Elevate

A support group for people with ME, CFS & post viral conditions

Deficient EBV-Specific B and T-Cell Response in Patients with CFS

by

Editor’s Comment: In this study, a subset of CFS patients was found to have an immune deficiency that allows Epstein-Barr virus (EBV) to replicate, even beyond the acute stage of the original infection. B-cells are the part of the immune system that “remembers” pathogens (viruses, bacteria, etc.) in order to mount attacks against future infections. The patients in this study showed an impaired B- and T-cell response to EBV, leading to latent virus reactivation. (EBV, like all herpesviruses, remains in the body forever.) The early theory that CFS was a form of “chronic mono” now appears to have substantiation.

By Madlen Loebel et al.  (Thanks to Prohealth)

Plus One paper: http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0085387

UK Rituximab Trial – 75% of funds raised

by

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.

http://www.investinme.org/IIME%20Statement%20UKRT%202013-09-24.htm

NHS Norfolk ME and CFS Service Development Progress

by

(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
biomedical approach.

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.

Next steps

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