“A myth is, of course, not a fairy story. It is the presentation of facts belonging to one category in the idioms appropriate to another. To explore a myth is accordingly not to deny the facts but to re-allocate them.” Ryle, Gilbert in ‘The Concept of Mind’
We are acutely living in a world where a ‘relocating’ of many facts has also been rewriting the mythological background in medicine within a space of months. This cute, spiky little monster that brought us the Covid-19 pandemic is the main actor in many new myths to be explored as we find the way into a world that will be different in every aspect of our conscious understanding.
For now, let us merely have a peek at one small rethink that is probably going to affect the lives of hundreds of patients who have had to slip in and out the back door of regular medicine, up to now. ME or CFS, and now also called SEID, has struggled to become a properly accepted guest in the prime drawing rooms of formal research medicine. However, nothing is so heart-rending as the suffering of a patient who goes from specialist to specialist with this weird collection of complaints, ending up with a range of explanations and treatments as diverse as the symptoms of the disease itself.
Any of us who have treated many of these patients soon learned a few basic facts:
• The condition is a biological reality and not an imaginary or psychological set of adaptation strategies.
• The immune system is involved and seems to be overreacting.
• Neurological symptoms include brain fog and fatigue that may be similar to depression, but are without the sadness and ‘black’ mood of depression.
• Autonomic nervous disturbances and dysautonomia lead to instability in blood pressure and heart rate as well as sleep disturbances and episodes of bowel and bladder disfunction.
Since the very start when the disease became recognised in the medical world, there was an association with a possible viral infection, especially as it usually included an episode of a flu-like illness before the fatigue and other symptoms started. Entero viruses, Epstein-Barr virus and many others were associated with ME. An interesting fact is that so far, the only animals diagnosed with central chronic fatigue after viral infections have been dogs and horses, and here we could share the Parvo-19 virus as a single source. Anyhow, the latest research clearly points towards an inflammatory illness based upon a certain hypersensitivity in the immune system. This includes changes in the levels of various cytokines in the bloodstream – a protein that takes part in cell signalling in the immune system – and especially the ones that stimulate inflammation. Nonetheless, although some antibody studies showed promise, they could never a find definite, consistent enough relationship with a viral infection. So, ME\SEID had to stay in the backrooms of modern medicine.
And now, here in 2020 we may have a rethink that could change the world of medical myth as well as our overall social adaptation to everyday living. Without warning a well prepared, clever and sticky mini creature slipped into our world a few months ago. By now we are used to the massive amount of information and statistical evaluations the media throws at us daily. We have had to handle lockdowns, changes in our attitude towards governments and medical organisations, and living without most kinds of group entertainment. There have been protests about every form of social discrimination, which could be expected during any sudden conscious reassessment of our mortality and expectations about life.
I just love this image that I borrowed from the newsletter of Nature, depicting children running past a mural warning about COVID-19 in Nairobi. It illustrates both the mythology and reality of the virus is all its facets.
So, how do we link this to ME or SEID?
The medical figure trying to chain the virus in the image above portrays the present medical situation perfectly. Never was there such a scramble to understand viral infections, the details of their interaction with the immune system, and their possible long term effect. Up to now, after literally removing dangerous viruses that mostly killed children, such as measles and polio, from the human story, and properly caging others such as smallpox, hepatitis and other adult viruses, we have left virus research in the hands of a small group of experts. Flu and colds we just ignored and accepted as part of daily life.
But now we are sprinting to catch this little spiky monster. For the first few months all attention went to the qualities of the virus itself, the numbers of infections and mortality of the disease. Presently, as the initial rush for understanding settles down, the bodily after-effects of the illness are slowly but surely demanding more attention. The hyper-inflammation of the immune response triggered by the virus caused many to lose their lives. However, the immune side effects and symptoms which still remain a few months later in those who have recovered are so similar to those of ME or SEID that it is quite scary. The American CDC found that 20-35% of people who tested positive for SARS-CoV-2 and did not have enough symptoms to be hospitalized, and also had no previous chronic conditions up to now, did not return to their previous health and stamina. Most suffer from typical inflammatory and immune system dysregulation.
Now, imagine a world where even just 10% of Covid-19 patients suffer from ME/SEID. Will this at last cause a new surge in research about this ‘back door’ syndrome and its treatment?
Images:
• SARS–CoV2 virus image – https://upload.wikimedia.org/wikipedia/commons/8/82/SARS-CoV-2_without_background.png
• Children run past a mural warning about COVID-19 in Nairobi. Kenya has reported relatively few cases so far. (Brian Inganga/AP/Shutterstock) – https://www.sciencemag.org/news/2020/08/pandemic-appears-have-spared-africa-so-far-scientists-are-struggling-explain-why