[thedoc]

I have chronic fatigue syndrome and it took years for me to be diagnosed.  My question is - why has it taken so long for chronic fatigue syndrome to be accepted as an illness?
Asked by Katie


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[thedoc]

We answered this question on the show...



 It’s hard to understand why that is when you see so many people suffering with this, it’s a stigmatising illness.  I think a lot of people don't understand it because they don't necessarily see when the person’s unwell.  So, if you remember I said, it’s a very fluctuating illness.  So people often see their colleagues or their friends on good days, and don't see them on bad days, and that makes it much harder to accept.  But also, we don't have a clear understanding of what causes it and we don't have a medicine to give it, and that sort of vagueness makes it much harder for people to really believe in it.

[nicklasb]

I have another idea: People in general are not to blame. Not in any way. Why? Because they have for years and years gotten really bad information from the medical community.

Instead the reason is that doctors, while claiming to attempt to objectively reason and act based on and scientific principles, have not done so.
Rather, they have done the exact opposite, ridiculing and refusing to see the science evolving. Not only has the illness has been classified as neurological by the WHO for ages, but in 1987 the first article that SHOULD have put the medical community in gear towards curing the illness appeared where it was suggested that people suffering from chronic fatigue syndrome also seem to suffer from functional deficiencies in their immune systems.
And if it only would have been to ignore the official WHO classification and a study, that could be excused. But to ignore the about 170(one-hundred-and-seventy!!!)"studies that have followed that also points to a biological underpinnings is completely inexcusable.

So, no. People in general have basically not done much wrong at all. They have acted on what the medical community have told them for as long as they know: That ME/CFS is either a psychological condition or that the patient is a lazy bastard. The medical community have made them almost impossible to convince otherwise, so they can't be expected to change their mind about such an illogical illness overnight.

I know this, because I thought so myself before someone very dear to me got ill. And while I still feel awful about the things I said and did, I thought I acted in her best interest. But instead, of course, I made her much worse and basically ruined our relationship.

In Norway, the assistant director of the health directorate has gone out with an apology to ME/CFS-patients. So far, no such thing has been heard from the medical community.
Possibly because most of them still thinks that it is not a real disease and still say this to patients and their loved ones.

[cheryl j]

Anything they can't test for or identify a cause gets relegated to the nuts category for a while until they eventually do find a physiological reason. This seems especially true when the symptoms are either behavioral or subjective, like pain.  From the ancient times when they thought epilepsy was possession by demons, to modern times when they said schizophrenia was the result of bad mothering, that's been pretty much the pattern. But it isn't just chronic fatigue, I've had doctors tell me some symptom was  just stress until it got worse and something showed on a test. It seems to be a default category.