Trial By Error: Coupla More Posts Worth Reading

By David Tuller, DrPH

Ryan Prior is a CNN journalist who told the story of his own ME/CFS diagnosis and illness in the 2015 documentary Forgotten Plague. (I’m interviewed in the film.) On Sunday, he told the story of a friend he met as a result of the film, and the choice she made last year to end her life in Switzerland through a legal process not available to her at home in Tennessee. I’ve included the first few paragraphs below.

*****

My friend chose an assisted death in Switzerland. Her dying wish was to tell you why

By Ryan Prior

(CNN) Shortly after 11 a.m. on December 16, 2019, Cindy Siegel Shepler drew her last breath in a spartan room in Basel, Switzerland.

The 62-year-old American twisted a knob on her IV pole and soon fell asleep for the last time.

I had stayed with her and her husband David in Knoxville, Tennessee, for their last three nights at home before they left for Basel. And I spoke to her for the last time about 12 hours before she died.

Cindy had been forced to give up a high-poweredcorporate careerat age 35 and struggled for decades with a handful of painful diseases. She spent much of her time seeking new treatments and advocating for medical research, knowing she might never benefit from her labors.

When it finally became clear that no drug could relieve her intense suffering, she chose voluntary assisted death, a procedure that’s not legal in her home state.

Her dying wish was for me to tell her story, with the hope that it would help the cause of all Americans one day having access to this kind of death with dignity.

You can read the rest of Ryan’s story here.

**********

The Opposing MEGA site has posted a couple of blogs by “Goodelf” under the heading “Untangling the MUS Web.” This now appears to be part of a series–at least, the third was just posted a few days ago. The focus, at least so far, is how proponents of so-called “medically unexplained symptoms,” or MUS, have been selectively citing data to support their perspective.

This is starting to seems like a Dickens novel (in the good way), with a new installment churned out at regular intervals. Anyway, Episode #3 can be read here.

{ 10 comments… add one }
  • Martin 9 June 2020, 5:30 am

    THe guy who was the subject of the FOrgotten Plague works for ME Action which was set up by Jen Brea. Jen Brea came on British Breakfast TV in 2017 with our MEA
    doctor and said she had had severe ME and had made a film called Unrest. Now I see a few years later after finding out she had thyroid cancer, had a thyroidectomy and CCI surgery (some sort of cranial surgery to relieve pressure on the neck) she claims she has gone into complete remission of her ME. I think that Dr Tuller should investigate this claim as a matter of urgency and also get the CDC to investigate. The reason is because if it was hypothyroidism causing ME, then everyone needs to know. It may lead somewhere. Or are these two people just trying to make a million dollars selling documentary films that get into the SUndance film festival? Thanks

  • Lady Shambles 9 June 2020, 5:34 am

    Thank you. I have read both articles you mention. The first was very hard to process given the situation I find myself in. It seems to be easier to arrange to take our lives than it does to access care, even off label (maybe especially off label), and that’s allowing for the exhaustive process demanded for a legal suicide. No wonder so many with ME take matters into their own hands.

    The MUS series is turning out to be something of a watershed in providing minutely researched data about the way in which the BPS have made a land-grab for the whole of medicine no matter their theory has no basis in reality… only a basis in their skewed publications and presentations which aim to brainwash medics into their way of thinking and thus to go forth and multiply what is essentially a top-down directive for gas-lighting all of us (potentially), not just those of us with ME.

    The misdiagnosis rates which form part of *their* (ie the BPS) data in the two papers highlighted in this series of blogs from an anon author (who really seems to value our ‘goodelf’), must surely be seen for what they are: evidence of malfeasance in public health in the UK (and elsewhere). You can’t just sweep MUS misdiagnosis rates of 16.8% (overall), 21% (neurology) and 31.7% (cardiology) under a biopsychosocial carpet.
    From the first blog – https://opposingmega.wordpress.com/2020/05/01/untangling-the-mus-web/ – it seems those MUS misdiagnosis rates are 25%+ overall, 19% for neurology and 38% for cardiology when they’re expressed as the proportion/percentage of MUS diagnoses that turned out to be wrong.
    We can’t just let this information remain in a series of extremely well written blog posts never to be considered again. This is a SCANDAL… it’s also a very clear example of the way the BPS works, and has been working for decades. This is where we need media picking these findings apart and asking the individual players very hard questions. Clearly Goodelf isn’t a journalist? We need journalism to pick this up and run with this incendiary material. We need what I understand might be called a ‘Blitz Defence’ in rugby terminology: multiple players taking this on board
    and moving as one. We’re being handed it on a plate… now we need action.

