Guardian Article on NICE pause

[Ariel]

The guidance has not been withdrawn. How can a supposedly serious publication continue to publish articles on important matters in which the basic facts are misstated? A lack of understanding of what has actually happened permeates this whole piece in addition to the other problems and distortions allowed to stand.

 

[Sly Saint]

"Michael Sharpe, a professor of psychological medicine at Oxford University and a principal investigator of the trial, said they used the best criteria available at the time to recruit patients."

that's not strictly speaking true;
"Recruitment of patients began in March 2005"

The Oxford definition was created in 1991 (Sharpe), Fukuda in 1994, the CCC was published in 2003.

(Although they mostly used the Oxford definition, if I remember correctly didn't they have to resort to broadening things still further to include Fibromyalgia patients among others to get the numbers up?)

 

[Barry]

I have emailed Grover with the relevant points. I think I had made them when we had a long telephone call about a week ago, but I realise it takes time for things to sink in and I cannot expect to be treated as Moses with the tablets.

Yes, it does indeed take time for things to sink in. From my own experience, I can be presented with a whole mass of highly salient material, and only so much of it will take hold initially. Not only might there be too much for one education session, but also there is a layering effect - insight into some things can only be gained once other prerequisite insights have been previously gained. Yet a whole lot of both may exist within the one set of material, with no obvious pointers where to start or navigate through. It is one of the reasons I suggested elsewhere that essential for a journalist to segregate out issues of science versus harassment claims, and start with the a rudimentary understanding of the science first

The world of ME/CFS is very much like that - complex, immensely confusing, additionally confused by educators coming at you from all sides and all persuasions. When newcomers are trying to find their way around, the best tactic for Sharpe and Co is probably to try and put them off, by making it look - and maybe luring us into making it look - like we are the argumentative activists he likes to portray as us.

 

[Ariel]

Yes, it does indeed take time for things to sink in.

The author is a "science" correspondent. It is pretty standard in good science coverage that you do not "both sides" the science, whereas that appears to be how the piece was constructed, as a "debate" or "row". There is also a climate change "debate" and a "debate" over whether vaccination is better than covid infection; also on whether long covid is an exaggerated phenomenon. While I understand that much other journalism is structured this way, the author has failed to engage properly with the issues and has not apparently considered the motivations or conflicts of interest of her sources. ME patients are "upset", and that's the frame? It doesn't even explain what PEM is or why they might have concerns. Just still a BPS framed article.

Ignoring post-exertional malaise is not acceptable at this stage - how long is it going to take to sink in? Other publications have managed better.

 

[Barry]

The author is a "science" correspondent. It is pretty standard in good science coverage that you do not "both sides" the science, whereas that appears to be how the piece was constructed, as a "debate" or "row". There is also a climate change "debate" and a "debate" over whether vaccination is better than covid infection; also on whether long covid is an exaggerated phenomenon. While I understand that much other journalism is structured this way, the author has failed to engage properly with the issues and has not apparently considered the motivations or conflicts of interest of her sources. ME patients are "upset", and that's the frame? It doesn't even explain what PEM is or why they might have concerns. Just still a BPS framed article.

Ignoring post-exertional malaise is not acceptable at this stage - how long is it going to take to sink in? Other publications have managed better.

Accepted and understood. Nonetheless, if we do not cut newcomers a little bit of slack, at least initially, it just plays into the BPS crowd's hands, making us look like the stroppy 'activists' they claim us to be. We need to win journalists over.

 

[Jonathan Edwards]

The author is a "science" correspondent. It is pretty standard in good science coverage that you do not "both sides" the science, whereas that appears to be how the piece was constructed, as a "debate" or "row".

I agree but it must bit a bit puzzling that the voices of accepted best methodological practice (Royal Colleges) here are saying that CBT and GET are being unduly criticised.

Where are the rows of academics defending good practice? There's me and Brian, and journalists, lawyers and statisticians, but where are the other physicians? All things considered I get quite a reasonable crack of the whip here.

 

[Robert 1973]

While some patients do not benefit from these therapies, there are others who do, said Trudie Chalder, a professor of cognitive behavioural psychotherapy at King’s College London and another chief investigator of the Pace trial, who has been delivering CBT therapy to such patients for decades.

Patients who get better tended not to be as vocal as those who had had bad experiences, she said.

I wish people would challenge them when they make such claims to ask them what evidence they have to back this up. Given what we know of how the clinics work (with lack of follow up) along with trial results it seems to be a very empty claim.

Prof Chalder doesn’t seem to understand, or chooses to ignore, that it was the results of her own clinical trials that led NICE to conclude that CBT and GET are not effective treatments. In clinical trials, those who get worse or don’t improve are more likely to drop out. It is therefore those who improve who are more likely to be “vocal” in this context.

Further to Adrian’s point – the survey of NHS CFS clinics showed dropout rates of up to 44% with no formal system for recording adverse events (https://journals.sagepub.com/doi/10.1177/1359105319854532).

 

[Ariel]

Accepted and understood. Nonetheless, if you do not cut newcomers a little bit of slack, at least initially, it just plays into the BPS crowd's hands, making us look like the stroppy 'activists' they claim us to be. We need to win journalists over.

Completely agree but I am just despairing basically. Also she is in the position not to be a "newcomer" at all, as this issue with PEM and post-viral conditions has been going on with long covid as well throughout the pandemic. I am disturbed that someone covering these matters under the banner of "science" is repeating this line in August 2021. I think the best thing to do as has already been stated on this thread is not to play into the BPS framing and narrative - unfortunately our advocacy orgs can do this, and it does not help.

