Attack of the Brain Fog.

Let’s be honest, we’ve all had plenty of cringe-inducing moments that keep us awake at night when you most need the sleep. Much as I would like to say otherwise I am no different in this respect. However where I differ from the norm is that I can blame these horrendous instances on my disability, or more specifically the so-called “brain fog” that plagues people with various chronic illnesses.

As a member of a small team in the workplace I grew accustomed to the little quirks and idiosyncrasies that would make us the perfect subject for a sitcom, were it not for the fact that this idea has been flogged one too many times. Organising a table tennis tournament for one lunch break has been one of my least serious assignments, but being asked to arrange a “cheese day” takes the biscuit (because nothing goes better with cheese than a nice selection of savoury biscuits). For cheese day we are all required to fetch different cheeses to work, and during the team meeting we’ll all enjoy samples of them all, which for an office is an undeniably weird thing to see displayed on the calendar.

Imagine my embarrassment then, when I realise that I had not sent the email invitation to my colleague, but instead had sent it to someone else of the same name in my address book. Fortunately he had an excellent sense of humour about it and is now considering implementing a cheese day in his own office. So if cheese day goes viral, you know who to blame; parents who give their children common names. Like Emma (thanks mum and dad).

I am particularly afflicted with brain fog first thing in a morning, which makes taking my morning medication rather interesting. The most common problem arises with a tablet I take both in the morning and at night in different doses. If I get them the wrong way around, taking the larger dose in the morning rather than the evening, I will spend the rest of the day in a drowsy stupor. This having occurred on a work morning means that technically I have been to work while high and got away with it, a claim that some would use the term “badass” to describe.

Perhaps more worrying was the occasion when I tried to inhale my nasal spray through my mouth, which was a somewhat interesting experience.

While living in halls of residence at university the fire alarm being set off at unthinkable hours by drunk people trying to use toasters was a very regular occurrence. When the fire alarm exploded into life at 2 am in my first week away from my parents I wondered why my dad hadn’t switched the burglar alarm off, which would occasionally go off at night when a spider crawled across the sensor (and never when someone was trying to break in). This is despite the fact that the fire alarm sounded completely different, was much louder, and included a red flashing light on the ceiling for those who couldn’t hear the alarm. Needless to say I was one of the last to arrive at the convening point as we were evacuated.

There is also the story of how this photo came to exist:

Brainfrog.jpg

Discussing brain fog with a few online friends an accidental misreading lead to brain fog being substituted with brain frog in all of our messages. Given that for some strange reason I have a plushie toy frog (I still have the inventively named Croaky) it didn’t take long before dad took this photo for me. Selfies were harder back then.

By the way, if this becomes a meme the extra publicity is much appreciated.

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.

The Many Theories of M.E.

Despite the recent surge of developments in medical research surrounding the condition, the internet is rife with a myriad of pseudo-scientific theories from non-medical experts describing what causes the condition, how it can be prevented, and how it can be cured. These theories are often demeaning to sufferers of M.E (a.k.a. CFS), claiming that we simply don’t look after our bodies or that it is nothing but a cry for attention. They also tend to support the claim that M.E is not a real disease, reinforcing the negative stigma surrounding what I can assure you is a very real illness.

There is, however, one redeeming feature of these theories; they can be down-right hilarious.

One I hear a lot from people who know that I have a first class honours degree in nutrition is that my illness is the result of multiple nutrient deficiencies, and could be cured by using over-the-counter nutrient supplements. Considering my knowledge of the subject, my ability to tailor my diet to my needs, and to recognise the symptoms of nutrient deficiencies in myself and others, this theory denies all logic. Similarly, if I needed nutrient supplements, the doctor would prescribe them. The only noticeable effects of the store-bought nutrient supplements in the absence of a deficiency is the excess nutrients excreted (meaning the expense quite literally gets flushed down the toilet) and sometimes the onset of nutrient-overdose. Which can have quite serious and permanent effects, such as death.

This is far from the only ridiculous theory I hear. One commonly encountered by M.E sufferers across the world is the idea that we simply need to exercise more. Our “laziness” has led to us being so unfit that this becomes symptomatic. This of course does not apply to all the other unfit people on the planet who suffer no symptoms at all when resting, or walking to the bathroom. I have been told time and time again that my symptoms result from muscle wastage, despite the fact that while I do have much weaker muscle tone than average, you can still see some muscle definition across my whole body. I am told to push through the “pain barrier” but I can assure you that the pain barrier does not exist for M.E sufferers, and the pain simply gets worse the longer you remain active for.

I have also been told to get pregnant. The logic behind this one is as follows; after undergoing nine months of growing a miniature parasite inside your body, which takes a great deal of energy, and then squeezing the thing out like trying skinny jeans on while being in denial about your clothes size (we’ve all been there), the maternal instinct of holding the baby would override the tiredness signals from my brain. Now I don’t know about you but my personal encounters with new parents show a distinct trend of utter exhaustion from the lack of sleep and constant nappy changing, plus the energy requirements for mothers who choose to breastfeed are substantial. This is all without mentioning the fact that attempting to cure a disease is entirely the wrong reason to have a baby (I know a lot of women suffering from endometriosis hear the “just get pregnant” theory a lot too).

