Dutch journalist asks about pwME's objection to CBT/GET

Precisely this.

It's predictable how the story will continue: that there were some shortcomings in the PACE trial, but these would not invalidate that psychological factors played a role in ME; there might be biological factors, but these are not understood yet; that some patients improved with CBT; that warnings against CBT /GET would prevent sufferers to try it, would even scare them, would be respsonsible for their deterioriation, would drive patients to try unproven biomedical treatments instead, these would deterioriate the patients' condition even further caused by more awareness of symptoms coupled with increased health anxiety....

I'm sorry for all who spent time and effort giving valuable information that was dismissed or misinterpreted by the Dutch journalists.

(ETA: I will take a forum break for a couple of days so won't be posting how the series actually will go on.)

 

Exactly!!!!!

 

Just one single very short break today from my forum break.

https://translate.google.com/transl...t-een-controversiele-wetenschappelijke-studie

They don't like David Tuller , and give Michael Sharpe plenty of space:

https://translate.google.com/transl...naar-mecvs-na-intimidaties&edit-text=&act=url

(I will have to stay away also from twitter for one or two weeks. So I wlll be really off the forum for a while.)

 

not sure if this has been posted but de Monitor seem to have a presence on this site:
https://mecentraal.wordpress.com/tag/de-monitor/

(nb: have not looked into it and the translation of it is pretty bad on Yandex)

 

Lots of the Monitor's articles [through google translate] say that the Dutch patient groups are calling for CBT/GET to be banned, rather than for patients to be informed that there is no good evidence that these are effective treatments, or for spending to be invested elsewhere. Is this right? If that is the case, I think that it's a bad idea to call for the banning of CBT/GET, especially when so much quackery is currently legal.

 

New article on patients calling for changes to the guidelines seems to actually present patient groups as just calling for CBT/GET to be removed from the guidelines:

https://translate.google.com/translate?hl=&sl=nl&tl=en&u=https://demonitor.kro-ncrv.nl/artikelen/bezorgde-patientenverenigingen-pleiten-bij-minister-voor-nieuwe-aanpak-mecvs

That's very different to calling for them to be banned. If patient groups' position has been misrepresented by De Monitor (I cannot be sure on the exact words in Dutch) then I think that they should complain about this.

 

No coincidence then that De Monitor start asking for info re PwMEs objections to GET and CBT a few days before they spout forth about poor harrassed Professor Sharpe walking away from ME (he would maybe say CFS..?) research; because the nasty patients have been so mean to him.

 

New article on a doctor called Frans Visser: https://translate.google.com/transl...ekenen-op-grote-steun-van-patienten&sandbox=1

I don't know about Visser, but once again there's an attempt to present everything through a 'psych vs bio' lens.

Also, apparently their programme was on at 9:25 - anyone see it?

 

Think i'm going to throw up.

Uhm, what does it matter that you've found 5 people who claim to have been helped by CBT?

I am sure we can find thousands who claim they have cured their chronic illness with magnets, prayers or homeopathy. Does this say anything at all about the validity of these treatments?

What sort of garbage journalism is this.


Importantly, this piece again illustrates why it's so important to stand firm on the fact that CBT and GET does not seem to help anyone, instead of offering concessions.

Visser seems to think that some patients might be helped by CBT and GET. But looking at PACE and other studies it's quite simple. There's not any evidence that any of the patients actually get better.

The response to why ''some might improve'' or ''some claim to have improved'' should just always be met by referring to the fact that well, according to the scientific studies available at the moment, there simply is no evidence that CBT / GET can help patients with ME/CFS.

 

I'm not sure if this is included in the above:

There are additional texts to the TV-programme on CFS being broadcasted yesterday in The Netherlands.

