Not enough is known, medically, about those people diagnosed with Severe/Very Severe ME, to know how any treatment or vaccine might affect the person.
There is not even any agreed definition of ME, there is no universal safe treatment pathway, there is not enough good care guidance, to help doctors and nurses know how to deal with a person with ME, let alone if they then contract a dangerous virus, like Covid 19 on top of it.
Anyone admitted to hospital will be reliant upon the medical staff understanding their physical and cognitive issues, their specific hypersensitivities, their complex communication difficulties and care needs.
Yet, given how much misinformation has been disseminated about ME having no underlying medical pathology, about being a mental health condition, their serious, physical, underlying disease may or may not be understood, recognised or even accepted. This could make the experience of having to go to hospital even more fraught with difficulty.
Without specific identified and medically recognised pathology for the disease, people are really not that safe, particularly if the underlying cause of their ME-specific symptoms is not recognised or known and the number of symptoms they may experience is not even fully recognised as such; given the very poor diagnostic criteria generally used currently.
Unfortunately, without disease specificity, the variety of conditions found under the umbrella term “ME/CFS” may have different causes and potentially different drug responses and reactions.
The threat of catching Covid 19 is huge for ordinary people, who normally navigate and interact in society well; the reported reality of those needing intubation strikes sheer terror in the mind.
This profoundly dangerous virus has already resulted in mass social distancing and self-isolation, but the fear of catching it, is realistically, multiply increased when you are already unable to participate in normal social interaction or meet your own basic care needs, without the help of others or communicate well or at all or perhaps only at intervals, in a severely limited way, when you cannot tolerate being with others or participate in ordinary life.
When your baseline before potentially catching the new virus is almost total isolation, physical weakness, extreme pain and hypersensitivity to normal environments and complete dependency to get your needs met, with poorly understood symptoms, your whole world and coping strategies are under massive extra threat.
The impact of others’ self-isolating can also be a huge extra problem.
Suddenly everyone around you is also at home, making more noise, impacting you in unexpected ways. They need to consume more food. They need to use more electricity and heating. They will spend more time on the internet probably, potentially crashing or overloading the system as social life is removed for them too.
People are in their gardens making a lot of noise, doing extra odd jobs around the house. The relative peace, if you were lucky to have it before they were all at home too, may be lost in a sea of other people’s new noise.
There may be more washing on the line, wafting perfume and petro-chemical-soaked fabric conditioner across your garden or in your windows, forcing you to maintain even greater isolation within your own already tiny limited life, pushing you to remain in doors with windows shut, often just on one room, losing that extra special, much needed fresh air or exposure to sunlight, while they obliviously enjoy themselves at your expense, even more than usual.
Your regular shopping delivery, that you rely on weekly to provide you with a reliable source of very specific makes of food or fragrance free products or much needed ‘free from’ ranges, is suddenly booked up, it is impossibly hard to change your order, in time, because you cannot get on the website, as it is overloaded with a massive influx of new users, the products you need have all been bought up, you cannot necessarily tolerate substitutions, even if they are available, the specific amounts of particular items that you need to get through the week are refused you on the basis of fairness to everyone, but what is fair about getting less than your health needs dictate?
Basic products like toilet rolls and soap, not being delivered at all. Paracetamol, cheap as chips, is completely sold out in store and online. We only want one packet or maybe a couple, but we cannot get it!
The fear of getting the dreaded fever in these circumstances becomes even higher. Nothing available to bring it down quickly or at all. That cannot be good.
This whole situation is stressful and new for everyone.
The social distancing and change to work and social life must be a huge shock, but the additional stress and worry of how to get your basic and specific needs met in a system that is unexpectedly, suddenly failing you, when you cannot go shopping yourself ever and the sole carer you have is at risk of catching a deadly disease, just trying to get your prescription drugs, let alone do anything else for you, is potentially overwhelming.
The risk of your carer getting the virus or bringing it home invisibly on clothing or other items, increases fear and practical problems.
For someone already with massively depleted energy and severe cognitive difficulties, having to remember to wash your hands repeatedly and avoid facial contact, is a huge challenge. The extra energy required in itself to do this it enough to deteriorate your health further. The risk of inadvertently catching the virus, even in a quite isolated situation, is still very real, yet also invisible.
If your carer gets extremely ill, there is the potential threat of them having to leave you to go to hospital, without desperately needed physicals care and emotional and practical support, the thought of this happening is dire. What if they die? What if you have it too? How will you cope?
The biggest problem is the oppressive, potentially devastating, yet, invisible threat, to an already fragile, delicately balanced life, that is suddenly being tipped out of balance.
The fact that anyone could have the virus and pass it on to you unwittingly and unknowingly, without warning or without any way of detecting it until symptoms appear days later is fundamentally scary.
The fact that someone could accidentally and unintentionally, without awareness, bring this dangerous virus into your home on a plastic bag or a coat or a gift or food packaging even, is beyond normal expectation.
It is the invisible threat that is so insidious and exhausting. It is the unknown quantity of how it might affect you that is incapacitating.
It is not knowing if it would very severely harm you or kill you or if you might get away with a milder dose, whatever that looks like, that is so crushing.
It is not knowing how you would cope if you had to go to hospital, because of all the extra health issues and care needs you have already and the lack of physical explanation for the already seriously complicating symptoms like paralysis, that adds an additional layer of complexity to helping you. Or whether they would even admit you or treat you or just leave you to die anyway, as the system becomes overloaded and anyway you are too old with underlying health conditions.
It leaves you asking is life really that unequal in value? It leaves you needing absolutely not to catch this virus or lose your carer to it.
It needs the greatest protection of all for the most vulnerable.
Saddest of all, it leaves every single other person, including your carer as a potential threat, literally to your life. And that is not a good place for anyone to be in.
Linda and Greg Crowhurst
March 2020


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