Work’s charity of the month for May will be the ME Association, & there will be plenty to look forward to right here too!
Work’s charity of the month for May will be the ME Association, & there will be plenty to look forward to right here too!
Tuesday morning was bright but cold as we headed towards the Thames. The London traffic was in full force & I could have sworn that we were moving faster than most of the cars. We crossed the river getting an excellent view of the Shard & St Paul’s as we did so, before heading down into a underpass. We re-emerged close to the foot of the London Eye.
The ticket hall was chaos. It didn’t help that the wheelchair access was down the side & made you go against the flow of traffic. Fortunately, we had pre-booked so only had to collect our tickets for later that afternoon before heading outside again.
A few doors down was a Sea Life centre, & with plenty of time to kill we decided to pay it a visit. With a couple of school trips taking place it was crowded at points, but we still managed to negotiate our way around without too many problems. My love of biology once again shone through as we meandered past tanks & through tunnels, with one rather large tiger shark seeming to take particular interest in the strange contraption I was riding.
A couple of hours later we resurfaced & headed to a nearby fish & chip shop, the irony of which was not lost on us. On the door we were asked to perform a surprise miracle, as apparently the wheelchair posed some kind of health & safety threat, but fortunately the manager spotted what was happening & dealt with it, giving the member of staff some of the most evil side-eye I had ever seen.
After a short stroll along the South Bank, including excellent views of the Houses of Parliament, it was time to get on the London Eye.
We arrived 15 minutes early as requested & waited for the member of staff who would be escorting us to arrive. No one showed up. When we asked a passing member of staff he seemed to have a panic about the wheelchair & needing a ramp, which we had all arranged beforehand, & suddenly disappeared off. Finally, someone arrived & we were escorted to the wheel.
I am proud to say that I am one of the few people the London Eye has actually stopped moving for, allowing staff to lay down the ramp so I could safely board. I parked myself at the end of the carriage as it filled with the small group who had booked VIP tickets like us, & discovered that the mystery panic-and-disappear man was the waiter who would be serving us champagne.
The wheel moved off & the lovely couple next to us took some photos of us, while I returned the favour for them.
All too soon we were back on solid ground making our way back to the hotel, where we rested before heading back out for a meal.
We woke up to the sound of rain pattering against the windows. After breakfast we returned to the tube station, this time hopping on the Circle Line to Hammersmith, not a line we had used before. It was by far the most accessible tube line I had seen, with the platform being level with the carriage at almost every station.
We emerged from Hammersmith & made our way towards Shepherd’s Bush market, grateful that the rain had thinned to a drizzle, stopping at an authentic Thai buffet on the way. The market itself was ridiculously accessible, with kerb drops left clear & ramps provided, & I wasn’t the only wheelchair user there.
After perusing the market we headed to a local cinema to see Fighting With My Family; we had been to a wrestling earlier in the week so it seemed fitting. While the film focussed on the little emo girl from Norwich, I particularly enjoyed the cameos from Dave Mastiff, Big Show, & Shaemus.
Before returning to the hotel we had one last place we wanted to visit, The Loading Bar (Server) which can be found near the market. This video game themed pub was not only accessible & welcoming, but just so happens to be the place where some of our favourite YouTubers go to film their livestreams. To be sat in the place we had seen on our TV screen so often was rather strange, but we soon settled into a game of Exploding Kittens (yes, that is a real game) over some cocktails. I can recommend the Assassin’s Mead.
It was raining as we returned to the tube station but the ride was just long enough to have dried before we headed back out into the rain again. We were grateful for the warmth of the hotel when we returned.
Upon waking up the next morning we were happy to discover no evidence of rain, & the promise of a bright day ahead. I took my time getting ready, pinning my hair into a nice style, & applying subtle but stylish make-up. We ventured out shortly before lunchtime, making our way through St George’s Gardens (the graveyard) & Russell Square, past the British Museum, & into Treadwell’s Occult bookshop.
Not only was the shop one of the only accessible one’s on the street but I was grateful not to find myself at the centre of an impromptu healing ritual, with the salesman letting us peruse the shelves at our leisure. Jarred said that if anything “spoke to me” or “leapt off the shelf at me” we should consider buying it, at which point I informed him that this being an occult shop, if anything did speak to me or leap off the shelf, I would make a hasty exit. Eventually we did have to make a somewhat hasty exit, as the incense was triggering my asthma.
We meandered through the West End, stopping to look in any shops that caught our eye, & made our way to the crowded Trafalgar square. Opposite the square was St Martin’s, the fully accessible crypt of which turned out to be a café.
After lunch and a quick peruse of some of the art in the National Gallery, where I proved to be an uncultured swine, we headed back into the West End. Around the corner we came to our destination; Her Majesty’s Theatre.
