David Tuller On Exposing the Bad Science Behind the Biopsychosocial Effort to Define ME/CFS (Cort Johnson, HealthRising)

[MSEsperanza]

David Tuller is a unique figure in the ME/CFS universe. A reporter and editor for the San Francisco Chronicle, Salon and writer for the New York Times, the policy journal Health Affairs and other publications. Tuller became outraged at the long history of neglect and abuse directed toward ME/CFS.

His publications date back to 2011, when he published the long exposé “Chronic Fatigue Syndrome and the CDC: A Long, Tangled Tale” on the history of the CDC’s CFS program under Dr. Bill Reeves.

It was the largest (n=640) and most expensive ($8 million) clinical trial ever attempted in chronic fatigue syndrome (ME/CFS), that really got Tuller rolling.

https://www.healthrising.org/blog/2...cience-biopsycosocial-chronic-fatigue-me-cfs/

 

[Hutan]

That's a nice piece on David Tuller; a good introduction for people not very aware of what he has been doing, or indeed not knowing much about the PACE trial.

@dave30th

@RoseE - maybe useful for the preparation for David's visit to NZ?

 

[Sean]

Thank you, Cort.

 

[Sly Saint]

" In Australia, patients, clinicians, researchers all say “chronic fatigue” to mean ME, as used by people in the UK. When I was there, at first I corrected people, and then I just gave up. When I gave talks, I would say that you can’t blame others for conflating the illness and the symptom of chronic fatigue if you’re going around calling it “chronic fatigue.” And people would nod and say yes, yes, and then they’d refer again to “chronic fatigue.”

something that many people (outside Australia) have noticed and that maybe advocates in Oz should try and remedy(?)
@MyalgicE
@Simone

 

[oldtimer]

There's more hope of calling it chronfag - or chronny for short

 

[MSEsperanza]

I would like to see a similiar piece, perhaps with shorter questions, in the New York Times or the Guardian.

 

[MyalgicE]

Absolutely @Sly Saint! You’ll notice that is true from watching the Emerge conference talks recently.

It’s perpetuated by patient organisations too.

I can’t tell you how infuriating it was when my local paper wrote about me (where I never uttered the words ‘chronic fatigue’ even followed by the word ‘syndrome’) and instead of getting quotes from the scientists I recommended, he went to the local MECFS society and they repeatedly used ‘chronic fatigue’ so that was the phrase that appeared as the big headline above my photo on page 3 of the paper.

I rang to discuss it with the MECFS society and the local president said she was “delighted with the coverage” and saw no problem.

For all our meetings, ME Australia are always consistently very clear on language and on definition, explaining ME is a defined disease; fewer than third of Australians diagnosed with chronic fatigue syndrome meet the criteria for ME according to a study by Griffith University; many go undiagnosed for decades; and the Australian CFS guidelines are extremely unhelpful, make harmful recommendations and have contributed greatly to misdiagnosis.

The Australian CFS guidelines describe it being on the ‘continuum of fatigue, giving the false impression that a specific clinical “entity” has been delineated’.
https://meaustralia.net/2018/11/30/...n-chronic-fatigue-syndrome-guidelines-and-me/

We do our best but the Australian CFS guidelines are pretty much equivalent to ‘chronic fatigue’ so it’s unhelpful when ME is equated with Australian CFS.

Another pet hate “condition” instead of “disease”.

 

[Simone]

something that many people (outside Australia) have noticed and that maybe advocates in Oz should try and remedy(?)
@MyalgicE
@Simone

It is a problem here. We’ve been working on educating people not to use “chronic fatigue” as a name of the illness, and have emphasised that it is a symptom, just one of many, and not the primary one. Sadly, even some of our best clinicians use the phrase, and some patients too. It’s hard going to get them to really understand the cost of doing so, but we’ve been plugging away at it!

 

[Sly Saint]

It is a problem here. We’ve been working on educating people not to use “chronic fatigue” as a name of the illness, and have emphasised that it is a symptom, just one of many, and not the primary one. Sadly, even some of our best clinicians use the phrase, and some patients too. It’s hard going to get them to really understand the cost of doing so, but we’ve been plugging away at it!

I appreciate that; the US have only fairly recently started to realise that by using 'chronic fatigue' it in effect puts it and them "in the BPS camp", and although a lot of the researchers in particular don't like ME as a name, by using it (eg ME/CFS) it tends more to identify with the 'biological camp'. Maybe that is an angle that you could use?
"don't want GET and CBT? then ditch 'fatigue' and use M.E".

 

[Dolphin]

“Chronic Fatigue Syndrome” is a long term to have to say repeatedly; I can see why it could get shortened to “chronic fatigue”. I remember Abhijit Chaudhuri doing it also in an interview. Encouraging anyone who wants to use the term to say “CFS” is a way to avoid “chronic fatigue”.