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Last Build Date: Tue, 20 Feb 2018 18:18:43 -0000

 



Re: Trial By Error: QMUL and FOI; Nature and Cochrane; the Pineapple Fund

Tue, 20 Feb 2018 18:18:43 -0000

The CDC doesn't mention anything about harm from GET. Their silence on the topic has been deafening.

Additionally, NICE continues to recommend GET. So Healthwise can always point to NICE as an authoritative source.

Some things that might change Healthwise's position on GET:
1) NICE stops recommending GET.
2) The CDC publicly takes the position that GET can cause harm.
3) Enough US state departments of health officially take a position that GET can cause harm (so far as I'm aware, only New York has done this).




Re: Trial By Error: A Letter to BMJ Open

Tue, 20 Feb 2018 11:51:38 -0000

gah! at what stage are they going to realise that there are professional standards, and they need to be adhered to.

are researchers in other fields ignoring professional standards also? or is it just hte me/cfs field that's so antediluvian in attitude?




Re: Trial By Error: A Letter to BMJ Open

Tue, 20 Feb 2018 09:13:18 -0000

It's marketing, not research. Everything the BPS crowd publishes is designed to promote their bogus clinics. Here is a typical example from Mark Edwards et al:

"People with these [functional neurological] symptoms are, as a group, as disabled and experience as poor a quality of life as patients with Parkinson's disease or multiple sclerosis.

Despite this, clinical services for such patients are poorly developed..."

http://gtr.rcuk.ac.uk/proje...




Re: Trial By Error: QMUL and FOI; Nature and Cochrane; the Pineapple Fund

Tue, 20 Feb 2018 08:59:20 -0000

Healthwise have a responsibility to clearly describe the known high probability of harm from GET treatments. anything less is deception, and would make them liable for any harm that occurred.




Re: Trial By Error: A Letter to BMJ Open

Tue, 20 Feb 2018 04:20:50 -0000

I shouldn't bother with her David. Normal m.o. from Ellen there - complain nastily about what she is commenting on (normally with a claim that her invaluable work is being ignored by everybody, I'm surprised that is missing there). Shocked that she actually managed three nice words at the end.




Re: Trial By Error: A Letter to BMJ Open

Mon, 19 Feb 2018 18:50:27 -0000

well there is a gay person signing! don't forget that little bit of diversity!




Re: Trial By Error: A Letter to BMJ Open

Mon, 19 Feb 2018 17:09:31 -0000

One woman and one male doctor who knows what real ME is. Not a single disabled scientist. So much for diversity. Lots of white men. But good points.




Re: Trial By Error: QMUL and FOI; Nature and Cochrane; the Pineapple Fund

Mon, 19 Feb 2018 17:03:10 -0000

Maybe the data was on those discs that went missing after a mysterious break in we've heard nothing about since.




Re: Trial By Error: A Letter to BMJ Open

Mon, 19 Feb 2018 16:53:37 -0000

You read, you are stunned, you reread, reflect with the sock of how bad this really is, and you have to wonder how is this allowed to continue.
Keep going David. in the end they will have to change, and not just save face, giving lip service to patient safety.




Re: Trial By Error: A Letter to BMJ Open

Mon, 19 Feb 2018 16:21:17 -0000

I think the ones who really have to worry most, are those who seem to have made a life-style choice of seriously breaking the rules of clinical trials. Rules that really good scientists strive so hard to uphold. Everyone messes up now and again, whereas others seem to make a real habit of it.




Re: Trial By Error: A Letter to BMJ Open

Mon, 19 Feb 2018 16:14:32 -0000

https://uploads.disquscdn.c...
It is truly incredible to see how the medical profession turned a straightforward exercise in attempting to determine the reason for a sudden failure of healthy adults to keep Epstein-Barr Virus under control into three decades of bickering over "tired people"

This must surely be the most outrageously bizarre and widespread act of subliminal medical malice ever perpetrated by a profession that has a long and sordid history of repeatedly doing this kind of thing.




Re: Trial By Error: A Letter to BMJ Open

Mon, 19 Feb 2018 15:54:20 -0000

well, given that the same person came up with the idea, did the evaluations, referred people to her own clinic and had a vested interest in identifying a lot of undiagnosed patients, I'd say there was quite a lot of built-in bias.




