Trial By Error: Some Stuff to Read and Watch From Rivka, Natalie & Anil

By David Tuller, DrPH

Massachussetts writer Rivka Solomon has had moderate* [I initially wrote “severe,” and Rivka corrected me.] ME for many years but still manages to get out there (metaphorically) and organize lots of stuff. A couple of years ago, she arranged a talk for me to give about the PACE trial debacle at a Boston-area hospital. She’s also pulled together a well-attended presentation for students, staff, clinicians and others at MGH Institute of Health Professions.* [I initially wrote “Massachusetts General Hospital.” MGH Institute for Health Professions is affiliated with Mass General but is an independent entity.] Most recently, she has written an article about the need to investigate possible links between the illness and so-called coronavirus “long haulers”—those experiencing serious symptoms after recovery from acute cases of Covid-19.

A few years ago, Rivka reached out to one of her state’s senators, Ed Markey, and acquainted him with the issue; he has since become a staunch ally. Along with others in Congress, Senator Markey supports a proposed $60 million in funding over four years for the National Institutes of Health to investigate possible ME/CFS (as government agencies call this illness or cluster of illnesses these days) in post-Covid syndrome patients. Rivka recently helped pull together a virtual roundtable discussion on the issue with Senator Markey. You can watch that informative discussion here.

**********

Natalie Boulton has been a tireless advocate for ME patients since her daughter, Anna, became seriously ill years ago. With no filmmaking experience, she directed Voices From the Shadows, which focused on the kinds of seriously ill patients rarely heard from. She and I met several years ago at a film festival north of San Francisco; I had been invited to participate on a panel discussion accompanying a screening of the film.

Natalie’s current project, Dialogues for a neglected illness, has been rolling out a series of films on specific aspects of ME. Here’s how the website describes the project:

Dialogues for a neglected illness– or Dialogues for ME/CFS— is a new project being made with an award from the Wellcome Public Engagement Fund. The project is currently a work in progress and will consist of a website with about a dozen new short videos, accompanied by links to existing educational materials and references.  The videos will address different aspects of the disease,  including – diagnosis, various management and treatment issues, Severe ME and the support doctors can provide, key symptoms described by patients in their own words including short and long term experiences and differing severities, patient advocates’ concerns, and the broader historical, social, medical and cultural context for the disease. It will create a resource which patients can use to help doctors and other health professionals, educators and research professionals, understand more about this disease and the issues involved.

So far, the project has posted four films: Introduction to ME/CFS, Post-Exertional Malaise, Graded Exercise Therapy, and Severe & Very Severe ME/CFS. You can find them here.

**********

My Dutch friend Anil van der Zee–a dancer, photographer, and long-time patient–has recently posted a blog about his own experiences as a young gay man, the onset of his ME, and how the ME world can look to ACT UP and other AIDS activists for inspiration. In doing so, he adapts the ACT UP slogan, Silence = Death, for a new era. His piece also includes a link to How to Survive the Plague, the great documentary about ACT UP.

Here’s the opening of Anil’s touching and thoughtful piece:

The IT. 

I was about 17 or 18 when I first stepped inside of the IT. The IT was a famous nightclub in the center of Amsterdam. It was kind of like the Dutch equivalent of Studio 54 in Manhattan, New York. Celebrities like for example Madonna would sometimes hang out in the IT after a performance. 

I have no clue how I got in, but what I do remember is that I was stunned by what I saw. On Saturday it was gay night, and to me as a young bloke in the midst of his coming out it was like they invited the whole Elite male model management with the cover models from Men’s Health combined. 

To my great surprise, some of these Spartacus look-alikes would even come up and talk to Mr. skinny mini-me. One thing I can tell you is that this part of my coming out was a lot of fun. I had a lot of fun! 

There was however the flipside to the story. It was around 1996 and during the AIDS crisis. While it was the start of a new era with more effective drugs, people were still becoming ill. People still died of this disease. It was something that was really visible while going out on a night on the town. Some of these gorgeous men would suddenly and rapidly lose all their muscle mass and weight and become very ill. They were scary times, where love or rather sexual love was bound up with death. It was a mixture of fun, pleasure and love ruined by a feeling that you were playing Russian roulette by the possibility of contracting HIV. 

Read the rest here.

Comments on this entry are closed.

  • Alicia Butcher Ehrhardt, PhD 3 August 2020, 7:20 pm

    As you know, I also think it’s important to let ME, and disabilities in general, be well represented in fiction and other art forms. That’s where many humans learn how to behave about illnesses, that’s what can develop empathy.

  • Jayne Barnard 4 August 2020, 1:57 am

    Hi, Alicia. I agree with you so much about using art forms to educate ‘healthy’ people as well as to soothe our own spirits from the years/decades of having our very real health issues mocked, belittled, ignored. These are our truths, and who can say them better than the trapped artistic souls inside these malfunctioning bodies?

    This is why you and I both write books about people whose lives have been robbed of so much by ME.

  • lucie webb 6 August 2020, 6:48 am

    Dr Systrom has taken us several steps onwards as to the how of symptoms but where are we with the why of it?