  • CT 9 June 2020, 7:15 am

    Lady Shambles – I agree, journalism would be good, but what about politicians? Perhaps people could write to their MPs / representatives? In the UK we have a Science and Technology select committee -https://committees.parliament.uk/committee/135/science-and-technology-committee-commons – in Parliament that has previously looked at research integrity. Perhaps it’s time they looked at things like this which fall through the cracks because, by the look of it, it’s not the research that’s necessarily lacking in integrity here but the dissemination of it in peer reviewed papers and authoritative textbooks by people who are supposed to be experts. There’s also a Health and Social Care Committee but that’s now chaired by Jeremy Hunt so I’m not sure how it would go down there. It’s hard to contact anyone who isn’t your own MP, but maybe people in the UK could check to see if their MPs are on either of these committees and write to them if they are.

    In the other article what came across was Cindy’s hope and determination that things could change, such that she spent her precious time and energy on trying to make that happen. But time waits for no one. We desperately need good biomedical research… and fast… and there would be so much more money available for that if it wasn’t being spent on junk psychological projects that are founded on flawed evidence.

  • Martin 9 June 2020, 8:16 am

    I suggest people look at my comment above about Ryon Prior who said he had ME himself and did a film and lo and behold he works for Jen Brea who miraculously recovers from hypothyroidism (sorry I meant ME LOL) and ALSO does a film. They both work together for ME Action and Ryon works for CNN freelance reporting on ME I guess. It is highly strange to me!!!!!! ALARMS BELLS DR Tuller.

  • Martin 9 June 2020, 8:50 am

    Berkeley Public Heath spoke to Jen Brea last when she was sick and making her documentary film. https://www.berkeleywellness.com/healthy-community/health-care-policy/article/living-mecfs%E2%80%94and-filming-it

    WHy no follow up now she has recovered? She had hypothyroidism not ME OR ME is a kind of hypothyroidism

  • Lady Shambles 9 June 2020, 9:34 am

    CT said: ” I agree, journalism would be good, but what about politicians?”

    In theory a good move, but in reality it’s a pointless task for most of us. The only time my MP replied to me was when I mailed her with a particular concern and complained at the same time that she had ignored other posts I’d made until that point (when I say ‘other’ I mean no more than 2 in the course of around 5 years… not the ‘green ink’ variety). She apologised for ignoring me and said she’d do everything she could to help whilst not actually responding to the element in said post that I wanted help with. A subsequent reply by me (indicated as necessary by the content of her missive) met with the usual low rumble of tumbleweed. All that said to me was that she was more concerned abut her personal optics than actually *doing* anything useful.

    It would, however, be very useful for Carol Monaghan to be made aware of the Goodelf blog content, but once again, unless one is a constituent of an MP one can no longer mail (or seemingly contact in any other way) a member of the UK Parliament. Which in a so called democracy is a very odd state of affairs imo.

  • Diane Kirk 9 June 2020, 3:31 pm

    Jen Brea doesn’t claim to have recovered from hypothyroidism or claim that her ME was hypothyroidism. She recovered after her CCI (Craniocervical Instability) surgery. Unconnected to the CCI, she previously had a thyroidectomy for thyroid cancer.

  • Martin 9 June 2020, 3:48 pm

    I know Jen Brea doesn’t claim to have had hypothyroidism and recovered. It was ME suggesting she had hypothyroidism really that cured her rather than CCI. This is why Dr Tuller needs to investigate but he seem reluctant to investigate any claims of ME recoveries within the US. LOL

  • Wilson 18 June 2020, 9:33 pm

    Get cured from herpes you can contact him :robinsonbucler@gmail. com,,

Leave a Comment