Discussion in 'General ME/CFS News' started by Andy, Feb 13, 2019.
So depressing that the PACE appologists continue to refuse to attempt to answer these questions after so many years, but also that so many of the British medical establishment, the medical journals and the press protect their obfuscation.
Follow the money. There's a lot of it. Like, billions of it. Billions and billions.
Really good @dave30th. I only became aware of what was going on around Aug 2016, so this was well before then. Most of the questions are things I've now gained awareness of along the way, though a couple are new.
I think republication of those immensely salient questions are a very good move at this time, where awareness is gaining ground with people who had no real inkling back in 2015, politicians especially. If not done so already, then I especially thing Carol Monaghan should see this, though I imagine she already is aware.
I am a modestly-qualified engineer, not a scientist, and most of the issues raised would have originally passed me by without others having made me aware of them; it's terribly easy to take things on trust from those you believe you can trust, unless you have cause to dig deeper. There will be many others at this time, in the same position I was two and a half years ago, so I think this blog post is a really important, very timely summary of all the key failings with not just PACE itself, but also the PACE authors' ineptitude at standing by their claims; claims that continue to seriously and adversely influence the lives of so many people, who deserve so very much better. The blog also makes tacitly clear, simply by having to be republished several years down the line, how intransigent the authors are in their unwavering dogma. I think it would be good for this blog post to be given a wide circulation.
I so much want my wife to have the chance of returning to the life she once had, and for us in approaching retirement to go walking the countryside and the hills again, before we get too old to do it anyway. And if not that, at least for the illness to be properly recognised for what it is, especially by the medical profession. And as I say this I am so very aware there are so very many people so much worse off, and my heart goes out to them. I am by nature very easy-going, but I have to say I feel very bitter about the PACE authors, and the related BPS clique, who have so severely f*cked up the lives of so very many good people ... and continue to do so! How dare they call themselves scientists.
Your work is invaluable David, and is immensely appreciated by so many (and somewhat unappreciated by a few ) ... feels like a Churchillian paraphrase bubbling under there.
wow, seems you have a new fan:
Dr E Goudsmit 13 February 2019, 11:35 am
Like this. Especially point 20. New one on me."
Dunno about that she was moaning about him “insulting her again” on Facebook yesterday
She seemed very much in a willy waving frame of mind in that Facebook thread.
Yes I spotted she was trying a bit of “eminence” on you
And she totally missed that I pointed out a significant overlap in our qualifications and that I may have comparable hands on experience in evaluating behavioural interventions in biomedical conditions to her.
But I have only myself to blame, as I failed to learn from previous experiences of responding to her more contentious comments.
A shame that ME seems to have more than its fair share of people that potentially have so much to offer, but struggle to see any view point but their own. I suspect what she regarded as David's 'insults' boiled down to that he disagreed with what she said.
November 14, 2016
An Open Letter to Dr. Simon Wessely, Defender of the PACE Study
eta: over 2 years later....... still no answers
Taking on a lawyer now.
I expect Wessely to ignore this letter and move on to audiences he can actually bully. I hope i'm wrong
And still every bit as true. The big difference now is the audience, which includes many more influential people than it did 2+ years back. And Steven Lubet's writing is extremely lucid and educational. Well worth redistributing to all likely interested parties, Carol Monoghan etc.
Worth noting that the major (major!) message this letter gets across to anyone unfamiliar with the BPS shenanigans, is the way that emotive rhetoric is used as a replacement smoke screen for scientific debate, because they have precious little of the latter and bucket loads of the former. That is such an important enlightenment for people new to the politics of ME/CFS. And the ocean liner is always good.
Interestingly, SW said that he respected Steve Lubet, although, strangely, he didn’t appear to remember having read the article which he had commented on at length. I wonder if this tells us anything about how SW’s selective memory works:
It is unclear whether Simon was disagreeing with Mike’s assertion that “humility is good practice for us all”, or only with his assessment that PACE is “so profoundly flawed that it cannot be trusted”.
This does highlight how these particular BPS proponents rely on choosing hypotheses that, even if they are groundless, can be tricky to actually prove they are, until good solid biomarkers are found. A self-fulfilling belief system, maintained by emotive rhetoric and disparagement of all disbelievers ... shamans not scientists.
I have mentioned before that I have wondered about SW's reading comprehension since coming across his comment that he agreed with Jenkins that the most reasonable explanation was that the majority of the Royal Free cases were a hysterical reaction to a small number of polio cases among the staff. That might be arguable, but it reveals something of his views. The major problem is that this was not at all what Jenkins wrote.
Quite relevant to this discussion about Wessely's absurd claims about war zones in Iraq and Afghanistan being less dangerous than interacting with us: https://www.tandfonline.com/doi/abs/10.1080/09540962.2018.1535044.
Video game publishers regularly get threats over featuring female or gay characters. Journalists get threats over merely reporting the direct words of some people with a devoted fan base because their own words make them look bad. The Internet is full of trolls because humanity is full of trolls. Abuse is common in medicine as it is in any service profession. It should not be so but the reality is that there are people out there with genuine behavioral problems.
Any suggestion that such behavior is an indictment of a large patient population with a degree of organisation that is best described as Brownian is wholly dishonest and a mark of lack of integrity and character. It's a common and general problem that physicians deal with every bit as much as bartenders.
This is guilt by association over a perceived association that isn't even legitimate. As far as we can tell, physician-on-physician bullying is a problem of almost equal gravity, the hazing culture of "I had to go through this and so will you" is well-known even outside the profession. Wessely's disinformation campaign is a disgrace and completely unprofessional. It reveals a deeply broken moral compass when abusing a vulnerable population is seen as a valid means to an end.
It's not really even a perceived association, more an invented one to suit their smear campaigning purposes.
This is not about threats, its about the bully claiming he is the victim and using that as an excuse to keep harming us. He needs everyone else to not turn on him so he claims we are out to get him so everyone else will rally around him and accept his lies instead of our proven truths.
One reason why it's often hard to criticise Wessely for what he's said about ME/CFS is that he tends to write in a way which creates a narrativ for reader, but just by him selectively reporting what he claims others have said, rather than explicitly giving his own views.
Separate names with a comma.