Nice find, @rvallee. Nice to see too that it seems to be coming from someone with no interests at all, neither BPS proponent nor patient. which is a positive sign.

This idea of threaded papers that they mention in the article is new to me - that any clinical trial should be automatically linked to any subsequent papers that use the same data set, that reanalyse the data, or that attempt to replicate the study. The is too much of a hit-and-run culture in the behavioural sciences (done that, proved that. let's move on).
 
Code:
https://twitter.com/TomKindlon/status/1362402554374684675

Today is 10th anniversary of Lancet paper on £5m #PACETrial

It didn't include null results for these outcomes:
-fitness levels
-employment & disability payments
-recovery (protocol defined)

This led to misleading coverage

See our reanalysis
https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-018-0218-3

#MEcfs #CFS
Also
Code:
https://www.facebook.com/TomKindlonMECFS/posts/1891786220969494

Today is the 10th anniversary of Lancet paper on the £5m PACETrial, which the investigators said was supposed to be the "definitive" trial of the therapies tested.

The Lancet paper didn't highlight the null results for the following outcomes:
- fitness levels;
- hours worked & disability payments
- recovery (protocol defined).

This led to a lot of misleading media coverage

See our reanalysis where we also highlight there was no improvement at long-term follow-up:
"Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT"
https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-018-0218-3
 
Trial By Error: Happy Tenth Anniversary, PACE Trial!

by @dave30th
It’s been ten years since The Lancet published the first results of the PACE trial. Wow!

Ten years ago, I was 54 years old and still a graduate student in public health at UC Berkeley. I was also busy writing stories for The New York Times about the mouse retrovirus research that had roiled the field of research into chronic fatigue syndrome—the then-standard name for the illness now referred to as ME/CFS by US government agencies. The mouse retrovirus, XMRV, turned out to be a lab contaminant. The story had struck such a nerve at least in part because of long-standing and lingering speculations that a retrovirus could be involved—a position that retains some strong adherents.

https://www.virology.ws/2021/02/18/trial-by-error-happy-tenth-anniversary-pace-trial/
 
this alert just came up.

Its from Professor Robert Winston (Lord Winston) on an unrelated debate in the HoL.

"
Ministerial and other Maternity Allowances Bill - Committee (and remaining stages): Amendment 1 (25 Feb 2021)
Lord Winston: ...and because of which I have received particularly extraordinary adverse and hostile press. The first was when I first discussed the possible causes of chronic fatigue syndrome with Professor Simon Wessely, who is now interested in helping the Government on mental health issues. That issue produced a storm of deeply unpleasant letters."

a little bit of searching and I found this from the HoL debate on the PACE trial in 2013:

Lord Winston:

We are all very grateful to the noble Countess, Lady Mar, for introducing this debate. I will be very brief and I apologise to her for missing the first minute of her speech. Very surprisingly, we were much earlier than expected and, unfortunately, the name of the previous speaker, the noble Lord, Lord Gardiner of Kimble, was still on the screen when I came into the Moses Room.

This syndrome causes persistent fatigue for more than six months, as well as various other symptoms. It is not relieved by rest, which is and has been puzzling for a long time. It is not the case that there has not been a lot of research. I have looked, for example, at MEDLINE, where we can see that there are 5,874 research papers on this condition. It was not only the Medical Research Council that funded the PACE survey; it is very clear that extensive work has been carried out and many countries have been involved.

Recently, I made a list of papers published in the past year. I will not bore your Lordships with all of them but we know of, for example, Moss-Morris at King’s, Dr White at Barts, Dr Lehmann in Bavaria, Dr. Fjobback in Denmark, Fukuda in Japan, Jackson in Australia, Lewis in Bethesda, Maryland—part of the NIH funders there—Wibourg from Hamburg, Bleijenberg from Amsterdam, Newton from Newcastle, Brooks from Huddersfield, Wessely from King’s and Vincent from the Mayo Clinic in Minnesota. There are many other names, but these are very prestigious departments of medicine. Effectively, they all come to the same conclusion; namely, that at the present time, the best treatment is almost certainly along the lines of cognitive behavioural therapy.

What is different about the PACE study is that it is a detailed, controlled study which has extremely rigorous entry into it. Unlike most previous studies, I think I am right in saying that—perhaps the noble Lord, Lord Alderdice, will correct me if I am wrong—there was only one drop-out, which is fairly remarkable. It means that it is extremely comprehensive, so there are very good data. It looked at a series of issues about treatment and it seems pretty clear to me that cognitive behavioural therapy is effective in something like one-fifth of patients, which is a bit more successful than the noble Baroness claims. I do not think we should underestimate that. They go some way to explaining that were cognitive behavioural therapy to be used perhaps on a slightly more financially secure footing with rather more sessions, it would be likely to be of more benefit, particularly toward the end of the treatment.

One issue is that far too frequently, we see that many of our colleagues have been vilified. Simply because they are psychiatrists does not mean that they are not doctors. That is a real issue, and it is not only psychiatrists who have been vilified. For example, Myra McClure, who was sure that there was not a viral causation for this disease, was absolutely vilified and decided to give up her research. This is also true of Esther Crawley, who even went so far as to report her vilification to the press and changed her telephone number. As some noble Lords will know, Dr Simon Wessely claims that he had death threats, which is very serious.

The problem, of course, is that to say that these vague conditions appear almost certainly to have a psychiatric basis is not to say that they are less important, or that the person who is suffering from them is in some way to blame. It means that we must find rational ways of treating them.

