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Update: I’ve had about 20 people volunteer to sing in the chorus. A few have had to drop out but I’m expecting to have about 15 voices before the provisional deadline in a couple of weeks times. My hope is to then get it all finished and uploaded in time for the millionsmissing protest on 12...

I have just sent an email to Sonya Chowdhury asking her to clarify whether AfME agreed that it would be sensible to drop actigraphy as an outcome measure, and if so why. I also sent a link to this thread.

Thanks for unearthing this actigraphy stuff @Lucibee. A smoking gun indeed, @Sean. I'm alarmed by their use of the word "useful". This hints at motivation. What was the purpose of the trial? To test whether CBT/GET are effective or to try to prove that they are? To suggest that an objective...

I’ve tweeted MS about TSC approval for protocol changes. (Other tweets included for interest, and to highlight the ad hominem attack in response to a question for critism beyond the ad hominem.) [Edited thread and reposted tweet to read TSC instead of STG. I’ve also now emailed Carol...

Is this a question that could be put to the PIs (or SW)? – i.e. at which meeting(s) were the protocol changes approved by the TSC?

Not only an unblinded trial which primed participants on the effectiveness of CBT and relied on subjective outcomes measures, but also one in which patients volunteered to join because they were already convinced of the potential effectiveness of CBT and GET and became depresssed if they did not...

This is what he said about his involvement with PACE (https://www.nationalelfservice.net/other-health-conditions/chronic-fatigue-syndrome/the-pace-trial-for-chronic-fatigue-syndrome-choppy-seas-but-a-prosperous-voyage/):

It occurs to me that the SMC is a registered charity and is therefore accountable to the Charity Commission. https://www.gov.uk/complain-about-charity: I think one could make a case that the SMC is “not doing what it claims to do” and “harming people”. Does anyone know if a complaint has...

The authors’ response to my letter is very weak: 1) They answer a question I didn’t ask. We know that they adhered to the NICE criteria. The problem is that it is not clear how they interpreted those criteria. What is meant by “post-exertional fatigue”, which is differentiated from PEM in the...

When GETSET was published @Tom Kindlon put out a call to people to write in response. He pointed out that, like me, he does not have a degree (due to ME) but that has not prevented him from having letters and articles published in several peer-reviewed journals. Without Tom’s encouragement I...

No takers yet!

I wonder if someone, or a group, might like to do a detailed, line by line analysis of the SMC factsheet for the uninitiated, as I did with response from the Minister for Care in the Westminster Hall debate on PACE (https://www.meaction.net/?p=39062&preview=true) Unfortunately I can't take this...

Thanks, Trish. It took some time and effort to agree on a proof – partly due to concerns about defamation – but the editorial team were exceedingly helpful, and I was heartened by their understanding of the issues.

This is my letter in the lastest edition of Nature: https://www.nature.com/articles/d41586-018-03055-1 I wonder if I should have pushed for stronger language, but sometimes it is necessary to turn down the volume in order to be heard. And I’m pleased to have been able to raise concerns about...

For those who are unaware, the psychologist Dr Hazel O’Dowd is one of the PACE trial authors who is sponsored by Action for M.E. to give webinars about “CFS/ME”. From the Action for M.E. 2016-2021 strategy document: https://www.actionforme.org.uk/uploads/pdfs/2016-2021-strategy.pdf In 2017...

It depends on whether the light bulb wants to change.

Hi Gary, thanks for the post. I’ve not had a chance to listen to the programme yet but I wanted to make a more general comment. It is great that you’ve managed to get so much media coverage but, as I’m sure you appreciate, it is also a tremendous responsibility. Many people have been fighting...

Sorry, I've just enabled sharing. I am hoping that someone might be you, @Jonathan Edwards. In the meantime, could I ask you to post your comments below the article so that as many people read them as possible? Thanks.

Here is a PDF version:

Thanks. You’re not confusing #MEAction with AfME by any chance? I’ve recently joined the former as a volunteer and would encourage others to consider joining too. I believe they/we are currently looking for someone to lead the organisation of the UK millionsmissing events. @Tom Kindlon...