LongCovidSOS

UK based campaign for recognition of the debilitating effects of long term Covid-19.

A group of long-term sufferers has formed the LongCovidSOS to put pressure on the government to recognize the needs of this group, and to raise awareness among the general public and employers so that people with this condition are not discriminated against.

Throughout the Covid-19 pandemic government policy has continued to overlook the needs of those with long term symptoms. Reports from the news media and briefings from Downing Street overwhelmingly focus on patients with severe disease and those who have tragically lost their lives. However, during this period millions of people in the UK contracted the virus. Unless their symptoms were considered serious, they were left to manage their illness at home, sometimes alone.  Their suffering was invisible. Contrary to the view that those not hospitalized have only ‘mild’ disease, many of these people were faced with debilitating, frightening symptoms.

A clearer picture of the long-term effects of Covid-19 is starting to emerge. While it’s still claimed that patients with ‘mild’ symptoms usually recover within a couple of weeks, previously fit, healthy and in many cases young people are battling continuing illness and are unable to return to their previous lives. Sufferers report breathing difficulties, muscle weakness and pain, fatigue and prolonged fever as well as neurological, vascular and cardiac symptoms. The Zoe Covid Symptom Study has produced figures suggesting that 10% of people who contracted Covid-19 are still unwell after three weeks, and that 5% may continue to be sick for months. Hundreds of thousands of UK citizens are likely to be affected, and they represent a largely ignored cohort of Covid-19 victims.

Stories of individual cases highlighting their suffering and problems getting treated for their illness have begun to appear in the media, but to date the UK Government has failed to recognise this growing crisis. Some health professionals seem to be unaware of the existence of this phenomenon; those that do often lack the resources to help, leaving many struggling to get the care and recognition they need.  Sufferers may be unable to get support from family and friends who do not understand why they are ill for so long, and many are put under pressure to return to work or otherwise face a loss of sickness benefit.

The Message in a Bottle Campaign:

The campaign highlights the sense of abandonment many feel. The aims of the campaign can be summarized as Recognition - Research - Rehab:

  1. Set up a working group to address the needs of long-term Covid-19 sufferers.

  2. Commission urgent research into this condition.       

  3. Ensure that all practitioners are empowered to treat these patients appropriately.

  4. Establish multi-disciplinary clinics to properly assess, test, diagnosis and care for them.

  5. Focus on the economic implications: provide long-term sick leave, financial support and take steps to ensure employers are made fully aware.

Campaign Elements:

  • An open letter to the Prime Minister, Health Secretary and others involved in health policy

  • A short film highlighting the impact of the disease

  • The delivery of personal ‘messages in a bottle’ from sufferers to10 Downing Street

Michelle LukezicLong Covid, Research, Advocacy