Assessment of entitlement to benefit does not depend on the condition itself, the underlying cause or how the condition is classified, but on the disabling effects of the condition(s) present.

The condition insight reports for Personal Independence Payment Health Professionals state that ME/CFS is classified as a neurological disorder; the guidance for CHDA Health Professionals who conduct Work Capability Assessments make no reference to the classification of ME/CFS.

The issue of classification for coding and statistical purposes has recently been brought to our attention. In light of this we are currently exploring moving ME/CFS from the musculoskeletal to neurological section for coding purposes.

To assist general practitioners (GPs) identify patients eligible for a vaccine in each priority cohort, NHS Digital has aligned specifications for the identification of patients via their medical records with GP system suppliers. Asthma sufferers will be identified through this system and invited to make an appointment when the vaccination programme has reached their respective priority cohort.

To date, chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) has not been identified as either a condition that makes an individual clinically extremely vulnerable or as a condition that would place an individual at increased clinical risk from COVID-19. GPs will therefore not specifically be identifying CFS/ME patients for COVID-19 vaccines via their medical records. It is more likely that patients with CFS/ME will be offered COVID-19 vaccines because they are eligible through other means such as their age, or they have other underlying health issues that would put them at increased clinical risk.

To date, chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) has not been identified as a condition that makes an individual clinically extremely vulnerable to COVID-19 or would place an individual at increased clinical risk. It is likely that some people with CFS/ME are being offered vaccines because they are eligible through other means such as their age or they have other underlying health issues that would it put them at increased clinical risk.

The Joint Committee on Vaccination and Immunisation (JCVI) are the independent body made up of scientific and clinical experts who advise the Government on which vaccines the United Kingdom should use and provide advice on prioritisation at a population level.

The JCVI’s advice is that to date, chronic fatigue syndrome or myalgic encephalomyelitis has not been identified as a condition that would place an individual at increased clinical risk to COVID-19 and therefore eligible for vaccination in priority group six. The JCVI’s advice is available at the following link:

www.gov.uk/government/publications/priority-groups-for-coronavirus-covid-19-vaccination-advice-from-the-jcvi-30-december-2020/joint-committee-on-vaccination-and-immunisation-advice-on-priority-groups-for-covid-19-vaccination-30-december-2020

For phase two of the COVID 19 vaccination programme, the Joint Committee on Vaccination and Immunisation published its interim advice on 26 February, setting out that the most effective way to minimise hospitalisations and deaths is to continue to prioritise people by age.

The Joint Committee on Vaccination and Immunisation has not identified any robust data to indicate that, as a group, persons with myalgic encephalomyelitis/chronic fatigue syndrome are at higher risk of dying from COVID-19, therefore this group is not included as part of the prioritisation for phase one of the programme.

The Joint Committee on Vaccination and Immunisation (JCVI) has not identified any robust data to indicate that, as a group, persons with myalgic encephalomyelitis/chronic fatigue symdrome (ME/CFS) are at higher risk of dying from COVID-19, therefore those under 50 years old are not prioritised for phase one of the programme.

Prioritisation for Phase two has not yet been decided, but interim advice has been published by the JVCI recommending an age-based approach, which the Government has accepted in principle subject to final advice. The information on estimates of people with ME/CFS who have received a covid-19 vaccination is not held centrally in the format requested.

The Joint Committee on Vaccination and Immunisation has not identified any robust data to indicate that, as a group, persons with myalgic encephalomyelitis/chronic fatigue syndrome are at higher risk of dying from COVID-19. Therefore this group is not included as part of the prioritisation for phase one of the programme.

The Joint Committee on Vaccination and Immunisation has not identified any robust data to indicate that, as a group, persons with myalgic encephalomyelitis/chronic fatigue syndrome are at higher risk from COVID-19, therefore those under 50 years old with this condition are not prioritised for phase one of the programme.

The Joint Committee on Vaccination and Immunisation (JCVI) has not identified any robust data to indicate that, as a group, persons with myalgic encephalomyelitis/chronic fatigue syndrome are at higher risk of mortality from COVID-19 and therefore are not included as a group for prioritisation for vaccination in the vaccine programme.

Prioritisation for phase two has not yet been decided, but interim advice has been published by the JVCI recommending an age-based approach which the Government has accepted in principle. Phase two of the COVID-19 vaccine programme will cover all adults under 50 not already included in Phase one.

