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

I've had concerns about this line of research (on the other forum) since the MRC funding was announced for this project. Academic psychiatrists have been asserting for 20+ years that interferon-alpha treatment for hep C is a biological model of depression. There are 1000s of publications on this topic. I've had reservations about this as the symptom picture doesn't quite fit. What this Pariante study seems to show is that interferon-alpha is actually a model of some sort of persistent fatigue state, not depression. Quelle surprise. Although this study made no attempt to find out whether this persistent fatigue condition shares hallmark features of ME/CFS such as PEM and orthostatic issues, they reported it in the media as a study of ME/CFS. The authors should clarify their views.

The fact that such an unremarkable study is getting such media attention makes me suspect that the BPS lobby is pivoting from their previous extreme position which they had staked out in the 1990s (there is nothing wrong with these patients, they just need exercise) to something that's less untenable but can still be interpreted within the BPS framework. It's easy to imagine them interpreting this as ME/CFS being triggered by an immune event in people who are predisposed and then once the cytokines are gone the unhelpful beliefs and behaviours perpetuate the condition. In other words, just a restatement of their original position in immunobabble language.
 
Sid said:
The fact that such an unremarkable study is getting such media attention makes me suspect that the BPS lobby is pivoting from their previous extreme position which they had staked out in the 1990s (there is nothing wrong with these patients, they just need exercise) to something that's less untenable but can still be interpreted within the BPS framework. It's easy to imagine them interpreting this as ME/CFS being triggered by an immune event in people who are predisposed and then once the cytokines are gone the unhelpful beliefs and behaviours perpetuate the condition. In other words, just a restatement of their original position in immunobabble language.
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precisely @Sid,

like i said, no wonder they love it, & him
 
Cort Johnson seems to quite like the study
Conclusion

It was very good to see an MRC-funded physiological study pan out and get such abundant media coverage. Thankfully, Lenny Jason is in a good position to follow up on this study result to see if IL-10 is indeed raised in young people who fail to recover from infectious mononucleosis. If that pans out, the first predisposing factor for ME/CFS in the blood will have been found.

That finding will then give us an entry point to determining how ME/CFS comes about. Avindra Nath’s and Derya Unutmaz’s studies of short-duration post-infectious ME/CFS patients would hopefully be able to piggyback on the British finding and begin to unravel the genesis of ME/CFS.

The basal ganglia/hepatitis connection is fascinating because it suggests that the Brits’ hypothesis, that fatigued hepatitis C patients present a good model for ME/CFS, may be correct. Andrew Miller’s and other studies suggests that the brain changes in ME/CFS replicate those of the fatigued hepatitis C patients. Interestingly, they affect the basal ganglia – a part of the brain involved in motor activation (physical movement), learning, cognition and fatigue.
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https://www.prohealth.com/library/s...udy-highlights-energy-issues-gut-subset-89153
 
Sly Saint said:
I don't remember any of the other MPs defending the treatment (not even the Minister who spoke at the end). There was a lot of anti-PACE discussion.
Where did the BBC get this from?

eta: need to check the Hansard, but I think a complaint/retraction of that line request might be in order.

eta2: as I thought; I've been thro the whole transcript and all references to GET are negative, there was absolutely no one who even vaguely defended it.....(unless you count Michael Sharpes email to Carol Monaghan)
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I complained to the BBC about this report on 17th Dec 2018.
Received first reply 25th December giving me complaint reference number.
Subsequent email from BBC 13th Jan:
"
We are contacting you to apologise that we’ve not been able to reply to your complaint within the time period we aim for. We manage this for most complaints but regret it’s not always possible to achieve.

If you wish to refer this delay and the substance of your complaint to the BBC’s regulator Ofcom, you can do so online at https://www.ofcom.org.uk/tv-radio-and-on-demand/how-to-report-a-complaint/bbc-tv-channel-radio-station-bbciplayer or by post to: Ofcom, Riverside House, 2a Southwark Bridge Road, London SE1 9HA. Please include for Ofcom your latest correspondence from and to the BBC and any BBC case reference numbers which you have been given".

Not had any further email.

(nb the time they aim for is 10 days).
What should I do now? Is it worth pursuing?
 
Sly Saint said:
What should I do now? Is it worth pursuing?
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Yes. I would first write to or phone BBC complaints department to ask what has happened to your complaint. (If you phone make sure you get a reference for the call.)

