Invest in ME - APPG July 2012

AGENDA

APPG AGENDA 4 July 2012

Meeting to be held Wednesday 4th July 2012 at 2pm, Committee Room 17,

House of Commons

1. Welcome by the Chair

2. Research relating to those who are severely affected by M.E.

Speakers:

• Professor Derek Pheby, Visiting Professor of Epidemiology,

Buckinghamshire New University

- Prevalence of severe ME

- What research has told us about risk factors for severe ME

- What additional research initiatives are being pursued and why

- The lack of understanding by health care and other professionals

- The impact of severe ME on the lives of patients, carers and families

• Clare McDermott, NIHR Doctoral Research Fellow, Department of Primary

Care and Population Sciences, University of Southampton

- Drawing on experiences of the recovery journey from people severely

affected by CFS/ME- development work and plans for a community based

intervention

study.

Followed by question and answer session

3. AGM

i. Election of Chairman

ii. Election of Vice-Chairman

iii. Election of Secretary

iv. Election of Treasurer

4. Minutes of the last meeting

5. Matters arising

6. Date of next meeting

7. Any other business

IiME Input to Meeting

IiME to Chair of APPG

July 2012

Invest in ME would like to raise these points and questions for the APPG meeting on 4th July 2012.

1	"Severely affected" is a commonly used term and can range from those who are severely incapacitated (medically) to those who are able to be more mobile but unable to function fully. What diagnostic criteria are used when defining severely affected patients with ME - or any patients with ME?

2	Is there a need to define patients less generically and consider the "very seriously" (medically) affected patients whose needs may often be quite different to those of less severe patients? This is important for treatment(s) as well as research.

3	Is it not relevant and necessary that a standard set of diagnostic clinical criteria, which are more stringent than the ineffectual NICE guidelines, need to be used and standardised on for all research into ME?

4	What happens to those severely ill patients whose "recovery journey" has not lead to recovery? Is there a plan to follow-up the health of these patients?

5	Are there any statistics on patients whose "recovery journey" has been made worse by CBT, GET and forced activity management.

6	There is no national registry of ME patients - let alone severely ill ME patients and how/where they are being cared for? What steps need to be taken to enable this? Can the APPG not send a clear signal to DoH and the Chief Medical Officers that such a registry is of absolute importance?

7	The "lack of understanding" mentioned by Dr Pheby stems from incorrect education of healthcare professionals (something Invest in ME raised in a previous APPG meeting). Who is educating healthcare staff? The science presented at the latest Invest in ME conference in London made a real difference in the minds of healthcare professionals who attended based on the feedback we received. The way the immune dysfunction affects the brain function was explained using established science.

8	Where is the expertise on severely ill ME patients in the UK?

9	There is a need to examine tissue samples from ME patients to gain proper understanding of the pathology of ME. This was agreed unanimously in the recent Clinical Autoimmunity Working Group meeting set up by Invest in ME and the Alison Hunter Memorial Foundation in May 2012 in London (see http://www.investinme.org/IIME%20Statement%202012-05-31.htm). Can the APPG not send a clear signal to MRC, DoH and the Chief Medical Officers that such a tissue bank is of absolute importance? Dr Pheby's research (Pubmed - http://www.ncbi.nlm.nih.gov/pubmed/20924033) indicates this is "both desirable and feasible". Note: A tissue bank is not the same as a blood bank.

10	The charity has been amazed to hear recently of one of the CFS Clinic's clinical CFS champions seemingly still not believing that patients do die from ME. This shows ignorance of the evidence being presented at biomedical conferences such as those organised by Invest in ME. We feel this will remain a major hurdle for people with ME and their families if these same CFS clinics and their staff fail to differentiate between chronic fatigue and ME and remain ignorant of true nature of this disease.

11	Bearing in mind the obvious need for a strategy of biomedical research into ME, and Dr Pheby's remarks on future needs, will the APPG endorse the Invest in ME proposal for an examination and research facility being established in Norwich research Park, which could lead to a UK Centre of Excellence for ME research?

12	Unrelated to the above discussion - would the APPG be happy for Invest in ME to seek out grants and other possibilities to allow the direct streaming of the APPG meeting through the internet so that all ME patients and their families could follow simultaneously with the parliamentary group's meetings?

13	Invest in ME would also like to thank the chair and Vice-chair of the APPG for their efforts and engagement with people with ME during the last period. We hope that the future make-up of the APPG will reflect the increased awareness and acceptance that only a national/international strategy of biomedical research into ME can offer any hope of relief from this disease for the hundreds of thousands of patients and family members who suffer the effects.