A Broken Record.

“I don’t know how you cope.”

“I couldn’t do what you do.”

“How do you manage? It must be so difficult.”

Like a broken record I hear these sentiments on an almost daily basis, and while they are a compliment of sorts, what strikes me most about these statements is the apparent lack of faith the person saying them has in themselves. This is by no means a criticism, as I was guilty of doing this myself prior to becoming disabled, although it can get a little awkward when a total stranger approaches me to express this sentiment in the middle of the street. Contrary to popular opinion, disabled people still have places to be.

If someone had told me that I would get meningitis, develop CFS, become increasingly dependent on a wheelchair, become very depressed, have to fight for my education, and then to have gall stones and surgery during the final year of university, I would have panicked. I would not have been able to comprehend going through all of that and still managing to have some semblance of a life, and what’s more, actually be happy about it. Yet here I am, spread-eagle on the sofa eating chocolate chip cookies, writing about it. I’m not exaggerating.

Cookie nom

It is our resilience and adaptability that has allowed humans to become the dominant species on Earth, and it is those same traits that have allowed people with chronic illnesses and disabilities to live fulfilling lives. It is pretty difficult at times, I won’t deny, but I’m not special for being able to withstand it. Most people would be able to withstand everything I have dealt with and more besides, especially if they were supported by a few friends and family members like I was.

It isn’t just illness either. People have the same reaction to all sorts of difficult scenarios; miscarriages, being a single parent, going back into education while raising a family, surviving a string of bad luck, the death of close ones. They express how they couldn’t cope. While these situations are troubling and difficult, I have watched those around me go through trying times and even if they need some help to do so, almost without fail they cope. What first-hand experience has taught me is that humans are essentially the mammalian equivalent of cockroaches; stubborn.

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.

Netflix-Logo

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.

TV

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.

Social Justice on Wheels.

As someone who publishes my writing on the internet I have been exposed to a few trolls here and there. In fact, many would say that your first troll is a rite of passage for all internet writers in the 21st century. While I usually ignore the trolls I do sometimes like to read their comments, as very occasionally hidden behind all the bravado is a constructive criticism that I can use to improve my work.

Of all the comments that I find, by far the most prominent insult is the label “SJW” or “social justice warrior” if they can be bothered to type 3 whole words in response to a mere 2,000. SJW is a term predominantly used by those of a more conservative nature, intended as a demeaning description of someone who fights for equality and social justice. The associated stigma is someone who is over-sensitive and whingey, and will be insulted at the mildest political incorrectness.

Everyone knows that to be an effective troll you have to insult the person a petty comment is aimed at. This leaves the trolls who label me as an SJW with a big problem; I am not insulted by the term. I am someone who believes in equality and will make their voice heard in order to achieve social justice, making me a pretty damn good example of an SJW. Even worse is the fact that I am proud of this and make no attempt to hide it. Admittedly I try not to whine so much as provide insightful social commentary, but given that people who use SJW as an insult sit whining about SJWs, I think that point can be neglected altogether.

It is, of course, rather ironic that if I did take offence to being dubbed an SJW, I would be playing right into their hands as the over-sensitive type. After all, it’s not as if they’ve made negative remarks about how I look or where I live, just simply the political beliefs that practically my entire life revolves around.

At the end of the day being an SJW is nothing to be ashamed of. Most people want a just and fair world regardless of their personal beliefs, but their idea of what actually constitutes as justice differs. Some would argue that it was justice to call me a whingey liberal, and others would argue that trolling the use of the term SJW as an insult is justice for trolling someone in the first place. Whatever the case may be, if you want to insult me, calling me an SJW simply isn’t going to work.

Disability Doesn’t Mean I Can’t.

On a recent visit to the GP I discovered that the lift into the surgery now needs someone to close the door behind me once I’m in the lift. This was a rather unfortunate discovery as I was visiting the doctor alone, as I usually do. After waiting in the lobby area for a few minutes anxiously watching the clock ticking ever closer towards my appointment, a receptionist appeared at the top of the stairs and came to my rescue. While I did say thank you for the help I received, I also challenged her about this turn of events. Her response was that I should have someone with me next time or leave enough time for someone to pass by; the idea that I might want to be independent like every other adult using that surgery was incomprehensible.

