David Tuller is an investigative journalist who holds a doctorate in public health. He is a Senior Fellow in Public Health and Journalism at the Centre for Global Health, School of Public Health, University of California, Berkeley, California. David was a reporter and editor at the San Francisco Chronicle for 10 years, is a regular contributor to the New York Times on health issues and has served as health editor at Salon.com.
Over the last 10 years he has devoted increasing amounts of time and effort into exposing the bad science behind the highly influential PACE trial for ME. His writing has also exposed the mishandling of ME by US health authorities.
1) What issues are you covering in your writing at the moment?
There are so many bad new studies coming out all the time! So just trying to keep on top of some of them and comment on that takes a lot of time. And the issue of long-Covid is of course overlapping with ME, so there is a lot of confusion over how they are related. Many of the same GET/CBT proponents are pushing the same for patients with long-Covid based on all their awful ME research.
2) NICE and NHS England have repeatedly refused to withdraw GET/CBT as treatments for ME. This is despite the mounting evidence that such treatments may cause harm/have no benefit for people with ME (pwME). Why do you think they have refused to withdraw these psycho-social treatments for what is a physical illness?
I think people with big reputations have snowed everyone into thinking this science is good when in fact nonsense. I think the entire UK medical-academic-industrial complex has bought into a delusion. It's very much "the emperor has no clothes," and the proponents are too dug in to acknowledge it. I feel strongly that NICE should have withdrawn the previous review, or at least the GET advice, until the new guidance was done--which won't be long now.
3) People in the ME community have suffered from health inequalities for many years. Why do you think that health inequalities for people with ME have been so persistent?
When the medical community doesn't understand something, they tend to attribute it to psychological or psychiatric factors. That attitude filters down to others. Then it becomes a situation where people are told they could get better if only they would do x and y, and if they don't get better, they really don't want to or are getting some sort of secondary benefit from being ill. So people's legitimate concerns get dismissed.
4) Former MP, Dr Ian Gibson, in his book Science, Politics and ME, notes the abject failure of the political/medical establishment to improve the life outcomes for pwME. Their psycho-social approach to the illness has been used to provide cheap inadequate treatments, which in the case of GET, often makes people more ill.
Does the funding for the Decode ME study signify a change in approach by the medical establishment? Or is it merely a concession to the persistent push back from the ME community?
I don't think those two are mutually exclusive. I think it does signal a change in approach or at least a willingness to try something different. And I think the persistent pushback from the ME community was a major fact. I think the amount of money involved is more than would be invested if this were just a throwaway concession to quiet pesky patients.
5) What can public health authorities do to improve the life outcomes of people with ME?
Maybe they could stop listening to Sir Simon and his buddies--Sharpe, Chalder, Crawley, etc--and recognize the "science" they produce as the crap it really is.
6) In November NICE will be holding its public consultation over its ME guidelines. The ME community has had to fight for this consultation. What can pwME do to help make sure this consultation leads to meaningful change?
PwME need to make their voices heard, basing their arguments on the science behind recommendations or the lack of science behind them. I think the case has been effectively made that GET is not based on legitimate science and that PACE-style CBT, based on the false cognitions/deconditioning model, is also not based on legitimate science. PwME need to make a scientific case about the guidelines, whatever they say. And raising voices can work--after all, it was only because of the uproar that NICE reversed its initial decision three years ago to not revise the guidance.
Over the last 10 years he has devoted increasing amounts of time and effort into exposing the bad science behind the highly influential PACE trial for ME. His writing has also exposed the mishandling of ME by US health authorities.
1) What issues are you covering in your writing at the moment?
There are so many bad new studies coming out all the time! So just trying to keep on top of some of them and comment on that takes a lot of time. And the issue of long-Covid is of course overlapping with ME, so there is a lot of confusion over how they are related. Many of the same GET/CBT proponents are pushing the same for patients with long-Covid based on all their awful ME research.
2) NICE and NHS England have repeatedly refused to withdraw GET/CBT as treatments for ME. This is despite the mounting evidence that such treatments may cause harm/have no benefit for people with ME (pwME). Why do you think they have refused to withdraw these psycho-social treatments for what is a physical illness?
I think people with big reputations have snowed everyone into thinking this science is good when in fact nonsense. I think the entire UK medical-academic-industrial complex has bought into a delusion. It's very much "the emperor has no clothes," and the proponents are too dug in to acknowledge it. I feel strongly that NICE should have withdrawn the previous review, or at least the GET advice, until the new guidance was done--which won't be long now.
3) People in the ME community have suffered from health inequalities for many years. Why do you think that health inequalities for people with ME have been so persistent?
When the medical community doesn't understand something, they tend to attribute it to psychological or psychiatric factors. That attitude filters down to others. Then it becomes a situation where people are told they could get better if only they would do x and y, and if they don't get better, they really don't want to or are getting some sort of secondary benefit from being ill. So people's legitimate concerns get dismissed.
4) Former MP, Dr Ian Gibson, in his book Science, Politics and ME, notes the abject failure of the political/medical establishment to improve the life outcomes for pwME. Their psycho-social approach to the illness has been used to provide cheap inadequate treatments, which in the case of GET, often makes people more ill.
Does the funding for the Decode ME study signify a change in approach by the medical establishment? Or is it merely a concession to the persistent push back from the ME community?
I don't think those two are mutually exclusive. I think it does signal a change in approach or at least a willingness to try something different. And I think the persistent pushback from the ME community was a major fact. I think the amount of money involved is more than would be invested if this were just a throwaway concession to quiet pesky patients.
5) What can public health authorities do to improve the life outcomes of people with ME?
Maybe they could stop listening to Sir Simon and his buddies--Sharpe, Chalder, Crawley, etc--and recognize the "science" they produce as the crap it really is.
6) In November NICE will be holding its public consultation over its ME guidelines. The ME community has had to fight for this consultation. What can pwME do to help make sure this consultation leads to meaningful change?
PwME need to make their voices heard, basing their arguments on the science behind recommendations or the lack of science behind them. I think the case has been effectively made that GET is not based on legitimate science and that PACE-style CBT, based on the false cognitions/deconditioning model, is also not based on legitimate science. PwME need to make a scientific case about the guidelines, whatever they say. And raising voices can work--after all, it was only because of the uproar that NICE reversed its initial decision three years ago to not revise the guidance.
