3 major research collaborations have been anounced over the last few months:

On the 23rd of April 2013 the UK CFS/ME Research Collaborative (UK CMRC) was launched. Key ME charities and biomedical researchers have joined together with researchers who have previoulsy conducted research with a more psychosocial approach to the illness, believing that this is a great opportunity to change the direction of ME research in the UK and attract more scientists.

Invest in ME (IiME) have chosen to join with the Alison Hunter Memorial Foundation (AHMF) of Australia believing that an international collaboration concentrating on biomedical research into strictly defined ME is the way forward.  IiME/AHMF BRMEC (Biomedical Research into ME Collaborative) will be holding a meeting on 30th May in London before the International IiME research conference.

In the US the OMI-MERIT (ME Roundtable on Immunology and Treatment) is a strategic initiative of the Open Medicine Institute (OMI) and its collaborators to bring together leading clinicians and researchers to tackle the under researched disease of ME/CFS. The MERIT group is focused on developing and applying a multi-factorial approach to the discovery of new diagnostic and treatment solutions for ME/CFS, particularly increasing the use of new technologies. Some UK charities are also supporting this.

WAMES wishes to see more biomedical research into ME as a matter of priority in the hope it will lead to a greater understanding of ME and the subgroups of CFS and uncover accurate diagnostic tests and appropriate treatment options.

We understand the desire of many people with ME and their carers to shun all research and researchers that take time and money away from biomedical research. ME has been sidelined and mocked by scientists and clinicians for too long. But we acknowledge the value of discussion and collaboration as a way for all to arrive at a common understanding.

Whether the UK CMRC will produce research that is well designed and implemented and that will benefit both people with ME and CFS, only time will tell.   We will be watching all of these research collaborations with interest and wish them well on their journeys.

University of Newcastle Press release

University of Bristol Press release

Phoenix Rising: Launch of inclusive UK CFS/ME Research Collaborative

IiME / AHMF meeting

IiME: A tale of 2 collaboratives

Abstract

Objectives: Social isolation and stigma are frequently reported by patients with chronic fatigue syndrome/myalgic encephalomyelitis and relationships in the home environment with those close to the patients (their ‘significant others’) may thus be particularly important. Rather little attention has yet been paid to the beliefs and experiences of ‘significant others’ themselves in this context. This study sought to explore in-depth the beliefs and experiences of both patients and ‘significant others’ in relation to chronic fatigue syndrome/myalgic encephalomyelitis.

Methods: In-depth interviews using a semi-structured interview schedule designed around the core constructs of the Common-Sense Model of self-regulation were conducted with two patients with chronic fatigue syndrome/myalgic encephalomyelitis and their spouses. Interpretative Phenomenological Analysis was used to analyse interview data.

Results: Experiences of social interactions in relation to chronic fatigue syndrome/myalgic encephalomyelitis with others outside of the relationship dyad emerged as a key issue for all participants when reflecting on their experiences of living with the condition. These concerns are presented under two themes: interactions with healthcare professionals and interactions with the social world.

Conclusions: It is evident that significant others play an important role in the lived experience of chronic fatigue syndrome/myalgic encephalomyelitis. For both patients and significant others, the wider social world and interactions with outside others may be important influences on dyadic coping in chronic fatigue syndrome/myalgic encephalomyelitis. Both future research and treatment interventions could usefully include a ‘significant other’ perspective.

Couples’ experiences of interacting with outside others in chronic fatigue syndrome: a qualitative study.  Joanna Brooks, Nigel King, Alison Wearden  Chronic Illness April 12, 2013 [Epub ahead of print]

The High Court has granted permission for a full hearing of the judicial review challenge to the government’s introduction of more stringent qualifying criteria for mobility benefit for the new Personal Independence Payment (PIP) scheme.

Two law firms, Public Law Solicitors and Leigh Day, had challenged the legality of the introduction of the new benefit, on the grounds that the government failed to consult properly, before changing the distance a claimant can travel from 50 metres to 20 metres, in order to qualify for the mobility component. The change was made after consultations were complete.

Steven Sumpter, who has ME, can only walk a few metres with a stick and is otherwise dependent on a wheelchair. He was assessed as eligible for the high rate of the mobility component of Disability Living Allowance (DLA) last year and has used this to lease a Motability car. Along with thousands of others, he fears that he may lose this benefit under the new Regulations (1). Under the DLA scheme, a person is entitled to the higher rate if they are ‘unable or virtually unable to walk’. Usually claimants are considered to be virtually unable to walk if they cannot walk more than 50m. Under the new Personal Independence Payment (PIP) scheme, the relevant distance is reduced to 20m.

Karen Ashton from Public Law Solicitors who represents Mr Sumpter said:

“I am very pleased that the court has found that this case deserves a full hearing. The higher rate of mobility benefit can make an extraordinary difference to a disabled person’s life. But the Government failed to mention the reduction to 20m in their consultations and so those who might be affected did not have the chance to put their case and explain how devastating the consequences will be.”

Jane Young, an independent consultant currently working with the We are Spartacus campaigning network, said:

“Whilst it is true that under the PIP regulations and guidance, in order to be considered able to walk not more than 20 metres a claimant should be able to do so “safely, to an acceptable standard, repeatedly and within a reasonable time period”, the fact remains that 20 metres is an extremely short distance. Our concern is that by denying people with significant walking difficulties support for independent mobility, the regulations will seriously compromise their well-being. Disabled people who can only walk short distances face being stuck in their homes, isolated and unable to travel independently to health appointments, to work, to the shops or to social activities. This is especially the case in rural areas, where public transport is infrequent, inadequate and inaccessible and long travel distances are the norm.”

Note: By agreement with the government’s lawyers and the court, only Steve Sumpter’s case is going ahead at this stage and it is expected that the full hearing will take place in July.

More information on PIP and the campaign

me voice: a magazine for people with ME in Wales, by people with ME in Wales.

Features in the April issue include:

• The poetry cure? Looking at the therapeutic nature of reading and writing poetry, and the poetry of Cardiff poet (and pwme) Eleanor Dent
• Is poetry cool? Invitation from the young people’s poet laureate of Wales to contribute to a Wales manifesto, and an invitation from WAMES to contribute to a Wales ME manifesto
• A young carer’s story
• Update of the WAMES health services campaign
• ME Awareness week in May– ways you can get involved

Available:

• online
• free by email in colour from tony@wames.org.uk
• or £10 for 5 B&W issues from WAMES subs, The Coach House, Frongôg, Aberystwyth, SY23 3HN