The ME Association are pleased to announce we have awarded a Norwegian team of researchers the Howes Goudsmit Award for their extensive work and commitment to conduct research for severe and very severe ME/CFS patients in Norway.
Kristian Sommerfelt, Trude Schei, and Arild Angelsen used the study to assess the symptom burden, capacity for activities of daily living (ADLs) and whether there are any supportive measures for those severely and very severely affected ME/CFS.
The research was published in February 2023 and concluded that the “most severely ill ME/CFS patients are an extremely vulnerable group. Their symptoms are devastating, resulting in a lack of capacity for social interaction and quality of life. Frequent disbelief in symptoms from healthcare workers and inadequate care and handling further aggravate the patients’ and their families’ situation. These patients, who would best have demonstrated the basic disease characteristics and symptoms of all ME/CFS patients, are, sadly, generally invisible to the rest of society.”
Please see the PDF to the research study entitled Severe and Very Severe Myalgic Encephalopathy/Chronic Fatigue Syndrome ME/CFS in Norway: Symptom Burden and Access to Care:
Arild Angelsen
“The prize was a big surprise, 100% unexpected. But, I’m very happy to see that the work with patient surveys is recognised. Hopefully, we can make a contribution to improving the conditions for the severely ill.
I’m an Economics Professor and entered the field of ME when I became a caretaker about 15 years ago. I started digging into ME research and was struck by both how little research there was on key aspects, and how poor the methods and data were in many of the studies that I read. I became involved in patient surveys in Norway, and have participated in a handful, plus a large European survey.
The three of us have very complementary perspectives, and it has been a joy to work in the team. Now we also have started to translate the findings from the patient surveys into academic articles.
While there was no medical training, my methods and statistical background were useful. And, in economics, we have the principle of “consumer sovereignty” – one should trust the consumers’ wisdom, they know best. Perhaps we should transfer this to research on the health and social services for ME patients: “patient sovereignty”. This article – and the prize – hopefully, gives a voice and more sovereignty to severely ill ME patients.”
Trude Schei
“As Arild says, the prize was a huge surprise! I feel so grateful and honoured to receive it.
I am an ME patient, and I have had ME since 1999. By training, I am an architect. For the last 16 years, I have had various roles in the Norwegian ME Association and currently, I am the deputy secretary general. Over the years, I have worked on a number of patient surveys, several of them with Arild Angelsen and Kristan Sommerfelt. We have looked at how Norwegian ME patients have experienced their contact with the health and welfare system, and we have asked them about their experience with their course of illness. We also conducted a survey about the severely ill, and their carers. I have also worked with Kristan to develop the FUNCAP questionnaire for assessing functional capacity in patients with post exertional malaise (PEM).
Our surveys are done in areas where there is little or no research. I find that it is very important that the patients' voices are heard, and that their often desperate situations are made known. Our methods have limitations, but at the same time, they provide valuable insight in areas where little research has been done. I feel that this prize underscores how important this work is. Thank you!”
Kristian Sommerfelt
“Receiving this price was out of the blue for me! Immediately after realising that it was true, my thoughts went to all the very severe and severe child and adolescent ME/CFS patients and their families that I have been close to in my 37 years working as a paediatrician. Even after having met so many of them in my consultations, their bravery, endurance and patience remain incomprehensible to me. In most of the consultations, they have only had the capacity for very short conversations. Often just a handful of sentences, sometimes none. I feel very honoured and humbled to have been given the opportunity to meet them and to get to know through their short, very clear descriptions the strikingly consistent medical identity of this dísease. I have also been allowed to witness disease improvements in some and the accompanying joy they feel and express even if improvements may have been at times small.
My clinical work as a paediatrician with paediatric neurology has been mainly at the Haukeland University Hospital in Bergen, Norway. My research and medical education work has been at the Institute of Clinical Medicine II at the University of Bergen. Epidemiology has been my main research field with ME/CFS being the target in recent years.
Having had the opportunity to work with Trude and Arild has been very rewarding in every aspect. The astonishing efficiency and precision of many surveys they have done of ME/CFS patients have given them a solid foundation and knowledge that has been vital in conducting the present survey of those with severe and very severe ME/CFS that formed the basis of this study. The combination of knowledge, skills and personalities they have has resulted in a research team that to me has been, and is, very inspiring in every way. I cannot thank them enough.
I extend my greatest thanks to all the ME/CFS survey respondents and their carers who put in so much effort to make this study possible. Given the disease burden, this is astonishing and very inspiring for further research work targeting ME/CFS. It points to an extremely important research trend in recent years: Patient participation is typically required in clinical research projects. The present study highlights that patient participation was not symbolic or peripheral, but actually formed the very core of the study. Importantly, this would, in my opinion, not have been possible without a strong, well-organized patient organisation.
This study paints a very dark picture of the disease burden for these patients. It also highlights the often very inadequate support from responsible healthcare and social systems for the patients and families. However, it still gives hope, as it shows that when doctors and other healthcare personnel are engaged and take responsibility it makes a big difference. This is all the more important given that this patient group is strikingly invisible. Not only to the general public but also to most parts of the healthcare systems. This invisibility has fostered neglect, and disease misinformation and misunderstanding with very severe consequences. We hope our research can contribute to change this for the better.”
MEA Comment
I am very pleased to report that MEA trustees have decided to award the 2024 Howes Goudsmidt Prize to three researchers from Norway.
Arild, Kristian and Trude have made an outstanding contribution to the research base on severe and very severe ME/CFS – in particular the way in which their study on lived experience has highlighted how care and support from health and social care services is often inadequate, or not even there, and the impact that this then has on family members.
I hope that they will continue with their research into severe and very severe ME/CFS – as this is a much neglected area which the ME Association is keen to support in any way we can.
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association,
Member of the 2018-2021 NICE Guideline Committee,
Member of the 2002 Independent Working Group on ME/CFS
The Howes-Goudsmit Award
The annual Howes Goudsmit Prize was created thanks to a very generous donation from Dr Ellen Goudsmit, a disabled scientist who helped to create awareness of M.E. in both the UK and the Netherlands and studied the disease for over 40 years.
The prize of £5,000, which will be shared amongst the three Norwegian researchers this year, was named after Mrs Sandra Howes and the late Mrs Felicie Goudsmit.
Mrs Howes has severe M.E. and has 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.
Previous awards
- Howes-Goudsmit Prize Awarded to Caroline Kingdon from the UK ME/CFS Biobank | May 2023
- Severe ME Week: Howes Goudsmit Prize Awarded to Producers of ‘Dialogues of a Neglected Illness’ | August 2022
- Announcing The Howes Goudsmit Prize for Severe ME Research | July 2021
More Information
- Dialogues for a neglected illness (Dialogues for ME/CFS) Videos | May 2023
- The UK ME/CFS Biobank at the London School of Hygiene and Tropical Medicine