The TV-programme itself (in Dutch) is available at

https://www.npostart.nl/de-monitor/04-09-2018/KN_1701112

Here are the Google-translations from Dutch to English...

https://translate.google.com/transl...topt-met-onderzoek-naar-mecvs-na-intimidaties

https://translate.google.com/transl...arts-kan-rekenen-op-grote-steun-van-patienten

https://translate.google.com/transl...pleiten-bij-minister-voor-nieuwe-aanpak-mecvs

https://translate.google.com/transl...t-een-controversiele-wetenschappelijke-studie

https://translate.google.com/transl...an-het-werk-na-controversiele-gedragstherapie

https://translate.google.com/transl...volen-behandeling-mecvs-na-klachten-patienten

https://translate.google.com/transl...min-het-gros-van-de-tijd-lig-ik-helaas-in-bed

https://translate.google.com/transl...igt-niet-in-een-rolstoel-door-gedragstherapie

https://translate.google.com/transl...therapie-die-mecvs-patienten-wordt-aangeraden

 

I don't think these broadcasts can be viewed from outside the Netherlands?
And it's all in dutch obviously.

I watched it yesterday. It's pretty bad journalism.
As always Teun van de Keuken is asking all the wrong questions to the wrong people.
He's been doing that a lot in other episodes of The Monitor, and another program he participated in called "Keuringsdienst van Waarde".
I wish we had better investigative journalists covering complex issues like the ones he so poorly tries to address.

Episode ended with this:

Female patient who had made a tremendous recovery with cbt / get, (she was about to completely redo her garden, could work again, etc. etc.)
she did not understand why patients are making such a big deal of this therapy and are fighting this approach.

Journalist (Teun van de Keuken) than puts these exact words in her mouth:

Actually you are saying: I wish this therapy for all patients suffering from this illness?
She answers: Yes and especially a recovery like this. That would be the most beautiful thing you could wish for anyone.


The end.

 

Thanks @Mattie - all of the coverage leading up to the programme made it seem like it would be rubbish. It was really worrying to me that they seemed to think it was not a journalists role to dig into the evidence. This approach of just creating stories that appeal to peoples' prejudices is likely to harm a wide range of marginalised groups.

 

De Monitor response to criticism: https://translate.google.com/translate?sl=auto&tl=en&js=y&prev=_t&hl=en&ie=UTF-8&u=https://demonitor.kro-ncrv.nl/artikelen/de-monitor-reageert-op-kritiek-uitzending-mecvs&edit-text=&act=url

"But first of all a response to the most frequently accused reproach: The Monitor finds ME / CFS a psychological illness. That reproach is wrong, because it is not right. We do not claim that it is a mental illness."

What is going on here?

Are they lying, or are most Dutch patient advocates idiots? The most common criticism I've seen of De Monitor is that they failed to look carefully at the evidence and failed to challenge authority figures who were misrepresenting the evidence.

"What is true is that we have not found sufficient reasons to ban the current preferential treatment according to the guideline (cognitive behavioral therapy, CBT), the same position as the Health Council earlier this year in a report on the disease."

Previously they've presented patients as calling for CBT to be banned for ME/CFS, but then in their quotes from patient group, they were merely calling for them to be dropped from the current treatment guidelines. Is it true that patient groups are calling for CBT to be banned? If that is true, then I think that is a mistake, although I do think that therapists should have a responsibility to make it clear to patients that there is no good evidence to show CBT is an effective treatment for ME/CFS. If De Monitor are misrepresenting patient calls for CBT to be dropped from the ME/CFS guidelines as a call to ban them, then that is a serious problem.

"We are careful about the strength of the scientific evidence for the therapy and how many people it helps. But that nuance is lost in the debate with a number of critics. On social media, these types of questions are black and white for a number of people, and for a small group they are also right-wrong."

They were not remotely careful about 'the strength of the scientific evidence for the therapy and how many people it helps'. Some issues are black and white. The way results for 'recovery' have been spun, results that De Monitor presented to readers without explaining the spin, is a black and white issue. Being ill-informed is not the same as taking a nuanced position.

