People say much worse all over twitter every day. I interpret that as a justifiably angry patient letting off steam. I'm sure doctors have to deal with worse directly from their patients sometimes. Does that lead those doctors to publicly condemn every patient who suffers from the same condition? Not if they are acting professionally.
I was a maths teacher. Practically every social event I ever went to someone would want to let fly with their grudge against maths teachers in general for ruining their career prospects because they failed maths at school and it was the teachers' fault.
Does that mean I would then publicly condemn everyone who failed maths? Or declare publicly that people who fail maths exams are bad people. No it made me determined to be as helpful and understanding as I could be to my struggling students, and to listen to and sympathise with the people who had a bad experience at school.
Surely the same applies here. Professional people should not take anger from a few to mean everyone who hasn't been lucky enough to recover from post viral symptoms is a weak or a bad person. They should listen to that anger, and try to understand the reasons, and when research is criticised, they should study that research in depth and the critiques before leaping to support their eminent friends.
What is the patient justifiably angry about? Garner attributing his recovery to positive thinking? There are always going to be people recovering who attribute their recovery to all sorts of things. It's worth pointing out the limited value of single stories, but if someone feels the need to start swearing and being nasty to them on social media then that's not close to justified. People say worse on twitter every day, and I'm not arguing that ME patients are some uniquely unpleasant group, but we are in a position of real weakness and facing a skilled and powerful attempt to smear all those raising concerns about work like PACE - having a patient behave like this is only going to make things worse. Sadly, even legitimate and reasonable ways of patients expressing their hurt will often make things worse. We keep seeing that professional people often do not behave as they should, particularly when the interests of they or their friends are threatened.
In this case, things are really different with Garner than someone like White. Garner was being criticised for a blog about his personal experiences (I know that omits some important aspects but I think that description is how most of his colleagues will see it), not for an academic paper that spun results or anything like that. I think that changes the sorts of responses that are okay.
I hadn't been aware of this curse of the maths teachers! I'd never thought of teachers having to endure people endlessly reliving their childhood traumas in social occasions.
Surely if the professionals had taken the correct approach to individual patients who engaged in verbal abuse, by responding in a manner that de-escalates and diffuses potential conflict (as their medical training should have taught them to do), then patients such as the one in this twitter thread would have had the wind taken out of their sails and would have been left with nothing 'to delight in'.
I'm certainly not saying that the PACE lot have behaved well, but it's in their interest to take advantage of any patients behaving badly or anything that can be used to make us seem unreasonable to their colleagues. No-one can look at the state of things around ME/CFS and say that it looks as if professionals can be trusted to be have well.
I disagree,
@Esther12. I think that tweet is fine.
The way I look at this stems from arriving at the 2014 CMRC meeting in Bristol and listening to Peter White give a 15 minute tirade on abusive patients attacking science. I was blown away by the sheer nastiness of the whole thing. The sneering and the disingenuous presentation of rotten data was something I had never seen before. I had seen something a bit like only once before at a rheumatology conference where a medic from the Hammersmith Hospital joked about patients dying. On that occasion uneasiness in the audience was palpable. In Bristol delegates either lapped up White's story or knew how to keep their cool because this was nothing new to them.
PWME have a right to make comments like qua sar. I get this stuff too - being told by Michael Sharpe that I am being disloyal to colleagues - stuff that mate. I am loyal to patients, not colleagues who fiddle their data.
If we didn't have anything to worry about here, and people like White, Wessely, Crawley etc were undermining their own careers with their anti-patient tirades, then why is Wessely on the edge of the House of Lords? Why was Crawley promoted and now doing a new study with Stephenson?
I suppose this patient has a 'right' to send stupid and unpleasant messages to academics on social media but doing so is only going to strengthen the positions of people like Wessely, Crawley, etc.
