APPG for ME AGM 4th July 2012
July 2012
APPG AGENDA 4 July 2012Meeting 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 PrimaryCare 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
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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?
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| 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.
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| 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. |
