What is ME/CFS?
ME/CFS is highly debilitating and even at a mild level it can mean that people have lost 50% of their capacity, have an inability to work, or even have a family. 25% are so severely affected that they will be unable to mobilise or carry out any daily tasks for themselves, are in bed for the majority of the time, are generally extremely sensitive to light, touch, sound, and smell, and rely on full time care.
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ME/CFS is under-diagnosed in the community and its prevalence is increasing due to Long Covid.
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For decades ME/CFS has been a neglected area of biomedical research.
In 2006, the Gibson Report called for further inquiry into the scientific evidence on ME by appropriately qualified and independent experts such as virologists, immunologists, biochemists, and geneticists. The report called for large-scale epidemiological research studies. One of its main recommendations was that the MRC put £11m into biomedical research and that:
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“The necessary research must be funded immediately.” (2006)
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However, the research expenditure per patient for ME/CFS between 2006 and 2015 was just £40 compared with £320 for those with Rheumatoid Arthritis and £800 for those with Multiple Sclerosis.
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ME Research UK states that “[..] biomedical ME/CFS research has been an egregiously neglected and underrepresented area. Both the Gibson report and All-Party Parliamentary group (APPG) report on ME called for Government research bodies to ensure that there is a parity of biomedical research funding between ME and other serious long-term conditions. Despite this being highlighted for almost two decades, this call has not been addressed.”
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For decades the severely disabling impact of ME/CFS has been known and neglected.
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In 2002 the ‘Report of the CFS/ME Working Group’ to the Chief Medical Officer examined extensive evidence to find that: “CFS/ME [as then known], is a relatively common clinical condition, which can cause profound, often prolonged illness and disability and can have a very substantial impact on the individual and the family. It affects all age groups including children.”
Even at a mild level it can mean that people have lost 50% of their capacity, have an inability to work, or even have a family. 25% are so severely affected that they will be unable to mobilise or carry out any daily tasks for themselves and are in bed for the majority of the time, are often unable to tolerate any noise, and are generally extremely sensitive to light. ME Research UK state:
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“Research indicates that people with ME/CFS experience higher levels of functional impairment and lower levels of wellbeing, compared with conditions including depression, cancer and rheumatoid arthritis (RA).”
Research identifies that people with ME/CFS live with the lowest quality of life index of any disease.
The 25% worst affected with severe ME can experience feeding difficulty necessitating specialist feeding tubes for which there is currently no NHS protocol and limited community support putting them at risk of death. This year alone at least four young women have been admitted to hospital in need of feeding tubes due to the severity of their ME. None are being provided treatment in line with NG206 NICE Guideline for ME/CFS 2021.
This despite the upcoming Inquest of Maeve Boothby O’Neill who died in similar circumstances in 2021 as a consequence of her severe ME after three hospital admissions. The absence of biomedical research has contributed to this situation of ignorance amongst the medical profession leading to poor clinical outcomes and life experiences for people with ME. ME/CFS is under-diagnosed in the community and its prevalence increasing due to Long Covid.
A figure of 250k has long been quoted for the prevalence of ME, however the illness is known to be under-diagnosed. The NICE committee identified that GPs lack the confidence to diagnose ME and have few specialists from whom to seek advice. It was also identified that the illness is not taken seriously enough, and patients have experienced “disbelief about their illness and the impact it has on their day-to-day functioning”. Consequently, many people with ME have minimised their attendance at GPs and hospitals. ME/CFS is frequently coded incorrectly in patient records and a recent Freedom of Information request has established that the data is not collected by NHS England.
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ONS figures for the period between November 2023 to March 2024 reported two million people living in private households in England and Scotland were experiencing self-reported Long Covid. A significant proportion of people with Long Covid now also meet the criteria for ME/CFS (studies report percentages ranging from 13% to 58.7%). The community of people experiencing Long Covid symptoms have reported similar experiences of disbelief from medical practitioners.
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ME Research UK state that:
“Furthermore, as conveyed in the DHSC interim delivery plan, there needs to be better education of and awareness amongst medical practitioners about long COVID and ME/CFS to enable appropriate management advice to be given.”
The cost to the economy is significant, money invested now will reduce long term costs.
The 20/20 Health.org “Counting the Cost” report identified the cost to the UK of ME/CFS at £3.3 billion per year in 2017 (based on studies calculating costs for April 2014 to March 2015 and using a cautious assumption of 0.4% prevalence). This cost has undoubtedly risen due to the increase in the numbers of ME/CFS patients via Long Covid. A fraction of this £3.3 billion annual cost committed over a minimum of 10 years could significantly improve this financial burden on the nation.
Whilst the MRC has had a research highlight notice in place since 2003, funding in this area has not been increased. Only £8.05m has been spent on ME research over the last 10 years. Since 2020, the MRC and NIHR have collectively awarded £50 million for research on ME/CFS and Long-COV ID. This is small compared to other diseases, especially when both the numbers affected and the historical lack of funding into post viral/ ME/CFS biomedical research is taken into consideration.
Because research funding is historically low and is not ring fenced and thus guaranteed (unlike diseases such as Alzheimer’s, Motor Neurone Disease, and brain cancer) researchers have been unable to plan studies, investigate over a longer period, or recruit both staff and participants. This leads to researchers leaving for other areas that are funded. There is therefore a need to invest in programmes of training for specialist researchers to work in the field of ME and Long Covid.
Long term guaranteed programmes of research require long term funding commitments to attract high calibre researchers.
Decode ME, which aims to find genetic risk factors of ME/CFS to better understand the disease and ultimately to find treatments is a major step forward. However, this study has recently delayed the timing of its results. Alone, this study is unlikely to lead to treatments in less than a decade. Yet Decode ME has identified that ME/CFS gets worse with time. Patients who have been suffering for decades already can ill-afford to wait for the outcome of this one study and its (yet uncertain) follow up studies. In the meantime, the research which would potentially have the greatest and swiftest impact for many sufferers would be to look at repurposing existing medications, based on existing research as reviewed in Nature.
Research choices must be directed to biomedical research for biomarkers and treatments.
The Gibson Report of 2006 noted “a clear historical bias towards research into the psychosocial explanations of CFS/ME… despite Parliament recognising ME as a physical illness in the ME Sufferers Bill in 1988”. Over many years significant funding has been granted that purported to be relevant to the field of ME/CFS which was found to be of “low” or “very low” quality by the 2021 NICE guideline review.
It is imperative that funding is directed to high quality biomedical research that will support diagnosis and treatment.
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In October 2021 the NICE guidelines for ME/CFS made recommendations for research on diagnostic criteria, research on core outcome sets to shape and optimise trial design, and research on diagnostic tests for ME/CFS to facilitate early diagnosis and potentially lead to better patient outcomes. To speed the progress of research findings into the clinical domain we need centres of excellence to be set up,in a similar manner to that established for heart disease at the Bristol Heart Institute.
We know from the rapid development of Covid-19 vaccines that when it is prioritised and funded appropriately biomedical research can produce effective solutions in rapid timeframes. For the sake of the health and wellbeing of significant numbers of families, as well as to alleviate the financial burden on our nation, ringfenced funding for biomedical research is urgently needed. Further, there is a need for mechanisms to facilitate the attraction of high calibre researchers to the field and to support the integration of research directly into clinical practice.
The Billboards for ME/CFS and Long Covid initiative has been created and funded by people in the community who are suffering with these debilitating illnesses. Its aim is to get NIHR and DHSC to take action to stimulate fundamental change in this field by committing to research investment commensurate with the disease burden.