By David Tuller, DrPH
I was supposed to be in Bristol, England, last week at the CFS/ME Research Collaborative conference. The conference went on as scheduled, but I decided the weekend before that the situation was getting too dicey to leave home. I didn’t want to get swept up in lockdowns and international travel blockades and not be able to return to the US. Under the circumstances, it seemed wise to change my plans. (It goes without saying that I hope everyone is taking care of themselves in this incredibly stressful moment.)
From afar, the CMRC conference appeared to proceed smoothly and included some interesting presentations. I’ll look forward to watching them when they’re available online. In addition to attending the gathering, I was scheduled to give a talk today in Sheffield, where I previously spoke about the PACE trial. This talk was slated to be about so-called “medically unexplained symptoms,” or MUS. When it became clear I would not be in England, the organizers proposed an online event instead.
In this format, having a conversation with Carolyn seemed like a better idea than a power-point presentation. Thanks to her as well as to Carol, Sian and the Sheffield ME & Fibromyalgia Group for pulling the event together!
Medically Unexplained Symptoms: Shaky Evidence, Shaky Practice
We're live now, join us and David Tuller as he discusses his work around Medically Unexplained Symptoms. To join the Zoom call with your computer, tablet or mobile phone online (you will need to download the Zoom app on tablet or mobile) click here:https://zoom.us/j/600588922ORYou can telephone in using your mobile or landline and listen to the talk.Dial: +44 203 481 5240It will then ask you to input the Meeting ID: 600 588 922Followed by #.During the Q&A you can dial the 6 key to unmute yourself, then press it again to toggle mute back on.Or watch the livestream right here below!
Posted by Sheffield ME & Fibromyalgia Group Events Page on Monday, March 16, 2020
The important thing here, and I think David says this, is not to blame the clinicians for this gaslighting of patients. They’ve been doing what they’ve been told to do from above, and have been following NICE or equivalent guidance or what they’ve been taught in CPD sessions or in journal papers. It is these same clinicians who are now putting their own lives at risk, with increased risk to their families too, to save so many people. When we finally come out the other side of this coronavirus horror, I think many eyes will have been opened about how our health services have been running roughshod over both patient and staff safety. People may understand better that corporate profit/greed and cost-cutting measures have been put before good healthcare and healthcare/disaster planning. Particularly in the UK, hospital bed capacity has been deliberately reduced towards a cheaper ‘care in the community’ model. Look closely at Boris’s hospital plans and I strongly suspect that you’ll find a reduction in hospital bed capacity per unit population built in. There’s a very good reason that we’re in such a mess right now. Yes, coronavirus would likely overwhelm any healthcare system, but the UK is starting in a very bad place due to its diminished bed capacity and staffing shortages.
MUS has been another strategy to reduce the healthcare budget with no concern for the high accompanying misdiagnosis/ delayed diagnosis rates (as with Lupus) or for the appalling suffering of patients so defined. I hope that after this, doctors will be more prepared to doubt their healthcare leaders and will realize that patients and healthcare advocates/’activists’ are far more trustworthy and should be listened to instead.
My bottom line on this is that, after exceptional growth in the last decade or so, it’s estimated that medical knowledge is set to double every 73 days this year (this estimate was made before the virus). If the number of patients diagnosed with so-called ‘MUS’ hasn’t gone down and doesn’t go down as a result of all this hard-won new knowledge, we need to be told why that is.
Much of this knowledge has come from the world of rare conditions. Technically many of them (and therefore the symptoms of them) are ‘medically unexplained’ until patients, clinicians and researchers identify and explain them. Apparently there are thousands of rare neurological conditions (I’ve got one of them) so there’s a wealth of potential knowledge out there. Provided, of course, people with these conditions don’t get told that they have FND/FMD or MUS and have their diagnostic odysseys kiboshed as a result.