I would delay taking it to Ofcom until you have received a decision from the BBC.

I had a similar delay when I complained to the BBC about an ME issue. In the end they rejected my complaint and I referred it to Ofcom who also rejected it after another long delay.

However, I think your complaint is strong and you should pursued it to the end. If the BBC were to publish a correction it would be a significant victory.
 
Robert 1973 said:
However, I think your complaint is strong and you should pursued it to the end. If the BBC were to publish a correction it would be a significant victory.
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And even if they don't publish a correction, another strong complaint re their ME coverage to deal with will be another drop in the bucket to - eventually - make them take notice.
But only pursue the matter if you have the energy to do so @Sly Saint.
 
Sly Saint said:
I complained to the BBC about this report on 17th Dec 2018.
Received first reply 25th December giving me complaint reference number.
Subsequent email from BBC 13th Jan:
"
We are contacting you to apologise that we’ve not been able to reply to your complaint within the time period we aim for. We manage this for most complaints but regret it’s not always possible to achieve.

If you wish to refer this delay and the substance of your complaint to the BBC’s regulator Ofcom, you can do so online at https://www.ofcom.org.uk/tv-radio-and-on-demand/how-to-report-a-complaint/bbc-tv-channel-radio-station-bbciplayer or by post to: Ofcom, Riverside House, 2a Southwark Bridge Road, London SE1 9HA. Please include for Ofcom your latest correspondence from and to the BBC and any BBC case reference numbers which you have been given".

Not had any further email.

(nb the time they aim for is 10 days).
What should I do now? Is it worth pursuing?
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Finally got a response to this;
Thank you for getting in touch about our article about chronic fatigue syndrome (https://www.bbc.co.uk/news/health-46570494).

You appear never to have received a response to your complaint, submitted in December, and we’d like to apologise for the long and regrettable delay in responding.

To hopefully address it now, the line in question refers to the researcher behind the treatment who is quoted in the story, and who defends the treatment.

It's important to note that GET treatment is still part of the recommended treatments by NICE and the NHS, although it is under review.

The wording of the story has since been updated from the original story to make this clear and we’ve also since amended this line to say that “others have defended the treatment,” so as not to make it seem as if it was defended during the debate.

Thank you once again for getting in touch.

Best wishes,

Sean Moss

BBC News website

http://www.bbc.co.uk/complaints/
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this is the change they have made:
In June, Scottish National Party MP Carol Monaghan led an emotional Westminster Hall debate into a common treatment, graded exercise therapy (Get), which is available on the NHS. She argued it was often damaging and in need of revision. Others have defended the treatment.
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bit late and too subtle if you ask me.........
 
I followed this up and have finally had a reply

Thank you for getting in touch again about our article about chronic fatigue syndrome (https://www.bbc.co.uk/news/health-46570494).

You should have received a response by mid-May, at the latest, and I’m sorry that it has taken longer to write back to you.

Having reviewed the article again, I can also see that it was not updated in the way I previously advised, for which I’d also like to offer my apologies.

While I did amend a line in the penultimate paragraph to say that “others have defended the treatment,” so as not to make it seem as if it was defended during the debate, the final paragraph has remained unchanged from the time you complained:

The health watchdog, NICE, is currently updating its guidelines for treatment of CFS in England, but publication is not due until 2020.

We believe this presents the issue in context, but equally it was important to mention to views of those who defend the treatment, including the researcher quoted in the piece.

While I appreciate that you believe the article should have included more background information on the PACE trial, it was of course focused on this particular study from King's College.

In closing, our internal guidance on corrections says one should be added if the sense of a piece is altered and we don’t believe that’s the case with the one amendment we’ve made.

If you remain dissatisfied you can contact the BBC’s Executive Complaints Unit (ECU) explaining why you believe there may have been a potential breach of standards or other potentially significant issue to investigate further. For full details of our complaints process you can visit http://www.bbc.co.uk/complaints/handle-complaint/.

If you wish to contact the ECU please write to it within 20 working days of receiving this reply. You can email ecu@bbc.co.uk or write to: Executive Complaints Unit, BBC, Broadcast Centre, London W12 7TQ. Please include the case reference number which you have been given.

Best wishes,

Sean Moss
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missing the point again but hey ho.
 