In an earlier article De Monitor said: "Clinicians say that one in three patients cures their therapy." - https://translate.google.com/transl...therapie-die-mecvs-patienten-wordt-aangeraden Competent journalists would have examined the evidence for that claim, and if the evidence was lacking, recognised that medical authority figures making false and misleading claims of treatment efficacy is a serious abuse of power.

"Where does the accusation that we claim that the illness is psychological then come from?"

They go on to blather about the misunderstanding the nature of CBT, etc. I'm more interested in literally where the accusation comes from. Who are the patients foolish enough to think that this is the primary problem with De Monitor's coverage?

"Our TV broadcast was about whether it would be wise to remove the treatment from the guideline, as patient associations advocate. "

I thought that they were calling for it to be banned? Which is it?

"We show that the patient lobby is one-sided on this point, but that does not mean that the associations are also one-sided or poorly informed. But, we do let patients who are helped with CBT. We believe that new patients who get lost on the internet and social media in a black and white debate should also be told about the shades of gray."

Great - the awesome nuance of anecdotes. What amazing investigative journalism. Possibly I'm being unfair on them by responding to goolge-translate - they cannot possibly be this rubbish.

Apparently a letter from letter from Corsius and Van der Zee says that:

"2. 'There is indeed scientific evidence that CBT / GET is harmful'"

[I started reading this De Monitor piece without having read the Corsius and Van der Zee letter, and some of my comments below are based on that initial reading. Having now read it, I think that De Monitor misrepresent important points made in this letter. I cannot tell if this was deliberate and dishonest spin from De Monitor, or if they're genuinely incapable of reading and understanding even simple points. English version of the letter at bottom: https://corsius.wordpress.com/2018/...-artikelenreeks-en-uitzending-van-de-monitor/].

I think that this is a weak and questionable point and it doesn't surprise me that De Monitor disagreed. If advocates raising concern about CBT/GET choose to focus on claims of CBT/GET causing harm then imo they're making their lives more difficult. There is reason for concern about the potential harm for CBT/GET and a lack of good evidence that it's safe, but the evidence of direct harm is still weak (I'd just had a discussion here on this very point: https://www.s4me.info/threads/2-day...at-get-is-harmful-and-is-it-a-biomarker.5622/).

I think that there is a far easier case to be made that the false and exaggerated claims made for the efficacy of CBT/GET are harmful.

Having just looked at the Corsius and Van der Zee letter, I think that their point is more nuanced than I took it to be from De Monitor's article. They are responding to De Monitor's claims: "the article series claims that there is no scientific evidence that CGT / GET is harmful." If it is that De Monitor claimed that there is no scientific evidence of harm, that is going too far. At the moment the evidence is weak, contradictory and uncertain. Saying simply that there is some evidence on one side of a contentious and uncertain matter is quite different to saying that the scientific evidence shows that CBT/GET is harmful.

"What did we do? We dive into the reports. In our search we found no scientific evidence for the harmful effects for cognitive behavioral therapy (and GET)."

They clearly didn't dive into the reports. It was a paddle at most. While the evidence around harm/safety is weak and uncertain, there is some weak and uncertain evidence indicating harm.

"What is striking is that the reports all write it down carefully. How some can only speak in certainty in this debate does not reflect reality."

They had just said: "we found no scientific evidence for the harmful effects for cognitive behavioral therapy (and GET)". That's not a terribly cautious and careful claim to make about the weak, uncertain and contradictory evidence available in this area.

"Well, Corsius has more studies that report damage, such as the studies by Black and Nunez. We can not trace it from Black's 2005 study, but Nunez's study was simply included in the 2017 Cochrane Review . This review is the scientific assessment and summary of the knowledge up until that moment. They conclude, again with due caution, for GET: no worsening of symptoms. 'Patients with CFS can generally benefit from and experience less fatigue after exercise therapy, and there are no indications that exercise therapy could worsen the outcomes.'