Upon showing our tickets for Phantom of the Opera to the member of staff outside, we were ushered into the stalls via a side entrance. As we went to our seats the disabled toilet was pointed out to us, & because the aisle was a ramp instead of steps, I could go all the way to my seat before getting into a theatre seat. My wheelchair was stored safely to one side as the rest of the audience filed in. It wasn’t long before the show began.
The show was truly a spectacle to behold, akin to nothing I had seen before. By the time it ended a chandelier had been dropped above the audience, & we had been close enough to feel the heat of the pyrotechnics. Still buzzing from the excitement, we went for a meal, returning to a pub from earlier in the week & returning to our common people lifestyle.
The week had flown by & now it was time to pack. We checked out of our hotel & hopped back on the tube for one last trip, heading back to Victoria train station. We browsed a couple of the shops & ate lunch there before heading to the coach station, & soon it was London we were leaving behind.
I spent the journey looking through the photographs, wishing I could do it all again. However, it was still good to see the Leeds skyline ahead of us & to know we were nearly home.
Disclaimer: I wrote this a couple of months ago before I had even been offered the opportunity to deliver a TEDx talk, & it was scheduled for release at the time of writing. Therefore the timing of the post is purely coincidental!
Anyone under the age of 35 has probably been lectured about how technology is sucking out our souls through our eye sockets and we’re only one grammatical error away from Skynet doing its thing. Some of us will even have received the lecture via social media, the irony of the matter being lost entirely on the person posting their expressive art about technology’s role in the destruction of humanity online. Technology gives us cancer, and big corporations use it to brainwash us into buying their products, and we’re losing the ability to socialise properly, and it’s making us paranoid etc.
Technology is not all bad. How many lives have been saved because instead of having to find the nearest phone box, someone could call an ambulance at the scene? How much more data can scientific studies collect and analyse for even better results? How many people have received earlier diagnoses of progressive diseases that would have just killed them before? How much progress would have been made in the fight against ableism if disabled people didn’t have technology to help them voice their concerns?
Chances are that even the most disabled among us can still use technology. New apps and programs become available all the time that read out loud to the visually impaired, or translate between English and sign language for the deaf, or give someone who is unable to speak a voice. Social media has allowed people with the same disabilities from across the globe to connect to each other, so even the most isolated patients can find others like them and support each other.
Cameras are very useful for providing physical evidence of discrimination such as blocked access routes, and also the abuse we can receive when asking people not to block access. Once posted online the rest of the world can finally see for themselves the difficulties disabled people face in their day-to-day lives. Sometimes it can even result in legal action.
Perhaps most significantly of all it can be extremely difficult to organise a demonstration against ableism due to poor access to transport, and the fact that all of the affordable hotels in the area will only have one accessible room apiece, which will be quickly booked up. Technology has instead allowed us to break the taboo around disability and discuss it properly, highlighting and resolving issues, and raising awareness of the fact that we are also humans.
Nor can disabled people easily sue for discrimination due to the difficulties in finding employment due to access and transport issues, and also because many courts lack wheelchair access, even going so far as a have steps up to the witness box. Technology has allowed us to shame ableist actions to the point where public outcry has forced government leaders to tackle the issue.
Technology does have its drawbacks, but the truth of the matter is that technology has helped to improve more lives than it’s ruined. There was a point in history when reading and writing was considered unnecessary technology, but now those abilities are almost sacred to us. How much of technophobia is actually due to a genuine fear of technology, and how much of it is simply a fear of change?
Given my passion for my chosen field of academic study (nutrition, if you didn’t know) you should probably be relieved that up until this point I have managed to resist to urge to write about what I eat. Today that all comes crumbling down (ooh, crumble).
The complexity of the relationship between diet and health cannot be overstated, but is only made more complicated once disease has to be considered. Throw in multiple diseases and suddenly you need a degree to figure it all out. Fortunately, I just so happen to have one.
My primary consideration when it comes to food is actually fat intake, due to the fact that all the way back in February 2017 someone stole my gall bladder. The gall bladder stores bile and pours it into the small intestine when food is detected in the gut. Fat absorption is increased as a result. Without a gall bladder bile simply drips into the gut continuously, regardless of the presence or absence of food. When it comes to meals the bile excretion doesn’t change and the ability to absorb fats from meals therefore reduces. Simply and grossly put, if the fat isn’t absorbed it leaves the intestines via another route in something called steatorrhoea. If you are in any way squeamish, for the love of god DO NOT GOOGLE WHAT THAT IS.
After this I need to assess my fibre intake. Colorectal cancer runs in the family, and the constant dripping of bile into the intestine after the gall bladder is removed irritates the gut wall, increasing the risk of developing the cancer even more. CFS can also result in constipation which is alleviated by fibre, as the use of painkillers and decreased exercise levels both demote bathroom business.
