The Virtual Cure.

Like most introverted geeks I’m a big fan of video games, and spend so much time playing them that I’m considering replacing my wheelchair control panel with a game controller. While I’m fond of some role-playing games my favourites tend to focus on either driving skills or combat, perhaps because I’m a weird kind of adrenaline junky who doesn’t like rollercoasters but still wants thrills.

There was a time when I wasn’t as comfortable playing video games as I am now, partly because of the stigma against female gamers that was prominent until relatively recently. It is only in the past year or so that I have come to describe myself as an avid, if casual, gamer. However in that time I have developed a deep love of video games that I refuse to be ashamed of, either for being a woman or being disabled. Nor do I take my gaming habits too seriously; they are what I do when I want a break and maybe a little stress relief, and are particularly fun when paired with a glass of wine (as is the case with a great many things).

A good video game is as immersive as an Agatha Christie novel and triggers genuine emotions as the story unfolds. Admittedly the emotions from Doom tend to be more of the “DIE YOU —— ——-“ type, but Horizon: Zero Dawn is a little more nuanced in between beating up giant robots with a spear. A game that can invest you in the setting, characters, and stories so beautifully feels real as you play. It doesn’t feel like I’m pressing buttons to move a digital image; it feels like I’m there reacting to the situation as it all happens. This is undeniably exhilarating for anyone, but for me it means I can experience the thrills of vigorous activity while only getting a cramp in my thumb. If a game is good enough it feels as if I can run and jump and do crazy somersaults that I couldn’t even manage pre-disability, let alone now. Besides, everyone deserves a little fun now and then.

At this point I probably sound like some over-invested nerd and perhaps to some extent I am, but I’m not exaggerating when I say that for a few all-too-short hours I am virtually cured. If for the rest of my life this is my only taste of having a fully-functional and not-painful body then I can live with that. I’m not about to start a gaming channel on YouTube, partly because I would only embarrass myself with my rather comical ability to fall off a cliff at the worst possible time, every single time.

Everybody has their favourite recreational pass-time and I am no different, disabled or otherwise. Sometimes we have a tendency to overlook the importance of recreation and how it can benefit us in unexpected ways. Now if you’ll excuse me, the PlayStation calls…

Afflictions of the Afflicted.

The recent Netflix series, Afflicted, follows seven sufferers of various chronic illnesses as they search for effective treatments that could enable them to live relatively normally. This group of sufferers was extremely small and all of the cases were very severe, hardly presenting a representative group of chronic illness patients to look at, but the show could still have helped raise awareness and public understanding of these conditions. However, instead of doing this the participants have been subject to increased ridicule and disbelief, which has then spread to chronic illness sufferers in general. The backlash from people like myself who suffer from chronic, disabling illnesses prompted me to watch the show and briefly investigate the stories of the show’s subjects. My personal feelings made it tough to watch, but as a scientist I was able to somewhat distance myself from my emotions, and to analyse the poor research and presentation of information that dominated the show.

As I pick apart the poorly managed editing and illogical blanket statements made by arrogant doctors, I half hope that the people who produced Afflicted get to see this, and if nothing else can learn from my observations.

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Episode 1: Toxic World.

In the opening montage a few medical experts are seen giving their thoughts on chronic illness. The only problem was that the medics did not have backgrounds in chronic illness diagnosis and treatment, predominantly coming from psychiatric and psychological departments, with a specialist in infectious diseases added for some inexplicable reason. No researchers or doctors with experience relevant to chronic illnesses appeared throughout the entire montage, setting the tone for the rest of the show.

One of these doctors told his interviewer that if he didn’t understand the cause of the disease or symptoms, then they must be psychological or simply faked for attention. Clearly this doctor hadn’t done their research beforehand, or perhaps they would have noticed the plethora of research exploring the physiological and biochemical reactions associated with the diseases, often centring on over-active immune systems responding to things they shouldn’t be. It is also incredibly arrogant to believe that medical research has provided all the answers and that we know everything there is to know about human medicine. I might also point out that at one time, we didn’t understand what cancer was, unless of course he would like to presume that the symptoms of cancer are faked.

