By David Tuller, DrPH

More than ten years ago, Natalie Boulton and her son, Josh, made a film called “Voices from the Shadows,” about the plight of ME patients. Natalie, from Bristol, England, was intimately familiar with the issue because of the long-time illness of her daughter, Anna. The film, a harrowing depiction of the ravages of ME, helped pave the way for Boulton to receive a grant from grant-maker Wellcome (formerly called the Wellcome Trust) to develop a series of informational documentaries called “Dialogues for a neglected illness.” The prologue, which references the new NICE guidelines for ME/CFS, can be seen on youtube here.

The project, funded from 2018 through 2021, has recently ended after the production of 19 videos across seven categories. Here’s some information from the website:

Dialogues for a neglected illness – or Dialogues for ME/CFS – has been made with an award from the Wellcome Public Engagement Fund – 2018/2021. The project is led by Natalie Boulton, working with Josh Biggs a professional editor and cameraman. It has evolved as we developed it, adapting to the difficult  conditions caused by the pandemic! Members of the Cure ME team at the London School of Hygiene and Tropical Medicine – Luis Nacul, Eliana Lacerda and Caroline Kingdon – were clinical and research consultants for the first half of the project, until Covid 19 complicated all our lives too much. All medical and scientific input has been checked with the professionals interviewed, before being made public. Advice and feedback was also provided by patients and carers at all stages, as an integral part of the project. Particular thanks is given to patient and carer advocates – Mary Dimmock, Graham McPhee, Valerie Eliot Smith, Sue Waddle and Rob, who provided much needed input and feedback, frequently at extremely short notice.

“This collection, with more videos than were originally envisaged, covers a variety of topics and gives a multi-faceted understanding of the disease from the perspectives of medical professionals, exercise scientists, research professionals specialising in ME/CFS and, importantly, also features the experiences of patients and carers – with about a dozen patients having been interviewed, including donors from the UK ME/CFS Biobank, doctors and patient advocates. The project was being made at the same time as the revised NICE Guideline for ME/CFS was being developed and has been impacted by the long delays in publishing the final NICE Guideline, as well as Covid restrictions.

However, Dialogues now appears to be addressing an important gap in the educational material for ME/CFS, as the videos are being hosted or linked to by major UK charities (ME Research UK, ME Association, Forward ME & Action for ME), international charities, and completed videos were shown at the CMRC conference and Hope4ME&Fibro NI conference before covid lockdown! The project has been included in medical education resources in the UK and the US. (Study PRN continuing professional education, the US ME/CFS Clinicians Coalition, Workwell Foundation and Healthcare Special Issue: Severe ME).”

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I recently asked Natalie Boulton some questions about the project and its impact. Here is an edited version of that exchange:

Why did you take this project on? What were the goals?

A few years ago, after making Voices from the Shadows,  I found myself lying awake at night worrying about the future for my daughter and her friends with severe ME. I can cope better when I have a project to work on and think about, which at least makes me feel I am doing something to help bring about more understanding. So I started on a series of videos with Josh, at our own expense.

Then one of the Cure ME [a research group at the London School of Hygiene and Tropical Medicine] team told me about the Wellcome call for bids for public engagement, and suggested I apply. I totally dismissed the idea at first, but when I read about what Wellcome were looking for at that point, I realised it actually fitted my interests and background really well and was worth a try. It would be amazing to actually have some money to use and to make a project with the credibility of it being supported by Wellcome. To my utter amazement, the project was among the 5% of projects selected from all over the world.

For me, the goal was to create a multi-faceted and accurate picture of ME, from the perspectives of patients, carers, doctors and researchers. I hoped patients would find it, or parts of it, of use to share with family members, carers and friends. I hoped there would be sections they could usefully share with GPs and other professionals. And I hoped that it might have a wider reach… that there would be people who would become interested in ME, whether researchers, the public or even the media, who wanted to know more about what patients experienced and how this awful situation has arisen.

How did you choose topics and experts? 

To get started, I turned to interviewing researchers and doctors and basically we just started with people I had had some contact with before: people I felt able to turn to for help. I had met Nina Muirhead at conferences and Mark VanNess had come to Bristol for an evening event I’d organised a while back. Staci Stevens and the Workwell team went out of their way to make themselves available for us to film for a weekend with very-well prepared material and an exercise bike demonstration, and Mark offered to put us up for a couple of nights. So that was irresistible, even though it was not included in the bid.

