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

[Sean]

No, we don't need the data to discredit the study. Their own words in the abstract of the long-term followup study thoroughly discredits the study:

http://www.ncbi.nlm.nih.gov/pubmed/26521770

This needs to be shouted from the rooftops. Instead it has been largely buried and ignored.

The null result in the 2.5 year follow-up study, and their appalling misrepresentation of it, is the final nail in their coffin, and it should be at the centre of all campaigning.

Their own study falsified their hypothesis. No way around that.

Only the most incompetent doctors and researchers would fail to understand the concept and implications of a null follow-up result.

 

[Sean]

They NEED to show they are above board and did everything right, but that option looks close to absurd.

It is the one option they can't consider, because they know that allowing proper independent scrutiny will destroy their claims, reputations, and careers.

It is the only explanation that makes sense of their increasingly absurd and propaganda based tactics.

 

[SilverbladeTE]

Let's just say it
it's fraud
they manipulated it to get the results they wanted, then they've tried to prevent the facts getting out

any other setting but the hocus-pocus, mumbo-jumbo of the psycho-bollock-slappers, they'd be publicly pilloried and actually prosecuted (since it was Public funds) for *FRAUD*!

One of the P.A.C.E. doctors at work

 

[jamie]

Right now seems like a perfect time for a really good investigative journalist who likes long form stories studied over months. There is a lot going on in our ME world right now and the timing is good with IOM and P2P acting as a legitimizers add Dr Tuller and the new story calling his blog deserving of a pulitzer in journalism and it could tempt someone more mainstream but still independent who likes to take on big complex stories.

The CDC has blood on its hands in this study as they used their criteria for cover and are still trying to use it in the new NIH study long after all the experts say get rid of it.

What we don't know after 30 plus odd years of this is the why of it all. starting with the CDC and the outbreaks then the British push to get this study to have the results they wanted.

Many of the original villains are dead and gone yet there is still such a push to on many levels to keep us in the general fatigue depression camp. Is it the insurance lobbies and companies and or government agencies that see how much money they would have to pay out? Wasn't there a conflict of interest with them and some PACE investigators? Hell, the NIH was caught red handed stealing our money by a whistle blower and reprimanded by congress yet they held their course and continued. Just recently they trying to drop all funds from the CDC.

The list go on, I wouldn't be surprised if they thought they could do to us what they did to Gulf War Illness with the IOM study.

after decades it just doesn't seem like basic neglect and not enough money that is the party line now in the US.

 

[Comet]

Because science involves adversarial argument. We have to bring these things to the attention of enough doctors and researchers. If we have proof its rubbish science it does not matter if we cannot get that proof out to others. Science is about communication as well as hypothesis testing.

Its been very little time as science goes since we had traction on the problems we have been complaining about for up to thirteen years now. The Virology Blog articles are still having an ongoing impact, and more and more science articles are being produced. By increasing the controversy through denying data requests the PACE investigators are actually increasing scrutiny, and more and more of the methodological and other flaws will be seen in the wider scientific community.

Think of it this way. They know they are in trouble, but there is no central authority to put a stop to the shenanigans. Nor would we want one, because that would be another place that science could be abused. Instead its like the proverbial camel with the massive pile of straw on its back. In the end it will be one tiny straw that collapses the camel, but that piece of straw will be on top of many many other pieces of straw.

The more controversy there is, the more it will be talked about. The more its talked about the more scientists will see the flaws. Everything they have done lately accelerates the process. There is too much information out there now.

The only thing that might save them, however improbable, is release of the data. They NEED to show they are above board and did everything right, but that option looks close to absurd.

It was more of a rhetorical question. I just want to hit them with everything instead of (or while) waiting for data release. But then again, I can't get out of bed much and have a hard time forming complete sentences. Lol. Didn't mean to come across as snarky.

 

[jimells]

Wasn't there a conflict of interest with them and some PACE investigators?

Sir Simon has been involved with NIH at least since 1991, when he was a keynote speaker at an NIAID and NIMH conference. This is the same year the Oxford criteria was unleashed on ME patients.

He and Michael Sharpe were both involved with developing the Fukuda criteria in 1994. Both of them were keynote speakers at "State of the Science Symposium" organized by NIAID in October 2000.

We can document a direct line from the disability insurers and re-insurers to the Wessely School, the UK Dept of Work and Pensions, and other UK institutions. We can document a direct line from the Wessely School to the UK Science Media Centre". We can document a direct line from the Wessely School to NIH and CDC.

Can we document a direct connection from the insurers / re-insurers to NIH and CDC? I don't think that has been done yet. But the Wessely School is the weak link in this chain of corruption. There is indeed no honor among thieves. I have no doubt that the psychobabblers would squeal like stuck pigs if faced with a real legal challenge. And I expect they would have some very interesting tales to tell.

You can find lots more fun facts about the Wessely School in the document "Thirty Years of Disdain", written by our very own Mary Dimmock and Matthew Lazell-Fairman.

 

[leela]

Can we document a direct connection from the insurers / re-insurers to NIH and CDC?

I don't think it would be difficult, since UNUM is a global insurer, and the leading disability insurer for both the US and the UK.

 

[jimells]

I don't think it would be difficult, since UNUM is a global insurer, and the leading disability insurer for both the US and the UK.

Yes, exactly. It just hasn't been done yet. Perhaps Dr Tuller is working on this. His articles to-date appear to be carefully building a very solid foundation that could maybe support outright allegations of corruption. One can still dream...