My next consideration is maintaining energy levels throughout the day. Consuming complex carbohydrates like bread, pasta, oats, rice etc. provides energy over a longer time period, and caffeine and sugar can be used to give me instant boosts when my energy levels drop. I also don’t want to consume too many calories as without exercise extra calories simply get stored as fat, causing a gain in weight.
Minor considerations include vitamin and mineral intakes as these are all involved in the normal energy metabolism and immune responses, and also the consumption of isoflavones from soya which may reduce the risk of breast cancer, a disease which also runs in the family.
This all sounds very complicated to create a diet that meets all of these needs, so to demonstrate what this looks like, I’ve recorded what I eat on an average day.
6 am: caffeinated coffee and cereal with skimmed milk (to keep fat intake low).
7 am: another coffee with a little skimmed milk in.
9 am: either coffee or tea, again with skimmed milk.
11 am: either coffee or tea, skimmed milk.
12.30 pm: lunchtime! Coffee with skimmed milk, a sandwich on white bread (white flour is fortified with additional nutrients, whereas wholemeal bread has more fibre, but compounds in the fibre reduce the absorption of nutrients), an apple, a handful of grapes, and a low fat yogurt.
2 pm: tea or coffee with skimmed milk, a couple of biscuits.
4 pm: tea or coffee with skimmed milk.
5.30 pm: tea or coffee with skimmed milk.
7 pm: decaffeinated tea with skimmed milk.
9 pm: carbonated water, main meal (example: Stir fty with instant noodles, sauce, poultry, a red onion, pepper, courgette, and frozen sweetcorn. The soy sauce contains isoflavones, and the frozen sweetcorn is richer in nutrients than fresh sweetcorn as nutrients are “locked in” when frozen), dessert (cake, sometimes with ice cream or custard).
10 pm: decaffeinated tea with skimmed milk.
Without access to some of the resources I used on my degree it’s difficult to give a precise calorie count but this comes to between 1,600 and 1,800 kcal per day. The occasional glasses of wine would bump this up to 2,000 kcal. Before you panic and say I eat too little, please remember that I have extremely low levels of activity and therefore simply don’t need the calories!
The management of my diet enables me to maintain relatively steady energy levels throughout the day, which is particularly important at work, and also keeps me from developing the very unpleasant side effects that come from gall bladder removal. At the same time my diet is by no means bland, is interesting and varied, and includes some typically unhealthy foods. Consumption of unhealthy foods in moderation can be part of a healthy diet, and I don’t spend my entire life eating what looks like next doors hedge.
And now that I’ve written this, I’m hungry…
If there had been a vaccination for the strain of meningitis I contracted in 2011, chances are I would never have developed chronic fatigue syndrome. Luckily for you, I fell ill and then decided to whinge about it, calling it entertainment.
Vaccinations are a contentious topic in the court of public opinion all thanks to a scientist who wanted some extra pocket money. The scientific community are very familiar with publication bias; papers that show no correlation or have a null hypothesis are far less likely to be published. After all, medical journals are still a commercial enterprise and need to make money, and no one wants to buy a book where nothing happens. So the scientist forged some data to give the false conclusion that the MMR vaccine resulted in autism, and the world reacted with its usual level-headed reasoning abilities. Even if this were the case, measles, mumps, or rubella have deadly consequences, whereas autism is at least manageable with the right support despite its difficulty.
However, there is a debate surrounding vaccinations that is much closer to home for me, and that is the association between CFS and vaccinations. Vaccinations make people who already have CFS feel horrendous, which I can confirm from personal experience. I get a flu jab every year, and for the next 48 hours or so I will feel like Jupiter’s gravity is emanating from my chest and I also have an elephant sat on me. However, developing the actual flu would be significantly worse, leaving me incapacitated for several weeks at best, or at worst, dead. Therefore I consider the flu jab worth it.
The real question is whether CFS can be triggered following a vaccination. Having scoured the internet the vast majority of scientific evidence that I can access suggests that there is no correlation between the two, and given that CFS is often triggered by a severe viral infection, vaccinations may even offer some protection against CFS. However, there are also abundant case reports of people developing CFS out of the blue, and it has been noted that in these cases, a vaccination has usually been given a short time before.
Given that we know so little about CFS, it’s causes, and it’s biochemistry, there is no definitive way for researchers to establish a connection between vaccinations and CFS. For all we know there could be undiscovered associations with air pollution, food poisoning, or physical injuries. Vaccinations are constantly in the media and the forefront of our minds, making them the first conclusion that is all too easy to jump to. I remain extremely sceptical, however, as having studied the biochemistry of vaccinations as part of my degree, I simply cannot align inoculations and diseases like CFS.
It is also worth mentioning at this point that CFS, while a brutal disease that can even prove fatal, places far less immediate danger on the patient than meningitis, measles, mumps, rubella, poliomyelitis, and even influenza. Sometimes in life we have to balance the risks, and take the lesser of two evils. Take the shot.
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…
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.
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.
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.
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.
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.
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.