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1. Research Areas, Priorities and Technologies to be used. In USA the term used is targeted Requests for Applications by NIH and CDC.
The government research agency / body would stimulate research efforts, and contact and directly engage with researchers nationally and internationally, and in Universities, private research bodies and medical clinics and pharma companies to encourage them to apply for grants to research ME / CFS.
Click here to view Targeted Requests for Applications & Scientific Research Priorities
2. Assign a particular government body or agency to oversee research grants for ME / CFS.
This would be solely focussed on researching ME / CFS and be properly resourced and have it's own Director or General Secretary. It would provide grant funding which would be related to the economic impact of the disease, the level of disability and incapacity of the disease, and the deaths from the disease or it's complications. The government research agency / body would stimulate research efforts, and contact and directly engage with researchers nationally and internationally, and in Universities, private research bodies and medical clinics and pharma companies to encourage them to apply for grants to research ME / CFS.
3. Use well defined diagnostic criteria and biomarkers for identifying ME patients
One should use internationally agreed diagnostic criteria such as the Canadian protocols and International Consensus Protocols below and bio-markers for known abnormalities and dysfunctions and infections, and use objective diagnostic data, and subjective patient reporting of symptoms to correctly identify ME patients.
Click on following link ME and CFS Diagnosis
(a) if the person actually has ME through identifying the exact number of dysfunctions and abnormalities and infections present in the patient through the use of biomarkers for abnormalities and dysfunctions and infections. And the Phase of the illness, both Dr. Cheney and Dr. Hornig have identified Phases of the illness. These Biomarkers are listed in our Diagnostic Section for the Clinic
(b) If the person has ME, then use the diagnostic findings and biomarkers, phase or duration of the illness, and genetic guidlelines to put the patient into an appropriate subgroup. Determine what ME subgroup a patient belongs to.
The above measures would enable researchers to correctly identify ME patients. This would enable research trials to be more accurate, and enable findings to be replicated in other studies. This in turn would facilitate more effective medical drug development and better treatments. It would also help researchers build more accurate population prevalence statistics and enable research institutes and governments to deploy the appropriate level of financial resources and technological resources to resolving this illness.
4. Objectively measure the progress of a treatment or lack of progress (worsening)
Set objective baseline measures, based on biological markers. Objectively measure the progress of a treatment or intervention or lack of progress (worsening) at regular intervals. Use biomarkers and objective data to assess progress and assess recovery or lack of it ? use high quality subjective data and questionnaires to assess patient. Correlate subjective data with changes in obective data and biomarkers. Determine how much time is required for a treatment or intervention to work and if it's effects are permanent or temporary
5. Use Objective Measures to differentiate patients from controls
Use
ROC/AUC, sensitivity, specificity during and after trials to determine and assess results and the validity of such.
6. Use of Biological banks (or Biobanks) and collaborative research across scientific disciples, countries and continents
Due to the complex nature of ME and the many factors involved, and the fact that funding is very low and non-existent in many cases, researchers from different discplines and countries collaborate on ME research projects. For example, the new and emerging use of (ME) Biological Banks or Biobanks storing various types of biological samples (blood, urine, stool, spinal fluid, hair, saliva, lymph fluid, nerve tissue, intestinal tissue, muscle tissue) from genuine ME patients (using CCC 2003 and ICC 2011) are the way forward for ME research globally. A team of researchers could take samples from 200-300 ME patients from a Biobank, including those who are severely ill (bed ridden). And collaborate with other research teams on samples of the 200-300 patients, with various teams focussing on specific aspects such as immune system, infection, mitochondria, neurological and brain, endocrine, intestinal, vascular, etc. The biomarkers listed here could serve as targets - www.me-ireland.com/structure.htm#8 . These research teams could then join their results together to build an indepth profile of all biological abnormalities, dysfunctions and infections present. Then subgroup the patients. New biomarkers could be added and old ones further validated, amended or deleted.
New ME and CFS Biological Banks and Databases
7. Replicating Studies
If replicating use exact methodologies and technologies used by the previous researchers. This will ensure consistency and standardisation. The government research agency mentioned above would actively promote and fund replication studies nationally and internationally. |
