Sense about science / PACE: The research that sparked a patient rebellion and challenged medicine

[CFS_for_19_years]

With each of these new pieces by scientists finally -- FINALLY!! -- critically examining PACE, the thing I've found most interesting is the Atlantic divide. So far, they're always American. Keith Law and @Jonathan Edwards are the only Brits I can think of who have broken ranks (IIRC, there may be some British ME/CFS clinician/researchers who signed the Lancet letter, though the very fact that they treat ME/CFS biomedically probably excludes them from the British medical establishment). I'm sure there are any number of theories/speculations/reasons for why that is, but for the time being I simply observe this phenomenon with bemusement.

Job security may be one of the main reasons Brits won't speak out against another Brit. After all, it's a small country, and if word got around that you'd criticized a colleague's study, it may affect your ability to move up or find a new job. Jonathan Edwards is retired and maybe Keith Law just has some brass in his drawers.

 

[Cheshire]

https://twitter.com/i/web/status/714095532164009984

 

[SilverbladeTE]

Job security may be one of the main reasons Brits won't speak out against another Brit. After all, it's a small country, and if word got around that you'd criticized a colleague's study, it may affect your ability to move up or find a new job. Jonathan Edwards is retired and maybe Keith Law just has some brass in his drawers.

this is part of why Science has become so corrupt (it is)
Institutionalized, so tenure, pensions, funding etc become more important than the love of/facts of Science.
Big Business doesn't want ot pay for repeat studies to verify negative findings, but which are absolutely vital in Science.
Universities are riddled with nepotism and back stabbing cliques tc.

not always the case, no, but it takes a good administration to keep things on straight and narrow.

very seriously, this is why folk should no longer trust "Science", but be as sceptical and demanding of proof as with anything else when money/power are involved, alas :/
"Health" is a huge area for corruption because of the money and power it involves so it quite frankly, is riddled with corruption. which is why you see in the tabloid newspapers every so often "NEW PILL CURES CANCER!"
bet your arse the owner of the newspaper or someone will push this so the share price goes up/make money somewhere.

And few folk have the guts and decency to be whistleblowers, and our corrupt systems nearly always attacks them, instead of honouring them.

 

[alex3619]

very seriously, this is why folk should no longer trust "Science", but be as sceptical and demanding of proof as with anything else when money/power are involved, alas :/

My view is that people should distrust science as part of the scientific process. Evidence and reason are critical. Science works by people asking questions. Without that its not science. A lot of marketing driven research is not science. Yes, I do mean marketing, not market.

Science is about saying maybe and no, not about saying yes.

 

[alex3619]

And few folk have the guts and decency to be whistleblowers, and our corrupt systems nearly always attacks them, instead of honouring them.

They are national treasures, not villains and criminals.

 

[SilverbladeTE]

Alex
yeah, the whole point about actual Science is:
doubt, nothing is certain, nothing.
Question, question, question, check facts all the time.
"real" Science is "neutral".
every fact and theory must be re-evaluated constantly

but our social institutions, including fair chunk of the Scientific "bodies" always become corrupted to keep control, to "not rock the boat"
and whistle-blowers...well essentially the tendency of human groups is to the nadir, because scumbags and incompetents don't want decent/competent folk around to show them up or expose them, or to interfere with their crooked games
so decent folk get pushed out

Only when you have very good leadership and empowering of the group not just the leaders, will things go well.

 

[Yogi]

This is another great demolition job (Tuller style) of the PACE trial.

This truly is a momentous occasion for us. Stats and Sense about Science USA are finally validating what patients have said for years.

Although separate charities SAS USA are linked with Sense about Science in the UK.

SAS UK have Simon Wessely as advisor and past trustee and they gave him the John Maddox Standing up for Science award in 2012.

http://www.senseaboutscience.org/blog.php/125/john-maddox-prize-guest-post-by-sir-simon-wessely

http://forums.phoenixrising.me/inde...wins-prize-for-standing-up-for-science.20231/

This must have been a difficult decision and shows Wessely's stranglehold over ME /CFS patients is crumbling.

 

[Yogi]

Amazing quote from Trevor Butterworth (Director of Sense about Science USA) WOW just WOW!!

statsorg on March 25, 2016 at 1:50 pm
What we are aiming to do with STATS and the AllTrials campaign (both are run by Sense About Science USA) is to raise awareness of the importance of study design, data analysis and clinical trial transparency in science and medicine. There needs to be a change in the culture of academic research in the sciences on these issues, and also, critically, a recognition of patients as partners in research. This is not something that can happen overnight. There are many vested interests in doing the same thing over and over again. But we do see change. This week the American Medical Association endorsed the AllTrials campaign; we did our first stats workshop at a news organization and the reaction was great; and we’ve been overwhelmed by the response to publishing what is a super wonky investigation. All this will add up over time. But from the perspective of the ME/CFS community, PACE strikes me as something of an “Act Up” moment.

Best

Trevo

 

[A.B.]

