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| From 'The relation between ME/CFS disease burden and research funding in the USA' article by Dimmock & Jason . |
Myalgic Encephalomyelitis (ME) is a complex illness with symptoms that cross several medical disciplines – neurology, cardiology, endocrinology, immunology, muscle pathology, epidemiology and many other areas.
Research into the underlying cause of ME is difficult because of the multisystemic nature of the illness.
ME research is appallingly underfunded compared to other serious medical conditions.
ME is one of the greatest public health challenges of our time despite being classified as a neurological illness by the World Health Organisation (G93.3).
ME, a biological condition has been mismanaged throughout medicine.
The evidence shows that ME has mostly been misunderstood and maligned, the patients neglected and gaslit because diagnosis and management.... or lack of management.... or inappropriate management, are too often driven by lack of medical knowledge and misconceptions, and policy development as well as research hampered by a certain psych cabal.
Simplistic and ineffectual psychological therapies are being offered in place of real treatments, wasting public money and doing nothing to help patients.
This has resulted in ME patients having no real healthcare service and far too little progress being made in attracting new researchers or clinicians to study the disease. In fact in the UK a NICE assessment ranked BPS papers as 87% very low quality and 13% low quality.
As well as the above mentioned issues, the overemphasis on fatigue unfortunately 'allowed' ME to become more and more disappeared and to be defined by some as a psychiatric illness, thus condemning some very seriously ill patients to a lack of proper diagnosis, lack of appropriate testing, lack of treatment and understanding of the symptoms, and equally damaging to a lack of interest in pursuing biological research for the condition.
ME is more debilitating than many chronic diseases including multiple sclerosis, chronic renal failure, congestive heart failure, lung cancer, stroke, and type-2 diabetes.
As many as 75% of patients are unable to work.
An estimated 25–29% are homebound or confined to bed.
ME costs the state thousands in lost productivity and medical costs a year.
As many as 75% of patients are unable to work.
An estimated 25–29% are homebound or confined to bed.
ME costs the state thousands in lost productivity and medical costs a year.
Mary Dimmock and Leonard Jason describe the relationship between ME disease burden and research funding in the USA in a research article entitled The relation between ME/CFS disease burden and research funding in the USA.
Actively seeking funding and research must be our top priority if we are to obtain a better understanding of ME and discover effective forms of treatment.
We at ME Advocates Ireland (MEAI) regard the funding and promotion of biomedical research as much a priority as education and awareness raising of appropriate information about ME.
We need to invest only in biomedical research studies and projects that will lead to a better understanding of underlying disease mechanisms in ME across all the medical disciplines involved, in the development of reliable diagnostic tests for use in clinics, and in safe and effective forms of treatment.
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In recent years there are very reputable scientists now involved worldwide in ME research adopting appropriate and more stringent diagnostic criteria on trial participants. Please see the research that is taking place via the links below.
Summary of recent significant biological research findings in people with ME here.
The US ME advocacy group 'ME ICC Info' has provided us with a list of ICC Research, see more
here. The same links will always take people to an up to date version. Thanks to Colleen Steckel for sharing the document with us.
The ME Association in Australia, ‘Emerge Australia’ provide summaries of the latest research with links to articles in their monthly research digest, here is the Research Digest for July.
Here is a link to Emerge Australia’s complete
Research collated by the ME Association UK here is an extensive library updated regularly and free to access.
Good quality research provides much-needed hope for a deserving and desperate patient community.
ME Research UK
One of the ME research groups closest to us is in the UK, i.e., ME Research UK whose primary aim is to fund biomedical research into ME – to find its cause, develop effective treatments and ultimately discover a cure. Learn about their projects, the research they have supported and more here.
Invest in ME Research
Invest in ME Research another UK research group is an independent charity whose work involves attempting to change this situation by annual international research colloquiums and public conferences.
The charity has been funding and facilitating biomedical research into ME and the training of medical students.
More about IIME here.
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The table included in an NIH report published March 2023 displays the annual support level for various research, condition, and disease categories based on grants, contracts, and other funding mechanisms used across the National Institutes of Health (NIH), as well as disease burden data published by the National Center for Health Statistics (NCHS) at the Centers for Disease Control & Prevention (CDC). ME appears as Chronic Fatigue Syndrome (ME/CFS). Funding is shown for previous years including 2021 and 2022, with estimates for 2023 and 2024. The figures show that ME research continues to be appallingly underfunded compared to other serious medical conditions. (It may be easier to see the table on a laptop or computer)
Update
30/12/23
As the year is nearing its final chapter, it is time to review some of the ME studies of 2023; here’s an overview of some of the research this last year looking at Myalgic Encephalomyelitis (ME) via ME/CFS Sceptic.
Please note that not all the research labeled CFS or ME/CFS used strict ME criteria so results may not be specific to ME.
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