 

[viggster]

Its been very little time as science goes since we had traction on the problems we have been complaining about for up to thirteen years now. The Virology Blog articles are still having an ongoing impact, and more and more science articles are being produced. By increasing the controversy through denying data requests the PACE investigators are actually increasing scrutiny, and more and more of the methodological and other flaws will be seen in the wider scientific community.

Think of it this way. They know they are in trouble, but there is no central authority to put a stop to the shenanigans. Nor would we want one, because that would be another place that science could be abused. Instead its like the proverbial camel with the massive pile of straw on its back. In the end it will be one tiny straw that collapses the camel, but that piece of straw will be on top of many many other pieces of straw.

This is a great synopsis of how things work in the science world. It takes time for 'errors' this large, perpetuated by a tight group of like-minded, influential people, to get corrected in a way that matters in the real world. But things are going in the right direction.

Hell, the NIH was caught red handed stealing our money by a whistle blower and reprimanded by congress yet they held their course and continued.

That was the CDC, not the NIH.

 

[viggster]

Right now seems like a perfect time for a really good investigative journalist who likes long form stories studied over months. There is a lot going on in our ME world right now and the timing is good with IOM and P2P acting as a legitimizers add Dr Tuller and the new story calling his blog deserving of a pulitzer in journalism and it could tempt someone more mainstream but still independent who likes to take on big complex stories.

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/

 

[Seven7]

Most of the most successfull campaign do not go to
Media until after: what if one of our very smart video capability friends do a 2 min video to bring attention to ME and stop the PACE madness campaign. ( Jenifer or Ryan)

So something like a few very bed ridden patients: then is time for biomedical reaserch. Stop the CBT/ GET madness join us and tell out government to fund ME then have a link where we can ( donate or capture signatures )

Then we post in facebook and share the crap out of it and ask friends and family to share.

 

[BurnA]

"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."

I wonder if she has considered the following pitch :

"There are professors in some of the top universities in the UK who believe that recovery can be defined by getting worse. "

Followed by
" most journalists are too lazy to question this"

 

[Marky90]

I wonder if she has considered the following pitch :

"There are professors in some of the top universities in the UK who believe that recovery can be defined by getting worse. "

Hahaha that cracked me up.

How in the world are they getting away with it..
Trudie Chalder is on the 18`th of april attending a conference about the severely ill. I`m going to take the stage and deliver Tullers main points. If they dont give a rats ass - me neither!

 

[jamie]

That was the CDC, not the NIH.

You're right, sorry about that.

As to to reasons why it's hard to get stories on us published I also agree but the story I'm talking about is not the same old neglected poor patient story. You're about that too, it is not news and that is what her story as good as it might be was as she described it.

The mainstream press only seems interested in us when the story is given to them by government agencies. She admitted she didn't have a handle on the politics and the story I'm thinking about is mostly about the intersection of politics and science as it pertains to us. The Pace controversy with the new outsiders blowing it up and the IOM and p2p make for a new story and sheds new light on the past.

And I did say it would need someone who took a lot of time and wrote long form articles and liked complexity, there aren't a lot of respected publications like that out there or reporters fitting that description established enough to pick their stories but they are out there.

 

[leela]

True, this is not a story that works for the current culture of six-second soundbites.
@BurnA nailed it though!

 

[Luther Blissett]

Speaking of the trouble of finding publishers, I wrote a note to Sense about Science US, thanking them for their work, and got a lovely reply from them.

 

[Michelle]

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.

 

[Esther12]

It's interesting how different people can make such different criticisms of PACE. This piece seemed to really focus on some details I can think are less interesting, but miss out other important areas.

It's great to have this from a source that many will see as authoritative, but also, it's another illustration of how hard it is to summarise the problems with PACE. People new to the topic are only going to be getting 1/4 of the story... yet it's so long and dense many will not slog through it.

tbh, reading that has left me feeling a bit down about the prospects of ever getting the mainstream media to take an interest. It's just so darn complicated! (The diagram on fatigue scores was a pretty nifty way of simplifying that issue).

In multiple interviews and in the papers in which the changes were discussed the PACE authors noted that these changes were made before any data had been seen, and under the approval of an oversight committee.

About this claim... how come QMUL stated, after the 2011 Lancet paper, that the results for the recovery criteria laid out in the protocol was due to be released in an academic paper, and then these results never appeared. To me, that would seem to indicate that a decision to not release those results was made after data had been seen.

Also, I am half-asleep, but I didn't understand some of the points made about "The ME/CFS criteria for recovery." so am going to have to re-read that tomorrow.

 

[Sean]

People new to the topic are only going to be getting 1/4 of the story... yet it's so long and dense many will not slog through it.

The PACErs have muddied the water very successfully. No doubt about that. But they have not done so permanently.

Our primary target group to convince, for now, is not the public and politicians, it is mainstream medical science. Successfully engaging and convincing them is the key to it all.

In multiple interviews and in the papers in which the changes were discussed the PACE authors noted that these changes were made before any data had been seen, and under the approval of an oversight committee.

They knew about both the FINE data, and the Wiborg paper results showing the critical lack of correlation between self-report measures and objective actometers, and hence what they had to do to obfuscate it, before they saw the PACE data.

As best I can tell, they conned the oversight committee. Who could be valuable allies if they are appraised of the full story, and can be convinced of the need to protect their reputations.

 

[Dolphin]

The CDC has blood on its hands in this study as they used their criteria for cover and are still trying to use it in the new NIH study long after all the experts say get rid of it.

If you're saying that the study used the Reeves et al 2005 criteria (sometimes called empirical criteria) in the PACE Trial, that is not correct. They used the Reeves et al. 2003 criteria which are an updated version of the Fukuda criteria.