Proponents of data sharing and open science are rapidly becoming good friends to the ME/CFS community

 

[BurnA]

SAS UK have Simon Wessely as advisor and past trustee and they gave him the John Maddox Standing up for Science award in 2012.

This makes me want to vomit.
This guy knows who to be friends with that's for sure. He seems to pop up everywhere, SMC, Ben Goldacre, SAS UK, I wonder where next.
What's with the idea of giving awards to advisors / past trustees? How pathetic.

How embarssasing for them.

 

[BurnA]

Amazing quote from Trevor Butterworth (Director of Sense about Science USA) WOW just WOW!!

Great quote, where is it taken from ?

Interesting he mentions Alltrials ....isn't that what Ben Goldacre is involved with ?

 

[BurnA]

The problem is not finding reporters interested in the story. The problem is finding publications & editors interested in the story. It's a difficult sell for many reasons - one of which being our problem here is not new, and the news is about what's new. Also, it's a really complex story with a lot of murky elements that are not readily apparent to any editor glancing at a pitch from a reporter - and editors tend to shy away from big murky stories. Now, if a scientific publication comes out that refutes the PACE authors' conclusions using their own data, now that would be news.

Here's the most recent example of the problems getting publications interested in ME: Stephanie Land is an experienced journalist and a long-time friend of Whitney DaFoe. She wrote about her experiences trying to find a publication to buy a story on Whitney & ME. Stephanie writes:

"I haven’t been able to place any pieces I’ve written on it, though I have tried desperately. I’ve spent a lot of nights, staring at pitches I’ve refined, listening to a song on repeat, wondering how I can convince a publication that my story deserves space on their platform."

http://stepville.com/2016/03/24/therein-lies-your-calling/

http://m.huffpost.com/us/entry/chronic-fatigue-syndrome-_1_b_9513498.html

ETA there is a separate thread on this article

 

[Yogi]

Great quote, where is it taken from ?

Interesting he mentions Alltrials ....isn't that what Ben Goldacre is involved with ?

It is from the editorial.

http://www.stats.org/editorial-on-pace/

Yes ben goldacre is responsible for all trials.

This is why it really is a breakthrough as SAS USA have broken ranks with SAS UK and the incestuous UK science and medical field including ben goldacre.

 

[Yogi]

Here is another reply from Stats.org

ME patients are finally being heard.

Greg Crowhurst on March 28, 2016 at 8:31 am
I once attended a top level meeting at our local hospital, which refuses to treat ME,at which I was told the “Oxford Criteria”, upon which the PACE Trial is based, are the “Gold Standard”.

My wife has Very Severe ME, I have been fighting for way over two decades, for medical support and treatment for her but have been hampered at every turn, by the influence of the PACE Trial.

Even before the trial was published, the medical profession was extraordinarily willing to be duped by psychiatric propaganda, based on nothing more than personal opinion, that people with ME were victims of “malpractice thinking” and “deconditioning”, to be “cured” by CBT and GET and, cruelly, offered no more than basic medical screening.

Last year I was a finalist for the BJN Nurse of the Year Award. Most of my career has been spent caring full time for my wife, whose agony and experience defies description; it is so extreme, outside most people’s comprehension.

I have documented our journey here :
www.http://stonebird.co.uk

You could not imagine, in your worse nightmare, that such depths of illness would go univestigated, untreated, unresearched; there is no medical speciality, whatsoever in Severe ME.

Meantime my wife, left, all these years, to “get on with it”, has had to witness an all powerful psychiatric lobby go from strength to strength, exerting more and more influence.

Talk about David and Goliath, it has felt that everyone,the media, the medical profession, the Government, the NHS, has been against us – on the basis, not of science, but psychiatric spin and deceipt.

Incredibly, thanks to the many who, against all the odds, have never given up, the psychiatrist’s long reign, that house of cards, built without substance, as the PACE Trial shows, looks like it is about to collapse.

Reply

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  statsorg on March 28, 2016 at 3:05 pm
  We have been deeply moved by all the comments from those living with and caring for those with ME/CFS; we hope that our very small effort to shed some light on this issue will be part of a much brighter path for all of you

Anyone up for a group thank you card for Rebecca Goldin and Trevor Butterworth.

 

[jimells]

So far, they're always American. Keith Law and @Jonathan Edwards are the only Brits I can think of who have broken ranks

Actually there are many professionals in the UK who have been opposed to the GET/CBT model. Our own @charles shepherd has been a tireless campaigner for many years, in spite of his own illness. The Gibson Inquiry of ten years ago included Dr Ian Gibson, Dr Richard Taylor, Dr Des Turner. There are other names to add to this list, but my brain is unable to recall them.

 

[jimells]

statsorg on March 28, 2016 at 3:05 pm
We have been deeply moved by all the comments from those living with and caring for those with ME/CFS; we hope that our very small effort to shed some light on this issue will be part of a much brighter path for all of you.

It's always nice to make new friends.

 

[Sasha]

Here is another reply from Stats.org

ME patients are finally being heard.



Anyone up for a group thank you card for Rebecca Goldin and Trevor Butterworth.

That's a lovely idea and if you started one, I'm sure people would sign.