David Tuller: Trial By Error: An Open Letter to The Lancet, Two Years On

dave30th said:
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.
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Presumably from this, Carol Monoghan has definitely been made aware of this already?
 
Alvin said:
These are great goals but we would need to make sure Carol and the others know about it so they can use it. Does anyone here know her personally and could forward it to her, and ditto for the other uses?
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This is @Alvin quoting @dave30th .


Andy said:
Following my email to her last night, Sarah at MEAction has replied saying, in part, that she "managed to circulate it to all the MP's that we expect to be there tomorrow, and supporters of Carol's back bench application.".
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NelliePledge said:
Carol M has also tweeted that she is in touch with Dave T
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Have spent an hour with my MP this evening and given him @dave30th latest letter as well as many other briefings. He has adjusted his commitments so as to be there for as much of tomorrow as he can. As I understand it, he wil not make a speech but is familiar (as a former Cabinet Minister) with how to intervene so as to help the process.

I am fed up - will be at the Brompton hospital tomorrow pm.
Is there a link that can be picked up later? Not really fed up. Great progress but would like to be part of it in the moment.

Good luck Carol for tomorrow.
 
Binkie4 said:
This is @Alvin quoting @dave30th .
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Tis true :D


Have spent an hour with my MP this evening and given him @dave30th latest letter as well as many other briefings. He has adjusted his commitments so as to be there for as much of tomorrow as he can. As I understand it, he wil not make a speech but is familiar (as a former Cabinet Minister) with how to intervene so as to help the process.

I am fed up - will be at the Brompton hospital tomorrow pm.
Is there a link that can be picked up later? Not really fed up. Great progress but would like to be part of it in the moment.

Good luck Carol for tomorrow.
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Very glad to hear this. We really need to make the most out of this opportunity and everyone on our side needs to be armed to the teeth (with the truth)
 
Sly Saint said:
can MPs /government officials sign? that is, if their job allows them to.
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That's an interesting question that we hadn't really thought about. For credibility the letter was written for "experts" and "professionals" (doctors, lawyers) but I would think for these purposes being an MP and I guess a government official would qualify as being an "expert." I can touch base with Monaghan and ask her about it.
 
So Carol Monaghan has agreed to add her name to the open letter to The Lancet. She suggested asking the others who also signed the early day motion. I see there are quite a few. Are e-mails of MP standardized? Or is there a list of all MP e-mail addresses somewhere? Thanks!
 
dave30th said:
So Carol Monaghan has agreed to add her name to the open letter to The Lancet. She suggested asking the others who also signed the early day motion. I see there are quite a few. Are e-mails of MP standardized? Or is there a list of all MP e-mail addresses somewhere? Thanks!
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Index of all MPs, each MP page should have a contact email address for the MP - https://www.parliament.uk/mps-lords-and-offices/mps/
 
dave30th said:
So Carol Monaghan has agreed to add her name to the open letter to The Lancet. She suggested asking the others who also signed the early day motion. I see there are quite a few. Are e-mails of MP standardized? Or is there a list of all MP e-mail addresses somewhere? Thanks!
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Brilliant. She is so valuable.

With MPs on our side, it should be easier to pressure the Lancet and organizations in the UK that are still ignoring the problem.
 
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Trial By Error: Yet Another Appeal to The Lancet, With More On Board

Last month, Professor Racaniello sent Lancet editor Richard Horton an open letter about the PACE trial signed by 94 scientists, clinicians, academics and other experts. The letter, a follow-up from one sent in 2016, cited the study’s “unacceptable methodological lapses” and called for a fully independent investigation. Since Dr Horton has not responded, I re-sent him the letter earlier this evening (Monday, July 9, PST). In addition to more experts and ten members of the House of Commons, dozens of organizations from around the world are now also urging The Lancet to take prompt action.
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http://www.virology.ws/2018/07/10/t...ther-appeal-to-the-lancet-with-more-on-board/
 
It's really wonderful to see so many individuals and organisations wiling to stand for good science and better care for people with ME. I'm sure that there's a lot of work embedded in that list, with much time spent liaising with each signatory. Thanks @dave30th, and to all the signatories.

I'm disappointed though not to see the Associated New Zealand ME Society (ANZMES) in the list of organisations. Dave, were they asked to sign or did they need to contact you? Is there any point in me contacting them now to ask if they would sign the letter?
 
Hutan said:
It's really wonderful to see so many individuals and organisations wiling to stand for good science and better care for people with ME. I'm sure that there's a lot of work embedded in that list, with much time spent liaising with each signatory. Thanks @dave30th, and to all the signatories.

I'm disappointed though not to see the Associated New Zealand ME Society (ANZMES) in the list of organisations. Dave, were they asked to sign or did they need to contact you? Is there any point in me contacting them now to ask if they would sign the letter?
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I don't know. Mary was working with the organizations. I assume we didn't know about them--there seem to be a lot of organizations that were not on our master list. sure, contact them, or have them contact me. We can update or repost as needed, I guess, if we get more names.
 
Hutan said:
I'm disappointed though not to see the Associated New Zealand ME Society (ANZMES) in the list of organisations. Dave, were they asked to sign or did they need to contact you? Is there any point in me contacting them now to ask if they would sign the letter?
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I emailed but did not get a reply. Perhaps a bad email. If they send me their email, I'll be glad to update the list
 
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