HMRC does not hold data on the number of people with ME who have been refused the disability element of working tax credit. The 'disadvantage test' used for assessing eligibility to the disability element consists of 21 functional disabilities connected with, for example, seeing, hearing, getting around, using hands, mental disabilities, exhaustion and pain and a claimant needs only one of them to pass the test. The disadvantage test does not exclude any particular diagnostic group of disabled people. To include reference to specific conditions would be impractical as people living with the same illness may not suffer the same functional disabilities.

There are no plans to change the eligibility conditions for the disability element of working tax credits.

Entitlement to disability living allowance (DLA) is not based on having a specific health condition, but depends on what help the person needs with personal care as a result of their disability, and/or the extent of their mobility difficulties. No one, therefore, has been refused DLA on the grounds that myalgic encephalomyelitis is an ineligible criterion. Anyone who meets the eligibility criteria will be awarded DLA.

Disability premium is payable in housing benefit and council tax if the claimant is receiving a qualifying benefit or is registered blind or satisfies the incapacity for work condition. A person cannot qualify for a disability premium for housing benefit or council tax benefit on any grounds if the claimant has, or is treated as having, limited capability for work or has reached the qualifying age for pension credit and neither the claimant nor partner is getting income support, income-based JSA or income-related ESA.

Information on how many people with chronic fatigue syndrome as their primary health condition received employment and support allowance (ESA) is not readily available and to provide this would incur disproportionate cost.

Information on the number of recipients of disability living allowance (DLA) with main disabling condition of chronic fatigue syndrome by area from May 2012 to February 2012 is:

The department has not issued guidance. We expect decisions on clinical interventions to be made by front-line clinicians. In making such decisions, clinicians will take into account evidence for the safety and clinical and cost-effectiveness of the treatment concerned.

Through National Health Service evidence and guidance issued by professional associations, clinicians have access to evidence based guidance on chronic fatigue syndrome/myalgic encephalomyelitis.

The Research Councils UK (RCUK) Common Principles on Data Policy provide an overarching framework for individual research council policies on data sharing and access. The RCUK principles recognise that publicly funded research data are a public good, produced in the public interest, and should be made openly available with as few restrictions as possible in a timely and responsible manner. The principles also recognise that there are legal, ethical and commercial constraints relating to the release of research data, either through data sharing for new research or publication.

The Medical Research Council (MRC) policies on data sharing and data management are entirely consistent with the RCUK principles. The MRC strongly encourages the publication and dissemination of the findings of all MRC-funded research. To maximise the benefit and impact of MRC-funded research, responsible sharing of pre-publication data to support new research is also encouraged. To support the sharing of research data from population and patient studies, including clinical trials, the MRC has developed guidance which specifically addresses this type of research. The guidance aims to illustrate some of the issues investigators should take into account when assessing requests to access research data for new research to ensure research data are shared responsibly and ethically so as to maximise both their value and the benefits for research and health. The guidance also recognises there is a balance to be struck between the interests of researchers undertaking the research and who manage the data and those who wish to access the data.

In her Question, the noble Countess refers to a study which was funded by the Medical Research Council through a grant to Queen Mary, University of London and the university's response to a request for research data made under the Freedom of Information Act. The response to the Freedom of Information request is a matter for the university.

Guidance for decision makers was last issued in March 2011. Guidance for Atos health care professionals was last issued in July 2012.

All reports from Atos Healthcare now contain a personalised summary in plain English. We have also tested sharing these reports with claimants but results showed that this was not helpful to individuals. We have therefore agreed a more helpful variation of this with Professor Harrington and now issue the department's decision-maker's reasoning report to explain fit for work decisions.

DWP has asked Atos Healthcare to accommodate requests for audio recording where a claimant makes a request in advance of their assessment. We are currently developing criteria in order to evaluate the success of this approach and will await the results of this evaluation before making a decision on the future of this service.

Two papers relating to the findings of the PACE trial: A Randomised Controlled Trial of CBT, graded exercise, adaptive pacing and specialist medical care for the chronic fatigue syndrome, have been published. The findings have been reported in the Lancet in March 2011 (published online in February 2011) and in PLoS ONE in August 2012.

