Those who have long covid can not be waved away as easily as those with ME
Agnes Arpi
Now a just awakened muddle-headed Sweden will have to meet the needs of the new patient group with long-term covid. At the same time, tens of thousands of similarly ill people are still without care and security after many years.
Covid-19 swept the world, and in its wake a new group of patients emerged. The long-term sick, who have only now begun to be recognized in earnest in Sweden. Research funding has been invested and a few specialized clinics have opened.
At the same time, the awareness is slowly improving that, for example, organ damage is not always visible on basic tests in primary care.
Long covid becomes "anxiety" in the journal
The victims have a lot to deal with in their new reality. In addition to unpleasant and frightening symptoms that do not go away, many people have suddenly realized that they are no longer considered credible.
Healthcare and authorities have been unprepared. There is no basis for a decision, says the Swedish Social Insurance Agency, when the still sick are to be forced back to work. And when you do not know better, it is always easy to say "psychological" - therefore "anxiety" is a diagnosis in the medical records.
Similarities with the lives of ME patients
Everything sounds so familiar. If you have not both closed your eyes and covered your ears, that is.
I think of ME, sometimes called ME/CFS, more rarely "chronic fatigue syndrome". The disease is often triggered by an infection. The postviral fatigue does not go away. Many people associate the disease with this enormous fatigue, but in addition there are flu symptoms, hypersensitivity to sound and light, pain, stomach problems, exertion-induced deterioration and much more.
Patients are mistrusted. In Sweden, healthcare professionals can choose whether to believe in the diagnosis, despite [the official Swedish healthcare information website] 1177 articles and promises of specialist clinics in different regions. It is safe to go ahead and portray patients as crazy and demanding, without consequences.
Head tilted
Back to long covid. This is where the same types appear. As early as last summer, there were a bunch of general practitioners and CBT supporters, who, despite the meager state of knowledge, claimed that they should stop thinking so much and instead increase their activity to get healthy. Other opinion leaders have wilfully misinterpreted international studies in the battle for the concept "cultural disease".
People get upset and angry - here a new, terrible disease has taken away their health, work and a functioning family life, then someone comes with their head tilted and says "but little friend, you have become ill from talking to other frightened people on Facebook, have you tried to take a walk?”.
The problem can not be waved away
The difference is that this time it takes place in plain sight. Covid-19 affects the whole society. Everyone has been affected. When thousands of previously healthy people, many of them in healthcare professions, fall ill and then do not recover, it is not possible to dismiss the problem.
It is not possible to do the usual, to look for faults and shortcomings in individuals, when so many are hit so hard at the same time. When they are then kicked out of the social insurance system, despite the fact that many of them fell ill when they were working on the front lines against the infection, society vibrates with indignation and politicians promise to immediately review the system deficiencies.
The infection-triggered long-term sick people who were kicked out of the social insurance system a long time ago can only politely watch when this "new" phenomenon is being given attention.
ME patients have the right to live
It sometimes happens that the media shows the ME-sick interest. This is especially true when one of the most severely affected has taken his own life because the pain has become extreme, often aggravated by the healthcare they have been offered. Then suddenly the shortcomings become clear for a short while. Then the debate tends to culminate in the issue of the right to die. What it should be about more often is not the right of ME patients to die, but their right to live.
There is only one specialist clinic left in Sweden for this patient group of an estimated at least 10,000 people, largely referred to the care and support of family and relatives.
A just awakened muddle-headed Sweden
Now a just awakened muddle-headed Sweden will have to meet the needs of the new patient group with long covid, which has been estimated to include up to 160,000 people.
At the same time, tens of thousands of similarly ill people, with similar symptoms and problems getting help, are still after many years without care and security. Their questions are hanging in the air: What's new? Have you not learned anything?
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