Patient-Reported Outcome Measures (PROMS) are questionnaires that researchers and clinicians ask patients to complete to assess the value of a treatment. The limitation of these measures were highlighted in 2011 by critics of the PACE trial.

Researchers from England have reviewed CFS/ME-specific,  domain-specific and generic measures used in  the assessment of adults with CFS/ME.

With the exception of the generic SF-36, they found that all measures had mostly limited evidence of measurement and/or practical properties. Patient involvement in their design was poorly reported and often cursory.

They concluded that the quality and acceptability of reviewed PROMs is limited, and recommendations for patient-reported assessment are difficult. Significant methodological and quality issues in PROM development/evaluation were identified by the appraisal framework, which must be addressed in future research. Clear discrepancies exist between what is measured in research and how patients define their experience of CFS/ME. Future PROM development/evaluation must seek to involve patients more collaboratively to measure outcomes of importance using relevant and credible methods of assessment.

Quality and acceptability of patient-reported outcome measures used in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a systematic review.

UK Government consultation on Disability Living Allowance (DLA) and Personal Independence Payment (PIP)

This consultation is intended to seek views on the second draft of the assessment criteria for Personal Independence Payment and in particular on the changes that have been made since the first draft, the proposed descriptor weightings and entitlement thresholds and the draft regulations.

During the initial consultation last summer, many disability organisations said that without the inclusion of descriptor weightings and entitlement thresholds for the rates and components of PIP, it was difficult to understand the impact of the criteria and therefore to comment fully on the UK Government’s proposals. This further consultation should provide the necessary material to make that judgement.

Personal Independence Payment: assessment thresholds and consultation

You can respond by email and post by 30 April 2012.

A Norwegian study shows that at least 5% of the patients with confirmed Giardia enteritis following an outbreak in 2004 in Bergen failed to recover. The unexplained fatigue and accompanying symptoms corresponded in the main with other post-infectious fatigue syndromes.

In comparison, the prevalence of CFS in a normal population ranges between 0.23% and 0.56% in different populations. Thus, the frequency of CFS among patients with confirmed Giardia infection was at least 8 times higher than in the general population. The findings suggest that there may be a relationship between Giardia infection and CFS.

Although the cause of CFS is unknown it is generally thought that post-infectious fatigue develops shortly after acute infection however, more than half of the patients studied had a gradual onset of fatigue. Patients who developed fatigue over months, tended to have more initial abdominal symptoms than patients who developed fatigue within weeks of Giardia enteritis. A possible explanation is that many initial symptoms either masked the experience of early fatigue or the recall of early fatigue among some patients. This may be of special importance in cases of litigation where the timing of fatigue onset after acute infection may determine the question of causation.

Chronic fatigue syndrome after Giardia enteritis: clinical characteristics, disability and long-term sickness absence.

A review article from Australia examines the roles of CD8+ T-Cell Deficiency, Epstein-Barr Virus Infection, Vitamin D Deficiency, and proposes a theory of the steps to Autoimmunity:

CD8+ T-cell deficiency is a general feature of chronic autoimmune diseases and also occurs in healthy blood relatives of patients with these diseases. It is proposed that this deficiency is genetically determined and underlies the development of chronic autoimmune diseases by impairing CD8+ T-cell control of EBV infection, with the result that EBV-infected autoreactive B cells accumulate in the target organ where they produce pathogenic autoantibodies and provide costimulatory survival signals to autoreactive T cells.

Autoimmunity is postulated to evolve in a series of steps culminating in the development of ectopic lymphoid follicles containing EBV-infected autoreactive B cells in the target organ. It is also proposed that deprivation of sunlight and vitamin D facilitates the development of autoimmune diseases by aggravating the CD8+ T cell deficiency and thereby further impairing control of EBV.

The hypothesis makes predictions which can be tested, including the prevention and successful treatment of chronic autoimmune diseases by controlling EBV infection.

NB: Significant reductions in CD8 cells have been found in subsets of ME and CFS patients.

CD8+ T-Cell Deficiency, Epstein-Barr Virus Infection, Vitamin D Deficiency, and Steps to Autoimmunity: A Unifying Hypothesis

Carers Wales will be hosting its Annual Carers Summit, which is open to all carers across Wales, on Monday 5th March at the Liberty Stadium, Swansea.