The doctors went on to denounce alternative therapies but of course refused to suggest anything to help the patients, leaving them with nothing but desperation instead. Some of the participants had to take drastic measures, in one case this involved moving to a quiet zone to escape the city-levels of electromagnetic radiation that were causing the sufferer a great deal of distress.

About half way through the episode we were introduced to Jamison, who I identified as an M.E sufferer long before it was confirmed. There was a very short clip of him cleaning his teeth when his grip suddenly loosens on the tooth brush, his eyes slide shut, and his head lolls momentarily, almost as if he had lost consciousness. Having seen myself do that in the bathroom mirror on countless occasions, I knew it was M.E. Of course some of the medics had less than positive statements to make about M.E, stating it was a description of symptoms and not a full diagnosis, seemingly questioning the legitimacy of the illness in doing so. Little did I realise this had only scratched the surface of the lunacy to come.

Episode 2: Support.

The family and friends of the participants were interviewed in this episode, and on the occasions where the interviewer can be heard asking the questions, it should be stated that the questions were extremely leading and biased towards particular answers, including whether they doubted the patients sincerity in the number and scale of their symptoms. The disbelief and doubt shown by friends and family only served to reaffirm the disbelief and doubt of strangers who seem dead-set on making the miserable lives of those who are sick even worse. Medics and carers often doubted the patients too, and when one had to visit the hospital and explain her illness the nurse physically rolled his eyes in exasperation, something which I have experienced myself.

The patients wandered from doctor to doctor, desperately searching for a medic who not only believed them, but was also knowledgeable about the disease and its treatment. Time and time again these patients were set up with a glimpse of hope only for it to come crashing down. Some of the specialists even had the nerve to provide placebo treatments while charging the patient extortionate amounts, stating that the placebo effect was better than nothing and that few actual treatments would work without the belief that they would help to begin with. What wasn’t shown was the length of time between each visit to a new specialist, which could be months at a time left alone to live with a brutal illness without any help at all, only adding to the misery of the patient.

Once again the show visited M.E patient Jamison, who explained that he preferred to call his illness M.E as CFS (chronic fatigue syndrome) gave an unrealistic impression of the disease, making it sound like only a little fatigue and over-looking all of the other symptoms. It was explained that M.E and CFS are interchangeable medical terms, despite the desire of some to separate the terms in order to distinguish M.E from CFS, making it feel more legitimate as a disease; they are the same disease according to medical research, in any case.

A supposed specialist came to visit Jamison, giving a long lecture on how M.E was an inaccurate name because that implied swelling of the brain, something not always present in patients with the disease despite them displaying the same symptoms. He then went on to say that Jamison’s symptoms did not match up with those of M.E, despite the fact that they did in fact match up almost perfectly with those studied in research papers. Of course, once this pointless lecture had ended, he left offering no support and no alternative diagnosis, leaving Jamison bed-bound but with less money in his pocket.

Jamison Afflicted

Towards the end of the episode a montage of medics explained how mental trauma can have physical manifestations, which in itself is not a false or misleading statement. However, they went on to give very physical examples of trauma such as a car accident, failing to realise that these incidents had physical manifestations due to physical injuries. These montages certainly did not help the cases of the patients.

Episode 3: Identity.

Of all the episodes, this was the one to anger me the most. The opening montage discussed the contentious issue of identity when suffering a chronic illness, with one medic going so far as to claim that chronic illness became such an integral part of people’s identity that they no longer wanted to get well, implying that it was their own fault for their prolonged suffering. Again, the fact that there are no cures or effective treatments was ignored; how can someone not want a cure that doesn’t even exist?

Chronic illness changes people’s identity because it usually results in massive changes in lifestyle to accommodate new treatments and avoid triggers. Just as religion becomes integral to someone’s identity, so does chronic illness. The isolation, loss of friends, failure to achieve dreams, and the constant battle with doubt and disbelief even from those closest to you would change even the most stoic of people, and chronic illness often erodes away people’s lives until only their illness is left. It is not a choice to be given this identity, but is one imposed upon us by a society who believes every single one of us to be collectively part of the biggest conspiracy theory humanity has ever seen.