Click through also provided this quote from the summary: "Exercise therapy did not exacerbate the symptoms for people with CFS. Serious side effects were rare in all groups, but limited information makes it difficult to draw firm conclusions about the safety of exercise therapy. "

If they're going to cite that Cochrane review they really need to also detail the problems with it, as laid out by Robert Courtney and others in the comments section. They're quite important. Did anyone at De Monitor actually bother to read the review?

"A part of our broadcast was about the tone of the debate. We also wrote an article about it. You only have to watch Twitter to see someone like Sharpe being attacked. We quote a few of them, but Sharpe's Twitter timeline is full of it. The fact that a court would ever have swept away such an allegation as stated by Corsius does not change that. Incidentally, this clearly concerns a very select group of active patients, and we realize that this says nothing about the average patient or activist."

They had a little section on 'intimidation' which seems to confuse criticism and exasperation with intimidation. They don't seem to like that fact that lots of people think they are poor journalists.

Lucibee found their examples of 'intimidation' on twitter:

https://www.s4me.info/threads/profe...intimidation-m-sharpe.5593/page-2#post-101523

No doubt the De Monitor's editors will consider my honesty about this some form of harassment, but I have to say that it truly disgusts me to see such an expectation of deference from 'journalists'.

"That Wessely and Sharpe specifically accuse 'patients' of intimidation at De Monitor, as Corsius writes, is not correct. They do that neither on our website nor in the broadcast."

Their letter did not say that this was done on De Monitor's website or broadcast, so it seems that De Monitor is correcting an assertion that was not made.

"Corsius is particularly disturbed by the success rates of treatment claimed by Knoop: 'According to Knoop, half of the ME / CFS patients are no longer seriously tired after having followed behavior therapy, figures that are not supported by any research group in the world.' Although it is a high percentage (50%), what do these people say? That they are no longer seriously tired. But does that mean that they are all 100% better? No, that percentage is lower. Does that mean that they can do everything again? Not at all. Knoop is also very careful with these figures, since it just depends on which definitions you use for recovery, feeling better, etcetera."

Which people? What evidence is being cited to justify the 50% claim. They're jumping to their attempt to do 'nuance' without providing any evidence to justify the claims being made.

Knoop is very careful with these figures? How can you know that without examining the evidence?

I also have to return to Knoop's claims about recovery in the PACE trial, where he classed people as fulfilling a 'strict criterion for recovery' even when patients could satisfy this criteria even after worsening from when they started the trial on every outcome measured:

"PACE used a strict criterion for recovery: a score on both fatigue and physical function within the range of the mean plus (or minus) one standard deviation of a healthy person's score. In accordance with this criterion, the recovery rate of cognitive behaviour therapy and graded exercise therapy was about 30%—although not very high, the rate is significantly higher than that with both other interventions."

https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60172-4/fulltext

Very careful.

Knoop is very careful. LOL.

"Corsius continues: "Throughout the Netherlands, people now read that half of the ME / CFS patients get better if they start thinking or moving differently. We deem the Monitor partly responsible for the incomprehension and psychological suffering that ensues from this. ' According to this reasoning of Corsius you can not allow advocates of CGT to speak because this can lead to misunderstanding and psychological suffering. We dissociate ourselves from that."

I'm pretty sure De Monitor have misunderstood/misrepresented Corsius's reasoning there.

De Monitor:

"5. 'ME / CFS is not a psychogenic disorder'

Here, Corsius addresses a relevant theme, namely that of incomprehension and stigmatization, because the disease became psychogenic and is labeled. But why is a potentially psychogenic cause accompanied by misunderstanding and stigmatization? The Health Council makes the same observation as Corsius: 'Many doctors have prejudices about the ME / CFS disease and about the patients who suffer from it. They tend to interpret the illness psychologically. As a result, patients do not experience empathy from their doctor and do not feel taken seriously, which does not benefit their health and reinforces their social isolation. ' This is outrageous of course. Are complaints less real, do we have to take them less seriously, if there is a psychogenic cause? We do not make any statement about the cause."

