(Oxford,UK) Recruiting: A study looking into energy status & MRS in CFS

via https://cfsme-registry.info

[2018-02-23] Energy Status and MRS

 

So what are thoughts?
Initially brain imaging at Oxford with lactate as focus seemed good. Funding by Oxford university, again good. Latest high tech, good.

Concerns -
Psychiatrists
Wasn't Brian Angus a PACE promoter
Why control with bipolar? Unless they just have interest in both conditions.
Why refer to mood symptoms when for patients with CFS it's not a chief concern.

 

But why's it being run by someone whose interest is in mood disorders? And with the lower patient numbers and extra control group, it looks like an attempt to generate a false negative result.

 

Also was going to be part of MEGA. Here's what he said about PACE:

Edited to add: He also co-authored a PACE paper claiming CBT and GET are safe: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4065570/

 

Personally, I'd rather that studies like this did use a depressive disorder as a control group, alongside HCs - provided that they exclude for comorbid depressive disorders in the ME/CFS group.

I'm tempted to sign up. Just need to decide whether I can schlep up to Oxford or not.

 

Definitely going off this.

 

So what if they come up with a result that distinguishes bipolar and ME from healthy controls, but not from each other? Then what spin might they put on that, before further research could dig deeper? Being as bipolar is deemed a mental disorder.

 

I suppose the counter-argument is so what if they do? That would still be progress and I'd be wary of arguing that scientific research shouldn't be undertaken just because it might find an overlap with bipolar.

 

No, I didn't make myself clear. I agree with what you say completely, the truth is what counts. With research of course, the truth unfolds over time, so along the way all you have is partial truths. I was not suggesting to run away from these partial truths, but just pondering what BPS folks might exploit if a partial truth showed a bipolar and ME similarity, without yet knowing what further truths might differentiate them.

 

Funding from Sharpe's department to a previous PACE trial promoter? Sounds bad.

This is what an anonymous spokesperson for Oxford said in the SMC's response the the JHP special issue on PACE:

 

You're right, there are a small coterie of BPS proponents who will always argue that any finding supports their model, by dialling up or down the B, the P or the S depending on circumstances. I suppose the flip side of that (which is why I'm a fan of using depressive disorders as an additional control group wherever possible) is that any identified cytokine/metabolic disturbance can always be counteracted by BPS proponents as 'so, you get immunological/metabolic changes in depression as well'. I might have possibly too optimistic a view, but I welcome as much research as possible unless it's out-and-out psychobabble, potentially harmful to participants, or both - because such research, in time, is in the process of showing the previous claims of the psychology lobby to be based on very dubious premises. (Even the fact that out-and-out 'false illness belief' now has to be cloaked as 'biopsychosocial factors' is a victory of sorts).

 

The problem is that it's relatively easy for quacks to deliberately create and exploit methadological flaws in their own research to "prove" that there is no difference between patients and controls. You use fewer patients, and add more control groups - this paper is doing both. You can also add more comparisons to make, to reduce the statistical significance of results (or not, if corrections are not made). So it will likely end up (by design, rather than in reflection of reality) that ME patients are not physically different to healthy controls and/or bipolar patients.

They don't state criteria, but it will probably be Oxford, based on the symptoms they focus on:

They will make many comparisons, including an unspecified number of "brain chemicals":

Blood tests are optional, but only to correlate to psychological issues:

A lot more focus on mood. This would probably include grossly inappropriate questionnaires such as HADS, where symptoms of biomedical illness are treated as indicative of a mood disorder:

They are trying to avoid meaningful sharing of anonymized data by writing it into the consent forms:

Oxford University is now actively supporting and encouraging poor research practices:

This study is already badly flawed, and they'll just find ways to make it worse as time goes on. It doesn't matter if they get "real" ME patients or not - they have pre-determined the results which they want, they have put methodology in place to ensure that they get those results, and then they will hide the data from the world while insisting we use their research as a basis for policy.

There is no point in engaging with this study, except to protest against the University of Oxford for funding it.

 

Thanks @Valentijn , those are some useful points. I think you're absolutely right on not engaging with a study if it were to use Oxford criteria, and I'd also be wary of the phrase 'bona-fide researchers' w.r.t. information sharing.

As to the bit around whether the immune system 'affects mood', I'm probably less concerned. If ME/CFS were found to be due to the immune system screwing up the brain (e.g. via permeability of the blood-brain barrier) I'd actually have no problem with that - that to me *is* a biomedical illness, would fit with the current WHO classification of a neurological disorder, and IMHO is miles away from 'learned helplessness', 'false illness belief' or just plain malingering. Also, it's arguably harder to hide/manipulate the results on this experiment than it is on a subjective clinical trial.

Still, I toy with participating (subject to the selection criteria and data sharing points above) - better to have me, who meets most/all of the stricter selection criteria and who doesn't have, and has never had, any co-morbid depression in the patient group than only having those with ideopathic chronic fatigue participating.


(Entirely separately: I'm guessing this is why they are using bipolar as an extra control group - https://www.ncbi.nlm.nih.gov/pubmed/23810640)

 

They'll prove what they want to prove regardless. That's the joy of badly flawed methodology - you can eliminate the impact of any unwanted variables, like the actual disease which patients have, and still get the desired outcome.

 

I think we should be wary of using phrases like 'proper ME patients', as if considering participating in an MRI study automatically rules one out from having 'proper ME'.

 

You're quite right, of course. I looked at the study with excitement till I read the 'functional' stuff. I was being unnecessarily flippant.

 

Spoiler: Warning: brief gif with sound

https://www.youtube.com/watch?v=y8Kyi0WNg40

 

The defense of PACE is astounding, why take this 'weird rare disease' of ME and stake the reputations of so many researchers, institutions, and publications on its validity? Why give a quack a knighthood?

There is something here that seems out of proportion, and desperate. Pick another illness, MS, Lupus, Alzheimer's, you name it, can you imagine the same strange history and effort made principally by US and UK medical institutions with such vehemence?

It seems an elephant in the room, obvious, but problematic to bring it up without the claims of being conspiratorial, but then what sort of people call for patients to be ridiculed, to call them terrorists, and so on. They are a strange bunch, whatever their motivations.