Long Covid patients fear there is a lack of belief or understanding in what they are going through, a prominent UK public health expert says.
And Dr Nisreen Alwan, associate professor of public health at the University of Southampton, says doctors should be listening to their patients, not judging them.
The attitude towards the continuing symptoms of Covid-19 from medical workers pushed patients to form groups on social media for encouragement and empathy, Dr Alwan said.
"People with long Covid formed a movement that demanded recognition of what was happening to them," the British-Iraqi author said in her new paper, The Road to Addressing Long Covid.
"During the first wave of the pandemic in 2020, online testimonials of prolonged symptoms following severe acute respiratory syndrome coronavirus infection were the only source of reassurance to others with a similar experience, including this author.
"In the absence of any guidance or recognition about the possibility of a persistent illness, peer support is all that people with long Covid had."
Dr Alwan said long Covid was probably "the first illness in history that has been defined by patients through social media platforms such as Twitter and Facebook".
She said the effects of long Covid on mental health were exacerbated by a "concerning" lack of belief.
“Anxiety can be caused by multiple factors, including the uncertainty of prognosis and treatment, as well as being denied recognition, employment benefits and support because of being disbelieved, particularly if there is no lab confirmation of Covid-19 infection.
“Anxiety may be secondary to not recovering rather than being the primary manifestation of the illness.
"Being diagnosed with anxiety with no adequate attention to other symptoms can be isolating and detrimental to the patient’s well-being,” she adds.
She said about one in three people with Covid-19 illness still experienced symptoms 12 weeks after onset. The most prevalent is commonly called "fatigue".
"Often mistaken for tiredness, this is better described as a feeling of utter exhaustion, energy drain or bodily dysfunction that is not necessarily triggered by exertion and is not always relieved by rest."
Other long Covid symptoms include cognitive dysfunction, including poor memory or concentration, confusion and “brain fog”, she said in the American Association for the Advancement of Science journal on Thursday.
Chest pain or heaviness, breathlessness, headache, muscle aches, dizziness and palpitations are also common.
Two thirds of people with long Covid say it limits their ability to perform everyday activities.
"Long Covid substantially affects leisure and social activities, self-care, care for children or older adults, and the ability to do domestic chores," Dr Alwan said.
She said the long-term disease commonly led patients to take sick leave, leading to a loss of income and adding to statistics that show poorer areas of the community are more affected by the pandemic.
"This will probably accentuate the socioeconomic disparities that are reflected by rates of coronavirus infection and mortality," Dr Alwan said.
She quoted findings from the UK's Office for National Statistics that estimated in June 2021, almost 1 million people who reported having Covid-19 had symptoms for more than four weeks.
And 385,000 were said to have had Covid-19 at least 12 months earlier, the findings showed.
All age groups were affected, including children, with an estimated 33,000 aged 2 to 16 years having long Covid.
Of those, 26,000 had symptoms for at least 12 weeks and 9,000 for at least one year.
Dr Alwan said for the medical community to properly address the chronic symptoms of Covid-19, it needed humility, open-mindedness, compassion and scientific rigour.
"Rigorous research to understand the mechanisms, risk factors, prognosis and subgroup characteristics, and to identify potential therapeutics for long Covid, are desperately needed," she says.
"The true picture of long Covid can only be ascertained with a multidisciplinary approach.
“Science, policy and society as a whole seem to acknowledge and address immediate impacts much better than the subsequent effects. Let this pandemic be the time to change that.”
Dr Alwan was awarded an MBE for services to medicine and public health in this year's Queen's New Year Honours list.