When it comes to lifestyle changes one of the largest and most complex is dietary change; as someone with a 1st class honours degree in nutrition from a top university, I should know. Star, who suffered from a plethora of conditions accumulating in great discomfort, was shown discussing her diet with a formulist. That formulist just so happened to be spouting information that was downright false, bordering on dangerous. Another patient decided to go to a chronic toxicity clinic; anyone who has studied toxicology in some form will know that it is virtually impossible to study chronic, low-level toxin exposure due to the inability to measure the intake of these toxins, the inability to account for the effects of different exposures (i.e. inhaled, ingested etc.), and the inability to account for the interactions between toxins. If their effects cannot be studied, how is it even possible to offer someone knowledgeable treatment for chronic toxicity? The answer is, it isn’t. However, when these people are the only ones willing to help those with chronic illnesses, when everyone else turns them away, what choice do they have in who gives them medical information?

Episode 4: The Mind.

Let me start this section by stating that even the most experienced philosophers cannot fully fathom what exactly the mind is, and how it differentiates from the physical brain (if it even does differ). Therefore any speculation put forth by irrelevant medical experts is simply a waste of breath at this point, but breath was wasted regardless.

Once again viewers were subjected to a medical montage of mind-blowing stupidity masquerading as intelligent commentary. One of the doctors explained how he believed that all of these chronic illnesses were simply different manifestations of one psychiatric disorder, calling patients of these illnesses delusional. Of course, how one disorder could result in such a wide range of physical effects (including the fluctuation of symptoms) was completely ignored, as was the fact that delusions can be treated with medicines and therapies, unlike the chronic illnesses in question.

When interacting with patients, doctors and nurses were shown to have a complete disregard for any symptoms reported by the patient, ignoring them and leaving them in pain to discover at a later date that something was seriously wrong all along. The answer “I don’t know” was seen as sufficient for any questions asked by the patient, leaving these people clueless as to what was being done to them and their bodies, a truly terrifying experience.

One interesting point raised by a doctor whom I actually agreed with concerned the phrase “in your head”. It is possible that these chronic illnesses result from chemical or physical damage in the brain, causing neurones to dysfunction and synapses to misfire. The damage could physically be “in someone’s head” without it ever being psychological, and from my knowledge of physiology and scientific research, I would be wager on this being the case at least part of the time.

Episode 5: The Cost.

As a UK citizen I am fortunate enough to have the majority of my medical costs covered by the NHS, and I don’t have to worry about insurance companies failing to recognise chronic illnesses or the few treatments available for them. I was both fascinated and horrified to see the American participants literally bankrupting themselves going from doctor to doctor in an attempt to receive help, taking gambles on alternative treatments that may or may not work regardless of the cost. The financial stress can only have worsened the symptoms of the sufferers, and also made access to care much harder as carers were required to take on extra work to support themselves.

A point I hadn’t considered was the fact that no one ever saves up for chronic illnesses. Having some money available in case of an injury like a broken leg is sensible, but in most cases that cost will be a one off foray into misery, rather than a constant onslaught of medics hell-bent on ripping someone’s livelihood to pieces.

The episode was only really ruined by one psychiatrist, who decided to let the world know that chronic illness patients were faking symptoms (as fluctuating symptoms couldn’t possibly be physical, because no one making this show had ever met a cancer patient before) for pity, and in particular financial gain. However, most toddlers could grasp that the books simply don’t balance in this case, and the show skipped over this moment in the hope no one would pick up on its blatant idiocy.

Jake Afflicted

Episode 6: Mind and Body.

The psychiatrist Armageddon troop returned in full force in this episode, declaring that it is possible to imagine something so hard and so deeply that it becomes real. This statement is not false, but is entirely irrelevant to the discussion of chronic illnesses, as if this were true psychiatric medicines and therapies would be effective cures. It is indeed true that psychological burdens can worsen chronic illnesses, but as to being the cause I remain highly sceptical.

As the episode progresses it is shown how relationships between friends and family can suffer when someone has a chronic illness, with one father seemingly incapable of any form of compassion judging by his interviews even, claiming that relationships were impossible under the circumstances. The breakdown of relationships and inability to form new ones can only add to the aforementioned psychological burden, but everyone seemed to blame this entirely on the chronic illness patient, rather than recognising that a relationship is a two-way commitment that they are partially responsible for. I suppose it is easy to blame someone for everything when they are totally unable to defend themselves.

