Some random observations about EC appearance on BBC radio:
First time I've heard her speak. Very energetic individual. Sounds full of herself and deeply unpleasant. I would be terrified if I had to work with her or if she were my doctor. High verbal fluency gives the illusion of mastery of a subject and overall competency. Many subpar individuals mask their lack of skill in this way whereas many highly intelligent people are often quite hesitant or measured when they speak which makes them sound less impressive than you'd expect. Uninformed listeners (i.e. everyone but us here on PR) listening to this broadcast will have no doubt been impressed by someone rattling off 'facts' at 100 miles an hour. Utterly exhausting to listen to.
She is really quite typical of medical school graduates these days: not very bright, high energy, great at memorising what the masters said/wrote but zero insight/creativity/originality. This combination of factors is a huge problem when these clinicians try to become medical researchers. They think they are better than career scientists because of their MD degree but they know squat about science and they're super arrogant and condescending and great at hoovering up research funds for their shitty work. I've worked with many MDs of her calibre trying to play researcher and it was an absolute nightmare dealing with these people.
All in all, she is a persuasive speaker/advocate for her cause but fortunately for us she's nowhere near as sophisticated as the likes of SW and PDW so the psychosomatic stuff coming out of the UK should be easier to challenge now that the brighter people who are better at manipulation are nearing or entering retirement and they're passing the baton to towering intellects like Crawley and Chalder.
Her comments re: recovery reanalysis were incoherent. Word salad. I couldn't make heads or tails of what she was trying to say. Perhaps that was the intention, to obfuscate? I'm sure it sounded very convincing and authoritative to uninformed listeners.
The reanalysis didn't look at 'lots of ways you could define recovery', it simply followed the already fairly lenient recovery thresholds the PACE authors set out for themselves in the trial protocol. Those thresholds were already below healthy population norms, e.g. a score of 85 on the SF-36 was enough for recovery in PACE protocol, whereas healthy working age adults tend to score 100. So, the authors of the reanalysis didn't define recovery in some insanely strict way to get the results they wanted.
She has asked teenagers what recovery means to them and she found that everyone had their own definition. Here's a proposal, why don't we just ask teenagers to also define clinical endpoints in cancer drug trials? No? Dumb idea? Oh ok then, how about we just define recovery as you would define it in a standard dictionary meaning of the word, like being disease free and returned to premorbid level of functioning.
Patients in her clinic all sleep too much. She used the word 'always'. What advice does the venerable Professor Crawley have for the likes of many here who can't sleep to save their lives? Or people like me who 95% of the time have zero hypersomnia or insomnia and sleep 7-9 hours each night, during normal person hours? Why do we still wake up feeling worse than when we went to bed?
This illness is not caused by poor sleep. We've seen over and over again uninformed people entering this field and doing trials of sleep drugs (including a recent CMRC effort) only to discover that the patient's functioning does not improve at all if you make him/her sleep more/better with drugs. Poor sleep is a symptom of the illness not the cause!
GET in her clinic usually involves telling patients to do LESS activity. Who the heck are these alleged CFS teenagers who are too disabled to go to school but still playing football and going to ballet? Unreal. Hypersomnia and enjoyment of pleasurable activities while struggling to cope with regular stuff, man, those are the defining features of atypical depression. I don't suppose she owns a copy of the DSM? No wonder sleep deprivation works for these patients, it's one of the most acutely effective treatments for depression.
GET has now truly morphed into something totally unrecognisable from those early 1990s damaging programmes where patients were made to increase their activity levels each week no matter what. I guess they quietly learned their lesson from all the permanent & severe disabilities they've created and now GET seems to consist of a mishmash of CBT, advice to do less (i.e. pacing) and random life advice thrown in like sleep hygiene? Good lord.
She reiterated several times that she has been trying to get a large study off the ground for years, clearly referring to MEGA. It is crystal clear that MEGA is her brainchild and all this nonsense about biomed investigators and -omics is just there to bamboozle the patients and our obsequious charities into supporting a project where 12,000 fatigued people will be filling out somatization questionnaires. In the end there will be no money to recruit the severe housebound people and the -omics will probably done on some trivially small samples. I urge everyone very strongly to oppose this study and destroy it before it gets off the ground or else we'll find ourselves in the 2020s dealing with the same sort of damage and mess we're dealing with right now re: PACE.
