Discussion in 'General ME/CFS News' started by Andy, Jun 19, 2018.
Mike Godwin has signed this
Interesting, as an attorney he probably doesn't want to lose his license by parroting alternative facts.
I think we should start a betting pool on how quick it will be and how accurate. My money says not very, though i hope to be wrong.
Where should the betting pool money go, David Tuller, OMF, Millions Missing?
Did no-one from AfME want to sign it? @Action for M.E. ?
I still think that without any valid objective measures, re-analysis is almost completely pointless, as it will only repeat the errors that were made during the trial.
What is needed is an inquiry - one that has the power to contact and re-interview all the participants, to find out exactly how much harm has been done.
was there ever a response to the 2016 letter?
I assume that is what's being requested, eg my emphasis: "Subsequently, in February of 2016, many of us signed an open letter to The Lancet requesting an independent investigation of the study."
This sentence could make that less clear, but I can't imagine anyone at the Lancet would think that they could just get away with looking at the data and ignoring all of the other problems around the trial: "Given the worldwide impact of PACE, we urge The Lancet to do what the open letter two years ago requested: commission an independent re-analysis of the individual-level trial data, with appropriate sensitivity analyses, from highly respected reviewers with extensive expertise in statistics and study design."
The list of signatories is quite stunning.
Nicely timed. It can be referred to during the debate at Westminster on Thursday .
My guess would be that there are relatively few new signatories to this, as there is a note of thanks to Mary Dimmock right at the end
so I'm guessing they just contacted those who signed previously.
Given that they managed not to sign the first one, even if they were contacted I'm sure we would have got sufficient dragging of feet from them so that they missed the deadline, as they did previously.
Indeed, but does anyone on our side know about this new open letter?
Are there any S4ME members who can contact any of them and let them know of it?
> And while the PACE trial claimed that GET is safe, AHRQ found that the therapy was associated with more adverse events.
i knew that ahrq downgraded the evidence, but i did not know about the adverse events.
can this be used?
I haven't tried to compare all of the names side-by-side but I did notice that Dr. Derya Unutmaz of The Jackson Laboratory for Genomic Medicine was new to this letter. The previous letter preceded the grants made to Dr. Unutmaz and his lab for the study of ME/CFS which were made by the NIAID and NIH in 2016 and 2017 respectively.
Dr. Unutmaz has made a very positive impression on me in the talks I've seen posted on the internet about his ME/CFS work.
I was wondering the same thing. I found this:
I've sent an email to a contact at MEAction UK highlighting it.
The idea is to re-post the letter in the near future with organizations added. So Action For ME will have a chance to decide along with other groups whether it wants to add its name. I will be curious what they decide to do.
In terms of the goal of the letter--I wouldn't say that getting The Lancet to actually do some sort of investigation is the goal. I mean, that would be nice, but it's unrealistic--it's clear that Richard Horton is not capable of acting with integrity on this issue. So from my perspective the larger goal is to provide Carol Monaghan with more backing when she talks in Parliament. It's to influence the GP association in Australia that has refused to review its guidelines and still recommends CBT/GET. It's to demonstrate to the health officials at the CDC what it means to take a stand on an issue. It's so patients have a document they can show their doctors and insurance companies when they try to insist on CBT/GET. Etc.
I want to see the correlation calculations between the subjective self-report and the objective outcomes. That is what will seal the deal.
That would be interesting.
Yes, it would be brilliant for this purpose, but a printer friendly pdf may be a better format. Is it possible to attach such to the blog?
You could always just copy/paste and then format it however you think would suit you best.
Separate names with a comma.