Norwegian professor in biology supportive of PACE

[TiredSam]

Once again we are seeing an ME patient-shamer create publicity and an opportunity for a well-reasoned and informative response which makes them look like the deluded ME denier they are and impressively sets the record straight for the readers. The old 1 2 again, and straight into the back of the net. I've never really been into football, but ME football is starting to look like a fun spectator sport, especially when our opponents start each attack by shooting themselves in the foot.

 

[Kalliope]

@Kalliope, @deleder2k (and others here), your Norway is really quite an amazing country. The stories you tell us about ME paint a picture of a government that is genuinely open to debate, and a journalistic culture which actually works. Your small country seems in many ways a model for the rest of the world!

Well, as citizens of a small country most people in the world has never heard of, we tend to be very open to recognition and flattering. So thank you!

And you are right. There are some promising things happening here. But on the other hand, LP has had en enormous success in Norway and a lot of health care workers recommends it. I even saw the other day a GP on twitter referring to an LP-coach as a "specialist".

There is a national ward for ME/CFS. When it startet up a few years ago, 20 beds were promised. Now there is one. And most of the people working there supports the psychosomatic approach to ME. Guess who they recently invited to Oslo in order to speak about severe ME? Trudie Chalder...

The Norwegian Directorate of Health really tried to make a guide on ME for health care workers, but the psychosomatic lobby managed to make it more or less useless.

One of the researchers/doctors who has received most funds for research projects, is still convinced that ME is a stress disorder. He is an authority on the disease for children and young adult patients.

At Haukeland University Hospital some doctors went through the assessment to a bunch of ME-patients, and found that only 2 out of 10 had the correct diagnosis. They still concluded that GPs should continue to diagnose ME, not specialists in hospitals.

.. and that was just a few things from the top of my head. There is still a long way to go..

 

[deleder2k]

"The biological challenge of myalgic encephalomyelitis/chronic fatigue syndrome: a solvable problem"

I wonder what Gundersen will say when he sees this. "Patient activists" are co-authors. Can "ME activists" really contribute with anything except unneccesary noise? While reading the fabulous article done my members of PR, think of what Gundersen wrote about patients and how dangerous it is to let them contribute with anything. Bizarre.

 

[deleder2k]

@Jonathan Edwards appears yet again in a Norwegian newspaper. He answers Gundersen brilliantly:

http://www.aftenposten.no/meninger/...-vitenskap--Jonathan-C-W-Edwards-8451208.html

 

[Bob]

@Jonathan Edwards appears yet again in a Norwegian newspaper. He answers Gundersen brilliantly:

http://www.aftenposten.no/meninger/...-vitenskap--Jonathan-C-W-Edwards-8451208.html

Google Translation:
https://translate.google.co.uk/translate?sl=auto&tl=en&u=http://www.aftenposten.no/meninger/debatt/Skepsis-er-grunnleggende-i-vitenskap--Jonathan-C-W-Edwards-8451208.html

(Not the best of translations!)

 

[Bob]

Thank you, Jonathan. Great letter! I'd love to read the English version if you're able to share it.

 

[Marky90]

Just awesome.

 

[mango]

Brilliant! Thank you so much for doing this, @Jonathan Edwards! This and everything else. You are warmly and highly appreciated.

 

[Sasha]

Google translate has this starting:

"I have noted with interest reading ignorance article by Professor Kristian Gundersen..."

 

[Bob]

Google translate has this starting:

"I have noted with interest reading ignorance article by Professor Kristian Gundersen..."

Ha! I thought it meant "the ignorant article" but actually the Gundersen article is titled "ignorance".

 

[deleder2k]

I am sure that @Jonathan Edwards can share his response in English.

The first paragraph goes like this:

I read with interest the article by Professor Gundersen on the problems of patient participation in research, giving the example of ME. Dr Gundersen is right that patients may support poor projects, and gives a good example. However, his second example (PACE) shows the dangers of the argument.

 

[Forbin]

Funny... Google translates the last line as:

"An open debate can be noisy, but it's no better way to stick sharpened at."

But I think http://translation.babylon-software.com/norwegian/to-english/ comes a wee bit closer with:

"An open debate can be noisy, but there is no better way to keep you on your toes."

 

[Jonathan Edwards]

I think this was the last English version.

Dear Sir or Madam,


I read with interest the article by Professor Gundersen on the problems of patient participation in research, giving the example of ME. Dr Gundersen is right that patients may support poor projects, and gives a good example. However, his second example (PACE) shows the dangers of the argument.

The PACE study, which claimed cognitive behavioral therapy and exercise therapy to be good for ME, did appear in a ‘top’ journal. But quality is content, not cover. The Lancet has already made two major blunders in recent years. PACE has received a lot of criticism, not just from patients, but also senior scientists who find the trial of such poor quality as to be uninterpretable. I am one of forty scientists who, co-ordinated by David Tuller, have written to the Lancet to indicate concerns.

