*ONS 2023 estimates and assuming 50% of UK LC population
*Identified by BACME
*#ThereForME Policy Brief 2024
Open-OH offers the 11-item Chalder Fatigue Scale which is a patient-reported outcome measure (PROM) commonly used by many clinicians for assessing the severity and chronicity of fatigue
Whilst other PROMs exist and are used across different services, no single gold standard measure exists for ME/CFS yet as the condition lacks a definitive diagnostic test, and no single existing PROM has been proven to comprehensively and reliably capture the full range of symptoms and severity across all patients
With that said, there are ongoing efforts to develop and validated appropriate PROMs, such as those funded by the ME Association who ELAROS is working with alongside leading clinical academics at University of Leeds and Imperial College London, so watch this space!
For now, users can share their Chalder Fatigue outcomes with health professionals where available which is an internationally recognised tool
Access free support resources from various trusted sources listed below to learn management strategies routinely deployed in clinical services and other support available in your region.
ELAROS currently supports many NHS ME/CFS services in the United Kingdom.
Open-OH aims to list available NHS services that still remain and are open to referrals, though this is subject to change as services close and new ones open.
In the absence of publicly funded services, we may list private services including third sector (charitable) organisations and peer support groups, to provide our community with more options in their region.
In the future our international users outside of the UK will be able to find services in their territories, for example in Republic of Ireland where ELAROS is supported more publicly funded services.
We have a long-standing history supporting NHS Long Covid services since 2020 with our digital C19-YRS platform that was recommended in NHS England’s national guidance and commissioned nationally by NHS England for all Scottish Health Boards.
Whilst ME/CFS is different and was officially classified as a disease by the World Health Organisation in 1969, Long Covid and ME/CFS are similar in that they share many symptoms; they can (but not always) be considered as post-viral conditions that follow an infection; and people can often meet the diagnostic criteria for both conditions amongst others.
Since supporting over 65 health organisations, 30,000+ patients, numerous research studies and collaborated with world-leading experts, charities, and clinical societies, there has been an undeniable trend towards establishing integrated long-term condition management services and condition-agnostic services which aim to support people with diagnosed ME/CFS or a presentation of ME/CFS-like symptoms.
We believe that, with our knowledge of NHS service provision and all its flaws and limitations, along with the support of our huge clinical network, academic collaborators, and community of people with lived experience with ME/CFS, we can help people, patients and clinicians alike with a range of solutions accessed at home or clinic as Open-OH continues to grow.
ELAROS is currently working closely with University of Leeds, University of Oxford, Imperial College London. The ME Association and more on various research studies aimed at supporting people with chronic illness and clinical support services
As Open-OH grows, our app users will be able to keep up to date with news on our research and how to participate in upcoming research studies
Open-OH is still a work in progress and new features are continuously being added to support people with a range of conditions and severities.
At the moment, Open-OH offers guidance for health education, symptom management strategies, employment support and benefits advice, alongside validated clinical measures and daily monitoring tools which people with mild to moderate ME/CFS can benefit from.
Our initial pre-launch version may not be suitable for those with severe of very severe ME/CFS, whose needs often require more intensive, individualised care from a qualified health professional, which Open-OH is not. We deeply respect the complexity of all experiences with ME/CFS and remain committed to finding more appropriate solutions for people and their carers.