It therefore begs the question why OMF feels compelled to defend the use of the term at this time.
From the news item:
OMF seems to be acknowledging that they have received push-back, that the term is controversial. But, they seem to be doubling down on the term. The word 'complex' is in bold on the OMF home page. Doctors who are members of the forum have confirmed how the word 'complex' is received by many doctors, it plays into the way ME/CFS is seen by BPS proponents. We've told OMF researchers about the impact of that on people with ME/CFS. OMF doesn't just seem to be ignoring that, they seem to be suggesting that people who disagree with them are just overwhelmed and need things explained in very simple terms.
OMF also makes a big deal about how they see ME/CFS as a multi-system disease, and suggests that funding researchers to look at a range of body systems is some ground-breaking approach. The suggestion that ME/CFS research outside of OMF is 'remaining focussed on one system at a time' and that they are the only organisation looking wider, is just not supported by reality. Researchers, some good and some bad, some within the OMF stable and some not, are looking at a wide range of 'systems' and clearly talk to each other, in conferences and elsewhere.
That OMF home page does not work for me, and does not seem to me to be grounded in truth. But, clearly it is what OMF has chosen, and perhaps it is working for them. So I guess each to their own.
From the news item:
I understand that this is a complicated and sometimes controversial topic, so before I get into it, let me acknowledge that complexity and say that we do our best to reflect the voices and experiences of the people we are trying to serve.
While the term multi-system chronic complex disease is perhaps overwhelming at first, each component is relatively straightforward when you break it down.
OMF seems to be acknowledging that they have received push-back, that the term is controversial. But, they seem to be doubling down on the term. The word 'complex' is in bold on the OMF home page. Doctors who are members of the forum have confirmed how the word 'complex' is received by many doctors, it plays into the way ME/CFS is seen by BPS proponents. We've told OMF researchers about the impact of that on people with ME/CFS. OMF doesn't just seem to be ignoring that, they seem to be suggesting that people who disagree with them are just overwhelmed and need things explained in very simple terms.
Complex diseases require open collaboration
ME/CFS and Long COVID disrupt many body systems. Traditional research looks at one system at a time. That approach doesn’t work.
That’s where Open Medicine Foundation (OMF) comes in. OMF brings world-renowned scientists together to study, diagnose, treat, and cure complex diseases.
It’s a bold dream. It’s the path that will get you back to a fulfilling life.
OMF believes multisystem disease should not be a life sentence but a solvable puzzle.
What will happen if research remains focused on one system at a time?
How will your life shrink? How many graduations, birthday parties, or everyday activities will you miss? What will happen with your career?
Something has to change.
OMF also makes a big deal about how they see ME/CFS as a multi-system disease, and suggests that funding researchers to look at a range of body systems is some ground-breaking approach. The suggestion that ME/CFS research outside of OMF is 'remaining focussed on one system at a time' and that they are the only organisation looking wider, is just not supported by reality. Researchers, some good and some bad, some within the OMF stable and some not, are looking at a wide range of 'systems' and clearly talk to each other, in conferences and elsewhere.
That OMF home page does not work for me, and does not seem to me to be grounded in truth. But, clearly it is what OMF has chosen, and perhaps it is working for them. So I guess each to their own.