The ME Association ‘Count ME In’ campaign launches today!  

We have today launched a major campaign whose purpose is to reach people living in the UK, Channel Islands, or Isle of Man, who think they might be affected by symptoms – or who have a diagnosis – of ME/CFS or Long Covid. This is the largest campaign of its type and we hope to reach more people than ever before! 

1. We are asking people to complete a short survey about their health experiences and in particular to focus on the support they have received from the NHS and social care services.  

2. We want the campaign to raise much-needed awareness and help those in need find support, learn more about symptoms, obtain an accurate diagnosis, and find specialists who can help improve their life quality. 

3. We are keen to discover if there has been any improvement in healthcare support since the publication of the NICE Clinical Guideline recommendations (for both ME/CFS and Long Covid) in 2021 (see below).  

We have engaged a reputable marketing agency and market research team to position external advertising and to ensure the survey gathers the data we need (and is GDPR compliant). A test survey that we ran earlier in the year reported a very good response rate.  

Advertising will focus on selected target audiences across social media and audio promotions will appear in selected podcasts. The aim is to reach as broad a cross-section of the population as possible and hope that they will share the promotions with their own networks.

Additional promotions will appear across the charity’s media platforms i.e., social media, and the website, ME Essential and ME Medical magazines, and the newsletter, so that we are sure to reach existing followers, members, and supporters. 

The market research team will provide updates as we progress through the 4-month campaign which we will share, and a detailed report on the survey outcomes will be produced in December. The report’s results will be available in early 2024 and will inform one of the charity’s main goals: to improve health and social care services for anyone affected by ME/CFS and Long Covid. 

Our Count Me In campaign has now finished and the survey has closed. Many thanks to those who have been Counted and we will publish results as soon as they have been collated

More Information 

Overview 

Most people will have experienced infections at some point in their lives and are likely to have recovered their full health with treatment or after an appropriate period of convalescence. However, some people are not able to recover and can develop a Post-Viral Fatigue Syndrome (PVFS).

They have to live with symptoms for longer and are unable to perform normal activities. They might be unable to walk, to leave their beds or homes, to go to work or to school, and are likely to be dependent on others for care and support.

If this situation continues after 12 weeks of symptoms developing, then a diagnosis of ME/CFS or Long Covid should be considered. GPs and specialists can suspect either condition after 6 weeks in adults (4 weeks in young people).

• We don’t know why certain people are seemingly more prone to PVFS, ME/CFS, or Long Covid or why these conditions occur at a particular time and not at others. It could be that the triggering infection was more acute or of a particular type, or that the answers to susceptibility might lie in a person’s DNA. It could be a combination of different factors.

PVFS and ME/CFS have been recognised for decades by the medical profession. The World Health Organisation considers PVFS and ME/CFS to be neurological diseases (disorders of the nervous system) in the International Classification of Diseases which is adopted by countries around the world, including by the NHS here in the UK.

While Long Covid is a relatively new medical condition it shares a lot of similarities with ME/CFS. Many people receive a Long Covid diagnosis when they don’t recover from a Covid-19 infection, and yet others in the same situation are receiving a diagnosis of ME/CFS.

• We don’t know how many people have a diagnosis of Long Covid or ME/CFS because the NHS is unable to provide the data. When a diagnosis does occur, everyone should receive an appropriate code on their medical record. We will continue to ask for this data from the NHS but in the meantime, we hope the Count ME In campaign will shed further light on the current situation.

The fact that Long Covid seems to affect a great many people – as a result of the Covid pandemic – prompted a relatively swift response from most health departments. This led to the creation of a vital network of hospital based multidisciplinary NHS Long Covid clinics in England that perform a similar referral service to the network of multidisciplinary NHS ME/CFS specialist services.

NHS secondary care services in Northern Ireland, Scotland, and Wales are in short supply which means that more people have to rely solely on primary care and GPs. The Isle of Man determined that a combined ME/CFS and Long Covid specialist service was appropriate, and this new service was launched in April 2023.

Health Crisis

• We estimate that more than 1.25 million people in the UK could be living with a diagnosis of ME/CFS or Long Covid. We don’t have exact figures and we don’t know how many are undiagnosed, but the combined total is likely to be much greater.
• The ONS estimates that 1.7million people in the UK were self-diagnosed with Long Covid at least 12 weeks after a Covid-19 infection.ⁱ 
• Around 5-10% of people who catch an infection can develop a Post-Viral Fatigue Syndrome, like ME/CFS or Long Covid, from which they are often unable to fully recover.
• The most likely trigger for ME/CFS is a viral infection like Glandular Fever (the Epstein Barr Virus). The trigger for Long Covid is an infection by the Covid-19 Virus.  
• Up to 50 per cent of people with Long Covid are now believed to meet the diagnostic criteria for ME/CFS.

ME/CFS and Long Covid:  

• have many symptoms in common but also some differences.
• are life-changing medical conditions that do not allow adults or children to function normally.
• can prevent or restrict the ability to work or go to school, can leave people unable to care for themselves, confined to their beds, with limited or no mobility, and a very poor quality of life.
• do not have any effective treatments at this time but can be managed with help from health and social care specialists and an approach known as Pacing (energy and activity management).
• can stabilise over time and functional limitations can improve, but symptoms and symptom severities can fluctuate and for some there is very little – if any – improvement at all.

The NICE Guidelines 

The National Institute for Health and Care Excellence (NICE) produce evidence-based recommendations that provide a framework of care to the NHS and social care services. There are many Guidelines on a whole range of diseases including ME/CFS and Long Covid.

They show healthcare providers how to, for example, recognise symptoms, make an accurate diagnosis, and help patients manage their condition to improve life quality. The Guidelines are also a good resource for patients and show them what to expect and how involved they should be with any decisions that are made.  

We recommend that patients and/or carers familiarise themselves with the relevant recommendations and discuss them with their healthcare providers at the next opportunity. 

1. In October 2021, NICE published a new Clinical Guideline: ME/CFS: diagnosis and management.
   This is a much-improved set of clinical recommendations that provide an evidence-based framework of care and support for use by the NHS and social care services in the UK. We fully endorse its recommendations and are working to ensure they are effectively implemented across the UK.
2. In November 2021, NICE updated its Guideline for Long Covid: COVID-19 rapid guideline: managing the long-term effects of COVID-19.
   It isn’t as comprehensive as the Guideline on ME/CFS, although recommendations are similar given the overlap in symptoms, diagnosis, and management. We will be calling for the Guideline on Long Covid to be reviewed by NICE in due course.

Survey Purpose 

1. To reach as many people as we can in the UK, Channel Islands, and Ise of Man, who might have symptoms or a diagnosis of ME/CFS and Long Covid. 

2. To gain insight into how these symptoms and diagnoses are affecting people’s lives and how effective the support from the NHS and social care services has been. 

Survey Outcomes 

1. We can help more people learn about and recognise ME/CFS and Long Covid, obtain an accurate diagnosis if they need one, and access the most suitable management advice to help improve life quality. 

2. A report will be produced by the market research agency based on the survey responses. We will use the report to: 

• support continuing efforts to influence others about how people are affected and their ability to access health and social care when needed. 

• help improve health and social care services, work with healthcare providers to effectively implement the NICE Clinical Guideline recommendations, and to recognise the importance of listening to patients and tailoring care accordingly. 

[1] Office for National Statistics (ONS): Prevalence of ongoing symptoms following Covid-19 infection | 30 March 2023