The most ridiculous theory of them all, however, is that I am possessed by a demon and need to be exorcised. I doubt this one needs to be explained and I have nothing more to say about this one other than “what the F is wrong with some people?”.

So please, medical research is a serious career path and these people know what they’re talking about. Listen to them!

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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It’s M.E Awareness Week 2018!

You’ve seen the first blog post of M.E Awareness Week yesterday, about how bad M.E can get. You’ll get to see a more humourous blog post next Sunday, all about the ridiculous theories I have encountered concerning the cause and treatment of M.E.

What else am I doing for M.E Awareness Week 2018?

Donate

That’s 25% of ALL donations, not just profit. I should also clarify that I will be donating 25% of the money donated BEFORE PayPal take their cut. If you donate £10, $2.50 goes to the M.E Assocation. Click on the donate tab in the menu to proceed!

Find out more about the M.E Association here: http://www.meassociation.org.uk/

Q&A

You can send me your questions via social media, through social media private messaging services, or by going to the contact tab in the menu above. I am willing to answer anything about living with M.E, so submit your questions! The video will be posted on here on Saturday!

GETting Nowhere.

Chronic Fatigue Syndrome (CFS) is one of those strange conditions that has no real treatment protocols assigned to the disease, mainly because so little is known about it, but also because the symptoms are so variable that one treatment won’t work for everyone. Aside from various painkillers, anti-sickness medicines, and sometimes antidepressants, most treatments for CFS aren’t actual medicines. One of these other treatments is Graded Exercise Therapy (GET).

GET is a process where a low level of exercise is performed every day and the level of exercise increases at regular intervals, until the patient is able to undertake normal everyday exercise. This is particularly useful for injuries such as damaged bones, muscles, or tendons and ligaments, allowing the tissue to gradually repair itself and return to its former healthy state. However I have yet to figure out how GET helps CFS sufferers, which is now believed to be an autoimmune neurological disease of the brain and spine. All the same countless CFS sufferers are subjected to GET, myself included.

I started GET in October 2011; at this point the CFS wasn’t particularly bad. I was able to walk, albeit slowly, around most places, and if I rested regularly I was able to live a relatively normal life. The physiotherapist at the local hospital was bubbly and friendly and we had an in depth discussion about my current level of activity, and which symptoms impacted me the most. She then observed me doing a few basic exercises included step-ups and star jumps, and counted how many of each I could perform before reporting a flare up of my symptoms. I was then assigned a certain number of steps, step-ups, and star jumps to do daily, increasing each a little every week. This process ignored one vital factor though; what I could do as a one-off is not the same as what I could manage on a daily basis.

I started the exercises the following day and for the first few days it went swimmingly. The problems started when I had to increase the exercise; my legs burned with every additional step-up and the star jumps repeatedly jarred my back, which was one of my most painful symptoms. We contacted the physiotherapist; I was told to work through the pain barrier. For some strange reason I thought the professionally trained and experienced physiotherapist would know what she was doing and so I stuck to her advice. The pains got worse with each session and I needed more resting periods. The fatigue grew until it felt as though I was wading through treacle with a lead weight tied to my neck. Even the few steps I had to walk became pain-ridden and exhausting. I carried on regardless, sure that one day I would pass through the pain barrier as I had been promised.

A few months later I returned to the physiotherapist far weaker than I had been before. Apparently I just wasn’t trying hard enough. I was advised to buy my own wheelchair but not to become dependent on it, using it minimally. This was the point at which I became skeptical; I hadn’t needed a wheelchair before and now I did, but I was told that the GET wasn’t responsible. However, I was desperate for something to make me better instead of worse and since this appeared to be my only chance, I continued.

A matter of weeks later I had to stop. Just rolling out of bed was an exercise in itself, and the stairs were more like an Olympic sport than a mode of getting around. I needed the wheelchair more and more and more. Despite stopping the GET I continued to get worse for about a year; once on the downward spiral, there was nothing to stop myself from falling even further. I ended up where I am today; able to walk around a small apartment for the most part, but needing my wheelchair for everything else.

At first I blamed myself for what had happened. Maybe if I’d tried harder the outcome would have been different. Maybe I was just weak and pathetic. However, when I look back on this, I consider it to be no coincidence that everything went to pieces when I started GET. It might not be entirely responsible for the outcome, but it was the trigger. My naivety towards some medical professional’s attitudes to CFS didn’t help, nor did my inability to respond to the symptoms quickly enough, but I consider myself to be relatively free of blame. GET certainly has its place in modern medicine, but not to treat CFS, which is just too complex for so simple a treatment.