In this episode we finally met a doctor who was extremely experienced and educated when it comes to chronic illnesses, and who actually offered proper support to her patient (albeit at a substantial cost). In an interview she explains how modern medicine has become so bloated with the over-abundance of relentless information that many doctors have simply forgotten how to process and use that information, particularly on a patient-by-patient basis. Given the lack of bedside manner in all of the medics previously shown in the series, I can only agree.

Episode 7: Well.

The final episode of the series tried to give everyone a happy ending, which as any chronic illness patient knows, is far from reality. Most people never fully recover, although some may get better but not completely well, and an unfortunate few will see their health declining until they die while doctors stand above them arguing about whether they’re faking it.

Many of the shows participants wished to return to functional; able to live a relatively normal life among society, and not having to constantly deal with pain and exhaustion. It is safe to say that someone’s perception of health is very much altered by chronic illness, and priorities change. Health is no longer about maintaining smooth skin and firm muscle tone, and more about being able to work and have a family.

Due to the fact that these diseases are complex and multi-faceted it often takes many different treatments to reach the stage of functional wellness, and for Americans that means a large amount of money too. Sometimes the need to eradicate one symptom has to be prioritised over another, a very difficult decision to make. The show fails to demonstrate the amount of time, effort, money, resources, and cooperation that is needed to undertake this process, instead portraying the effects as more of a sudden miracle. This only adds to the scepticism displayed by our doubters.

It should also be said that treatment can mean many different things; it could be drugs, physical therapies, psychological therapies, or it could be less conventional as in the case of functional medicine. This is the manipulation of a patient’s environment to make them feel better, and indeed diet can fall into this category. The avoidance of triggers is perhaps the most imperative aspect of functional medicine, but it is virtually impossible to filter out all of the mould, spores, or chemicals that are causing patients so much misery. Sometimes the drastic measures needed cost too much, or are too impractical, which only serves to emphasise that not everyone gets a happy ending.

The Participants.

Having watched all of the series I decided to do a little digging and look into the stories of the participants of the show, to see what they make of the carnage.

The participants had wanted to raise awareness for their conditions and perhaps even to promote research; the problem seemed to be with who was involved with the management of the show, and the way it was edited.

The experts interviewed were rarely experts in chronic illness diagnosis, treatment, or research, giving uninformed and irrelevant opinions that gave a false impression of the participants. Current physiological understanding was left out, as were the concrete tests and diagnoses patients received in place of the alleged self-diagnosis. The fact that the patients had tried conventional treatments, including psychological treatments, was brushed over, leaving out the fact that they had tried these things in order to get well and had found that they all failed. Similarly, their scepticism before being subjected to alternative therapies was overlooked, as was the fact that these were invariably a last resort.

It didn’t help matters that throughout the series the participants were asked to provide details of their illness and treatments; given that they lacked the medical vocabulary of the doctors treating them, the explanations came across as vague, ill-thought out conspiracy theories, rather than the medically-sound explanations they actually were.

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In conclusion, this show was poorly researched and poorly edited to the point where I suspect the director and producer in charge did not believe in these illnesses and wished to mock them instead. Leading questions were used in interviews, important information was excluded, irrelevant opinions were included and presented as facts, and the participants were in no way representative of chronic illness sufferers in general. This appalling display of arrogance and self-assurance deserves every criticism it receives, and I hope that the creators of such sensationalised propaganda can learn from their mistakes.

M.E Awareness Week.

MEAW Summary

M.E Awareness Week 2018 runs from 7th to 13th May – here’s what you can look forward to on Diary of a Disabled Person:

25% of all donations received during this period will be in turn donated to the M.E Association, a charity supporting sufferers of the condition.

6th May; How bad can M.E really get? Find out in special blog post “The Worst Days”.

10th May; Q&A Session. Submit your questions about living with M.E on the “contact” page by 10th May, and I will try to answer as many as possible in a short video.

13th May; What are the most ridiculous theories about M.E? Find out in “The Many Theories of M.E”.

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