There is a common argument repeated by the psycho-babble community in the UK, that if ME/CFS people protest, then patients will get less as they 'scare off' researchers. This was recently repeated (again) in the Guardian newspaper - who's author of the article 'The Trouble with ME' claimed that Annette Whittemore 'had' been excited about XMRV and researchers around the globe 'had' been interested as much as her. A somewhat strange statement when XMRV research is only increasing, not decreasing.
Lets consider then, for one second - the concept of surrending to people who never got you off a desert island, and this if fine and dandy. So we should not 'call out' the bad guys on this premise, because doing so, is (apparently) going to waste our big chance to get funding.
There is however one problem with this.
There is no evidence in the history of medicine, that patients protesting steers research negatively in any way whatsoever.
Indeed,one would argue (logically) the more people protest, the faster things happen as people are heard, seen, and listened to.
The behaviour of 'gays' with HIV or the behaviour of challenging autistics, or the behaviour of 'us' is irrelevent.
We do not sit down at meetings, and tick boxes. We just (sadly) watch people not tick boxes.
The ME CFS community is impeccably behaved. We are, ironically for us, far too ill to protest, to march on the streets, and to my knowledge no ME CFS patient has ever attacked (even with a cream pie) a psychiatrist over the multiple decades this illness has run. That is a very good record of behaviour in my book. Compare the compliance of ME CFS patient to endless shootings and arson attacks (for example) in the USA over something like views on abortion. Or if talking disease, how about hemophiliacs who were infected with HIV in Canada. Did they remain silent for fear of reducing funding? No, as HIV was killing them.
XMRV is killing people also, just very slowly.
Research is enabled by grants (funding) and funding is not dependent upon if patients are 'nice' or well behaved, or if patients chose to expose malignant scientists who, genuinely, continue to contribute (unecessarily) to the suffering of their patients. This - is what is classed as psychobabble theorists as bad behaviour. In otherwords, exposing them!
Governments control the flow of money, ultimately.
So far our collective governments have given us zero, zip, nothing, be it in the early days of ME CFS in the 1980's or the internet enabled 'online' age of 2010
All decades that have passed with this disease as 'real' have produced the same response of no help for research, and hence patients protesting is perfectly normal and expected after potentially millions of people dying (globally) over the last 30 years.
If one didn't verbalise one's desperation - who would benefit? Patients, or those who constrain and strangle bio-medical research funding to a premature death?
It's far too late in the day (in my view) to expect people to sit down (en mass - not regarding this forum obviously) and remain docile when living a life of disablity levels (even in children) equal to other severely restricting diseases that are fully established and helped. Some ME patients have a quality of life, equal to those dying of late state AIDS. Should these patients also 'tow the line' and not demand help now? Psychobabble theorists have never been in these patients procarious position.
One only creates change, by making change happen. Things happen, by people selling the same menu, then realising there are no customers. If one says nothing about leaving - then the chef cooks the food, presuming all the customers are still seated in the restaurant. And so change never happens.
Who benefits from drastic change not occuring, and who suffers the consequences? We all know.
.