To the extent that the focus is not on the (completed) evidence review and on the self-interested and unusual actions of certain members of the Royal Colleges in relation to it, they are winning, as it allows the issue to be presented as a "debate" about whatever murky concepts anyone likes - mind/body connection, etc. They can talk about patients they are "helping" if there is no repeated insistence that there is not sufficient evidence for these claims. The "it helps our patients" line is pseudoscience and quackery, and it's important to help people see through it.

I also know it's hard for people to accept that they may have been misled. I am sorry for despairing but I was hoping for better. I hope the next piece is an improvement.

 

[Barry]

I agree but it must bit a bit puzzling that the voices of accepted best methodological practice (Royal Colleges) here are saying that CBT and GET are being unduly criticised.

Where are the rows of academics defending good practice? There's me and Brian, and journalists, lawyers and statisticians, but where are the other physicians? All things considered I get quite a reasonable crack of the whip here.

Yes, that is a very useful insight into a journalist's perspective.

But you have omitted to mention other scientists. What about some of them?

ETA: I realise you did mention academics. But are there not specific scientists that could be engaged to speak up?

 

[Barry]

I also know it's hard for people to accept that they may have been misled. I am sorry for despairing but I was hoping for better. I hope the next piece is an improvement.

As roller coasters go, this is one of the biggies. There is no choice but to go with the flow, but nonetheless we need to influence the flow as best we can. All we can do is our best. And I am absolutely confident that @Jonathan Edwards and others will be doing their utmost to get some of these journalists up to speed. But it is uphill I do agree.

 

[Ariel]

I agree but it must bit a bit puzzling that the voices of accepted best methodological practice (Royal Colleges) here are saying that CBT and GET are being unduly criticised.

Where are the rows of academics defending good practice? There's me and Brian, and journalists, lawyers and statisticians, but where are the other physicians?

My understanding is that it's only certain members though, and it's possible to see the obvious COI of most of her sources. It's also possible to try to put the CBT/GET issue in context and see why this may have be happening politically.

But yes - where is everyone? (I know some people are on holiday). Where are the other physicians? Is there nobody else who thinks this is wrong?
Is it possible to get anyone else interested who may be able to help?

Edit: again sorry for general despair; I realize this is an improvement and I really appreciate the efforts of all involved. x

 

[Jonathan Edwards]

But you have omitted to mention other scientists. What about some of them?

The issue is clinical trial practice - which is something physicians (or other medical specialists) do. I am aware that scientists have contributed to the background knowledge base but is are scientists actually jumping up and down writing to the BMJ or taking to journalists or otherwise expressing an opinion at this point?

 

[Barry]

The issue is clinical trial practice - which is something physicians (or other medical specialists) do. I am aware that scientists have contributed to the background knowledge base but is are scientists actually jumping up and down writing to the BMJ or taking to journalists or otherwise expressing an opinion at this point?

What about the doctors within DwME, the individuals rather than the organisation?

 

[Stewart]

I agree but it must bit a bit puzzling that the voices of accepted best methodological practice (Royal Colleges) here are saying that CBT and GET are being unduly criticised.

Where are the rows of academics defending good practice? There's me and Brian, and journalists, lawyers and statisticians, but where are the other physicians? All things considered I get quite a reasonable crack of the whip here.

This is definitely part of the problem when it comes to the British media. In addition to the emphasis on reporting rather than journalism and the misguided emphasis on 'balance' there's also a culture of deference that comes into play. I think a lot of science reporters just can't believe that the panjandrums of the British medical establishment would ever knowingly steer them wrong, so they don't feel the need to critically question what these distinguished figures tell them - they just report what they're told.

 

[ME/CFS Skeptic]

Fluge and Mella produced pharmacodynamic profiles for each patient showing progress over time. Although we now know that the responses were spurious (placebo or expectation bias of whatever sort) you can see very clearly that some patients spiralled up to reporting feeling normal and others did not change. For the phase II unblinded extension my memory is that the situation was fairly clearly bimodal, although messily so.

When I was doing rituximab studies I similarly plotted individual patient progress. For some nothing happened. For others there was remission.

I think this would be nearly impossible to do because in a control group there will also be patients where nothing happens and others where there is remission. So any interpretation of the pattern in the intervention group would need to take the pattern in the control group into account.

In this Thread, Caroline Wilshire argued that there probably was no subgroup with a positive effect an a subgroup with a negative effect, because all subgroups tested (including those with more restrictive ME/CFS criteria and those with depression + ME/CFS) showed the same pattern.
https://www.s4me.info/threads/the-d...consultation-june-2018.4697/page-6#post-92365

 

[Jonathan Edwards]

What about the doctors within DwME, the individuals rather than the organisation?

As far as I can see they are getting involved as patients that happen to be doctors rather than as people with specific experience with trials. I am talking about doctors engaging with this purely as an issue of standards in clinical science.

 

[Binkie4]

 

[chrisb]

If only rules of confidentiality didn't preclude the possibility of finding the name of the patient that is believed.

 

[Jonathan Edwards]

What I think is clear from the print version is that the newspaper and its editor really couldn't care a damn what comes out as long as it fits onto the paper neatly. They are quite happy to have different accounts in different presentations.

For all its hi-falutin' do-goodery mission statements the Guardian is the same as the rest.

 

[chrisb]

"The new guidance seen by the guardian..."

Does that indicate that the final version was released to journalists, as usual? Or has it been obtained elsewhere?