A massive £200k has been pledged to IiME (Invest In ME) by a charitable foundation towards the UK Rituximab treatment trial which will replicate the work pioneered by Norwegian researchers. This research involving the cancer drug Rituximab gives clues to the pathophysiology of the disease and may also produce bio-markers that may be used in future to help diagnosis. Rituximab acts on B cells and so the positive effects on a large proportion ME/CFS patients suggests that at least a subgroup have a disease with an autoimmune element. The researchers are just as interested in those who aren’t helped by Rituximab as those who are, so this research may be beneficial for all ME/CFS patients.
Possibly game-changing research news from the
Chronic Fatigue Initiative (CFI)
Pathogen Discovery and Pathogenesis Study
The development of a European biobank (blood, tissue, cell or DNA samples) for ME/CFS is an important step in research so this surprise award from USA’s National Institutes of Health is very encouraging for this pioneering project that was started in 2011.http://www.meresearch.org.uk/news/mecfs-biobank-given-1-million/
(This is from ‘ME Support Norfolk’ August newsletter)
Progress to date
A process has been adopted to ensure that patients or service users
and their carers are provided with an opportunity to shape the
development of the M.E. and CFS service in Norfolk and Suffolk
through co-producing key documents.
A Needs Assessment for Norfolk and Suffolk was produced by a
Public Health Consultant following an extensive literature review and
detailed discussions with local service users and their carers. This
Needs Assessment has formed the foundation for the establishment
of a new service specification.
The new service specification is predicated on a consultant-led
Separate pathways have been established for M.E. and CFS based on
different criteria. Diagnosis and management of M.E. and CFS will be separate.
This specification has been agreed in principle by the CCG-led
Norfolk community collaborative commissioning group.
The specification needs to be further validated by experienced
costs for the new service specification will have to be developed and
reviewed by CCGs.
A new Steering Group, supported by a wider Reference Group, is to
be established to ensure that the voices of patients, carers and
healthcare professionals can be heard.
An appropriate procurement process will be undertaken to secure
the agreed service.
NHS Anglia Commissioning Support Unit, on behalf of:
Norfolk and Suffolk Clinical Commissioning Groups
Research News: hope for a drug therapy?
www.ukrituximabtrial.org In summary UK charity Invest In ME has set the ball rolling for a UK confirmatory trial of the drug Ritximab and is working hard to raise funds.
At Invest in ME’s international conference in 2011, Norwegian cancer specialists Dr Øystein Fluge and Professor Olav Mella announced strikingly successful results in their pilot study of the immunotherapy drug Rituximab on ME/CFS patients. In that study [R1] 67% of ME/CFS patients had moderate to major improvement, compared to only 13% of controls.
The pattern of response indicated that ME may have an autoimmune component because rituximab works by temporarily wiping out immune-system B cells, which are implicated in autoimmune disease.
Multiple confirmatory trials are crucial because without evidence on safety and efficacy from independent studies in several locations, regulatory bodies will not approve or license rituximab for use in ME. READ MORE BY CLICKING HERE
The ME Associaton is supportive but cautious optimistic about Rituximab trials and you can read their detailed view by clicking here.