Early science is messy and contradictory as hell and can get ugly; scientists, and even some informed laypeople, understand this, and can even see rigorous debate as a good and healthy sign.
When information about the messy goings-on get filtered to the outside world via the press, however, either the mess is made to seem like mistakes, confusion and lack of progress (which we ought not to be wasting money on), or the mess is de-emphasized in favor of tidy “conclusions” that are often supported by privileging the claims of one side in a debate that may have multiple sides. (And if conclusions have been reached, we shouldn’t be wasting money on further investigation.)
We have seen how eagerly and uncritically the Wellcome Trust press release was carbon-copied into dozens of press outlets, blogs, Tweets, and spread around the world unchallenged. Why is this a concern, in the particular area of ME/CFS research?
Because reporting premature conclusions in this matter serves to reinforce an old and very damaging narrative about CFS: that the cause is impossible to find; that repeated efforts to find the cause have all been blind alleys; that ME/CFS is a ‘vague and ill-defined’ illness, with the implication that an organic cause can never be found – and then we’re back in the “hysteria” wastebasket, with the century-old ideas of Charcot and Freud to weigh us down.
Public opinion affects support for research in very real terms; so does the official stance of the public health agencies. We have already seen several decades in which the NIH officially considered ME/CFS to be a form of depression or conversion disorder - based upon no particular hard evidence - and instructed the press to treat it accordingly.
So there were few to protest when ME/CFS research was underfunded, or when funds intended for biological research were diverted elsewhere, or when grant applications for what little money was available were routinely turned down by ‘expert’ panels with no expertise in the disease.
The NIH is showing encouraging signs of changing course in recent years, but we have yet to see the result in terms of hard dollars: is there any other disease as serious and disabling as ME/CFS that recieves so little NIH funding? Read more #1>>
See also CDC: punctate brain lesions in CFS, similar to AIDS are caused by mass hysteria