This is not an isolated case by any measure; many places have small, rickety platform lifts that require a specific key held by only one member of staff that you can’t contact because you’re at the bottom of the steps while they’re in an office upstairs. Similarly whenever the accessible entrance to work is either broken or locked I have to wait for the receptionist behind the desk to finish gossiping with her colleague, search for a key they never have to hand, and fold back the revolving door allowing me to enter my own workplace. This process then has to be repeated on the way out; I cannot enter and leave the building at my leisure as literally every other person can. Given that the revolving door is always unlocked with a steady stream of people entering and exiting the building, I asked that it be left folded back when the accessible entrance wasn’t in use. Apparently, this was a security risk despite the fact that this would save everyone a lot of time and effort. I was also told that being the only wheelchair user in the building essentially made folding back the door an inconvenience.

It seems like wherever I go the idea that I want to be independent is shocking and impossible. While I always appreciate people asking me if I need help, I often encounter people who just barge in to start helping without asking first. On one occasion this even lead to a scalding hot coffee getting poured directly into my lap which was incredibly painful and somehow it was my fault for trying to be independent. In other cases I have been asked if I need help and when I have politely declined, the “help” has been provided anyway. What I want or need doesn’t matter; if someone judges that I need help they’re opinion overrides my own. In addition I have received torrents of verbal abuse for trying to be independent, being called arrogant, ungrateful, and much more besides.

This isn’t a new problem. For the past few millennia women have had to fight relentlessly to be permitted to do things independently of men, and now disabled people face exactly the same problem. Sometimes I don’t know if my desire to be independent is shocking because I am a woman, use a wheelchair, or a combination of the two.

Independence is not something that should only be encouraged in able-bodied men. The desire to be independent is not a sin; it should be encouraged. Allow me to fail. Allow me to get hurt. Allow me to get up (figuratively at least) and do it all over again until I get it right. Look at the top of this page. Look at my arm. “Disability doesn’t mean I can’t”.

Sweet, Sweet Irony.

One consistent occurrence that continues to amuse me on a regular basis is the way different types of people react to the wheelchair, usually spitting in the face of stereotypes and then allowing me to run said stereotypes over. I can think of no better example of this than a situation I encountered recently as I returned home from a night out.

A couple of streets away from my flat there is a new block of posh flats and offices being built adjoining one of the big shopping centres in Leeds, and the scale of the job means that the pavement has been completely blocked off. All pedestrians must use a narrow section of the road cordoned off for them to walk through safely. At points this area is narrow enough for only single file pedestrians going in each direction so as not to impede the traffic on the main road, and occasionally this can cause difficulties for the wheelchair.

It was a Saturday night and all the clubs and pubs were overflowing and spilling out onto the pavement. Among these was a group of tipsy students, all male, who were staggering through the improvised path towards us. I was more than prepared to pull over to one side at a wider section in order to let them past, as their movements indicated that perhaps they weren’t fully in control of their actions. To my surprise they stopped and stood to one side to allow me and Jarred past. As I went by them I thanked them, which was greeted by a series of cheery, if slightly slurred, greetings.

Jarred and I made it round the path and back onto the pavement without too much trouble, and we carried on towards our block of flats which was visible from the road. Ahead of us I spotted a large group of charity workers ambling slowly along the pavement, pulling large carts behind them full of meals for the homeless. We came to a crossing where they blocked the lowered kerb that allows me to cross the street safely. By the time they had moved more traffic was pulling onto the street, and I had to wait before I could cross.

We crossed the road, reaching a narrow pavement littered with lampposts and traffic lights. Here the group of charity workers had stopped again, despite the fact that around the corner, mere metres away, was a wide expanse of pavement perfect for stopping on. They had blocked the entire pavement, not just for my wheelchair, but for all pedestrians who were having to step down onto the road to get around them. As I couldn’t step off the pavement I had to persuade them to let me past.

It took two attempts for Jarred to convince them to move the first of the carts so that I could get round; they completely ignored me altogether. The second cart proved just as difficult and the final cart refused to move at all. As I squeezed past my wheels knocked the cart, for which I was tutted at (coincidentally the only interaction I received with them). The group apologised half-heartedly to Jarred, clearly believing us to be rude, thinking that their undeniably kind actions towards the homeless alleviated them of all other responsibilities.

These two encounters had happened maybe 100 metres apart, if that. Yet it was the drunken lads who treated me as their equal, with kindness and generosity, while the holier-than-thou charity workers treated me as if I was dirt on the bottom of their shoes. The irony of this situation was not lost on me; the people who are poorly misrepresented in the media, and who are blamed for all the troubles of society, were the ones to do the responsible thing. The people who will be hailed as heroes for their acts of incredible kindness and dedication didn’t care for anything but the fact that they were seen to be helping the homeless while I had selfishly been eating in a pub on a Saturday night.

