I can understand that you have this impression working within the ME/CFS research community but that community is isolated both from the medical research community in general and from the clinical profession. We need to change that and we are making amazing progress with the help of WE&ME but it remains the way things are.
For almost all doctors, like me "ME" is a name for a putative disease that never existed. It is seen as used by patients to give themselves a label for non-specific ill health.
For a small number of doctors ME means a mysterious viral or immune illness that can be treated with antivirals or IVIG etc.
I don't know of any physicians who would use the term ME to mean ME/CFS, or even assume that someone else's use menat that. There are probably more GPs on board with the ME folklore but ironically most of them bundle that in with touchy-feely BPS ideas.
Within the research community we know that there are still people who assume that ME involves neuroinflammation. They may use ME interchangeably with ME/CFS but their conept of ME/CFS is not ours.
CFS is generally used to mean ME/CFS, so in that respect is probably less problematic. Sharpe and White had this claim that there was a broader category of chronic fatigue defined by Oxford criteria. Julia Newton advocated a view of a generic state of chronic fatigue (on the bio side). But I think most doctors recognise that the major disability lies in a population who nearly all fall under what we call ME/CFS.
Complex can mean anything but to physicians means with a psychological overlay. It is too ironic. Everyone knows that in this context it is being used as a PR slogan - met either with enthusiasm or scepticism. Nobody ever called RA a complex disease. The disease may be neuroimmune but we don't actually know in what way. Saying it is neuroimmune implies we know something about that and again it is used as a PR slogan. I suspect that most people who use it assume that there is neuroinflammation. We even. have strings of 'eminent' scientists (prone to using X) stringing together to write reviews that assume neuroinflammation. Millions of dollars are wasted on measuring meaningless variables. Good neuroendocrine research from 30 years ago is completely forgotten.
chillier said:
My main query here is: how sure are you that the disease is not taken seriously specifically because of issues around its name?
Slam-dunk certain. I see colleagues faces shift, all the time.
My bolding on your last comment.
Most patients have no clue about any of this stuff (I didn't realise much of it until you just pointed it out), because the conversations that we have with doctors are not frank and honest.
When a PwME says, 'I've got myalgic encephalomyeltis and it's a neuroimmune disease, according to the WHO' - which I have done, back in the day, hoping, as you say, to be taken seriously with a more sciencey-sounding name than 'CFS' - the doctor doesn't say, 'ME is a false construct and there's no good evidence that what you have is neuroimmune, because we don't take WHO classifications seriously. In fact, now that you've said this, I think it's an indication that this is all in your head.'
I understand why they don't say that but if they did, maybe we'd have been able to move forward, because it would be the start of the frank discussion needed. But because they don't, patients never get any clear feedback that would lead them to change their thinking and help them out of the maze.
Somebody needs to tell patients clearly what doctors think when they heard these things, and explain why all the stuff that patients are being told by the charities and the advocates is wrong.
Would you be willing to write an easy-to-read short article for patients about this, to be widely spread online?
Or can you see another way to cut through?
It's so exhausting, and frankly dangerous, for us to go into every medical appointment with no clue about what doctors think about us, and no way of knowing how they're interpreting what we're saying.
