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The Lancet (UK) editorial: "What's in a name? Systemic exertion intolerance disease"

worldbackwards

Senior Member
Messages
2,051
It's difficult to follow conversations on Twitter, but apparently a Lancet editor is refusing to answer polite questions about how the PACE Trial paved the way for the IOM report (as claimed in their editorial on the IOM report), accused people of being bullies, and blocked Jennifer Brea for a tweet which was clearly sincere and unoffensive.

maxwhd has collated some of the conversation and posted it as an image file:



full URL: http://twitdoc.com/view.asp?id=181131&sid=3VRF&ext=PNG&lcl=lancet-convo.png&usr=maxwhd

image file: http://twitdoc.com/upload/maxwhd/lancet-convo.png
*raises eyebrows*
 

biophile

Places I'd rather be.
Messages
8,977
@Bob re misunderstandings : The Lancet editor's account doesn't look private at the moment:

https://twitter.com/pam_das/with_replies

Here is a Twitter search for all tweets tagged with that particular alias (look between 20th February to 5th March):

https://twitter.com/search?f=realtime&q= @pam_das&src=typd

I started copying and pasting the tweets but there are too many. There's nothing really there to indicate people being bullies. Basically, answers were sought as to how the PACE Trial paved the way for the IOM report. The editor's response was: "This is our view and understanding from behind the scene discussions of this report. [...] Chronic fatigue =polarised field! We're entitled to our view as anyone else. It's an editorial! Write a letter if you're that aggrieved!"

The following tweet seemed to induce the response about bullies:

https://twitter.com/batteredoldbook/status/573032842361499648

James David Chapman ‏@batteredoldbook Mar 4

Compare responses @pam_das of @TheLancet "Write a letter if you're that aggrieved!" vs. @womenshealth "We sincerely apologize" #MEcfs

https://twitter.com/pam_das/status/573053011045580800

Pam Das ‏@pam_das Mar 4

@batteredoldbook @womenshealth what exactly would we be apologising for?? For having a view? Ridiculous. You're Bullies!

(note: AFAIK, @womenshealth previously apologised for and removed a tweet that used 'chronic fatigue': "#Chronicfatigue is real, and women are 2–4x more likely than men to be diagnosed with it. http://go.usa.gov/zA4j #MECFS")

The subject of the tweets after that point changed from being about the claim in relation to the IOM report to being about the claim in relation to bullying. Jennifer Brea wasn't the only one who reported being blocked, but also James David Chapman. At this stage though, the issue of whether anyone was actually blocked is secondary to the issue of questionable claims being made in the Lancet and subsequent tweets made on Twitter by one of the editors.

Judging from previous tweets and the history of the Lancet editors' indignation with criticism of PACE (starting with Horton's sneering on radio in 2011), I certainly wouldn't be surprised if Brea and Chapman were blocked by the Lancet editor for no good reason. The Lancet editors simply don't like being challenged. If there is a 'misunderstanding', it is the idea that editors can say whatever they want, including questionable claims, without being challenged, especially on social media of all places.

Their refusal to answer simple question, and blocking people over nothing, amounts to the fingers in ears approach:

Woman-with-her-fingers-in-ears.jpg
 
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Aurator

Senior Member
Messages
625
Perhaps the interesting question is what behind the scenes talks did they have that made them believe PACE paved the way for the IoM report.
Sharpe: "We absolutely have to say something that validates PACE at the same time as validating the IOM report."
Wessely: "I agree, but it's tricky".
Pam Das: "I know, what if we spin it so that it looks like the IOM report was issued thanks to PACE rather than in spite of it? Something like 'PACE paved the way for the IOM report'."
Sharpe: "Brilliant!".
Wessely: "I agree. That is a thing of beauty".
 

Sean

Senior Member
Messages
7,378
No, I am not on Twitter. But anybody is free to tweet it if they wish. :thumbsup:
 
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Large Donner

Senior Member
Messages
866
I am looking at. "the PACE trial paved the way for the IOM report" comment in attempt to read between the lines.....potentially!! Also the "behind the scenes discussions" comments must be looked at from a critical reasoning perspective.

We all know as a patient group that none of us actually wanted the IOM report and saw it as a chance for NIH to get themselves of the hook yet again. There was much controversy over the IOM Panel etc, there was the experts letter exclaiming the ICC-ME was a fit for purpose working document, there was the controversy over the $1 million spent by the NIH on the IOM contract. There where massive petitions with thousands of patient and scientists signatures.

If we cast our minds back the CFSAC is responsible for this IOM contract effectively and for years they have dragged their feet and ignored most if not all of the biomed experts recommendations.

There is no doubt spin masters like the Wessely school try to infiltrate and influence everything to do with ME worldwide.

