Next Wellington Support Group Meeting, Tuesday 3 March, Anvil House, Wakefield St: 12:30-2:00pm.

Hello everyone,
WellMe’s next support group meeting is Tuesday 3 February 12:30 – 2.00pm, Level 1, Anvil House,138-140 Wakefield Street, Wellington City. Please note the day change from Monday to Tuesday due to room availability at Anvil House. We have also reduced the meeting time to one and a half hours to enable people to get to the meeting and return to their cars within local 2 hour parking time limits.

The heat of summer is difficult for people with ME/CFS to cope with and I hope you are all managing to hang in there. Long summer evenings can also be very beautiful and lift the soul. Come along and share your tips and coping mechanisms. Family and non-members are welcome to join in.  Light refreshments will be available, but you are also welcome to bring your lunch. For non-members, a gold coin donation towards the refreshments would be appreciated.

Anvil House is accessible to all main bus routes and there are usually car parks available across the road in the Michael Fowler Centre car park, $4hr for 2hr maximum. A reminder that meetings are ‘fragrance free’ and that you may come and go as you need to for your own comfort.

I hope to see you all there.

Kindest regards,
Catherine Kunz-Entwistle
Chair
WellMe (Wellington Region ME/CFS Support Group Inc)

Summary of Research and Medical news from Janice Roseingrave’s ‘Janice’s Blog from Europe’.

The following article, written by Sandra Forsyth (a member of WellMe) is a summary of former Wellingtonian Janice Roseingrave’s blog on research and medical news from  ‘Janice’s Blog from Europe’. Janice is a long term member of WellMe, but is now based in Brussels.

Janice has lived with ME/CFS for 17 years and says she went to Europe with an open mind about how her illness was treated there. Janet wanted to know as a patient and a patient advocate whether anything had changed and whether CFS/ME was moving in a ‘good’ direction. Although Janet says she is heartened by what is happening, she says it would be good to ask her again in two or five years. Janice however was dismayed to discover that those in Europe and the UK are still fighting for recognition of their illness.

Janet’s blog primarily concerns one of two conferences held in the UK in 2013 – the Action for ME Research Conference held on 8 November 2013. Speakers included:

Dr Stephen Holgate, Professor of Medicine at the University of Southampton spoke on ‘A New Approach to Research in ME/CFS’ addressing issues affecting medicine as a whole which will go on to affect the ME/CFS population. Dr Holgate noted:
• Genetics are playing an increasing role in medicine.
• Cost of this technology is decreasing allowing for easier access.
• Pharmaceutical companies are downsizing and concentrating on illnesses that challenge (and have a wider market?) ie cancer. The average timeframe to produce medicines is 10-15 years.
• The way patients are treated is shifting. With access to the internet patients are often more knowledgeable than their GPs challenging GPs to ‘look outside the box’. Dr Holgate says ME/CFS is one of the best examples of this.
• Treatment is no longer ‘one size fits all’ but personalised to the patient – cancer is an example of this.
The importance of ME/CFS
• There appears to be no organ in the body that is affected by this illness.
• It is estimated between 0.4%-1% of UK’s population has ME/CFS ie 240,000–800,000 people.
• 50% cannot work ie 225,000 people in the UK alone.
Research is Difficult
• Amongst the medical profession, agencies and the ME/CFS organisations disagreement exists as to definitions, causes, mechanisms and diagnostic criteria.
• ME/CFS is accepted as being characterised by neurological symptoms, muscle pain with intense physical or mental exhaustion, relapses and specific cognitive dysfunction.
• Doctors and researches do not know causes or pathology of the illness.
• There appears to be different sub groups of people with this illness.
The Changing Focus of Healthcare
• There is a massive cultural change to shift focus to moving patients through the entire diagnostic process not just managing stages of diagnosis and treatment:
Information & Knowledge ↔ Health Practitioner ↔ Patient
Information & Knowledge ↔ Patient ↔ Health Practitioner
P4 Medicine Elements
• Personalised based on individual genome.
• Predictive to determine individual’s risk for disease.
• Preventative prophylactic (ie use medicine or action to prevent disease) measures to be taken to decrease risk.
• Participative prophylactic interventions will require participation of individual.
Professor Holgate’s speech can be heard on http://youtu.be.uZV49dGf12c

Sonya Chowdhurry, CEO of Action for ME then spoke about the UK CFS/ME Research Collaborative (UK CMRC) launched in April 2013 to bring together researchers, major funders and ME charities with the aim of:
• Providing a mechanism for those groups to work together in a collaborative and coordinated way.
• Increasing awareness of ME within the research community.
• Highlighting priorities for research funding to assist funders eg the Medical Research Council.
• Increasing funding for ME research.
Sonya Chowdhurry reported the Collaborative was committed to working collaboratively even where there were differences of view to help shape the future direction of ME research. An example of this is the UK Respiratory Research Collaborative established in 2006 with the aim of driving forward respiratory research resulting in a three-fold increase in research funding, research projects, programmes, centres, networks, Fellowships and PhD studentships.

Sonya Chowdhurry said the ME/CFS Collaborative hoped to attract researchers, grow their knowledge in a similar way and stimulate investment in high quality peer-reviewed research. Together members had the potential to make a real difference to those affected by ME/CFS.

Professor Holgate concluded the conference by saying ‘The influence of the whole is greater than the sum of individual parts’.
Janice also commented on the following:
ME/CFS Disease Register: Professor Derek Pheby – Faculty of Society and Health, Buckinghamshire New University and Action for ME Trustee.

