I need to write something to support the development of an ME/CFS patient registry in my country.
I know this was a while ago but can you still recall or dig up, without going to too much trouble, what you wrote about establishing a patient registry?
Yes. The Science for ME forum committee agreed to provide a letter of support. This is an example of the sort of thing the forum can potentially do to assist researchers whose aims align with the forum. We didn't post it on the forum at the time, as it was included in an application for funding.
Here it is:
International ME/CFS community support for the establishment of an Aotearoa New Zealand Patient Registry and associated analyses
HRC Ref ID#: 24/735 Component 1
12 October 2023
Science for ME is an international forum focused on ME/CFS and similar diseases, established and run by both people with ME/CFS and carers for people with ME/CFS. People with ME/CFS, staff of ME/CFS organisations, researchers and clinicians meet to discuss advocacy, research needs and opportunities, and to analyse completed research. We are very pleased to support this proposal for the development of an ME/CFS patient registry for Aotearoa New Zealand.
The need: better knowledge of a significant disease
Despite the debilitating impact of what is a relatively common disease, information about the course of the disease is still very poor. We can’t advise people with any certainty about the chances of recovery, improvement and deterioration. We don’t know what percentage of people are able to work with this illness. We don’t know how factors of age of onset, or sex, or levels of severity, or pregnancy, or menopause affect the disease course. We don’t know whether having ME/CFS affects the likelihood of other diseases. We don’t know how many people are misdiagnosed with ME/CFS and are later found to have other reasons for their symptoms. We think that the disease runs in families, but we don’t understand the patterns of inheritance. There is almost no reliable ME/CFS prevalence data world-wide, and, to our knowledge, none at all in Polynesian populations. We don’t know what causes the disease or what can treat it.
This lack of knowledge is very difficult at a personal level, but, given the large numbers of people affected by the disease (including an increasing number of people meeting ME/CFS criteria after Covid-19), it has major implications for societies and economies.
Patient registries as part of the research infrastructure to meet that need
We are seeing an increase in the number of ME/CFS patient registries around the world in response to the recognised lack of knowledge. People with ME/CFS have welcomed these registries enthusiastically and participation levels have been good. Patient registries have made the disease more visible.
It is relatively early days for ME/CFS patient registries, but we are seeing them (often with associated biobanks) facilitating research, as they have done in other similar diseases such as multiple sclerosis. Registries are improving the quality of research too. Good quality registry governance, including representation of people with ME/CFS in decision-making roles, is helping to ensure that research using registry data or cohorts is answering important questions, is well-conceived, protects the participants, and effectively communicates results to stakeholders. Digital technology (including the incorporation of data from wearable monitoring technology) is making patient registries more cost effective and more powerful.
It is clear that a proportion of the people who develop Long Covid meet ME/CFS diagnostic criteria. ME/CFS registries can provide ME/CFS cohorts in Long Covid studies, to help determine if much of Long Covid is, as seems likely, a type of ME/CFS. If it is, then the long term health outcomes of people with ME/CFS will provide indications of what can be expected with Long Covid.
Reasons for an Aotearoa New Zealand ME/CFS patient registry
An ME/CFS patient registry in Aotearoa New Zealand is particularly important because the existing ME/CFS patient registries are largely of composed of people of northern European ancestry. A registry could help tell us about the Aotearoa New Zealand experience of ME/CFS and societal costs in a way that these other registries cannot. It could help produce research cohorts with unique genetic backgrounds; this is important in genetic hypothesis testing and in treatment evaluation.
Another important reason for a national ME/CFS patient registry in Aotearoa New Zealand is that there is no ME/CFS specialist doctor in the country. Care of individuals with ME/CFS is entirely managed by GPs, many of whom have little knowledge of the disease. No specialist doctor is seeing large numbers of people with ME/CFS and so, as a result, there is no production of consolidated reliable patient records that can help identify patterns and that can contribute to national policies relevant to people with ME/CFS. The screening questions that have been carefully developed for other ME/CFS registries could help confirm diagnostic processes.
Potential for collaborations and research of international significance
The growing understanding of the significance of ME/CFS and Long Covid is resulting in governments and private foundations offering funding for research programmes. Frequently this funding allows for, or even favours, international collaborations of research teams. Aotearoa New Zealand has some researchers who have already undertaken ME/CFS and Long Covid studies of international significance, for example biochemist Emeritus Professor Warren Tate (a recipient of the Rutherford Medal) and his team, and exercise physiologist Dr Lyn Hodges. With an ME/CFS patient registry in place, alongside the established Long Covid patient registry, it will be much easier for Aotearoa New Zealand researchers to participate in international collaborations.
Team
We are familiar with Associate Professor Mona Jeffreys and Professor Paula Lorgelly who are part of the team associated with HRC 24/735 Component #1., and are confident in their ability to deliver the planned outcomes. They have strong networks within the ME/CFS and Long Covid communities. The establishment of the Long Covid Registry was an important achievement. Associate Professor Mona Jeffreys has been a source of accurate information as the Long Covid crisis unfolded. We believe that her lived experience of ME/CFS helps her to work with sensitivity and insight on these post-infection diseases projects.
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On behalf of Science for ME
https://www.s4me.info