So now we have a comment from influential people at the Lancet that there were behind the scenes discussions with the IOM....their own words not mine. We are told there is a connection between the PACE trial and the IOM contract ....again their words not mine.

Exactly who does this person mean by name when she talks of the PACE trial paving the way with behind the scenes discussions. It would have to be those people involved in the PACE trial and their close allies.

Yes, the BPS crowd didn't get it all their own way with the IOM but theres no doubt they would have tried to influence it or damage control the CFSAC direction in any way they felt necessary. Lets not forget it was so simple, we had 50 experts behind a suitable criteria and a perfect name, ICC-ME, and the control should have stayed with those closer to the patient group who are the actual experts. Instead we got a somewhat wishy washy IOM report that includes crap about CBT and GET and a stupid new name (SEID) which basically is another decoy to confuse and demean the actual disease like the phrase CFS did for years.

Yet again it was a slight of hand on making ME dissapear. Where is ME now especially in the US, what does the ICD code mean, who will ever use it?

So as much as the comment about the PACE trial paving the way for the IOM sounds delusional lets not forget there was simply no need for the IOM contract in the first place. There was also a point whereby the contract wasn't going to go ahead then it was reinstated. Why!!!????

Lets be honest the PACE trail was a joke and the IOM contract was fairly poor and actually unnecessary. So if we are being told there was behind the scenes discussions and the first paved the way for the later do we need to dig further? The comments from the Lancet would appear much more delusional if the IOM contract was a masterpiece set to produce instant funds for bio med studies shot down the PACE trial, CBT GET and agreed on the name ICC-ME.....but it didnt. It actually claims CBT and GET are useful. On the whole in most places apart form talking of retiring the Oxford criteria its seems to appease both "sides" in the usual something for everyone approach usually adopted by groups like the MRC etc. when they nearly had there backs to the wall.

So Lancet.....do tell us more about the behind the scenes discussion!!!
 
Messages
13,774
I am looking at. "the PACE trial paved the way for the IOM report" comment in attempt to read between the lines.....potentially!! Also the "behind the scenes discussions" comments must be looked at from a critical reasoning perspective.
...

So Lancet.....do tell us more about the behind the scenes discussion!!!

I don't think it's worth speculating too much, and tbh, don't see how PACE could have led to the IOM unless it and patient's response to it led to some people realising patients were getting screwed.

I certainly do think that the Lancet should explain their claim.
 

eafw

Senior Member
Messages
936
Location
UK
So now we have a comment from influential people at the Lancet that there were behind the scenes discussions with the IOM....their own words not mine. We are told there is a connection between the PACE trial and the IOM contract ....again their words not mine.

Extremely unlikley that there were discussions with the IOM and Lancet regarding PACE "paving the way" for the IOM report, and I don't think that's even what they were trying to imply here.

However, can virtually guarantee that who would be behind the scenes, as they almost always are when it comes to UK press and other publications, is one or more of the SMC/Wessely/White/Chalder/Miller gang giving their interpretation of events.

Perhaps "Were you briefed by the SMC or anyone associated with them or the PACE trial, what evidence did they give for their assertion that PACE paved the way for the IOM report, and did you bother to fact check it with IOM themselves ? " might be a good question to ask the Lancet at this point.
 

Large Donner

Senior Member
Messages
866
I don't think it's worth speculating too much, and tbh, don't see how PACE could have led to the IOM unless it and patient's response to it led to some people realising patients were getting screwed.

I certainly do think that the Lancet should explain their claim.

I am not claiming the PACE trial paved or led the way for the IOM, my post clearly is talking about why the claim was made that it did. We are being told there were "behind the scenes discussions" and I am trying to establish if that is the case, what was the purpose and to what extent the people involved in PACE would try to influence the IOM. The people behind the PACE trial have had massive government backing for years thats obvious and evident in the fact that the DWP helped to fund PACE. I just dont think its credible that the Wessely crowd wouldn't try to influence the IOM even by means of deception and spin etc.

They have been doing such things for decades and they have certain levels of success at it and affecting outcomes.


I don't think it's worth speculating too much,

Don't speculate about it then.

I certainly do think that the Lancet should explain their claim

The problem is without speculating how does one draw up a criteria to pose the question over the claim because any answer they offer you back would potentially just have to be excepted at face value wouldn't it?

Bob said:
You should read the IOM report. It's far from wishy washy. It's a heavy-weight validation of the biomedical nature of the illness.

I have read it, its wishy washy....