• The ME/CFS Disease Register was originally developed at the London School of Hygiene & Tropical Medicine one of six projects funded by the Big Lottery Fund and part of the National ME/CFS Observatory project. The Register contains details of volunteers with confirmed diagnosis of ME. Initially restricted to a defined area it has been expanded to include those who participated in CHROME (Case History Research on ME).
• The Register encompasses long-term follow-up of participants shedding light on prognosis and outcomes of care about which little is known.
• Linkage to the UK ME/CFS Biobank database provides longitudinal clinical histories to augment detailed data already collected from participants.
• The Register will enable selection of sub-groups of ME/CFS participants and enable defined research options.
• During the project IT applications will align with those at Buckinghamshire New University enabling all diagnoses of participants to be added to the database including those biobank participants not currently in the Register.
• This will be followed by a two year follow-up of all participants.
• A research programme will be commenced including
o Five year follow-up of CHROME participants
o One year diary sample study of the relationship between severity of ME symptoms and episodes of infection
o Collaboration with other researchers who may wish access the Register for their own researching including genomics and intervention studies.
For more information visit http://www.actionforme.org.uk/get-informed/research/our-research-related-activitymecfs-disease-register
Dr Pheby’s speech can be heard at http://youtu.be/a.fPLSKnTCU

Biobank: Dr Luis Nacaul – Faculty of Infections & Tropical Diseases, London School of Hygiene & Tropical Medicine:
• UK’s first ME Biobank for ME funded by Action ME, the ME Association, ME Research UK and a private donor.
• Stores blood samples from clinically well characterised cases of ME/CFS and health controls enabling researchers long term access to cohort of patients with biological, clinical and laboratory data attached.
• Dr Luis Nacaul established CURE-ME – Creating clinical and biomedical Understanding through Research Evidence for the ethical study of ME/CFS.
Refer http://www.Ishtm.ac.uk/itd/crd/research/cure-me

Understanding Muscle Dysfunction in ME/CFS: Professor Julia Newton – Institute of Aging and Health, Newcastle University, Newcastle upon Tyne, UK:
• Lead researchers were Professor Newton and Dr Phil Manning, Institute of Cellular Medicine, Newcastle University utilising funding by Action ME UK.
• Study explores why muscle cells in those with ME/CFS have problems with muscle energies and explain the switch in energy generation with the aim of understanding fatigue and how this can be helped.
• Development of laboratory system to provide experimental system allowing testing of drugs potentially able to treat fatigue and alter metabolism in ME/CFS.
Refer http://youtu.be/AevOA161Hdg

The Role of Sleep in ME/CFS: Professor Jackson Ellis, Professor & Zoe Gotts PhD Student, of Northumbria Centre for Sleep Research:
• Sleep is a significant issue in 87%-95% of those with ME/CFS (data collected from 32 studies throughout Europe using thousands of patients). The main problem being no consistent pattern of sleep abnormality.
• Three factors being considered
o Total Sleep Time (TST)
o Sleep Latency – how long does it take to get to sleep
o Sleep Arousal – how many times awake during the night.
• Findings have found four groups with observable traits or characteristics:
o Group 1 – Sleep Onset Insomnia
o Group 2 – Normal sleep but unrefreshing due to pain or sensor gating (neurological process of filtering out unnecessary brain stimuli from possible environmental stimuli)
o Group 3 –Hypersomnia
o Group 4 – Sleep Maintenance Insomnia.
• Preliminary findings show 92% of those with ME has abnormal sleep patterns with no discernible consistent pattern of abnormality.
• Cortisol appears to (a) stable over successive days in ME population and (b) slightly elevated compared to controls.
Refer http://youtu/be/eCtp-6W5dmM

Cognitive Dysfunction in ME/CFS: Professor Annalea Venneri, University of Sheffield:
• Studying how cognitive symptoms and brain processes change when those with ME experience difficult levels of fatigue.
• Aims to uncover links with brain physiology and function that are associated with this condition which may help in finding and directing new forms of beneficial treatment for those with ME.
Refer http://youtu.be/1ll3BkJOwXQ

Comment on the Value of Patient Groups for Medical Research: James Fogarty speaks to Professor Bernie Hannigan about her report into the current research landscape in Ireland:
• In other countries the patient group is involved in all stages of research, helping to prioritise areas of research of the most value.
• Patient group contributes to design of research study, has involvement in carrying out research and disseminating findings.
• Participation does not involve a lot of funding but requires co-ordination and culture shift for researchers and funders to know it is right to involve patient group.
• Studies with patient group involvement frequently have better more usable outcomes than those with no patient group involvement.
Refer http://bit.ly.19Wamaohttp://www.medicalindependent.ie/40130/funding the future

Predictors of Post-Infectious Chronic Fatigue Syndrome in Adolescents – Journal of Clinical Nursing Reprint – 20 December 2013:
• Aims & Objectives – to explore the experience of an adolescent with CFS.
• Background – despite research CFS is poorly understood. Adolescents are often unable to attend school and lose social connections with friends. The challenges they face affects their quality of life.
• Method – 6 boys and 12 girls aged 12-18 were interviewed on their experiences with CFS.
• Results – the sub-themes reflect their experience of social isolation, their own and others understanding of the illness and hope for the future.
• Feedback included:
o ‘on the outside of life – locked in and shut out’
o ‘the body, the illness and me’
o ‘if the illness is not visible to others, does it exist?’
o ‘handling life while hoping for a better future’
o ‘sometimes it feels as if the world goes on without me’.
• Conclusions – not being able to be with friends or attend school made the adolescents feel different, forgotten, alienated in their own bodies, invisible to themselves and their surroundings. Some spent less time with friends and more with parents which was felt a threat to their independence and development. Over all they managed to envisage a better future despite all their difficulties.
• Relevance for Clinical Practice – to provide effective support for adolescents with CFS and provide insight to health professionals.
• Recommendation – health centres function as resource centres for patients and healthcare professionals.

Sandra Forsyth
Waikanae, 7 September 2014