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

When the alternative is almost certain slow death, side effects tend to get explained.

 

Agreed.

To be fair to the authors, the paper itself does make clear that this only *might* be a model for ME/CFS - it is the follow-up reporting which overhypes this. Which is a problem that affects pretty much all scientific research. I just can't help feel that this paper is getting more than the usual amount of criticism because of its source rather than its contents.

 

Speaking solely for myself, the reasons I'm being critical of this paper is 1. I'm aware of it. I would be critical of any other paper where the hype far exceeds what the paper says but, for obvious reasons, this one is known to me, and 2. as NelliePledge touches on, authors of the paper are involved in the hype. It took a patient to actually get the senior author of the paper to admit, on air, that this study doesn't definitely look at CFS patients - I'd have more time for Pariante, and this paper, if there was actually an interview with him about this study where he corrects the hype unprompted.

Just because a problem is widespread shouldn't mean that we can't call out individual instances of that problem.

 

It is natural that the degree of scrutiny should be commensurate with the degree of publicity and the claims made for the paper.

It is perhaps unfortunate for the lead author, whom one would not wish to discourage, but orchestrated events have overtaken the normal approach.

And Pariante needs to state what is the synthesis of his apparently conflicting positions.

 

I don't know if anyone else picked up that on the Radio 4 interview he uses 'chronic fatigue syndromes'
plural.

 

Thank you!

 

Sonya doesn’t do much aside from CMRC stuff recently it seems and that’s also cooling off as there’s no conference next year and they have many other staff, so I doubt it’s that. They are still keeping a Facebook page going, and discussing it with tweets isn’t any more Work than Facebook. They usually do both.

 

Not sure whether anyone else has noted here [apols if so, but these are the things that stood out for me], but a few limitations I noticed, that run contrary to the hyped media version presented:

They didn't even measure IFN-a in the CFS pt group, either in vivo or in vitro. Maybe an in vitro challenge (like in the Lever et al 1988 study) should be their next step if they want to draw parallels?

There were also differences in fatigue "levels" between the groups:

Note that they considered a CFQ score <18 to be "in the normal range".

 

I think maybe Pariente needs to realise that if he wants to be taken seriously as an ME/CFS scholar he needs to make it clear what he thinks. As it is the impression we get is that t either he does not really know what he thinks and is muddled, or he is trying to please different people different ways - in publication and in popular comments.

This is something that the BPS people need to get right if they are ever going to have any credibility outside their own circle. They have to demonstrate they actually know what they mean. As a disinterested academic observer I am unimpressed.

 

Thanks. I had thought that there were other treatment options available. As you and strategist have pointed out, this did not seem to be the case.

 

Not then I think. There are better options now as I understand it so I doubt this work will be repeatable.

 

We most definitely should highlight problems with the study. The question is how far should we go, given that despite the hype this study is not very relevant. If it starts gaining traction as though it were relevant, aside from poor reporting, then the need for more criticism will rise. The first I would be sure to mention is that Oxford should be retired, and any study using it has built-in obsolescence.

To me the comments that most disturb me are patients taking this hype at face value, often in the comments sections of newspaper articles reporting this. It is mildly disturbing to me that some in our community are vulnerable to this kind of hype. One actually said they were looking forward to a cure, clearly in reference to this research, and that this finally validates CFS is real. More and more reading forums are becoming scientifically literate, but many in the community are not.

 

I thought this too; with the interviewer emphasising that CP is Prof of Biological Psychiatry.
This research appears to be their answer to the call for more biological research into ME and on the surface it sounds as though it is. By openly criticising it feeds into the 'militant minority against research' narrative that they have previously successfully used to try and silence their critics.

I think (as some twitter posters are already doing) just pointing out that this is not a study of ME/CFS patients, and citing other more deserving research on the involvement of the immune system in research that actually uses pwME as subjects is the best way to counteract.

Unfortunately, getting the media to follow suit is another matter.

 

Also worrying is that there is a discussion of this trial on another forum where it is seen as adding to the evidence that vaccines are only a way for companies to make money and are making people sick. More immune activation, more fatigue so vaccine more immune activation more fatigue.

 

Hi - I've just got back from a holiday & I think AfME are probably on the festive break now, so not sure i can do much to influence! Whilst in Spain, i did see a notice from AfME saying that they had concerns about the fact that this is clearly NOT a study of ME/CFS patients, and that the criteria wasn't as robust as we should expect (essential , in my personal opinion).

I did speak to Carmine at the CMRC conference , as I wasn't happy, but he said: a) yes, he felt awful that these people were feeling so shit / wrecked for months after their treatment, and b) The study was basically being opportunistic - here we had (no need to recruit) patients that we could study the effects of & likelihood of post-in_alpha induced fatigue (as some would go on to develop chronic fatigue - yeah, not ME/CFS, but.....), so they could study cytokine levels etc before & after. So it was an opportunity to study the effects , & leaves questions un answered, but on balance, I think it's good it got studied. Carmine & his team clearly know there's something amiss (he may be a psychiatrist, but he certainly believes it's a physical disease!!!!). Btu of course no answers for sufferers here. & I was convinced ME/CFS was immune system dysfunction when i got ill a mere 21 years ago!!!!!

However, like most people, I'm surprised at the coverage in the press - shows what SMC influence exists, shocking - there's been 1000s of studies with more patients (this one had 18????), just not reported by the UK press as SMC wasn't interested. Absurd & unbalanced. SMC has too much influence. Hmmm.

 

But from his interviews it appears he thinks everything is 'physical'; that's one of the problems with the (B)PS lot, they twist language as it suits them.