CanaryPod: #ToppleUncaged meets… the Millions Missing: David Tuller

THIS PODCAST CONTAINS LANGUAGE AND CONTENT SOME PEOPLE MAY FIND OFFENSIVE. THE VIEWS EXPRESSED IN THIS EPISODE ARE THE OPINIONS OF THE HOST AND GUESTS.

Welcome to a special series of episodes of #ToppleUncaged!

Every week, The Canary will be bringing you a new podcast on the media landscape; hosted by me, Steve Topple. But this week is different. Because it’s both Millions Missing and ME Awareness week. So, The Canary and I are bringing you content across seven days.

Millions Missing

Myalgic Encephalomyelitis, commonly referred to as ME, is a chronic systemic neuroimmune disease. It affects an estimated 17 million people at least worldwide and around 250,000 people in the UK. It has been fraught with controversy. For decades – and often still to this day – the medical profession has not properly recognised it. People living with ME have been disbelievedstigmatised, given incorrect treatment, or told it’s ‘all in their heads’. But campaign group ME Action Network (#MillionsMissing) and charity ME Association (#MEAwarenessWeek) aim to change this.

In the sixth and final daily podcast, I caught up with David Tuller, one of the most prominent faces in the ME advocate community. He has gained a respected reputation for his work surrounding PACE trial and other problematic pieces of research. He frequently publishes material on the Virology Blog. So, we discussed in depth the controversy surrounding PACE trial, ME as a disease and more.

Listen below:

FULL SHOW NOTES:

CanaryPod: Topple Uncaged meets… the Millions Missing: David Tuller

LISTEN TO MORE EPISODES AND INTERVIEWS FROM THE #ToppleUncaged PODCAST:

www.thecanary.co/topics/canary-pod-topple-uncaged/

 

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One comment

  1. Liz W · 12 Days Ago

    In my opinion:

    MUS is the prevailing danger for ALL UK patients and MUST be talked about, so It was great to hear David Tuller talking about it in this podcast. Some in the ME community unfortunately seem to think that ‘MUS’ should be brushed under the carpet, that it has nothing to do with ME and ME shouldn’t be linked to it in any way. This stance is understandable – of course nothing that is currently ‘medically unexplained’ should be passed off as psychogenic or due to psychological causes or triggers in order to remove patients from biomedical care and curb biological research, and definitely not ME because biological research IS revealing potential mechanisms for this disease – but I’m afraid they’re not up to speed on this. Like it or not, ME is inextricably linked to the MUS strategy/agenda. It is at the heart of it. The MUS strategy in the UK has been built on the management model of ME, (Wessely, Sharpe and Chalder clearly expressed their intention to achieve this in a 1997 paper), and ME patients are now at the centre of the programme to block MUS patients from secondary care and any proper investigation and treatment. (NB ALL UK patients are potentially at risk, because, if you think about it, most patients go to their doctors with ‘unexplained symptoms’, and until they’re diagnosed correctly the majority of patients will fall into the ‘MUS’ category.) The model is also being ‘sold’ across the world.

    There appears to be similar inadequacy in relation to the MUS model as we saw with the flawed PACE Trial, and David has thankfully started to expose these failings. As he mentions in this podcast, he’s asked the editor of a prominent UK medical journal to correct published misinformation about the cost of MUS to the NHS, but the editor, instead of issuing a speedy correction, seems to me to be pussyfooting around the issue – http://www.virology.ws/2019/05/07/trial-by-error-my-exchange-with-the-british-journal-of-medical-practice/ This is astounding. Follow David’s Virology blogs to see what happens next. The UK Medical Establishment may well dig itself in deeper and deeper.

    But it also astounds me that any ME sufferers (anywhere), once told about the significance of the MUS issue, would seek to distance themselves from it or pussyfoot around it, as if they can somehow exempt themselves from the MUS model being applied to them. Is it that they can’t comprehend that the medical profession and their politicians would pursue a strategy that purposefully denies thousands or even millions of patients good care? Surely they should know better than that by now. .

    Like

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