of years of being unable to do anything for himself.
Click to expand...

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.
 
Last edited:
strategist said:
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 closely 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.
Click to expand...

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.
 
You must log in or register to reply here.
Back
Top Bottom