Many of these scientists became aware of problems with the trial from analysis by patients - notably Thomas Kindlon. Patients are leading the agenda here. The study was ‘open’, or unblinded, and used subjective endpoints. Blinding is needed to avoid bias from subjectivity and this type of design is no longer held valid in other medical fields. (In simple terms, patients say what they think the therapist wants to hear.) PACE had objective endpoints but these showed no useful effect. There were many other problems, with changes in recruitment criteria, outcome assessments, and definition of ‘recovery’. Most strangely, patients were told which treatments were best and had a newsletter saying how satisfied some were with treatment – as if trying to bias the outcome.

Dr Gundersen suggests that a campaign from 11,000 people might not be in pursuit of truth, but are more people likely to have worse motives? Nobody profits from a critique of PACE. I am retired and simply interested in what may help patients. If patients have robust evidence for poor science I support them. People are rightly angry because PACE is being touted as a basis for care. The idea of an undeserved attack is, I think, a myth, from the supporters of PACE and the Lancet editor, who seems to have forgotten that critique is a basic right in science – in fact the lifeblood.

I applaud Dr Gundersen for raising a complex and difficult issue, but his example shows how easy it is to underestimate patients. In ME, they are way ahead. The Norwegian Government has made a good decision. Norway is already a champion for people with ME, in epidemiology and immunology. Free debate can be noisy, but there is nothing better to generate ideas.


Yours sincerely,

Jonathan CW Edwards

Professor Emeritus

Department of Medicine

University College London

 

[deleder2k]

Thanks again, @Jonathan Edwards.

This is what the print version (page 9, debates and ideas) look like:

Your response is next to a chronicle about upbrining in a Christian denomination and immigration.

 

[Kati]

Thanks again, @Jonathan Edwards.

This is what the print version (page 8, debates and ideas) look like:

Your response is next to a chronicle about upbrining in a Christian denomination and immigration.

Fantastic!

 

[BurnA]

So there were no sharpened sticks mentioned?

 

[deleder2k]

Professor Gundersen responded @Jonathan Edwards in Sunday's paper:

I translated it, but I haven't proofread it. Please ask if something is unclear.

ME debate: Healthy or selective scepticism?

I thank Professor Jonathan C.W. Edwards, because his comments on May 1 let me emphasize that ME patients should be able to participate in the scientific debate with regards to their own disease. Their arguments must be considered in the same way others are, and patients must bear to be contradicted without feeling offended.

Of course it is legitimate to criticize the PACE trial, but the coordinated criticism Edwards says he is part of is partly unreasonable and is also mixed with personal attacks. Edwards writes for example that for received "newsletter saying how satisfied some were with treatment – as if trying to bias the outcome”. If he believes that scientists have deliberately cheated, he should say it straight out instead of implying it.

Edwards should know that PACE authors themselves say that they were very conscious of not affecting the participants, and the newsletter was a neutral encouragement to all the subjects to continue in the study, including the participants who received treatments the ME organizations are supporting.

There are several similarly good responses by the authors, but critics do not modify their criticism through debate, they just repeat it. Edwards presentation of PACE the study, and its status is therefore misleading.

Kristian Gundersen

Professor of Biology, University of Oslo

 

[worldbackwards]

Of course it is legitimate to criticize the PACE trial, but the coordinated criticism Edwards says he is part of is partly unreasonable and is also mixed with personal attacks. Edwards writes for example that for received "newsletter saying how satisfied some were with treatment – as if trying to bias the outcome”. If he believes that scientists have deliberately cheated, he should say it straight out instead of implying it.

Prof. Edwards cannot know whether this is the case, he can only give his impression. If he were to call them liars, then that would be a personal attack and Gundersen would be the first to jump on him.

Edwards should know that PACE authors themselves say that they were very conscious of not affecting the participants, and the newsletter was a neutral encouragement to all the subjects to continue in the study, including the participants who received treatments the ME organizations are supporting.

There are several similarly good responses by the authors, but critics do not modify their criticism through debate, they just repeat it. Edwards presentation of PACE the study, and its status is therefore misleading.

The fact that they say it was neutral doesn't make it true. The fact that they pushed certain treatments as being 'safe and effective', chosen for use by NICE, etc, suggests playing favourites. If the response fails to address the significant points, what more can critics do than repeat their criticism, in the desperate hope that, some day, someone might actually give them an answer that doesn't completely evade the issue?

 

[deleder2k]

The most essential thing here is that the critique is legitimate. The authors have not released the data, nor have The Lancet (or others) retracted PACE. That is why the critique has to be repeated.

Gundersen is reassured by the authors of PACE. Because the authors say that the newsletter was not intended to bias the result, then we should trust them(?). What they say about their intention is not very interesting in this matter. The question is whether the newsletter could or did bias patients - not what their intention were!

 

[Esther12]

LOL.

So was Edward's comment too much of a personal attack, or not enough of one?

I wonder if Gundersen has actually looked at the details on this. It sounds like he hasn't.