The Department funds research through the National Institute for Health Research (NIHR). In 2020, the NIHR and the Medical Research Council, through UK Research and Innovation, came together to fund the world’s largest genome-wide association study of myalgic encephalomyelitis (ME), sometimes referred to as Chronic Fatigue Syndrome (CFS). This £3.2 million study, ‘DecodeME’, will analyse samples from 20,000 people with ME/CFS to search for genetic differences that may indicate underlying causes or an increased risk of developing the condition. DecodeME is a partnership between biomedical scientists at the University of Edinburgh and ME/CFS charities and people with lived experience of ME/CFS. It is hoped that the outcomes of this study will aid the development of diagnostic tests and targeted treatments.

COVID-19 is a new disease and therefore it is not yet clear what the medical, psychological and rehabilitation needs will be for those experiencing long-term effects of the virus. In October 2020, NHS England announced a £10 million investment in their five point plan to support people with ‘long’ COVID-19. As part of this investment, 69 post-COVID-19 assessment service centres are now operational across England to assess people with long-term effects of COVID-19 and to direct them to effective treatment pathways. A further 12 long COVID-19 assessment service centres are expected to launch in early 2021

Care for people with chronic fatigue syndrome and myalgic encephalomyelitis is a local matter commissioned by local primary, community and secondary care services via clinical commissioning groups (CCGs). CCGs are best positioned to understand and provide for the needs of local populations.

The National Institute for Health and Care Excellence (NICE) Clinical Knowledge Summary Tiredness/fatigue in adults was published in October 2009 and there has been no change in the way it is titled over the subsequent period. NICE advises that the inclusion of Chronic Fatigue Syndrome (CFS) within the tiredness/fatigue topic is to ensure that clinicians will consider CFS as a potential diagnosis as early as possible in the course of care of a person presenting with symptoms of tiredness and fatigue.

In 2007 NICE published the guideline, Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management. This is currently being updated and a draft guideline is out for consultation with the final guidance expected in April 2021. The CFS diagnosis and management sections in the Clinical Knowledge Summary on Tiredness/Fatigue are kept in line with NICE guidance on CFS and will be updated following publication of the new guidance if necessary.

No specific assessment has been made of increasing awareness of chronic fatigue syndrome.

On 15 November 2020, the National Health Service launched a new taskforce with patients, charities, researchers and clinicians to help manage the NHS approach to ‘long COVID’. The taskforce will produce information and support materials for patients and healthcare professionals to develop a wider understanding of the condition. The full announcement is available via the following link:

https://www.england.nhs.uk/2020/11/nhs-launches-40-long-covid-clinics-to-tackle-persistent-symptoms/

The Department, NHS England and NHS Improvement accept the World Health Organization’s classification of chronic fatigue syndrome/myalgic encephalomyelitis as a neurological condition of unknown origin, and therefore health and social care professionals are expected to manage it as such.

This data is not held in the format requested.

I am grateful for the hon. Lady’s question. She is raising an important issue. I know that many people suffer from the syndrome that she describes, and I will ensure that she gets a proper meeting with the relevant Minister to discuss her objectives.

My constituent was diagnosed with ME in 2019, and earlier this year her employer agreed that she was no longer able to work and to do the job she loved. She applied for the personal independence payment, but the Department for Work and Pensions has ruled that she is fit to work. It has not engaged with her previous employer, who has a wealth of evidence to the contrary, and has reached its own decision. Her life has been devastated by this diagnosis. She told me:

“The PIP process is predicated on being able to stand up for yourself, and as a disabled person I cannot do this.”

Will the Prime Minister meet me to ensure that our benefits system works for sufferers of chronic fatigue and does not limit decisions to single points of evidence?

Entitlement to health and disability-related benefits is determined by the functional effects of a person’s disability or health condition. Classification of the disability or condition is irrelevant for the purposes of benefit assessment.

With regard to employee rights, though they are not automatically treated as a disability under the Equality Act 2010, people with myalgic encephalomyelitis (ME) and chronic fatigue syndrome can be treated as disabled depending upon the effect it has on their daily life. ME is specifically listed amongst “impairments with fluctuating or recurring effects” in the 2010 Act Guidance document

https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/85010/disability-definition.pdf.

Any employment rights would then flow from being classified as disabled under the Equality Act 2010.

The following table shows how much Government funding was allocated to biomedical research into myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS) for financial years 2017-18, 2018-19 and 2019-20.

In addition to the funding set out above, the National Institute for Health Research, funded through the Department, and the Medical Research Council have recently announced a £3.2 million award to fund research into potential genetic connections to ME/CFS. The project will analyse samples from 20,000 people with ME/CFS to search for genetic differences that may indicate underlying causes or increase the risk of developing the condition.