Response to Michael Sharpe’s claims of harassment

https://www.youtube.com/watch?v=-rCA-pcqbMY

Transcript:

BBC Today Programme March 2019 (clip)

An Oxford professor has stopped his work on chronic fatigue syndrome also known as ME because he says he's faced a barrage of online abuse from patients and campaigners.

Some context… (slide)

Over 80 Charities are opposed to his treatments for ME, CBT and Graded Exercise Therapy (slide)


Dr Charles Shepherd
Medical Advisor ME Association
Unfortunately the main treatments that are recommended by the NHS are two treatments called Cognitive BehaviouralTherapy and Graded Exercise Therapy and there are problems with both of these treatments. We know that this is not a mental health condition it's not an illness that is perpetuated by psychological factors and we know from our own survey that graded exercise in actual fact makes over 50% of people with this illness worse.

Many severely deteriorate and never return to their previous levels of function. (slide)

ME Patient who received Graded Exercise Therapy at an ME Clinic
I had to walk and had to increase walking by 10% each week and as I began to get sicker and sicker I was told this is the moment where you push through and you get better. I started at the clinic being able to walk about four minutes each day and I ended and I needed a wheelchair. I went back to my physio and I went back to my doctor and they said congratulations we're so glad we helped you recover.

Michael Sharpe continues to claim these treatments are safe (slide)

Liz Mcinnes MP
Middleton and Heywood
I spoke in the debate last year about Meryn Crofts who is one of just two people in the UK who have had Myalgic Encephalomyelitis recorded as a cause of death. And Meryn’s mother was very critical of the pace guidance given by NICE and attributes the worsening of Meryn’s condition to it. She tells me that Meryn thought she could push through the condition and keep going although her family really wanted her to slow down and sadly it was only when the family contacted a private medical practitioner that Meryn was given the advice to slow down and told that she needed to rest. Meryn's mother feels very strongly that had Meryn been given that advice when her condition started she might not have gone on to develop severe ME and Meryn's mother said to me if the PACE Trial were a drug it would have been banned by now.

Over 100 well respected scientists don't trust the PACE Trial results or methodology. (slide)

Sir Edward Davey MP
Kingston and Surbiton
I have seen scientists writing in journals like this Journal of health Psychology calling out the PACE Trial. There is a huge amount of evidence Mr Rossendale from the science community, from very eminent people questioning the whole PACE Trials their methodology the evidence they used and the way they treated the patients.

Dr Phillip Whitford MP
Central Ayrshire
And as has been said Graded Exercise actually can make things much worse. This is based as has been said on the flawed PACE Trial published in The Lancet in 2011. It was an unblended study because you can't hide from people what treatment they're getting, that means all other aspects should have been very strict and yet CBT and GET were promoted to patients as the thing that was going to help them. They didn't analyse their planned outcomes which is critical in research. They lowered their defined targets simply because it was failing and used subjective rather than objective measures. Re-analysis of the PACE study has shown minimal benefit to these treatments and indeed as my honourable friend from Glasgow Northwest said some people got worse and were still classified as a success.

Over 30 MPs want an investigation into the PACE Trial (slide)

Carol Monaghan MP
Glasgow North West
I think when when the full details of the trial become known this will be put down as one of the biggest medical scandals of the 21st century.

The majority of patients have been asking legitimate questions (slide)

Previous claims of harrasment made by PACE authors were found to be “grossly exaggerated” in a court of law. (slide)

What about Michael Sharpe’s behaviour? (slide)

Carol Monaghan MP
Glasgow North West
Interestingly, Professor Sharpe one of the authors of the PACE Trial has emailed me this week he has told me that “my behavior is unbecoming of an MP”

Gavin Newlands MP
Paisley and Renfrewshire
I’d like to say to Professor Sharpe that its not my honourable friends conduct that's unbecoming but rather, it's yours. Sending emails like this do nothing whatever for the reputation of the scientific research community and you should apologize.

Dr Phillip Whitford MP
Central Ayrshire
The fact that the honourable lady has been written to by a scientist and has been called out I hope right honourable members from across this house will find shocking.

 

YouTube description

Michael Sharpe was an author of the controversial PACE Trial that has been widely discredited. On 17 March 2019 he was interviewed on the BBC Today Show about the claim he was leaving the field because of online harrasment, this video provides some wider context, including patient testimony, a medical advisor and MPs discussing Michael Sharpes treatments, research and character.

Many ME/CFS patients have been harmed by Graded Exercise Therapy. Over 50% of patients consistently report a worsening of their condition in an analysis of 18000 patients from 10 surveys from multiple countries [1]. Many have been made permanently disabled.

Over 100 scientists and over 80 international charities (Nearly every one) signed an open letter asking for the trial to be independently reanalysed [2]. Former science teacher Carol Monaghan MP described PACE as "one of the greatest medical scandals of the 21st century" and said "As a scientist, I am appalled by the methods used in the trial, which included changing the parameters and success criteria midway through the study. This has been widely discredited in the research community"

Over 30 MPs have signed up to the MAIMES Campaign calling fir an investigation into The PACE Trial [3].

