Buzzfeed News - A Controversial Therapy For ME Has Led To Claims Of Death Threats, Harassment, And Pseudoscience

A Controversial Therapy For ME Has Led To Claims Of Death Threats, Harassment, And Pseudoscience

Article by Buzzfeed journalist Tom Chivers about the SMILE trial and the surrounding controversy

The author talked to Parker, Crawley, Tuller, Edwards, an unnamed PACE author, and people who have gone through the "process".

 

This is an excellent article. The author has taken the time to speak to both sides and the end result, IMHO, is utterly damning.

 

It's particular good because of the explanation @Jonathan Edwards gives regarding subjective outcomes and blinding. I'm glad the journalist kept all that in the article.
Also nice that they left in this bit about PACE :

 

I propose that from now on we use the term "mega placebo therapy" to refer to LP.

 

Woman speak with forked tongue if you ask me. Realises the whole shebang is worthless tripe but doesn't want to bite the BPS hands she has shaken... rather cowardly in my eyes.

 

Lol 'MPT' ... only missing a 'u', a 'p', an 'e' and an 's'

 

I am reminded of someone who said if Republicans claimed the earth is flat the media would report it as, Is the earth flat or round, both sides have a point.

 

So fuck the patients and just let her get on with it "cos she trying"?

I wonder what definition of the placebo effect she is using here. Its so easy for quacks to come out with the old, "as long as it helps the patient recover who cares if its a placebo".

In my opinion that's the cowards way out of an issue like this because it doesn't get into the nitty gritty that no one recovers but some people may just give favorable answers on questionnaires out of loyalty, persuasion or a belief that answering positively to a questionnaire will somehow make them better because they have been told that's how the "treatment" works.

It also doesn't bother to examine the data, the methods and the change of protocols midway through the trial, swapping objective measures for subjective ones.

 

Love the use of the word mega. It’s like she was trying to think of words to describe a completely shambolic research project and somehow MEGA just popped into her mind! Yes, SMILE combines placebo with all the mess and muddled thinking that is associated with the CMRC’s MEGA shambles.

But let’s not be too harsh on Esther. She may be totally incompetent, but she is doing her best. Sadly, I fear that may be true.

 

This is the whole point. When an ignoramus rises to the top there is supposed to be layers and layers of self correction to stop them continuing, infact it should happen as they attempt to get there in the process as it happens. But as in so many things in our societies this is proof that all of our systems are broken.

The peer review system is broken, journalism is broken, the education system is broken, politics is broken the public health system is broken.

There are just layers and layers of people sitting on their arses not doing their jobs properly just allowing megalomaniacs to rise to the top.

 

It appears that people do recover using the LP, (irrespective of this trial's findings), hence the enduring interest in it, and the puzzle. The problem is, it's just not clear what they're recovering from.

If all that was needed to recover from ME was a change of thought we'd be laughing - we could all do that very easily, and be well.

I met an LP practitioner years ago, who told me that she thought she could give herself ME if she "thought the thoughts you do". In response, I told her there was some evidence of a genetic component to the disease - the most unarguable biology I could think of on the spot - and she was genuinely shocked, and couldn't reconcile it.

Although clearly unethical, it would make the ultimate test of the LP if a healthy practitioner was able to think themselves into ME (assuming we had a diagnostic measure).

Of course it's not really that risky, as they could promptly think themselves out of it again, after the experiment...

 

.... & failed so spectacularly that one could be forgiven for wondering if it had failed at all or if there were ulterior motives at work.....

 

People keep forgetting the old adage which goes something like this - if you're any good at your job you'll be promoted - which logically means that everyone in a job for longer than 2 promotion cycles is no good, useless, totally incompetent in fact, and that by definition everyone in the top jobs is useless.

Whilst it's clearly rubbish, just because I've been doing the same "job" for 30 years and haven't been promoted doesn't mean......lol, it does provide a nice simple, non conspiratorial way of explaining, well, lots of things.....

 

I feel like this is actually the most well written coverage of SMILE / PACE from a news site so far.

By covering both sides of the debate, the article actually manages to make Crawley and Bristol come off as uniquely inept.

Mega awkward



Although the author does his best to remain neutral, I feel like the ending gives away his point of view on the debate.

 

And let's not forget OMEGA I think it fulfilled its intention

https://www.change.org/p/opposing-m...autopublish&utm_term=des-lg-no_src-reason_msg

 

Ethics approval is very broken... especially in the South West (not Essex afaik ).

 

Quote: "Dorothy Bishop, a professor of developmental neuropsychology at the University of Oxford, told BuzzFeed News she was also concerned about the “wisdom of running a trial [into something] that doesn’t seem to have much scientific basis and is commercial, because if you find a result you end up giving huge kudos to something that may not deserve it”.

“I don’t want to come down like a ton of bricks on Esther Crawley because I think she’s doing her best,” she said, but she was concerned about a “a mega-placebo effect”. End quote

I find this comment from Professor Bishop deeply depressing and shocking.

For goodness sake Professor Bishop, the safety and care of children with ME takes precedence over the career and feelings of any scientist. If the research is seriously flawed, "mega-placebo effect", speak out to the powers that be, not some mere comment in Buzzfeed. That's not good enough.

You're an Oxford professor, you have a duty to protect the children, not Professor Crawley and not yourself!

I despair of the scientific and moral standards of science in the UK.