Long COVID

Long COVID or post-acute COVID-19 are terms used to describe a group of long term health problems that are found in a significant minority of people who were infected with the COVID-19 and remain ill after a number of weeks or months.

Long covid appears to be a multisystem disease, and may occur after any severity of COVID-19, including after relatively mild cases.

Long-haulers
A "long-hauler" is someone who became ill with confirmed or suspected coronavirus disease 19, who has not recovered many weeks or months later after first becoming ill.

Symptoms
Other reported symptoms include:
 * Profound (very severe) fatigue
 * Cough
 * Breathlessness
 * Muscle pain and body aches
 * Heavy chest or a feeling of pressure on the chest
 * Skin rashes
 * Heart palpitations
 * Fever
 * Headache
 * Diarrhea
 * The sensation of pins and needles

Pacing
Pacing is a method of activity management which aims to adapt everday activities in order to avoid relapses or increased symptoms.

Exercise therapy
ME/CFS patient groups have raised concerns about the use of graded exercise therapy (GET) in long covid patients and a similar warning has been issued by NICE in the UK. Graded exercise therapy, which is sometimes incorrectly referred to as activity management involves patients initially reducing their activity levels to a level that prevents regular crashes, and then typically increasing activity by 10% each week regardless of any increased symptoms or worsening illness. In graded exercise patients are told to ignore deterioration or increased symptoms and "push through" them.

Theory and evidence
In graded exercise therapy patients are told that their symptoms are caused only by inactivity and other "bad habits" rather than an underlying illness. These assumptions have very weak evidence, and significant evidence exists of underlying illness in ME/CFS; there is a lack of research about exercise therapy for long covid illness but some symptoms are inconsistent with this "deconditioning" assumption. Surveys of ME/CFS patients have consistently shown that large numbers of patients deteriorate as a result of graded exercise therapy, and a significant number become severely ill and never return to the level of functioning they had before the treatment.

Patient surveys
Not peer reviewed
 * Jul 2020, COVID-19 “Long Hauler” Symptoms Survey Report - with Survivor Corps
 * Data collected: Jul 25 2020. Respondents: 1,567+

Notable studies

 * Aug 14, 2020 (pre-print), Patient outcomes after hospitalisation with COVID-19 and implications for follow-up; results from a prospective UK cohort - (Full text) - from the DISCOVER project
 * Aug 11, 2020, Management of post-acute covid-19 in primary care - (Full text)

Presentations, interviews and videos

 * Aug 2020, Will Covid-19 lead to ME/CFS in some people? - presentation - Dr Anthony Komaroff
 * Jul 2020, Message in a Bottle video - LongCovidSOS

Letters and blogs

 * Sep 2020, Understanding Long Covid, A Shortcut to Solving ME/CFS? Simon McGrath
 * Jul 2020, Letter re Covid-19 Management and Exercise Caution - Forward-ME

National and international health bodies

 * NICE cautions against using graded exercise therapy for patients recovering from COVID-19

Learn more

 * Infographic: "Long covid" in primary care - BMJ journal
 * List of long covid studies (draft) - #MEAction