“The new grant from the NIH (US) will enable, for the first time, comprehensive prospective assessments of cases of ME/CFS at regular intervals.
“This greatly enhances the chances of a breakthrough in the understanding of the pathophysiology of this complex disease and the identification of much-needed biomarkers for the diagnosis of different sub-groups of patients.
“We very much look forward to continuing our partnership with the patient community, which has been key to the success of our research so far.”
Dr Luis Nacul, Principle Investigator, CureME team, LSHTM.
“This is a significant and vital sum of money that will help scientists unravel the mysteries of this devastating illness.
“The irony is that the funding comes once again from America.
“What this seems to suggest is that the USA is far more serious about finding the underlying causes of M.E., while the UK seems most willing to invest in inappropriate studies using cognitive behavioural therapy and graded exercise.
“The fact that the NIH has decided to provide another major grant is an important endorsement of the ME/CFS Biobank, and we would like to congratulate all the staff who have been involved in setting up and developing what has become a vital new part of biomedical research infrastructure here in the UK.
“We hope that other research groups will also now start to make use of this unique resource to achieve desperately-needed breakthroughs into the cause and treatment of ME/CFS.”
Dr Charles Shepherd, Hon. Medical Adviser, ME Association,Chair of the UK ME/CFS Biobank Steering Committee.
- They will be studying 110 ME/CFS cases (half severe, half mild-moderate) meeting all of the CDC, Canadian Consensus, and Institute of Medicine, criteria.
- They will focus on detailed immunological and clinical phenotypes (subgrouping patients by immune differences, such as the number of different immune cells and cytokines, and clinical differences, such as severity).
- Analyse inter-relationships (the relationship between the immune differences and differences in severity/symptoms and changes over time).
- Cases will be assessed every 6-12 months, over 5 time points, to record changes in biomarker expression and link these to clinical parameters (whether their condition has gotten better, worse or remained stable) in order to analyse biomarkers at different stages of disease progression and try to identify subgroups.
- Cases will be grouped according to trends in symptom severity using scores relating to pain, fatigue and functional status.
- In-depth Immunological Profiling (to try and identify biomarkers) will involve:
- They then want to determine whether changes in immune parameters come before, after or predict the changes observed in clinical presentation (changes in symptoms and severity over time).
- This will be done by quantifying correlations between immunological biomarkers and by identifying biomarkers associated with changes in ME/CFS clinical status.
Significance of the study