David Tuller: Trial by Error Cont'd: The New Fitnet trial for kids

[Dr Speedy]

Kristian Gunder is in bed with Henrik Vogt who is in bed with Wyller, the Norwegian Wessely ...

 

[worldbackwards]

Kristian Gunder is in bed with Henrik Vogt who is in bed with Wyller, the Norwegian Wessely ...

There's an image I could have done without.

 

[Countrygirl]

Did Crawley and her group attend IACFSME? Why not? Ah, too far...
.

Wasn't this the meeting Sonia was sent to with the help of a donor to try to persuade Vicky Whittemore to join with MEGA? Hopefully VW had more sense.

 

[Tom Kindlon]

https://twitter.com/i/web/status/801143752039534592

 

[Tom Kindlon]

https://twitter.com/i/web/status/801148969787228160

https://twitter.com/i/web/status/801151637435752449

https://twitter.com/i/web/status/801155299654692865

 

[AndyPR]

A telling comment (I've edited for ease of reading).

I inadvertently joined Esther Crawley's Patient Advisory Group last year, not knowing anything about her or PACE, after my teenage daughter collapsed with ME. I had ME myself twenty years ago, and her father has Ankylosing Spondylitis, a rheumatic auto-immune disease. It has always struck me how very similar many of the symptoms are, including the fatigue, which has kept him off work for several years at a time during his working life, and the up-and-down nature of the illness.

Although I'm not a medic, I am an academic, and I was interested to meet Esther; when she claimed that most children and young people got better within 6 months, I asked her if she checked how well they were in the months and years after that. She swept away my question by saying that she clearly didn't have the funding to contact people after the end of the study. I thought this odd. My daughter felt better after 6 months, but much, much worse after 8. She has now been housebound for 18 months, and too ill to continue her education.

I also asked Esther about the rituximab trial in Norway which I had read about in the New Scientist with real excitement - as my husband is on a similar immune-suppressant which has made a huge difference to his health, I could completely understand that this might be a breakthrough. In response Esther was completely dismissive of the trial itself, making very strong statements about the dodgy nature of the methodology of the investigators involved, and suggesting that this was the general view of the scientific community. How interesting to discover later, then, that very similar aspersions had been made about her own work.

As an academic under increasing pressures to get funding and grow my international reputation and evidence of 'impact', I can understand Esther's hard work to convince society of the effectiveness of her research through the media. I don't, however, forgive her for her ability to suspend her morals by dismissing all evidence which suggests that she is wrong. As Karl Popper pointed out, we should all be trying as hard as we can to disprove our hypotheses, as only then can we hope to prove them.

 

[Cheshire]

I also asked Esther about the rituximab trial in Norway which I had read about in the New Scientist with real excitement - as my husband is on a similar immune-suppressant which has made a huge difference to his health, I could completely understand that this might be a breakthrough. In response Esther was completely dismissive of the trial itself, making very strong statements about the dodgy nature of the methodology of the investigators involved, and suggesting that this was the general view of the scientific community.

I don't know if I am to laugh or cry.

I'd like to know if Holgate (and all the other members of the CMRC) shares her view.

 

[worldbackwards]

Not particularly surprising. All that's left is mud slinging, so why not sling mud?

 

[Large Donner]

Kristian Gunder is in bed with Henrik Vogt who is in bed with Wyller, the Norwegian Wessely ...

Didn't they have a conference recently.....

 

[Jo Best]

I don't know if I am to laugh or cry.

I'd like to know if Holgate (and all the other members of the CMRC) shares her view.

I don't know what he thinks about the quality, but he said this -

Professor Stephen Holgate of the MRC has publicly stated the following -

“Take Rituximab – suppose it turned out in most cases to be negative, but perhaps 10% might benefit from it? You could be missing a fantastic opportunity for that minority".”

We agree.

(source - http://investinme.org/ce-news-1611-03.shtml )

 

[Jo Best]

A telling comment (I've edited for ease of reading).

Reply -

Hi Alice, firstly, sorry about your daughter's illness and wishing her well. That's quite incredible (though sadly not surprising) to hear that Esther Crawley was casting such aspersions on the work of the Norwegian rituximab researchers, as they are among the most highly esteemed researchers in the world for their work on ME/CFS. With regard to UK, a rituximab trial is planned to take place in Norwich (the base for the Invest in ME Research Centre of Excellence for ME) and Dr. Fluge is visiting Norwich in January to discuss and will also give a lecture http://investinme.org/ce-news-1611-04.shtml

ETA - link to news on UK ritux trial - http://www.investinme.org/IIME-Newslet-1611-03.shtml

 

[Jo Best]

Dr. David Tuller explains why 'many oppose MEGA'
(source - https://www.change.org/p/opposing-m...idence-in-mega-research-for-me-cfs/u/18554906)

22 NOV 2016 — David Tuller, PhD, is academic coordinator of the concurrent masters degree program in public health and journalism at the University of California, Berkeley. He has kindly hyperlinked to our Opposing MEGA petition in his latest article about ME/CFS research - Trial by Error, Continued: The New FITNET Trial for Kids. Dr. Tuller is renowned for his outstanding in-depth analysis of the PACE trial, posted in full on Professor Vincent Racaniello's Virology Blog. He wrote -