This is yet more evidence in support of my prevailing theory; that kindness often comes from those you least expect it from.

M.E Awareness Week Question and Answer Vlog.

Transcript:

Hi guys,

It’s the big day in M.E Awareness Week and, as promised, I am going to publish a video of me answering your questions about living with the disease. So without further ado; we have a question from Bre-Am (I apologise so badly if I’ve pronounced that wrong).

Bre-Am has asked me if I appreciate it when people offer me help or if they’re only doing it to show off to others.

I think if someone sees me struggling, I can’t open a door, I can’t reach something, or they just think I might need some help, and they come and ask, it’s always appreciated. Now, I might say to them “yes, actually, I would appreciate some help,” at this point, or I might say to them “no, thank you, I’m OK.”

It’s OK to say no, and it’s OK to want to be independent. If you ask someone disabled if they want help and they say no, that is OK. Just say “OK, no worries, I’m here if you need anything,” and walk away; there’s no shame in that.

Obviously asking for help I am never going to take offence to; someone’s trying to be nice, and if I say I want help and they do help, then that’s brilliant. The important thing is to always ask first.

Now, my personal experience is that I’ve not had many people do this to show off to others. Very occasionally you’ll get a charity representative in a middle of a shopping centre who might try and be seen to be inclusive with the disabled person, to be seen as a better charity representative.

Other than that, very few people do it to show off; the biggest problem is actually someone asking if I need help and continuing even after saying no, or just barging in without asking in the first place. It’s my personal space, it’s my equipment; the wheelchair is an extension of my body; do not push yourselves on me unless I ask for help.

But, you know, the offer is always appreciated.

And then we have a question from Sophie, who has been a friend for a long time after we met on forum for people with CFS. She has asked me how my experience of CFS compares to that of others.

I think there are some central aspects to this disease which, like every person with this disease on the planet, I have experienced. That is things like the fatigue, pain, headaches, dizziness, itchy eyes, and poor short term memory and concentration. I think also that the general disbelief in the condition that I have encountered is pretty universal.

But, my experience does differ in things like I went to a GP who believed in CFS and I was diagnosed within 12 months of becoming ill, and I got access to painkillers, physiotherapy, and counselling. That is really, really good; some doctors don’t believe in the condition and refuse to have anything to do with it and they won’t diagnose or treat it at all, and people end up going from GP to GP. So I was very lucky in that respect.

I think CFS varies in severity; some people are house bound or bed bound, and for them the wheelchair to go outside in would be useless. They don’t have the energy to even do that. For me, the powered wheelchair has enabled me to be independent, get an education, get a job, and live a relatively normal life, and again I’m very lucky in that respect.

And I think the other big thing that separates people with this illness is actually experiences with social services, and this particularly applies to children.

When I was a teenager someone anonymously reported my parents to social services, claiming that they were using me as a sort of disability benefit fraud, that they were forcing me to be in a wheelchair for the attention and financial support. Social services barely looked into it before dropping the case; they said it was ridiculous, but that mark is still against my parents name and they’ve never been allowed to defend themselves. That is still quite a sore point for us because on their record there is a complaint against my parents that will always be there, however wrong and invalid that complaint is.

Some people never experience that, and they never experience how devastating and how heart-breaking that is; to be the child in that situation, to be the one who is getting their parents into trouble for being sick. It’s awful.

But, again, I’m quite lucky. There are people who get separated from their families and put into institutions, and other cases that go to court; these are not rare, I know people who have been through this.

If you see the Millions Missing movement on social media, particularly Twitter, that’s what it’s all about. It’s talking about the people who get removed from their families because people don’t believe in their illness and think that their parents are psychologically abusing them. So there’s a big movement at the minute to get CFS recognised as an actual illness, and to stop social services marching in and pulling families apart, which only tends to make the illness worse, and it’s sheer madness.

Now that’s it for all the questions I’ve had about living with CFS, and I’m going to take it that my blog is so good and so well-explained, that no one has any more questions about the disease. I hope these answers have been good, but if you have any more questions feel free to ask; I’m happy to message or make another video.

So, please, please, please keep a lookout for tomorrow’s blog post, which is all about the ridiculous theories people have about M.E, what causes it, and how to treat it. It is hilarious.

Also, don’t forget, do donate. 25% of this week’s donations are going to the M.E Association, so not only do you support my writing career, but also a charity who support people like me.

So please, please, please; donate, like, subscribe.

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