Why is there deafening silence form the IOM over the PACE trial and why do they include CBT and GET as being somewhat credible in their report. Why have the IOM attempted to drop the name ME in favour of SEID. Its utterly pointless to confuse the issue by using ME CFS and SEID. From fatigue to "Exertion Intolerance" is an obvious PR disaster for us. Even if the D does stand for disease and we have already seen it misreported a number of times as standing for Disorder.

How about the homoeopathy remarks in the IOM report is that heavy-weight validation of the biomedical nature of the illness.

**************************************************

One crucial reason we need to press the Lancet on their claims of PACE and behind the scenes discussion paving the way for the IOM report is because its their claim alone.

Do we have the Lancet or either Wessely and co on the back foot here as far this goes simply because there is a very senior person claiming behind the scenes discussion happened (presumably from people involved in PACE) and lead to the IOM or...the how IOM reported pr how the PACE people wanted them to report. By this I am not making any assertions that the SMC/PACE crowd did or didnt get their way in the IOM report to any extent thats a separate issue.

If Wessely and co claim there was no such discussion and cant explain how said discussions lead to the IOM or how the IOM where briefed by ...SMC?/the PACE school then we have proof that the Lancet claim is a delusion don't we?

If we are to address the people involved in the PACE trial the obvious question would be "what kind of briefing did you offer up to the IOM in the behind the scenes discussions talked about by the Lancet editor?"

Also why would "they" (whoever they are) have to partake in said discussions behind the scenes and off the record?
 

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
Why is there deafening silence form the IOM over the PACE trial and why do they include CBT and GET as being somewhat credible in their report.
I missed that bit. Do you have a page number? I think they very much stressed that there was no evidence for the efficacy of CBT, although it is true that they did not entirely dismiss it.
 

Large Donner

Senior Member
Messages
866
To add to last post .....

When it comes down to it the Lancet claim is either utter delusion or based on some set of discussions behind the scenes off the record in an attempt to.......??????

So either the Lancet in their blindness to critique the PACE trial is delusional and this current claim would by default discredit the Lancet as it was the editor who made the PACE IOM claims or someone has to stand up and tell us the discussions did happen behind the scenes. And also how the PACE trial/people involved in the PACE trial did infact shape the IOM or the way for the IOM.

Which one is it BPS school?
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I missed that bit. Do you have a page number? I think they very much stressed that there was no evidence for the efficacy of CBT, although it is true that they did not entirely dismiss it.
The IOM report briefly mentions CBT & GET; I think only on a single page of the report.

See page 264, starting at the bottom of page, under "Treatment".

In short, they summarise CBT/GET by saying: "The efficacy of cognitive-behavioral therapy (CBT) in improving cognitive function in ME/CFS patients is unclear" and: "Consistent with the findings of the systematic review of Ross and colleagues (2002, 2004), studies reviewed by Taylor and Kielhofner (2005) provided no evidence regarding the efficacy of employment rehabilitation, such as CBT and/or graded exercise therapy."
 
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Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
The IOM report briefly mentions CBT & GET; I think only on a single page of the report. See page 264, starting at the bottom of page, under "Treatment". In short, they summarise CBT/GET by saying: "The efficacy of cognitive-behavioral therapy (CBT) in improving cognitive function in ME/CFS patients is unclear" and: "Consistent with the findings of the systematic review of Ross and colleagues (2002, 2004), studies reviewed by Taylor and Kielhofner (2005) provided no evidence regarding the efficacy of employment rehabilitation, such as CBT and/or graded exercise therapy."
Yes, Bob, that's the bit I found, too. But I think @Large Donner may have been talking about P2P any way.
How about the homoeopathy remarks in the IOM report is that heavy-weight validation of the biomedical nature of the illness.
Homeopathy didn't get a mention in the IOM report.
 

Large Donner

Senior Member
Messages
866
Just to clarify, I raised this discussion point in order to decide how to approach the claim made by the Lancet editor. I am not "taking sides in whether the PACE trial BPS crowd did or did not pave the way for the IOM with discussion behind the scenes". That's not my point.

Its down to the Lancet and the BPS/PACE school to clarify the aforementioned claims. Either it is provable delusion on behalf of the Lancet editor or it has to be validated, especially the issue of behind the scenes discussions happening with presumably the BPS PACE school.

If such discussions happened who was involved and why was it done behind the scenes and is there and transcript/notes taken etc, and if not why not.

If there is continued insistence that the original claim is true without any further information then surely the "behind the scenes parties" need to be addressed and they need to clarify what their purpose was. If PACE "paved the way for IOM "inspite of its original critical acceptance" then presumably its because the PACE trial authors realised the error of their ways off the record and went to the IOM to say, "we are a bunch of idiots and have been deluding everyone with dubious BPS claims for years can you finally sort out the S*** we have caused?

Or maybe its just all provable delusion in the absence of suitable answers by the Lancet editor!!