Severe difficulties with eating in ME/CFS

rvallee said:
That's a description of the problem, but it lacks the fact that those beliefs in the general public explicitly derive from the medical profession, would not even exist otherwise.
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I don't think that is true. Kids at school do not believe their friends with ME/CFS. Parents don't believe their children. Employers don't believe their workers. Because there is nothing to see. In general they have no knowledge of any biopsychosocial theories. Even when I retired as a doctor I had never heard of Wessely, Chalder, Sharpe, White and their theories.
 
Midnattsol said:
You don’t have to know about prominent BPS individuals for the attitudes to have been normalised for example through media headlines.
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I hadn't seen any media headlines on BPS theories then and I am not sure that there are now much. Are there? Most of the headlines I have seen over the years have been about people being terribly disabled and nobody taking notice - whether because of multiple allies or ME or Ehlers-Danlos. The BPS people themselves would never put out press releases saying it is all in the mind. Their approach has always been much more doublespeak.

The other rheumatic diseases with nothing to see share the problem of people with ME/CFS. Lupus patients often complain of not being believed.
 
Jonathan Edwards said:
I hadn't seen any media headlines on BPS theories then and I am not sure that there are now much. Are there? Most of the headlines I have seen over the years have been about people being terribly disabled and nobody taking notice - whether because of multiple allies or ME or Ehlers-Danlos. The BPS people themselves would never put out press releases saying it is all in the mind. Their approach has always been much more doublespeak.

The other rheumatic diseases with nothing to see share the problem of people with ME/CFS. Lupus patients often complain of not being believed.
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The past still influences the present. It's years ago Norwegian ME patients were attacked in the media for having pressured the Research Council of Norway into not providing funds for a BPS study at the University of Oslo, by a doctor in charge of one of the units at the university hospital associated with the study. The Council denied the accusation days later, but funnily enough it is the attack that is cited, repeatedly, years later as a way to show the damage ME patients pose towards academic freedom, freedom of speech, and not least how mean we are to doctors/researchers just wanting to help. The same with the Sharpe interview about being harassed (I think I saw it in a Norwegian comment only a week ago!).

I have met many with invisible illnesses where that complain about not being believed about the seriousness of their illness, not having their symptoms taken seriously etc., I don't meet many others who are met with disbelief that their illness even exists (and when I do, it is sadly often doctors who disbelieve their very real conditions such as meat allergies and lipedema, but that is of course also a function of what type of patient I would be likely to meet).
 
People don’t disbelieve ME/CFS because it’s invisible. They don’t believe what they can see isn’t something else.

What it actually looks like “but you can do it sometimes” or “might just be depression” or “you’re an attention seeker” or “you’ve got lazy” or “you’ll be ok if you just….” Because that’s how everything else works. That’s why BPS is so successful, it taps into that. BPS makes perfect sense to the bystander.


People are also aware of severely unwell patients trapped in bed for years, so they’ve no time for you standing there in front of them saying you have the same thing.
 
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