Sydney. People coping with chronic covid are going online in search of better treatment, but online discussion forums, chat groups and other networks can give harmful and wrong advice to such people. Online groups promote unproven treatments, sometimes with members who provide information believing they are sharing useful information. Sometimes entrepreneurs directly promote their unproven remedies. Health researchers believe that there is some evidence-based treatment for people battling Covid for a long time.
In a situation of such uncertainty, people with symptoms of Covid may be tempted by unproven options like ‘blood wash’, stem cell infusion and ozone therapy. Some desperate long-term COVID victims say they are willing to try any treatment if they hope to improve their health.
The fight for recognition and medical aid: People living with COVID for a long time may suffer from health problems that debilitate them, making it difficult for them to go to work or enjoy activities they used to enjoy. Symptoms include fatigue, brain fog, chronic pain, depression and anxiety. They struggle to get medical help to identify their symptoms.
In fact, it was patient activism that first made the public and health professionals aware of how initially mild COVID infection symptoms can persist for months later. Online communities make a big difference Online discussion forums such as Reddit, as well as networks on Facebook and Twitter, have made a big difference to the long-standing COVID community. Reddit is a forum where thousands of members discuss supplements and treatments for chronic COVID. This approach is called ‘crowdsourced medicine’.
But there are disadvantages: However, there are potential dangers of online networking and crowdfunding medicine – the potential to spread misinformation. This has long been a problem, especially with other ‘combat diseases’ that are often dismissed by the medical profession. These include the chronic pain conditions fibromyalgia and myalgic encephalomyelitis (chronic fatigue syndrome). We have also seen the spread of health misinformation during the current pandemic on topics including masks and vaccines, along with past infectious diseases such as the Zika virus, in online patient forums and social media content.
false information: Medicine has been trying to find a cure for Kovid-19 for a long time, but it takes time to find a cure. Meanwhile, people who want answers to their questions and help with their symptoms are forced to turn to online sources, where available treatments don’t usually undergo expert scrutiny such as tests and reviews. Reddit and other sites are full of stuff like this. It is highly publicized by individuals, doctors and pharmaceutical company representatives and these experimental treatments are presented without any clinical trials.
Some are taking advantage of the frustration of this group of people by using the Long COVID Support Network to try to benefit from treatment plans or alternative therapies such as vitamin supplements and ozone therapy. Drugs that are scientifically discredited such as ivermectin are still being recommended by some longstanding COVID groups. Some patients have spent large sums of money on questionable treatments. These actions raise serious ethical concerns, including the potential for harm and deterioration of people’s health from these treatments.
How can we improve things?
people with prolonged covid; People living with chronic COVID-19 should carefully consider any genuine recommendations for treatments they find online and think twice before sharing them. Some have suggested a code of conduct for long-term support groups that would allow members to discuss their own experiences while refraining from recommending treatment. This can help limit the spread of false alerts. A code of conduct may also prohibit the promotion of for-profit treatment programs to eliminate the risk of defrauding members. However, this will require close control and not all sites or social media groups will have such resources. Another way to exercise caution is to find sources of information about long-term covid treatments and see if there are any links to published scientific evidence.
Health Personnel: There are important lessons for health care providers in understanding the needs of those affected by COVID-19 in the long run. This includes providing access to timely diagnosis and up-to-date valid medical information, as well as the importance of acknowledging the uncertainties and distress that many people feel. Acknowledging their expertise and working together for patient satisfaction will go a long way in helping those who feel unheard and want to take an active role in improving their health. The medical profession has begun to recognize these issues and recognize how a better understanding of chronic COVID can shed light on the diagnosis and treatment of other controversial diseases associated with it.
tags: australia, coronavirus
First published: 10 August 2022, 05:30 IST