"Dr. Crawley is a professor of child health at the University of Bristol. She is also currently recruiting for the MAGENTA study of graded exercise therapy for children with the illness. She is a lead player in the U.K. CFS/ME Research Collaborative, an umbrella organization that is sponsoring an ambitious Big Data effort called MEGA, now in the planning stages. While patients and advocates are desperate for the kind of top-notch biomedical and genetic research being proposed, many oppose MEGA precisely because of the involvement of Dr. Crawley and Peter White, the lead PACE investigator. (Dr. White is reportedly no longer involved in MEGA; Dr. Crawley still definitely is.)" Read the full article here - http://www.virology.ws/2016/11/21/trial-by-error-continued-the-new-fitnet-trial-for-kids/

A commenter on the article wrote,
"You may be interested to this blogpost, David. https://opposingmega.wordpress.com/2016/11/19/dr-keith-geraghty-comments-on-opposing-mega/
It ties in nicely to what you are saying. Same group of people involved."

The blogpost referred to contains a shocking account of how one junior researcher joining the UK CFS/ME Research Collaborative (CMRC) has been treated by the CMRC.

By late afternoon 23rd November, our Opposing MEGA counter-petition will have been open for the same number of days as the MEGA petition (which closed on the evening of 2nd November).

MEGA has 2543 signatures (less than when it closed as it is possible to unsign a petition after closing). Opposing MEGA has already exceeded that, and will remain open to sign, but it would be good to reach 3,000 by the end of the day on 23rd November - https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

We very much appreciate everyone taking the time and trouble to look into the very serious issues raised by the opposition to MEGA and will endeavour to keep our website updated with developments -
https://opposingmega.wordpress.com

Thanks to all supporting in whatever way.

p.s. An excellent article on ME/CFS by David Tuller was published last month, 'Worse Than the Disease' - http://undark.org/article/chronic-fatigue-graded-exercise-pace

 

[slysaint]

"Esther was completely dismissive of the trial itself, making very strong statements about the dodgy nature of the methodology"
it takes one to know one

 

[Valentijn]

"Esther was completely dismissive of the trial itself, making very strong statements about the dodgy nature of the methodology"
it takes one to know one

Except in this case, the methodology of the Rituximab trial was not flawed. So I think this is more a case of "Whoever smelt it, dealt it"

 

[trishrhymes]

A telling comment (I've edited for ease of reading).

Please, somebody, send this mother's story to Holgate. It shows with chilling reality that Crawley is a very very bad scientist and a danger to children.

 

[Sidereal]

Astonishing comment by Creepy.

 

[alex3619]

It is difficult to get through with criticisms when people trust the "objective" academic process and institutions in such extent it becomes naive. Here, as example, a tweet from a professor in biology discussing PACE with Tuller.

https://twitter.com/i/web/status/723742528642666496

It is unscientific to make the kind of comment by Kristian Gundersen:

if the PACE flaws are so strong & clear, evaluators will see it, why scream and yell at people?

If he wanted to act from a scientific perspective he would check the facts and answer David Tuller based on the facts or reasoning. Instead he chastises without regard to evidence or reason. He does not address the issues. This is not science. Its politics.

 

[Jo Best]

Please, somebody, send this mother's story to Holgate. It shows with chilling reality that Crawley is a very very bad scientist and a danger to children.

Doesn't it also show Stephen Holgate in a similar light though by not only condoning Esther Crawley's research but being very proactive about supporting, enabling, speaking highly of it to the media, and being generally very impressed by Esther Crawley, as well as being a friendly colleague of Peter White and seeking Simon Wessely's advice. He has been directly involved in ME/CFS research for many years and cannot be blind to all the critics. It also calls into question whether those representing the patient organisations in CMRC are naive or compliant or complicit.

 

[Jonathan Edwards]

"Esther was completely dismissive of the trial itself, making very strong statements about the dodgy nature of the methodology"
it takes one to know one

If this is true it is of concern. The methodology from Norway is exemplary. Perhaps even more important the Norwegians are very happy to admit that their results may not show any true effect. They have pointed out that their primary endpoint was not met at phase 2 and that the phase 3 trial is an attempt to replicate a possible effect based on the 6 month analysis. They are entirely honest about their work. This is in stark contrast to the way research on CBT has been presented in the UK.

 

[Cheshire]

If this is true it is of concern. The methodology from Norway is exemplary. Perhaps even more important the Norwegians are very happy to admit that their results may not show any true effect. They have pointed out that their primary endpoint was not met at phase 2 and that the phase 3 trial is an attempt to replicate a possible effect based on the 6 month analysis. They are entirely honest about their work. This is in stark contrast to the way research on CBT has been presented in the UK.

Yes, on one side we have Esther Crawley who wants to prove, by any means, that her "treatment" works and does not hesitate to twist the facts.
And on the other side, a couple of researchers who want to know how best they can help patients, and ready to throw away any attempt that would be proven useless. The contrast is blatant...