In a tribunal for to determine the release of the PACE Trial data, a majority verdict went on to conclude that: "It was clear that [Anderson's] assessment of activist behaviour was, in our view, grossly exaggerated and the only actual evidence was that an individual at a seminar had heckled Professor Chalder." [4].


[1] Myalgic encephalomyelitis/chronic fatigue syndrome patients’ reports of symptom changes following cognitive behavioural therapy, graded exercise therapy and pacing treatments: Analysis of a primary survey compared with secondary surveys
https://journals.sagepub.com/eprint/h...

[2] Open letter to the Lancet
http://www.virology.ws/2018/08/13/tri...

[3] MAIMES Campaign
https://www.drmyhill.co.uk/wiki/Medic...)

[4] Information Tribunal has rejected Queen Mary University of London's attempt to prevent release of data from the controversial PACE trial https://www.centreforwelfarereform.or...

 

Nice. How much would it cost to put this on TV as a commercial?

 

Excellent!

 

That’s the best idea I’ve ever heard!

 

Thank you
I'd also settle for trending on YouTube or featured on Vox/ThinkProgress/Slate/CNN etc.

 

https://www.thedrum.com/news/2017/0...eres-what-channel-4-itv-and-more-charge-slots

I haven’t studied this just posting here in response to suggestion above and in case I forget.

 

Some of those rates are not terrible.
That said this video is about 5 minutes long and might not be the best TV material but i wonder what it costs to be a promoted Youtube video.
And we could invent fundraise for ME TV commercials and at some of those rates it would probably work out

 

The Internet is a fine medium for that. What we need is more of those. For the cost of a TV ad we could produce several such videos at pretty close to professional levels of quality, broadcasting is expensive. Short video exposés that are bite-sized documentaries. No need for a full-length anything, short and to the point is all we need.

It's especially perfect for Twitter as replies to the nonsense that goes around but it's necessary to have decent production value to make it seem credible. This video is a great foundation, mostly relying on public statements and there is so much more documentation out there.

There is a huge community out there of freelancers who do that. It's even relatively cheap, but it's still a lot of work and several thousands in funding. Infographics would be great for that too. But the biggest part of the work is research and producing a good script. That can't really be outsourced to someone who isn't already familiar with the basics.

 

Personally I can't see anything wrong with the video, but should putting this out there as a tv advert or similar become possible you'd need consent for use of clips from eg. Charles Shepherd/MEAssoc. and other stuff like that that I can't think of.

 

I think Facebook, YouTube or Twitter ads would be better than TV because you can have additional links and actions. Might be able to get more visibility if people with high profile, or large following to share. It also might be worth tailoring the vid to focus less on Sharpe so it's a bit more positive.

The video really needs a key action. E.g. Donate or sign up to a charity or sign a petition.

Im keen to do more health permitting, maybe a series. Focusing on single topics, like harm, pace, history etc... It would be someone with more energy or personality to speak in between clips, to articulate the message better. Slides slow the pace down a bit.

 

I agree but i also disagree. While TV no longer has near monopolistic market penetration its still a highly influential and viewed medium. I would use it if feasible. But i would of course also use internet assets, YouTube anything developed for TV and make smaller clips not just from the TV material but complementary short vids as well.
Its easy to get stuck in a trap of being busy means useful progress. It can but its not a given.

The problem with twitter is that its a quick media consumption medium, its short and quickly forgotten. Not to say we should ignore it but a bunch of tweets won't replace real content.

Indeed.
I would never be able to put a media piece together but i suspect there are ME patients out there with the right skills and maybe cognitive functioning left.

 

You need to do both, a good campaign reaches many eyeballs repeatedly. You don't want gaps in your reach.

Cool
Are there other members interested in working together to develop media?

 

@JohnTheJack said he would be willing, maybe co-ordinate with him

eta: posting link to this thread in case there is anything useful/of interest on this subject
https://www.s4me.info/threads/ad-campaigns-why-hasnt-there-been-one-for-me.7193/page-2#post-129042

 

Thank you @Adam pwme - great video!

Copyright hurdles pointed out earlier are something to deal with. But, it's exciting to see this compilation in answer to the BPS crowd.

I hope those with skills in this area can take it further. I also hope others who are able might consider donating a bit - IMO this is one more aspect of outreach that is needed.

 

Just to be clear, this clip was produced by the BBC?? Yes?
And, has it already been aired? Or is it yet to be shown?

 

First clip was from ME and me bbc doc. The rest are from parliamentary debates and a petition meeting in Scotland. I don't think there are copyright issues on parliamentary clips, maybe the BBC doc but they don't seem to enforce much. Also I'm how not sure if copyright applies to legitimate social commentary.

 

There are exemptions for fair use, when you give attribution to the original source.

I'm not familiar with the exact requirements to fulfill this but fair use is generally a broad exemption, especially when it's not commercial in nature. Although I think that the recent prop 13 (I think) voted by the EU is particularly problematic around this, more restrictive.

Anyway, the more guarded the medium is, like TV broadcast, the higher the requirements. For an Internet-only video with no monetary gain, the bar is about the lowest.