ME Biobank receives a grant of over $2 million from the NIH in the US

The ME Biobank is led by Dr Luis Nacul and based at the London School of Hygiene and Tropical Medicine. Samples for the Biobank have been collected from patients in London and East Anglia.  The Biobank is especially important as the Biobank Team traveled long distances to collect samples from severely affected patients, a cohort rarely included in research projects.

The project is a longitudinal study that is measuring changes in the immune system and genetic profile of individuals in a disease whose symptoms are known to fluctuate over time. The initial £1 million project, which began in 2013, was over 3 years and had also been made possible by funding from NIH.
The new grant will enable the Biobank to increase in size as even more blood samples and clinical data will be collected from people with ME/CFS, multiple sclerosis, and healthy controls, and then made available to research applicants.
You may recall that last year Dr Nacul and his team prepared a feasability report of Implementation of a Consultant Led ME & CFS Service in Norfolk & Suffolk.  Work continues with Commissioners to develop the local service.

Our Group is delighted that the work of the Biobank searching for ME biomarkers is secured until 2021 as a result of this grant.

ME & CFS Service no longer providing letters in support of benefit claims

As of last week the ME & CFS Service are no longer providing these letters.  The decision has been made by the Provider of the Service (ECCH) without consulting patients even though this support has been provided for many years.  These letters are very much valued by patients.  It appears to be a cost cutting measure which will disproportionately affect the severely affected who are least able to access GP services.

The DWP state ''When deciding benefit entitlement it is essential that the right decision is reached.  Up to date and relevant information is central to this process.''

Our group has already been in touch with Commissioners and the Joint Health Overview and Scrutiny Committee regarding this significant change in service provision.  In the meantime it would be very helpful if we could pass on any comments via the 'Contact Us' tab that you would like to make regarding this change and how it will affect you.  Comments will be kept anonymous.

ME & CFS Service Development Featured on BBC Radio Suffolk and BBC Radio Norfolk

 
On 15 August 2017 local Radio in both the Suffolk and Norfolk covered the devastating impact of ME & CFS, NICE Guidelines and Service Development.

Barbara Robinson, a Carer Rep on our group, gave interviews which were carried on both the local radio stations.  Barbara included thanks for Suffolk Commissioning who are continuing to work hard to develop the ME & CFS Service.

This is the link to the BBC Radio Norfolk programme which is available for 30 days from broadcast  

And this for BBC Radio Suffolk, again available for 30 days from broadcast.

The issues surrounding ME and CFS were included in the headlines throughout both of the Mark Murphy and Nick Conrad morning programs. 

You can find a transcript of the discussions on the ME Association website (with sincere thanks to Russell Flemming for his hard work on this). The MEA transcript also includes the times the items were broadcast so that you can skip forward to them if you wish.

Meeting with Suffolk Commissioning 13 July 2017


Representatives from the Patient / Carer Group met with Suffolk Commissioning on 13 July.  We were reassured that Suffolk Commissioning remains committed to developing the ME and CFS Service.

A meeting is to be convened between all of the 7 CCG's who commission the ME & CFS Service to decide how they are going to regroup and move forward.

When this meeting has been held a further meeting will be arranged to update the Patient / Carer Group.

The Patient / Carer Group has confirmed the action points from the meeting with Suffolk Commissioning.  These action points evaluation of the current level of equality of care for people with ME & CFS in our region, as recommended by the Joint Health Overview and Scrutiny Committee.

 


Meeting of the Joint Health Overview and Scrutiny Committee (HOSC) 4 April 2017 - Meeting Documents



The meeting documents have now been published on the Norfolk County Council website.

This is a very long document and also contains issues that the Joint Committee are considering other than the ME & CFS Service.

A list is below of the individual documents relating to the ME & CFS Service.

01Public Participation Session - At the January 2017 Joint HOSC meeting, with the permission of the Chairman, Barbara Robinson, a member of the Patient / Carer Group spoke about the ME & CFS Service.

02. Update on the ME & CFS Service by Gt Yarmouth & Waveney CCG at the January 2017 Joint HOSC meeting

03. Suggested Approach from the Joint HOSC regarding the ME & CFS Service - March 2017

04. Timeline of submissions to the Joint HOSC regarding the ME & CFS Service between 2008 and 2017

05. Briefing from Gt Yarmouth & Waveney CCG - March 2017

06. Feasibility Assessment of Implementation of a Consultant Led ME & CFS Service in Norfolk & Suffolk - November 2016


08. Patient Change Audit - January 2016

09. Children's Survey - December 2013

10. Briefing from ECCH - Provider of the ME & CFS Service - March 2017

11. Complaints about the ME & CFS Service 2014 -2017

12. ECCH Patient Survey January 2014

13. Report of Patient Experience from the Patient / Carer Group - March 2017

14. All the Meeting Papers for the 4 April 2017 Joint HOSC

A representative from the Patient / Carer Group will be attending the meeting.  A presentation will be given at the discretion of the Chair of the Joint Committee.

Suffolk Commissioning are leading the service development process and will also be attending the meeting.

Update: Minutes of the meeting can be found here


The NHS asking for interest from Providers to deliver a Consultant led service in Norfolk and Suffolk


Yesterday, Suffolk Commissioning issued a 'Prior Information Notice' on behalf of the 7 CCG's who commission (or buy) the ME and CFS Service from Provider(s).

The CCGs are interested in transforming this into a consultant led model consistent with the current international consensus evidence base for ME and CFS.
The aim of the service will be to improve outcomes (particularly for those with severe ME), increase ongoing support and provide a more holistic multi-disciplinary team approach to care. The total annual budget for the community element is anticipated to be in the region of 500,000 GBP.
This Prior Information Notice does not guarantee anything, but rather it is 'dipping a toe in the water' to see if there are any Providers willing to deliver the service for the funding available.  

The Prior Information Notice will run for a month.

Meeting of the Joint Health Overview and Scrutiny Committee (HOSC) 4 April 2017


The role of the Joint HOSC is to hold local services to account.  A briefing for the Joint HOSC was provided by the NHS for the meeting in January 2017. 

The Joint HOSC have reviewed representations made by the NHS in response to the complaints that have been made by the Patient / Carer Group.  

We have repeatedly complained about the serious shortcomings in care and the failure to deliver on promises for improvement accepted by the NHS and made on the recommendation of the Joint HOSC in 2009.