I actually didn't say that they should have mentioned the PACE trial (in this article), I was referring/pointing to a previous article they did about the PACE trial and how that was also biased, and gave Michael Sharpe the last word.

I haven't got the energy to keep going with this but this

"We believe this presents the issue in context, but equally it was important to mention to views of those who defend the treatment, including the researcher quoted in the piece."

really bugs me.

So does Carmine Pariante 'defend the treatment' ie CBT/GET ?

As far as I can see, reading the article again, it does not say who these 'others' who defend the treatment are, although we can guess with a degree of certainty.

So although they say this is not what the article was about........the usual suspects still in effect get the last word, allbeit anonymously.

This was my point.
 
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Interferon-alpha-induced depression: Comparisons between early- and late-onset subgroups and with patients with major depressive disorder
Carmine Pariante 2019
Highlights
•
This is the largest study to examine interferon-induced psychopathology at different onset stages and with major depression (MDD).

•
Compared to MDD, IFN-induced depression was associated with more somatic symptoms and fewer symptoms of mood, anxiety and negative cognition.

•
More somatic symptoms were also found in those who became clinically depressed at early stage of IFN-alpha therapy.
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Patients were evaluated assessed bi-weekly for 24 weeks of IFN-alpha therapy. At each assessment, patients were assessed with ...the self-reported Neurotoxicity Rating Scale (NRS) (Valentine et al., 1995) and the Chalder Fatigue Questionnaire (Chalder et al., 1993) for other neuropsychiatric symptoms.
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The Chalder Fatigue Questionnaire (CFQ) has been developed and widely used both to measure the severity of fatigue and as an aid for assessing patients with Chronic Fatigue Syndrome (Chalder et al., 1993). The CFQ was translated into Traditional Chinese by the author, KP-Su, together with an American born Taiwanese nutritionist who is fluent in Chinese and English. The preliminary Traditional Chinese translation was then back-translated by the other two bilingual Taiwanese psychiatrists who are fluent in Chinese and English. Both of them were bicultural experts and were not given any information about the CFQ. The back-translation was then discussed and reviewed by all researchers. We repeated the translation and back-translation procedures until agreement between the English and Traditional Chinese versions was obtained.
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It has been proposed that the somatic symptoms might be “the outward manifestation of sensitization of the brain cytokine system that is normally activated in response to activation of the innate immune system and mediates the subjective, behavioural and physiological components of sickness (Dantzer, 2005).” Indeed, somatic symptoms in patients with or without depression are similar to the symptoms of “sickness behavior” induced by acute cytokine administration (Chang et al., 2017, Su, 2008, Su, 2009, Su, 2012), and may be underpinned by different biological mechanisms compared with more psychological and cognitive symptoms of depression.
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Conflict of interest

Prof. Pariante has received research funding from Johnson & Johnson as part of a program of research on depression and inflammation, and research funding from the Medical Research Council (UK) and the Welcome Trust for research on depression and inflammation as part of two large consortia that also include Johnson & Johnson, GSK and Lundbeck.
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full paper here
https://www.sciencedirect.com/science/article/pii/S0889159119300352?dgcid=coauthor
 
Sly Saint said:
Interferon-alpha-induced depression: Comparisons between early- and late-onset subgroups and with patients with major depressive disorder
Carmine Pariante 2019







full paper here
https://www.sciencedirect.com/science/article/pii/S0889159119300352?dgcid=coauthor
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Weird admission about the CFQ. It is neither a valid nor a standard tool for anything but this is an implicit admission that it is built for depressive symptoms. Whatever it's not really a valid tool for anything so I don't see the point of this study. Maybe just trying to give CFQ some credibility but instead all it does is make this study entirely useless.

And the circlejerk jerks on.

Although I would definitely like to see serious studies of the physiological nature of depression. I don't buy that it has anything to do with mood, thoughts or beliefs. Far too many perfectly happy people developed depression without facing any hardship so that doesn't make any sense. In a perverse way this is the right approach, though at least use serious tools for that, it will likely show that depression is mostly related to the immune system.

Maybe if competent people tried that instead. Not impressed by Pariante and his choices.
 
strategist said:
Acknowledgements:



Conflicts of interest:
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Noticed Japanese drug company Astellas gets a mention in your post.

I picked up elsewhere that they are funding Dr. Systrom to test the drug Bocidelparis.
 
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