Trial By Error: Stupid Studies

[MSEsperanza]

How I look forward to reading a Tuller piece on "Sound Studies on ME" some day.

(Edit: This is not meant as criticism. I understand the need to criticize the many bad studies--it's just a certain kind of longing...)

 

[JohnTheJack]

Well the straightforward answer to who funded Chalder et al for this paper is

Page 15 of https://sci-hub.se/https://www.tandfonline.com/doi/full/10.1080/08870446.2019.1579331

Yes, and this is a bit more on the funding.

https://www.nihr.ac.uk/about-us/how...nfrastructure/biomedical-research-centres.htm

And the SLAM one here.

https://www.maudsleybrc.nihr.ac.uk/

 

[Forbin]

I wonder if EMA (Elevator-Monopoly-Adele therapy), or something like it, would be a useful control in some of these studies, particularly in children. The idea being to compare the response to a nonsensical intervention to the proposed intervention. Quite possibly, both would give equivalent results. Then you'd have to choose between two alternatives: that EMA therapy actually works, or that patients tend to endorse any intervention they participate in, so long as it seems minimally plausible.

In 1987, Dr. Steven Straus of the NIH said that, "[CFS] patients will commonly feel better - no matter what you give them," implying that the illness is imagined. But that statement can also apply to many people with physical illnesses. It's called "faith healing" and patients with all sorts of indisputable illnesses may "commonly feel better," after receiving it. However, that doesn't mean that there's been any improvement in their underlying disease.

I guess I'm just suggesting that maybe there should be a "faith healing" control on some of these studies.

 

[Esther12]

I wondered if the 'stupid studies' title could be unhelpful for reaching out to the persuadable middle when I first saw it, but at the same time, that such a short blog could so easily pick apart two studies is ridiculous. Is there value in trying to be polite about these things? If so it's a real burden.

 

[Esther12]

Given the amount of press coverage the “mindfulness-based cognitive behavioural intervention program for CFS/ME” study got one could argue that it really warrants a 10,000 word thorough take down. But at the same time, who would want to do that post-PACE?

This is why we keep needing a steady flow of new advocates/critics looking to sharpen their teeth on the latest round of BS. I remember advocates from the 90s arguing that people were spending too much time criticising PACE when it's really just more of the same and nothing new was being added. At some point hopefully the cycle will stop repeating!

 

[dave30th]

I wondered if the 'stupid studies' title could be unhelpful for reaching out to the persuadable middle when I first saw it, but at the same time, that such a short blog could so easily pick apart two studies is ridiculous. Is there value in trying to be polite about these things? If so it's a real burden.

I thought about the title precisely for the reason you mention. And then I thought, screw it. They're stupid studies.

 

[rvallee]

I wondered if the 'stupid studies' title could be unhelpful for reaching out to the persuadable middle when I first saw it, but at the same time, that such a short blog could so easily pick apart two studies is ridiculous. Is there value in trying to be polite about these things? If so it's a real burden.

It's a spade. Spade's the name. Jumping on STOP mats is stupid. Commenting on your feelings while watching yourself on video walking with a shopping bag is bloody stupid. They claim that they can divine our own experience in complete contradiction to what we say it is. It's all damn stupid.

Most people already hate us, might as well say the truth. It will matter in the end.

 

[Jonathan Edwards]

I guess I'm just suggesting that maybe there should be a "faith healing" control on some of these studies.

This is exactly right. Trials need controls with identical belief commitment in both therapist and patient. I have pondered this before thirty years ago for physiotherapy. The problem is that a sham is always a sham. The role playing shifts. What may be needed is to compare two or more 'real' therapies in trials where neither the therapist nor the patient knows they are in a trial. That is currently illegal for ethical reasons. But what we end up having is exactly this but called service evaluation - which you can bias however you like because everything is post hoc.

 

[Esther12]

Most people already hate us, might as well say the truth.

Still worth trying to get as few people to hate us as possible while informing them of the truth!

 

[TiredSam]

This is exactly right. Trials need controls with identical belief commitment in both therapist and patient. I have pondered this before thirty years ago for physiotherapy. The problem is that a sham is always a sham. The role playing shifts.

Couldn't they hire a faith healer or homeopath for the sham control? That way the therapist would bring the necessary belief commitment. You could match them with "open minded" patients who thought it might work.

 

[TiredSam]

Still worth trying to get as few people to hate us as possible while informing them of the truth!

Someone had this as their avatar at the last place, I always liked it:

 

[Forbin]

I should add to my comment above, that Dr. Straus' statement that, in his experience, CFS "patients will commonly feel better - no matter what you give them," appears to have been based entirely on his one trial involving acyclovir and a placebo in the late 1980's. The trial only had 27 participants, three of whom had to resign due to acyclovir kidney toxicity.

The phrase "no matter what you give them" might lead one to assume that his statement was based on experiences with a wide variety of interventions, but no.

Acyclovir Treatment of the Chronic Fatigue Syndrome
https://www.nejm.org/doi/full/10.1056/NEJM198812293192602

 

[AR68]

Reminder to anyone who may be able to attend that Prof Chalder is giving a talk on “Medically unexplained symptoms: my clinical and research journey over 30 years” on Wed next week (13th March)

Visiting speaker: Prof Trudie Chalder (King’s College London)

Chair: Prof Patrick Luyten

Location: G12, 1-19 Torrington Place

https://www.eventbrite.co.uk/e/clin...ogy-201819-lecture-series-tickets-48551754605

S4ME thread: https://www.s4me.info/threads/13-march-2019-chalder-‘medically-unexplained-symptoms’-my-clinical-and-research-journey-over-30-years.5576/page-2#post-119314

I am still hoping that @Jonathan Edwards may be persuaded to attend, particularly as it is being hosted by UCL. It would be unfortunate if nobody were to ask Prof Chalder any challenging questions.

[Edit – date corrected]

https://www.dropbox.com/s/yhg3rqar20rt7ga/TC130319.m4a?dl=0