Severe ME Week: Howes Goudsmit Prize Awarded to Producers of ‘Dialogues of a Neglected Illness’!

The ME Association is pleased to announce the 2022 Howes Goudsmit Prize during Severe ME Week. Normally awarded to researchers who investigate severe ME, on this occasion the panel wanted to recognise the tremendous contribution from Natalie Boulton and Josh Biggs and the successful, ‘Dialogues of a Neglected Illness’ which has raised much-needed awareness about what it means to be the most neglected members of the ME patient community.

“Having worked with Natalie and Josh on the preparation and production of their outstanding educational videos on severe and very severe ME/CFS, I'm delighted that they have been awarded the Howes Goudsmit Prize this year. Well done to them both!”

Dr Charles Shepherd, Hon. Medical Adviser, ME Association

The award was created because of a very generous donation from Dr Ellen Goudsmit, a disabled scientist who helped to create awareness of ME in both the UK and the Netherlands and who has studied ME for over 40 years. The prize of £5,000 has been named The Howes Goudsmit Prize after Mrs Sandra Howes and the late Mrs Felicie Goudsmit. Mrs Howes had severe ME, was a board member of the ME Association, and spent years writing about the disease. Mrs Goudsmit was a carer and as such, became very familiar with the many challenges of dealing with severe disability. 

Natalie Boulton:

Josh and I would like to thank Dr Ellen Goudsmit and the ME Association for this award, which we are honoured to receive for highlighting Severe ME – and especially to be following in the footsteps of Drs Nigel Speight and William Weir who helped and encouraged us to complete this project.

The severe and very severe ME videos were some of the most difficult of the Dialogues videos to make. Graham McPhee (deceased), Mary Dimmock and Rob are all carers for sons with ME. They were sharply honest in their criticism and unstinting in their help and encouragement. We are very grateful for their input and for all the patients who helped, especially Naomi Whittingham and Catherine Hale.

We hope the videos will be shared and seen widely, illuminating the severity of the disease and the lives of so many people who remain hidden from public sight, and from friends and family.

When my own daughter became ill more than thirty years ago, many doctors didn’t believe that children could get ME, and most doctors had no idea how to safely support their patients. The long-term consequences of this have been utterly disastrous, as Josh and I heard in heart-breaking interviews, again and again.

A recent Norwegian study found that more than half of severely ill patients had become ill as children or before the age of 20. They suggested, as I believe to be the case, that this is because children have little say in how their illness is managed. They and their parents have been especially vulnerable to the dangerous behavioural advice and coercion that has pervaded the medical profession, education provision, and social services. This has caused untold damage and long-lasting severe illness.

The new NICE Guideline should, hopefully, help to reverse this situation – if doctors and other professionals follow it.

What really concerns me now, is that after struggling with decades of illness, many severe ME patients are becoming uniquely vulnerable. Their parent carers are becoming too old to care for them, by providing life-saving support and a safe environment. These severe ME patients deserve a better future, and it is the responsibility of all of us, to help bring that about.

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