“My head feels like it’s going to burst from pain”

Natalie Grams has written a book. That in itself would not be remarkable; It’s not her first. However, no publisher was found who wanted to print the book: because it wasn’t financially worthwhile and no one was interested in the content anyway. What an incredible misjudgment! Because even if everyone acts as if: The Covid virus still exists and is relevant. But nobody talks about it anymore. And also not about the victims and the consequences of the disease.

This cannot be a factual, objective book review. Not only do I know Natalie Grams; I count her as my friends. We found ourselves on the edge of Skepkon Met in 2018 and actually just wanted to do an interview. This became a friendship and Natalie Grams then became a member of the association’s executive board for several years, which made our work here possible.

And then Covid came. Natalie Grams suffered from Long Covid and also ME/CFS. A person who had enough energy for three people became someone who had to divide his strength into tiny doses. When I saw the first videos in which she made her illness public, tears came to my eyes.

“If the pandemic hadn’t come, hardly anyone would be interested in ME/CFS today. But despite the now great public awareness, many committed doctors as well as journalists and politicians, little has changed for those affected. Except that now have become much more, because some of the Long COVID patients also suffer from ME/CFS – in Germany alone there are now probably half a million ME/CFS sufferers.” (98)

In my opinion, the book is aimed, on the one hand, at doctors and people in medical professions and, on the other hand (and perhaps even more so) at those who are also affected. It is written in a generally understandable way so that even medical laypeople can understand what the problem is when receiving a diagnosis of ME/CFS: “The real horror is not just the diagnosis, but how those affected are left alone in our modern, highly specialized and – despite all its deficits – still powerful health system.” (74) After all, Natalie Grams was lucky enough to be a doctor herself and to receive this diagnosis quite quickly; She reports on cases in which those affected remained without a diagnosis and therefore without medical help for years.

Die Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) is a serious neuroimmunological disease that often leads to a high degree of physical disability. Around 17 million people are affected worldwide, and according to a conservative estimate, 500,000 people in Germany are currently affected, including around 80,000 children. “Approximately two-thirds of ME/CFS sufferers are never able to work again.” (135)

What does ME/CFS actually mean for those affected? Especially this: “Those affected have often been unable to do anything other than lie still in bed, with maximum isolation from stimuli – for years or even decades.” (108) It is therefore not surprising that the suicide rate of patients with this diagnosis is significantly higher than the average for the population. Because knowing that potentially a life “completely confined to bed, in need of care and unable to work” could lie in front of you, could probably make it easier for some people to say goodbye.

The public acts as if Corona is no longer an issue. But we just got used to it like we do to the annual flu waves. The horror became normal. “And many people rightly don’t care about the acute infection now, yes, only a few percent of those (re)infected develop Long COVID and even fewer ME/CFS.” (402) Natalie Grams demands that we should not ignore this, “Just because it’s not a good idea to even discuss pandemic-related topics without people literally attacking each other.” Because even if half a million people affected doesn’t seem like a lot; we as a society cannot simply ignore these people.

“Even before the pandemic, ME/CFS was a forgotten disease. Far too little was known about how drastically this disease can change the lives of often young people. For some who have suffered from it for years or decades (!), it must seem like a mockery It happened that at any time during my illness I was able to get out of bed, albeit with difficulty and with help, and even though I couldn’t sit, I was still able to walk a few steps and, for example, get to the toilet on my own Those affected are unable to do so themselves Basic self-care, such as daily personal hygiene, can even become impossible to speak or eat.” (338)

Patients with ME/CFS are often required for care. And what the state of care is like in Germany… we don’t need to talk about that at this point. Bad would be a gross understatement.

In addition, the costs for diagnostics and treatment alone are enormous. “The many blood tests alone probably cost me around €2,000. In addition, there are outpatient sleep diagnostics (€650), examination for small fiber neuropathy (€550), privately paid examination of the vessels and capillaries (almost €1,000), follow-up and medication adjustment discussions (each between 100-250 €), medication costs (approx. 300 €/month), travel and accommodation costs Experts… €1,000 for good air filters. And then of course the medication, nutritional supplements, infusions. All of this (and much more) is usually paid for out of your own pocket for years Basic security. (1856)

For many of those affected, these sums are simply impossible to afford. And health insurance companies do not cover many of the costs listed here and privately financed by Natalie Grams. “Anyone suffering from Long COVID and ME/CFS, in addition to the burden of physical symptoms, also has to feel the harshness of our social system. An example: Applying for a level of care, even if you are definitely dependent on care, is not easy at all. This is (also) because the care level criteria are not at all geared to the losses that one suffers from Long COVID and ME/CFS.” (1941) The additional need for help when children live in the household of those in need of care is determined by the current criteria “covered to exactly zero percent”. It is simply assumed that people with underage children are not in need of care. Point.

The damage to the general public caused by the lack of acceptance and the lack of knowledge about the disease (where even doctors advise those suffering from it to “not have it like that” or to “pull themselves together”) is far from known. Even in medicine, the idea has not yet become established “With Long COVID and ME/CFS (…) many things are counter-intuitive and contrary to known experience” running. The individual symptoms of the diseases are often not taken seriously or understood. In addition, there is (yet?) no proven drug treatment for the disease. Individual symptoms are treated more or less effectively.

In an interview with the Berliner Daily Mirror on October 10th, Natalie Grams said: “I am in the eleventh month of my illness. We have found a new mode with which we can live as a family. (…) I used to work full time and do a podcast. I have always been a very hard-working mother, so not for my children always available. Now I’m there, but no longer available.”

With this laboriously dictated book, Natalie Grams tries to wake us up to the distress, helplessness, fear and anger of those affected – this also includes the patients’ relatives! – to draw attention. She succeeded for me.

And for all those who still don’t fully understand what it means to have ME/CFS, I’ll let Natalie Grams speak again:

“Don’t laugh. Don’t read. Don’t play. Don’t listen to music. Don’t talk on the phone. Don’t look at the bright light. Don’t forget to enter the values ​​in the app. Don’t forget to write down everything that I shouldn’t forget. Don’t think. Don’t Open the window when there is noise outside (rarely). Don’t pull up the blinds when it’s light outside. Don’t want to do everything yourself. Don’t want to be ungrateful be unhappy Don’t even think about sports. Don’t go to the kids’ events. Don’t get upset Don’t move too quickly. Don’t worry too much. Don’t rush. Don’t forget the world. Don’t long for your friends. Don’t think about work. Don’t miss your colleagues. Don’t look for meaning. Don’t give up hope. Don’t get your hopes up too much. Don’t think about the future. Don’t think about the past. Don’t demonize the now. Sometimes I don’t know what not to do anymore.” (1410)

A notice: I have read the eBook; That’s why I can’t give page numbers for the quotations. The numbers in brackets are the so-called “locations”.