Findings relating to employment status over 52 weeks across the four arms of the trial are published in the paper in PLoS ONE, Adaptive Pacing, Cognitive Behaviour Therapy, Graded Exercise, and Specialist Medical Care for Chronic Fatigue Syndrome: A Cost-Effectiveness Analysis: McCrone P. Sharpe M. Chalder T. Knapp M, Johnson AL, et al. (2012) PLoS ONE 7(8): e40808. doi: 10.1 371/journal.pone.0040808. The timing of the publication of findings resulting from research funded by the Medical Research Council (MRC) is determined by the research team.

The MRC, which funded the trial through a grant to Queen Mary, University of London, assesses whether the research proposed in a grant application represents good value for money in terms of the resources being requested as part of the peer review process.

While DWP acknowledges the value of the NICE guidelines on CFS/ME, this is a clinical guide. All healthcare professionals who undertake assessments on behalf of DWP are required to read an evidence-based protocol on CFS/ME as part of their induction training. In addition, all healthcare professionals are required to engage in a programme of continuing medical education, which includes modules on chronic fatigue syndrome. DWP decision-makers also have access to evidence-based guidance on CFS/ME.

The Medical Research Council (MRC) is funded by the Department for Business, Innovation and Skills and is one of the main agencies through which the Government supports medical research.

Researchers at the MRC's National Institute for Medical Research are investigating infection and replication of retroviruses, such as xenotropic murine leukaemia virus-related virus (XMRV). Two papers resulting from work on XMRV in patients with Myalgic Encephalopathy/Chronic Fatigue Syndrome and also in prostate cancer patients have been published. Neither study identified a link between XMRV and disease. Details of the sensitive serological and PCR assays used in the studies are described in the papers. There are no clinically validated assays to study gammaretroviruses in humans.

People with myalgic encephalopathy, chronic fatigue syndrome and post-viral fatigue syndrome can donate tissues once their symptoms have resolved. Recipients of tissue donations from such patients have not been deemed to be at risk by the Joint Professional Advisory Committee (JPAC). However, the causes of these conditions are unknown and so a precautionary approach is taken.

Guidelines on the selection of donors are set by JPAC, which includes representation of all four UK Blood Transfusion services and the Medicines and Healthcare, products Regulatory Agency (MHRA). Guidelines are regularly reviewed and should more information on the causes of these conditions emerge it would be taken into account in reviewing eligibility for donation prior to symptoms of the conditions having resolved.

The PACE trial: A Randomised Controlled Trial of CBT, graded exercise, adaptive pacing and usual medical care for the chronic fatigue syndrome, was funded by a Medical Research Council (MRC) grant to Queen Mary, University of London.

While the MRC strongly encourages the publication and dissemination of the findings of all MRC-funded research it does not require the publication of underlying research data. As an MRC grant, the study was subject to the RCUK (Research Council UK) and MRC terms and conditions; no additional requirements around publication were specified by the other funders of the study.

The findings of the PACE study have been reported in The Lancet, in March 2011 (published online in February 2011) and in PLOS ONE in August 2012. These papers included the results of analyses of positive outcome rates.

The MRC is aware that Queen Mary University London received a request under the Freedom of Information Act relating to data on recovery rates and positive outcome rates which relates to an analysis initially planned by the investigators in the original protocol for the study and which was published in 2007. It is understood that the request was declined by the university as this originally planned analysis was superseded and therefore not undertaken during the study.

Criminal, violent or threatening behaviour towards anyone, including medical researchers, is not acceptable. Where there is a threat to individuals involved in medical research, it is a matter for the police to investigate and take the relevant action.

The current version of the British Army Health Questionnaire, Recruiting Group Form 8 (RG 8), which has been in use by applicants to the regular Army since 2008, does not assign categories to any medical condition but instead lists conditions which are then verified by the applicant’s GP.

However, until recently, applicants to the Territorial Army (TA) completed an older, self-certified version of the RG 8 (dated 2004), which categorised chronic fatigue syndrome/myalgic encephalomyelitis as a psychiatric or mental disorder. This was consistent with advice in place from the World Health Organisation International Classification of Diseases, which allowed clinicians to categorise patients who came under the broad category of chronic fatigue syndrome, under either psychiatry or neurology.