I’d met Brian Hughes in Belfast at Hope 4 ME&Fibro talking about the PACE Trial, and that was our next filming session, in Galway, stopping off to see Tom Kindlon and his Mum in Dublin on the way back. I had a list of topics I wanted to address with anyone we interviewed who could contribute to them and then started editing the ones that seemed most urgent – GET first, and then PEM. We tried to organise filming days to cover more than one person at a time, economising on costs in every way possible. So it was a mixture of responding to what seemed to me to be the most urgent topics that needed to be addressed at that point, and working with people who were willing to help… friends, contacts and friends of contacts. I usually discussed things with people by phone or email first, but I never knew what people were going to tell me when we filmed.

How has the response been overall? Have you accomplished what you wanted?

The patient and advocate feedback I have received about the videos and project generally has been, and continues to be, really great, and the feedback from charities and ME medical professionals has been terrific too. It has been astonishing, really. One thing that really pleased me was being told at the CMRC conference that some researchers watching the PEM video had said they’d gotten a much better understanding of PEM. There have also been patients who told me they showed severe ME videos to hospital staff and that really helped improve the way they were treated. I’ve also been amazed at how widely distributed and used the project has become. I’ve only just realised quite how many ME charities around the world have included it in their resources.

So really the project has accomplished far more than I imagined, because some advocates and doctors have taken it up and used it in their work and some of the patients in the videos have been busy on social media promoting it. The project really depends on patients and doctors making use of it when they can. I am also immensely grateful to all the people we interviewed and to all those who sent us their photos to use

Are there things you didn’t get to?

I’d meant to include a video about some of the patient advocates who have been battling misconceptions about the illness, very poor quality research and inaccurate media portrayals. Too many of them have died or are extremely ill. I’d wanted to cover diagnosis, but NICE delays and other factors prevented it. I also wanted to interview medical specialists about some of the co-morbid conditions which are frequently ignored in the UK – PoTS and orthostatic intolerance and mast cell activation syndrome in particular.

There really does seem to be a great need for short videos for teaching students and other medical professionals, but I didn’t feel that that was the purpose of the project. My proposal was for creating a multifaceted picture of ME/CFS from different perspectives, including a look at the wider context. I don’t have any medical background, and I didn’t feel it was really my job, or specified in the project bid, to create specifically medical education videos. I might have tried bidding for more money originally. We costed a much smaller project, as cheaply as possible, because I just couldn’t imagine getting money for it, but we really could have done with a  bit more funding. I’ve worked pro-bono for a good chunk of the project, so that we could make more videos including the wider context film.

What’s your thought on the impact of long covid on the ME/CFS debate?

I think the connection with some forms of long covid is going to help ME patients. Researchers need funds to do their research and being able to access more funds to look at mechanisms which may apply to both conditions has to be good. Many of the ME researchers are really dedicated to working on ME and I think they will make sure their knowledge about ME grows, even while they work on understanding long covid. Having so many healthcare professionals become chronically ill after covid is also going to increase their understanding of patients with ME/CFS and their determination to get research and treatments underway.

What’s next? Anything else you want to say?

Hmmm. I really feel quite exhausted from this project. It went on for far, far longer than I intended and grew much bigger and was really intensive at times. I am very relieved there are new younger doctors who are working hard at educating the medical profession about ME. I am very aware of an older generation of doctors and advocates becoming too old to continue fighting, or who have died.

I remain hugely concerned about the people who became ill with ME as children, ten, twenty, thirty or more years ago: whose parents care for them, provide for them and enable them to have some meagre quality of life. They remain pretty much invisible and immensely vulnerable as their parent-carers  become too ill to care for them, or die. There is no safe provision available  –  for the kinds of environment and carer support needed in order for them not to relapse severely –  smell free, chemical free, quiet, energy saving, controlled temperatures and light/dark, and suitable diets prepared for them, help with personal care and access to understanding doctors.

It was interesting to see the recent Norwegian survey into the course of ME. They found that more than half of the severely ill patients became ill before age 20. Children and youth have been uniquely vulnerable to having been made severely and lastingly ill by the attitudes of the medical profession over the last few decades – being met with disbelief and increased activity and sleep hygiene advised. Children are often desperate to carry out the instructions given to them by their doctors and their parents, with recovery promised. They had no idea that these professionals, often supported by their parents who were also desperate for them to recover, were in fact signing their health away.

This situation still needs to be addressed. I feel the clock ticking on my life. We need to ensure that these patients, who have been harmed by society and by the medical profession, are not left to deteriorate and die in terrible pain, alone, or with carers whose very presence adds to their suffering. It really doesn’t bear thinking of.