I think that's a good idea. Also @dave30th if you want more MPs to sign the letter, I'd be happy to try. They're normally very keen to sign things (eg Early Day Motions) as it's an easy way for them to do some virtue-signalling to their constituents. I'm pretty sure the one I was in contact with before the June debate would.
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The Times - Call for review of ‘flawed’ ME research in Lancet letter
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I think that's a good idea. Also @dave30th if you want more MPs to sign the letter, I'd be happy to try. They're normally very keen to sign things (eg Early Day Motions) as it's an easy way for them to do some virtue-signalling to their constituents. I'm pretty sure the one I was in contact with before the June debate would.
I would love to have more MPs. I did a big second e-mail blast to them and didn't get any more, but personal appeals would likely be more effective. In terms of the Times publishing the full letter, I would guess they would feel they did their duty by running the article. But I'll check it out. To run the letter and names would take up space.
Sasha
Senior Member (Voting Rights)
If you would like more MPs - which is a great idea - I'd suggest starting a new thread for visibility and asking people to contact their MP with that request. I'd be very happy to ask that of my MP and I'm sure a lot of other people would to.
It would be helpful to have a form letter for patients to send - a lot of PWME struggle to write things like this because of cognitive problems.
I think a letter with some really big names on - Corbyn, for instance, who was going to speak at the IiME conference this year - might help the letter get published in the print edition. And if not The Times, then any other big UK paper.
Robert 1973
Senior Member (Voting Rights)
I think this is a good idea. If you wrote a short blog asking people to write to their MPs and telling them how to contact you, I’m sure the charities (particularly #MEAction and MEA) would help to publicise it. If we manage to get a debate in the main chamber of the House of Commons this autumn many people will be writing to their MPs to ask them to attend, so this could be added on.
My guess is that Times would be more receptive to a abbreviated version of the letter which linked to the full letter online. They sometimes publish short letters with a few signatories and say see website for full list of signatories.
Barry
Senior Member (Voting Rights)
The full letter would be way over the heads (and therefore interest) of many readers, but I wonder if it is possible to edit it with the strict goal of targeting the 2 or 3 key aspects the signatories are most likely to have signed for (and maybe readers might tune into better), along with the list of signatories. Sort of: This is crap; this is foremost why it is crap; this is why so many people signed it; this is all the people who signed it. The key message is really that it must be crap else all these people would not have signed it, with just enough coverage of that before the list. And of course in a way The Times might actually want to publish.
Maybe we could publish the letter as a large ad in the Times - and/or another paper? I'm sure we could crowd fund to cover the cost.
It might result in related free publicity when people want to know what it is all about. Also, sometimes, if you pay for a big ad, you can get a related article published for free on the same page.
Probably signatories would have to give express permission for their endorsement to be used in that way.
Edit: just thinking about Red Whale contacting GPs to promote BPS approaches - maybe we could counter that by putting the letter as an ad in a magazine for GPs?
OK, Dave, I'll do what I can.
Some good ideas from others about to ask patients to contact their MPs. I think if they do, including the Whipple article (or a link to it) may help.
As for a letter to The Times, as a daily reader I know they do regularly print letter with a mass of signatories. The print version would not show all of them, but they're happy to put them all up online. They'll then add something in the print to say full list available online. Online space is free.
Esther12
Senior Member (Voting Rights)
It's quite a turn around from how criticism of PACE was being covered a few years ago... but also, it is interesting how the PACE/Lancet crew are not getting anything like that sort of criticism in the media that PACE critics used to.
The UK media seems happy to lay the boot into those without power, but very cautious with anything that challenges authority. I realise this is a pretty obvious thing to note, but I'm posting it anyway!
The UK media seems happy to lay the boot into those without power, but very cautious with anything that challenges authority. I realise this is a pretty obvious thing to note, but I'm posting it anyway!
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those MPs who have previously said they wont or dont* sign EDMs could be approached again and asked to sign this letter because it is not an Early Day Motion
*(anyone who is a Govt Minister or minister's assistant (Parliamentary Private Secretary) doesnt sign EDMs by convention as they are a means for back benchers to flag up issues. The opposition Front Bench team do not sign either, some MPs use the excuse of previously having been a Minister although this is irrelevant if they are actually on the back benches. Other MPs use a standard response that they dont bother with Early Day Motions because they have no legislative force - which in the case of the PACE trial is a complete red herring as the EDM is being used as a means of the legislature holding the administration to account and which does not require legislation).
*(anyone who is a Govt Minister or minister's assistant (Parliamentary Private Secretary) doesnt sign EDMs by convention as they are a means for back benchers to flag up issues. The opposition Front Bench team do not sign either, some MPs use the excuse of previously having been a Minister although this is irrelevant if they are actually on the back benches. Other MPs use a standard response that they dont bother with Early Day Motions because they have no legislative force - which in the case of the PACE trial is a complete red herring as the EDM is being used as a means of the legislature holding the administration to account and which does not require legislation).
Sly Saint
Senior Member (Voting Rights)
I've been looking at the Wakefield MMR case; the investigative reporter involved in revealing the facts (cois, false data/data manipulation etc) was Brian Deer (reporter for Sunday Times).