Re: Trial By Error: A Letter to BMJ Open

Mon, 19 Feb 2018 15:54:11 -0000

In addition to sick and disabled, they were children. The absolute highest ethical standards must be upheld for medical trials on children.




Re: Trial By Error: A Letter to BMJ Open

Mon, 19 Feb 2018 15:47:41 -0000

That study was very questionable. It was ripe for cognitive bias and false positives.




Re: Trial By Error: A Letter to BMJ Open

Mon, 19 Feb 2018 15:42:41 -0000

Brilliant. The dam must eventually give under this constant pressure of the truth.




Re: Trial By Error: A Letter to BMJ Open

Mon, 19 Feb 2018 14:43:29 -0000

Good work per usual David. Thanks for championing for ME patients, most too sick and disabled to advocate for themselves.




Re: Trial By Error: A Letter to BMJ Open

Mon, 19 Feb 2018 13:48:06 -0000

People better watch their steps, a little slip and you're on the Virology Blog with many PhDs, Drs and profs reading and face-palming.




Re: Trial By Error: A Letter to BMJ Open

Mon, 19 Feb 2018 13:10:55 -0000

Good job fighting against a culture that normalizes mistreatment and devaluation of ME/CFS patients.




Re: Trial By Error: A Letter to BMJ Open

Mon, 19 Feb 2018 13:09:04 -0000

Thank you to all involved in pressing for clarity and honesty from this group of researchers, from the University of Bristol and the Journals that have published this research.

There are historical problems with the methodology and research ethics of a number British academics and clinicians advocating a psychosocial approach to ME/CFS which in itself is worrying, but that the British scientific establishment, both Universities and Journals, are continuing to collude in spreading misinformation to protect these researchers is totally unacceptable.




Re: Trial By Error: A Letter to BMJ Open

Mon, 19 Feb 2018 12:51:04 -0000

The last paragraph is one of the most important.
“In any event, the BMJ Open paper’s detailed description of the data collection for this “pilot clinical service” provides ample evidence that the study was not “service evaluation” but “research.” It is perplexing that the journal has failed to acknowledge this undeniable fact. This pediatric study should not have been conducted, much less published, without a full ethical review. Since it was conducted and published anyway, BMJ Open must now take prompt steps to clarify what happened and address this serious matter in a fully transparent manner.”




Re: Trial By Error: A Letter to BMJ Open

Mon, 19 Feb 2018 12:50:42 -0000

Thanks to both you and your source for bringing this to light!




Re: Trial By Error: A Letter to BMJ Open

Mon, 19 Feb 2018 12:46:29 -0000

It's really good to see both Tuller and Racaniello tightening the screw on this. I'm just pondering to what extent the crescendo of silence from BMJ is being noticed by academics around the world? I assume, given the august list of signatories, this is a story which is not being limited to the usually curious ME Community? Can we presume that to some extent there are mutterings in academia reflecting the perplexed confusion at BMJ's reluctance to capitulate on these matters which is shared by most people with ME? Can we conjecture BMJ as a revered journal is losing some of its gloss?

As usual, thanks to those tenacious patients and researchers rooting around in the small, and not so small, print to uncover these charades.




Re: Trial By Error: A Letter to BMJ Open

Mon, 19 Feb 2018 12:31:05 -0000

David Tuller our terrier for truth! Tenaciously seeking out murky details that certain researchers are trying to obfuscate and conceal. Thank you David for all that you do.




Re: Trial By Error: A Letter to BMJ Open

Mon, 19 Feb 2018 12:22:10 -0000

Here here... excellent. studies like this are unethical and the auteur(s) should be held accountable for their actions. In stead...they are rewarded by publishing and loads of propaganda in the media.
Professor Racaniello , David and all who signed... thank you!




Re: Trial By Error: A Letter to BMJ Open

Mon, 19 Feb 2018 12:12:26 -0000

Great work on this. Glad to see pressure being applied to protect families from ostensibly unethical studies like this.

The BMJ better get their house in order pronto, enough feet dragging, the heat is on.