Dr Charles Shepherd of the ME Association has announced that the UK’s ME/CFS Biobank is now ready to send blood samples to researchers anywhere in the world. The biobank is run by a team headed by Dr Luis Nacul at the London School of Hygiene and Tropical Medicine and forms part of the main University College London Biobank at the Royal Free Hospital in Hampstead.
The samples are accompanied by anonymised clinical data from ME/CFS patients who meet Canadian and/or CDC diagnostic criteria. Dr Shepherd, who is the Chairman of the Biobank’s steering group, said that it was now “the most important piece of ME/CFS research infrastructure here in the UK”.
Action for ME, ME Research UK, the ME Association’s Ramsay Research Fund and an anonymous ME Association donor funded the first phase of the work, and the Ramsay Research Fund has also provided £80,000 to fund the biobank’s next two years.
Blood has been obtained from 229 people with ME/CFS, 47 with MS and 108 healthy controls, resulting in over 26,000 sample portions ready to be used for research. Each person who donated blood underwent a detailed clinical assessment and examination before their samples were rapidly transported to the Biobank, where the blood was processed and stored.
As the Biobank grew, the US National Institutes of Health awarded it £1 million for a three-year study looking at the virology and immunology of ME/CFS, which is in progress. Other current projects include a study of natural killer cell function; a gene expression study; a comparison of the different diagnostic criteria used for ME/CFS; and a virology study.
Dr Shepherd said that there were three main benefits of the Biobank: “First is speeding up the process of laboratory-based research into ME/CFS – because high quality samples and accompanying clinical data from people with well-characterised ME/CFS is already there. Second is making it cheaper to carry out lab-based research studies. Third is making samples and clinical data available to new researchers who may not have had easy access to patients with ME/CFS up until now.”
He concluded, “The ME Biobank is firmly established as a vital new part of the ME/CFS research infrastructure.”
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September 28, 2023
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We are writing this article to share some exciting news! On Tuesday, September 26, ME advocates delivered copies of the book, The Puzzle Solver, by Tracie White with Ronald W. Davis, PhD, along with information about ME and Long Covid to Senators on the Hill. The books were donated by an individual living with severe ME/CFS in an effort to raise
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…”and/OR the CDC criteria”. The CDC (Fukuda) criteria means nothing without PEM being mandatory. Unless we KNOW PEM was mandatory (which has NOT been made clear) the blood samples of ME/CFS Dx under CDC/Fukuda patients are meaningless even if they truly had ME/CFS because we cannot say for certain their blood vs someone Dx’d under CDC/Fukuda really had ME/CFS.
Does anyone understand the repercussions of someone Dx’d with ME/CFS under CDC/Fukuda w/o mandatory PEM who does NOT have ME/CFS getting into research and screwing up the outcomes?
If I were doing research I wouldn’t touch these ME/CFS blood samples. Useless.
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