In progress: A systematic review & meta analysis of the incidence of, and risk markers for, [CFS] and [ME] in population studies, 2020, White

Full title: A systematic review and meta analysis of the incidence of, and risk markers for, chronic fatigue syndrome and myalgic encephalomyelitis in population studies of adults
Authors: White and Creed

https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=183743

 

Acknowledgement to Mary Dimmock for spotting this
https://twitter.com/user/status/1267511988353187841

 

Thanks for posting. Just saw this. WTF? Looks like a nightmare in the making. Or maybe I am just too cynical?

Questions
"1. What is the incidence of chronic fatigue syndrome in population based cohorts of adults?
2. What are the risk markers for chronic fatigue syndrome in population based cohorts of adults?
3. What are the risk markers for chronic fatigue syndrome following corroborated infections?"

Studies included for first two reviews if
a) a population-based cohort was studied prospectively
b) dx recorded on medical register or by self report or according to a dx criteria - and a dx of CFS-like is okay
c) CFS not preonset but fatigue preonset okay
d) case control okay if prospective data collection before dx

Condition being studied

"Chronic fatigue syndrome, myalgic encephalomyelitis and synonyms. For the purposes of this form, we will refer to CFS as an umbrella term for all these diagnostic labels"​

Labels include "fatigue syndrome, chronic", “Chronic fatigue disorder*”, “fatigue syndrome”, “post viral fatigue*” , “postviral fatigue*”, “postinfectious fatigue*”, “post infectious fatigue*” , “Myalgic Encephal*”, “Royal Free disease”, “chronic fatigue immune dysfunction syndrome”, “chronic Epstein-Barr virus syndrome”, “chronic mononucleosis-like syndrome”, “low natural killer cell syndrome” or “systemic exertion intolerance disease”

Primary outcome
Q1 - a dx of CFS or an accepted synonym for the review of incidence.
Q2 and Q3 - risk markers will include demographic, biological, psychological, and social factors; any measurable factor that is found to increase (or diminish) the risk of developing CFS.
Q3 - In the third review (post-infectious), a diagnosis of CFS will be accepted when recorded six months (or more) after the onset of infection.

Edited to add:
Subgroup analysis
By definition
- definitions include: Holmes et al, 1988, CDC criteria (Fukuda et al, 1994; Reeves et al, 2003), Oxford (Sharpe et al, 1991), Australian criteria (Lloyd et al, 1990), International and Canadian criteria (Carruthers et al, 2003, 2011), myalgic encephalomyelitis (National Taskforce, 1994), post-viral fatigue syndrome (Ho Yen, 1990), epidemiological definition (Osoba et al, 2007), NICE (2007), and systemic exertion intolerance disease (IoM, 2015).

By method of dx - self-report, questionnaire, interviews (with/without medical tests) and diagnoses made by a medical practitioner.

Anticipated completion
Nov 2020

 

I hate these sytematic reviews. They're just so lazy and unnecessary. Why do we need another review?

 

The fruit bowl approach again.
Words fail me .

 

I'd say there's a good/very good chance that Peter White will use his own study from the Lancet. They attempted to measure their fitness after they became ill and made inferences about the pre-illness fitness levels!

I discuss problems with it in these comments:

https://pubpeer.com/publications/FD5485965E9A5214679676CBA269EB

 

Francis Creed (University of Manchester) has edited a book on Medically Unexplained Symptoms with Per Fink

 

Here is a presentation by Francis Creed that has been uploaded onto the dxrevisionwatch website: https://dxrevisionwatch.files.wordpress.com/2010/01/hackettaward-creed.pdf

 

Oof. This is especially bad. Some of the graphics make me think of conspiracy theorists putting random labels and arrows on various concepts and pretending it means something. Seriously you have to look at it to appreciate it in full. It mostly boils down to cheap philosophy over the duality of mind-body. Same as in the early days of psychosomatics, the same nonsense being argued in a loop.