I wonder if it might be worthwhile asking him to take a look at the PACE trial and give his opinion?,
if not directly then maybe via Mr Whipple?
https://briandeer.com/
I wonder if it might be worthwhile asking him to take a look at the PACE trial and give his opinion?,
if not directly then maybe via Mr Whipple?
https://briandeer.com/
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A further thought on this, David. As some know, the Tribunal hearing for my appeal for more trial data is on 13th November. I have been briefing Tom Whipple on it and he has shown interest. I suspect he may run something on the Tribunal decision when it eventually comes. That may be a good time to have the letter published, coordinate the two. Either, now the Tribunal has ordered more data to be released, everything should be reanalysed, or since the Tribunal hasn't ordered more, it's all the more important a full reanalysis should be conducted. It may mean The Times would be more likely to publish it, as it would link to a story of theirs.
Adam pwme
Senior Member (Voting Rights)
@dave30th Is there anyway of incorporating the MPs that have signed up to MAIMEs?
Over 30 have signed up now.
http://drmyhill.co.uk/wiki/Medical_Abuse_In_ME_Sufferers_(MAIMES)
Binkie4
Senior Member (Voting Rights)
Just to add that my MP is one of the 10 signatories. I have sent him an email with a link to the Times article. Anyone else with a connection to the other 9 who is willing to do this? I can write to Nicky Morgan if we don't have one of her constituents here.
ED: one word altered.
ED: one word altered.
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andypants
Senior Member (Voting Rights)
Seems like a good idea!
I tried to interest Brian Deer in the issue a couple of years ago, around the time of the first-tier tribunal. He was completely uninterested. It's possible he might have changed his mind, I supposed.
I've been asked about further plans for the open letter and so on, so here are some thoughts. Last week was the third time this open letter was sent to Horton and posted on Virology Blog. With this week's Times and BMJ articles, the letter has done a chunk of what I hoped it would do. (There's no point in thinking the Times will run the letter itself--that won't happen. I wish The BMJ had actually cited the letter, but whatever.)
It would make sense to re-send the letter to The Lancet and repost it on Virology Blog in upcoming months if there are a significant number of new signers or if one or more prominent people agree to add their names. I don't want to solicit publicly on Facebook or wherever for signatures--that seems like running a "campaign." But if people know of individual experts (we defined that for purposes of the open letter as people with scientists/academics with doctorates, and doctors, and some others with so-called 'terminal degrees' like lawyers) interested in signing, or any patient/advocacy groups we missed, then have them e-mail me or send me their contact information. My e-mail: davetuller@berkeley.edu
People have asked specifically about getting other MPs on. I think that would be a good addition. I can only add MPs' names if I've had a direct e-mail from them or their office advising me that they're on board. I've reached out to MPs twice and so at this point it would be up to others to reach out to their own MPs or to those who've indicated interest in the issue, and send them the open letter and I guess the news articles. Again, if they agree to sign, put me in touch with them to follow up.--
It would make sense to re-send the letter to The Lancet and repost it on Virology Blog in upcoming months if there are a significant number of new signers or if one or more prominent people agree to add their names. I don't want to solicit publicly on Facebook or wherever for signatures--that seems like running a "campaign." But if people know of individual experts (we defined that for purposes of the open letter as people with scientists/academics with doctorates, and doctors, and some others with so-called 'terminal degrees' like lawyers) interested in signing, or any patient/advocacy groups we missed, then have them e-mail me or send me their contact information. My e-mail: davetuller@berkeley.edu
People have asked specifically about getting other MPs on. I think that would be a good addition. I can only add MPs' names if I've had a direct e-mail from them or their office advising me that they're on board. I've reached out to MPs twice and so at this point it would be up to others to reach out to their own MPs or to those who've indicated interest in the issue, and send them the open letter and I guess the news articles. Again, if they agree to sign, put me in touch with them to follow up.--
ME/CFS Skeptic
Senior Member (Voting Rights)
I'm from Belgium and I noticed that Kenny De Meirleir and Michael Maes aren't on the list. Both of them have been quite outspoken in their criticism of GET/CBT and the research that supports it. For Maes there's a paper that he co-authered with Frank Twisk (https://www.ncbi.nlm.nih.gov/pubmed/19855350). De Meirleirs criticism of the PACE-trial was documented in this (Dutch) newspaper article (https://www.nieuwsblad.be/cnt/g4836jb6c) where he criticized the selection criteria amongst other flaws.
Both researchers are rather controversial in Belgium because they offer expensive, experimental treatments to ME/CFS patients. Internationally however, they are considered experts in the field. De Meirleir was one of the authors of both the ICC and CCC, while Maes is cited several times in the IOM-report (he’s also known for showing that depression is associated with inflammation back in the 1990s and he has a h-index of 113).
Unfortunately I do not have direct access to them, but maybe it’s worth a try, sending a message to the e-mail adress they list on their papers?
Esther12
Senior Member (Voting Rights)
They don't sound like the ideal people to have challenging unfounded claims about treatment efficacy.