The letter:

"ME / CFS is not a psychogenic condition

In another article De Monitor claims that the cause of ME / CFS can be psychological. However, the 2015 NAM report explicitly warns of “the misconception that it is a psychogenic illness”. The CDC writes: “ME / CFS is a biological illness, not a psychological disorder”. The Health Council noted that “many doctors and caregivers fail patients with ME / CFS by attributing their illness […] to” psychological “causes. ME / CFS has a long history of incomprehension and stigmatization in which the suffering of patients was incorrectly labeled as psychogenic. We regret that De Monitor wishes to make a contribution here in 2018. The exact cause of MS, Parkinson or Alzheimer’s is also unknown, but it is unfair to label such disorders as psychogenic. With ME / CFS this is no different."

It's hard for me to judge this, as the letter does not quote the claim from De Monitor that they find problematic. Generally, I think it's a mistake to let debates about the problems with misleading claims about CBT/GET get caught up in psych vs bio issues. I don't think that this section of their letter could be used to justify De Monitor's confused focus on these issues.

"6. 'Chronic fatigue is not equal to CFS, and certainly not to ME'

Our file is chronically fatigued and our thought was that "chronically fatigued" would ring a bell in more people than, for example, ME / CFS."

If you're priority is appealing to an audience then sometimes accuracy will suffer.

"7. 'Patients defend science'

It is true that Corsius states that patient associations and scientists are committed to biomedical research and that they work together. This mainly concerns scientists who are on the side of the patient associations and turn against CGT. Patient associations defend science as long as they do biomedical research, not when they state that behavioral or exercise therapy works."

Is there a translation problem, or are De Monitor misrepresenting Corsius again: I saw no mention of 'biomedical' in Corsius's letter. It says: "In short; Instead of opposing science, ME / CFS patients do everything to enable scientific research into their disease."

I get the impression that the people at De Monitor do not understand that criticising poorly designed research with spun results is a vital part of fighting for science.

"After all, for example, how many scientists still support the PACE trial? Those who have little or no criticism of scientific research will not easily write a joint letter. We have not found it in any case."

A lot of people were speaking out in support of PACE back before it was recognised that patient's criticisms were justified. Now, these same people have gone quiet.

" In the summaries of scientific knowledge, such as the Cochrane review, the image, as already outlined above, is a bit more nuanced."

That Cochrane review is not nuanced, it's seriously flawed and misrepresent the evidence in important ways. As anyone who had bothered to read the comments and responses included within it can see.

"8. 'Conflict of interest underexposed'"

Corsius points out the problem with them focusing on potential biases amongst those critical of CBT/GET while downplaying COIs for those promoting CBT/GET. De Monitor's response really ignores this problem:

"Corsius: 'A complete article is devoted to the question of whether patients and their relatives are emotionally competent to question the treatment that causes them harm.' He quotes De Monitor: "At a given point in time, we wondered to what extent you are so emotionally attached to a disease, that it makes sense to study the disease yourself, or to mix in debates about the quality of scientific research. "
It is undeniable that a remarkable number of researchers have a personal relationship to ME / CFS to the disease. The question we ask is therefore a logical one, and, both experts we presented it, found it an interesting and relevant question. That the question arises because all the examples can be found on one side of the debate, works for a number of people like a lap on a red bull. But in a polarized debate this is an obvious question. The conclusion of this article is that on all sides there is always bias, this is fine and as inspiration of research partly necessary, but then independent researchers take the glove."

 

I have not seen any of this and even myself as a vocal critic of their psychosocial BS do not support banning it in any way, simply acknowledging that it has no evidence basis and should not be a recommendation. People should be free to try anything they want, even woo treatment for treatable pancreatic cancer if that is what they want.

The issue is with making official recommendations out of something that is based entirely on untestable assumptions and which multiple trials have confirmed to be no better than placebo, especially when it is being done at the expense of scientific research.

 

https://twitter.com/user/status/1042526030802702337