The Times - Call for review of ‘flawed’ ME research in Lancet letter

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.

 

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.

 

Is there a problem with this link? Have tried to repost twice on local group.

 

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.

 

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.

 

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!

 

I think Vince Cable signed one of the petitions, maybe an edm. Maybe he might be interested?
In fact maybe all the edm signatories should be approached. I think there were over 100 signatories to the most recent one.

 

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/

 

@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)

 

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.

 

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.--

 

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?

 

They don't sound like the ideal people to have challenging unfounded claims about treatment efficacy.