The agenda will include:

• theWelsh Government’ planned reforms for Social Services
• the new Mental Health Law and how it will change the way that people with mental health problems are treated and the implications of the new law for carers.
• Welfare Reform and its likely impact for carers and those that you look after.

Places will be allocated on a first come, first served basis. Booking form

American researchers looked for objective ways to evaluate fatigue and pain in patients with CFS, patients with MS and healthy controls. Blood samples were compared to patients’ assessment of their pain and fatigue following sustained moderate exercise.

They found that postexercise mRNA (messenger ribonucleic acid) increases in metabolite-detecting receptors were unique to patients with CFS, whereas both patients with MS and patients with CFS showed abnormal increases in adrenergic receptors. Among patients with MS, greater fatigue was correlated with blunted immune marker expression.

Differences in Metabolite-Detecting, Adrenergic, and Immune Gene Expression After Moderate Exercise in Patients With Chronic Fatigue Syndrome, Patients With Multiple Sclerosis, and Healthy Controls

On 1 Feb MPs overturned key amendments to the Welfare Reform Bill that had been won in January by Peers in the House of Lords. This is a blow to disability campaigners as it reinstates many of the Government’s original proposals, including one which plans to reduce contributory Employment and Support Allowance to 12 months for those with a disability, but who are judged capable of working at some point in the future.

Ministers say they will use a convention known as “financial privilege” to effectively end further parliamentary opposition and push the Bill through to become law with no further challenge.

It is important to recognise that thanks to sustained pressure by campaigners there have been some significant victories – changing proposals that would have had a serious negative effect on the lives of disabled people, including:

• Overturning plans to cut disability benefits from people living in care homes
• The Government is no longer going ahead with plans to increase the time people must wait before they qualify for PIP, the successor to Disability Living Allowance
• Although stopping short of agreeing a full review, the Government committed to important concessions on the implementation of PIP.

There is more to be done, on Personal Independence Payments (PIP) in particular. The DWP consultation on the detail of this benefit that will replace DLA is currently open and later in the year regulations will be laid in Parliament. This means there is still a need to campaign to ensure that the needs of all disabled people are properly understood and recognised in this new benefit.

A team of researchers from Newcastle trialled non-invasive optical multi-site photoplethysmography (PPG) technology to assess cardiovascular responses to standing as the frequent finding of autonomic dysfunction and symptoms on standing has the potential to provide a diagnostic biomarker in CFS.

A significant reduction in the overall pulse timing response to controlled standing was found for the CFS group. Pulse wave abnormalities represent a potential objective measure to help differentiate between CFS patients and healthy controls.

Abstract

In this third study by researchers from New York using neuroimaging they investigated a pathophysiological model which postulated that elevations of CSF lactate in patients with CFS might be caused by increased oxidative stress, cerebral hypoperfusion and/or secondary mitochondrial dysfunction.

In exploratory correlation analyses, they found that levels of ventricular lactate and cortical  glutathione (GSH) were inversely correlated, and significantly associated with several key indices of physical health and disability.

In two previous studies they had found significantly higher levels of ventricular cerebrospinal fluid (CSF) lactate in patients with CFS.

Collectively, the results of this third independent study support a pathophysiological model of CFS in which increased oxidative stress may play a key role in CFS etiopathophysiology

Abstract

In less than a month, the Welfare Reform Bill will make its way back to the House of Commons.

MPs will have the chance to either vote for or reject some important changes made by the Lords designed to help people with disabilities and long-term conditions access the support they need.

• Extending the proposed time-limit on contributory Employment and Support Allowance (ESA) to at least two years.
• Protecting access to ESA for young people with disabilities or illness.

The vote of your MP will help determine the fate of thousands of people who rely on disability benefits.

Can you email your MP and ask them to make benefits fair?

Click Here to contact your MP in Support of the Campaign

The Liberal Democrat party conference in September 2011 passed a policy motion which opposed any arbitrary time limit on contributory Employment and Support Allowance (cESA), which the Hardest Hit coalition welcomed.

If you live in a constituency with a Lib Dem MP, please consider contacting your MP in person this week (the vote in the House of Commons could be as early as 1 February). As Lib Dem policy is against any time limit, we believe that Lib Dem MPs should at least support this Lords amendment which extends the time limit and so mitigates the effect for some people.

Mark Williams, Ceredigion

Jenny Willott, Cardiff Central

Roger Williams, Brecon & Radnorshire

WAMES supports the Hardest Hit campaign