Martha Gill, a blogger on politics and neurosciences comments:
According to reports, a third of people who think they have ME may actually be suffering from something else – a disease called postural tachycardia syndrome (PoTS). It has the same symptoms – tiredness, dizziness, fainting – but it’s treatable.
Great news for them, but the discovery, I suspect, will also have a rather strange consequence. Those who have suddenly stopped having ME and suddenly started having PoTS will get a lot more sympathy.
Not because the underlying cause is any clearer or more “real” – it’s still extravagantly vague (according to our report this morning, it could be the result of “a viral infection or hormonal changes” – read: anything). But because these patients can be treated.
People with ME have famously received rather short shrift. Back in the 1970s, psychiatrists labelled cases a “mass hysteria”. It wasn’t until 1993 that it was finally accepted as a real condition, but even then, people with the disorder had to struggle to convince their doctors, friends and employers they weren’t simply imagining the whole thing. In an effort to make people take it seriously, the term “chronic fatigue syndrome” (too vague) was changed to “myalgic encephalopathy” – but “yuppie flu” and “shirker syndrome” remained popular alternatives.
The patient lobby has so far concentrated on raising awareness of the realities of the disease – stories of people’s long, hopeless struggles with the condition are all over the internet. They have tried to raise the profile of medical findings around ME, and its association with various, more “valid” diseases: infection with Epstein Barr virus, for example, or Lyme disease. Still the prejudice drags on. But perhaps the patient lobby has been barking up the wrong tree. Perhaps they should have been spreading a message of hope instead – that a cure can’t be too far off.
It’s odd, but sometimes, when bad, unsolvable things happen to people, we start to like them a great deal less. The psychologist Melvin Lerner talked about the “just world hypothesis” – the idea that we hate injustice so much that, if someone seems to be undergoing an unfair punishment, we start inventing crimes to fit it. Especially if we can’t help them escape.
One of his classic demonstrations placed a group of volunteers are behind a screen, from where they can see a woman sitting on a chair, with electrodes fixed to her. They are told she is about to undergo a learning experiment.
The learning experiment turns out to be a little burlesque. The woman (secretly an actress) is asked questions, and when she gets them wrong, she appears to get electrocuted. The volunteers (by now thoroughly alarmed) – see her scream and flail around.
One group is then given the chance to rescue her – and they invariably do. When asked why, they reply that she is innocent, and didn’t deserve the treatment.
A second group of volunteers is not given the chance to rescue her, but are instead told various explanations for her treatment. Some are told she is getting money for her pains, some are told she gets no reward at all. A final group are told she is sacrificing herself in order to save the other volunteers.
Now comes the interesting bit: the less the victim was paid, the worse the volunteers thought of her. Most despised of all was the martyr – she clearly deserved what she got.
Lerner came to a disturbing conclusion: “The sight of an innocent person suffering without possibility of reward or compensation motivated people to devalue the attractiveness of the victim in order to bring about a more appropriate fit between her fate and her character.”
If someone’s story is too bad, and too hopeless, we find it hard to sympathise. It just seems to demand too much. Unfair, perhaps, but that’s just how we’re wired – and those trying to garner attention for worthy causes should know this. Put some hope in there too.
ME, ‘yuppie flu’, and why those with treatable diseases get more sympathy by Martha Gill in the Telegraph online, June 18th, 2014