This older version of RG 8 has now been withdrawn and since April 2012 all TA applicants, like their regular counterparts, now complete the current RG 8 version dated 2008.

Information is not available in the format requested.

'Chronic medical conditions' is a very broad term that might apply to many different medical conditions. Information about patients with chronic medical conditions cannot be provided without further specification of the chronic conditions required.

Information about the number of hospital episodes with a primary diagnosis of multiple sclerosis or myalgic

encephalomyelitis for residents of the Mid Essex primary care trust (PCT) area in the last five years is shown in the following table. This is not a count of the number of people with each condition in Mid Essex PCT as the same person might have been admitted on more than one occasion.

We understand that mitochondrial function testing as a possible diagnostic test for chronic fatigue syndrome/myalgic encephalomyelitis is not yet accepted as part of normal clinical practice. It is for local commissioners to determine what services they should commission to meet the needs of their populations, within available resources and local priorities.

The National Institute for Health and Clinical (NICE) has not issued any guidance on the use of balloon angioplasty for chronic cerebrospinal venous insufficiency for patients with myalgic encephalomyelitis and there are no plans for it to develop guidance on this topic.

NICE has issued interventional procedures guidance on percutaneous venoplasty for chronic cerebrospinal venous insufficiency for multiple sclerosis which includes the use of balloon angioplasty, which is available at:

http://publications.nice.org.uk/percutaneous-venoplasty-for-chronic-cerebrbspinal-venous-insufficiency-for-multiple-sclerosis-ipg420

NICE considered that there was insufficient evidence to support the use of this procedure in the national health service and recommended that it should only be used in the context of research.

There is a requirement for publicly funded clinical trials to be registered and there are a number of different registers.

The PACE study was funded by a Medical Research Council (MRC) grant to Queen Mary, University of London. The Department of Health for England, the Chief Scientist Office in Scotland and the Department for Work and Pensions co-funded the trial; their contributions were paid via the MRC grant.

The MRC has been a strong supporter of trials registration for many years and provided financial support to help set up the ISRCTN scheme. The MRC was also involved in helping to refine the scheme and in promoting its widespread adoption in the UK.

The MRC requires that all MRC-funded clinical trials comply with the CONSORT Statement, which is an evidence-based, minimum set of recommendations for reporting randomised controlled trials. CONSORT, which stands for Consolidated Standards of Reporting Trials, offers a standard way for authors to prepare reports of trial findings, facilitating their complete and transparent reporting, and aiding their critical appraisal and interpretation. CONSORT includes guidance on ISRCTN registration.

The results of the trial were reported in The Lancet, which also follows the CONSORT guidelines. The PACE trial report would have had to meet this standard as a prerequisite for publication.

The MRC is not responsible for assuring the quality of data in the ISRCTN. The Government cannot comment on the completeness of the data.

The PACE study was funded by a Medical Research Council (MRC) grant to Queen Mary, University of London, the principal investigator was Professor P White at QMUL, co-investigators were Professor T Chalder, King's College London, and Professor M Sharpe, University of Edinburgh. The Department of Health for England, the Chief Scientist Office in Scotland and the Department for Work and Pensions co-funded the trial; their contributions were paid via the MRC grant.

Queen Mary, University of London, has been identified as the formal sponsor of the PACE trial throughout the duration of the study. The MRC would normally

only be identified as the formal sponsor of a clinical trial where the principal investigator was an MRC employee or where an MRC unit designed and managed the trial.

The PACE study was funded by a Medical Research Council (MRC) grant to Queen Mary, University of London. The Department of Health for England, the Chief Scientist Office in Scotland and the Department for Work and Pensions co-funded the trial; their contributions were paid via the MRC grant.

As for all MRC-funded studies, it is the responsibility of the investigators and the relevant journals, guided by peer reviewers, to determine how findings are published and when.

The investigators’ first paper on the outcomes of the PACE study was published in The Lancet in March 2011. This includes descriptions of normal ranges and how they calculated. The MRC understands that further publications are planned, one of which will address the issue of recovery.