I commend this study. It is an example of really excellent research done in a very difficult phenotype and done very well indeed. The authors are to be congratulated on demonstrating clearly that cognitive behavioural therapy and, to a certain extent, some exercise in addition, is a real improvement on what has happened for these patients before.

https://meassociation.org.uk/2013/0...-verbatim-report-and-youtube-6-february-2013/
 
this alert just came up.

Its from Professor Robert Winston (Lord Winston) on an unrelated debate in the House of Lords

My first choice would be to ignore this side-sweep at patients with ME/CFS. Perhaps not many people will have heard his speech.

But yet again, people with power have the opportunity to get their particular message across, whilst the general public do not.

Why did Lord Winston feel the need to start this again?

ETA - changed one word to clarify
 
Winston has been roused from his comfortable slumber in the Lords and sent out to further smear critics at a crucial time in the game, just when the UK branch of the BPS cult is coming under increasing scrutiny and threat of being disempowered.

A few deeply unpleasant letters. Pfft. Try being a patient for decades under the reign of noble Sir Simon and his adoring fan pack, m'Lord, and then get back to us.

The most distinguishing characteristic of the BPSers is their complete inability to take criticism, especially when it is correct.
 
Who is Winston? Who is Steptoe? Are these people known to many in UK? Would they be known on the level of a middling known US senator? I couldn't name most US senators and I follow national politics.

I realise it’s a strange link to provide for you @dave30th , but it provides the right flavour as to why Lord/ Prof Robert Winston is so well known in the U.K.:

Champion of IVF
Well known Scientific TV programmes

https://www.gsal.org.uk/professor-robert-winston-tells-students-use-science-wisely/

Only aware of his public persona, I knew nothing about him personally until I was shocked by his response in the 2013 debate shown in post #925 by @Sly Saint

Note:
Imperial College
Interested in ethics

Lord Winston told the assembled students: “I come into schools because you are the future of our society. It’s important to understand your responsibility and the need for an ethical attitude to science.”

#ShareGoodScience !
 
Who is Winston? Who is Steptoe? Are these people known to many in UK? Would they be known on the level of a middling known US senator? I couldn't name most US senators and I follow national politics.

@dave30th Patrick Steptoe together with Robert Edwards pioneered in vitro fertilisation from his base as a clinical obstetrician in a peripheral hospital using a laparoscope. Winston, as professor at the Royal Postgraduate Medical School at Hammersmith tried very hard to prevent Steptoe's work from being funded or going ahead. He vilified Steptoe at every opportunity.

Once in vitro fertilisation had been achieved Winston rapidly took on a role as major expert in the field, exploring Steptoe's success. When Steptoe finally got the recognition he deserved shortly before his death Winston apologised and asked Steptoe if he would accept his apology. Steptoe rightly refused. Steptoe was dead by the time his work was awarded the Nobel Prize - only received by Edwards because Nobel cannot be given posthumously.

These are not middle rank senators. They are some of the greatest and most courageous scientists of the last century. I was taught by Edwards as a student and met him later. He was an extraordinarily humble and passionate scientist who turned embryology from being a dead subject into something that mattered to ordinary people.

I also met Winston while skiing. He seemed only to be interested in the sound of his own voice.
 
I also met Winston while skiing. He seemed only to be interested in the sound of his own voice.


You missed off that people know of Winston as he did a TV program so people know who is is (or did a few decades ago!).
Would they be known on the level of a middling known US senator?

I quite like this analogy for Winston as he is in the house of Lords so has political power but unlike a US senator he was not elected. Instead, I suspect, he got appointed to the Lords as a TV scientist (and everyone knows that they are the best scientists of course!).
 
@dave30th Patrick Steptoe together with Robert Edwards pioneered in vitro fertilisation from his base as a clinical obstetrician in a peripheral hospital using a laparoscope. Winston, as professor at the Royal Postgraduate Medical School at Hammersmith tried very hard to prevent Steptoe's work from being funded or going ahead. He vilified Steptoe at every opportunity.

Once in vitro fertilisation had been achieved Winston rapidly took on a role as major expert in the field, exploring Steptoe's success. When Steptoe finally got the recognition he deserved shortly before his death Winston apologised and asked Steptoe if he would accept his apology. Steptoe rightly refused. Steptoe was dead by the time his work was awarded the Nobel Prize - only received by Edwards because Nobel cannot be given posthumously.

These are not middle rank senators. They are some of the greatest and most courageous scientists of the last century. I was taught by Edwards as a student and met him later. He was an extraordinarily humble and passionate scientist who turned embryology from being a dead subject into something that mattered to ordinary people.

I also met Winston while skiing. He seemed only to be interested in the sound of his own voice.

In the Lords debate above, Winston tried very hard to humiliate Margaret Mar. She did look crestfallen at the time, very uncharacteristic of her it was too, but everyone can only take so much of this drivel from Wessley acolytes and she probably decided what's the point in arguing as he appeared to have the upper hand as a doctor, revered before their eminences......
 
Thought this was more appropriate here rather than on the Guideline thread.

Blog: The PACE trial should be retracted, because it was seriously unethical, and the lead investigators continue to deny that.

This was submitted (December 2020) to NICE in response to the new draft ME/CFS guidance of November 2020,[1] which had removed the recommendation for Graded Exercise Therapy (GET), and downgraded CBT from therapeutic to a ‘supportive’ option.

[1] https://www.nice.org.uk/guidance/indevelopment/gid-ng10091/documents

I appear to be the first UK psychiatrist to be openly critical of the PACE trial.

https://drnmblog.wordpress.com/2021...-and-the-investigators-continue-to-deny-that/
 
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