He defines "somatization" as "high number of symptoms" and that's just a special kind of ridiculous. I love that it has a few bits of imaginary quotes from patients that are so clearly made-up, instead reflecting their own personal opinions, it would be hilarious if it wasn't deadly.

I can't go through this, it's 183 pages of mediocrity and circular reasoning. It belongs in a museum of how not to science. He seems to either have a weird fetish for Wessely or Wessely was in the audience that day and he was trying to impress him or something. Weird.

Anyway those are the delusional ramblings of very sick people, which is seriously ironic.

 

They say there will be a subset analysis based on different diagnostic criteria, but they could very well just lump IOM, CCC or ICC with other criteria that do not require PEM.

Here is a nice one too:

And yet:

But it's not like there could be any rating discrepancy on White's papers between White and Creed anyway.

Just quoting from @Hilda Bastian's latest blog post about bias in systematic reviews:

 

Except for the EBV-studies, there probably is no research on risk markers for CFS or ME.

I only know of studies that used longitudinal data from other research (that wasn't interested in CFS and focused on other things). So these studies tend to use some unrelated symptom questionnaires to reconstruct a CFS-like illness or in best case scenario they asked the patients in those longitudinal studies whether they had CFS (usually more than 1% says yes, which indicates this probably is an overestimate).

It is possible that they will find that less activity will lead to a higher chance of developing CFS, partly because a CFS diagnosis often comes after many years of being ill and undiagnosed or because lower activity levels might predispose to other illnesses that might resemble CFS (atypical depression, sleep disorders, obesity etc.) if patients don't get a thorough clinical examination.

 

This wording always frustrates me. Both in the early 2000's and over 10 years later he was a chief medical officer and very likely still is now (I saw someone else describe themselves as a senior medical officer in the same company showing the significance of being a chief medical officer). I don't think he has ever said he is a chief medical officer in any of his conflicts of interest statements.

 

What about this?

I don't quite understand the "onset" criteria in the review for the types of studies to be included but CDC did a population study in the mid 2000s that found childhood trauma increased risk of CFS:

"Individuals with CFS reported significantly higher levels of childhood trauma and psychopathological symptoms than control subjects. Exposure to childhood trauma was associated with a 6-fold increased risk of CFS." (Heim et al, Childhood Trauma and Risk for Chronic Fatigue Syndrome, 2009)

​

 

The highly publicized 2009 Reeves CDC study* used the Childhood Trauma Questionnaire (CTQ). This questionnaire measures severely traumatic childhood events in six categories.

• Physical abuse
• Sexual abuse
• Emotional abuse
• Physical neglect
• Emotional neglect

I've wondered if one possible explanation for patients scoring higher than controls might simply be the deeply personal nature of these questions. One might have to be highly motivated to answer these questions honestly if they applied to oneself. Positive results could simply reflect the fact that people desperate to find a "cause" for a harrowing and unexplained illness are simply more motivated to answer the questions honestly than are controls.


*"Childhood trauma and risk for chronic fatigue syndrome: association with neuroendocrine dysfunction."
http://www.researchgate.net/publica...e_Association_with_Neuroendocrine_Dysfunction

 

Questionnaire self-reported childhood trauma is unreliable. I can't recall the details but I think in one study of depression it was found to not correlate with recorded events and (in another study?) the association (nearly?) disappeared when socioeconomic factors were controlled for. That suggests the possibility that childhood trauma is first of all overestimated due to unreliable methodology, and second not an important cause of chronic health problems later in life (rather, growing up in poverty and deprivation will "cause" both childhood trauma and later health problems).

What I think is happening that being in a poor mood makes past problems seem much worse than they were and people are possibly biased towards this interpretation because it has been repeatedly suggested to them by society that childhood trauma is the cause of their problems.

 

Yes, participation biases, a desire to please the investigators, and the fact that this is not an unheard of explanation can lead to an exaggeration of questionnaire reports.