When it hasn’t been your day, your week, your month or even your 8 years

Eight years ago today, I suddenly became ill and my life changed forever. (My story and details of my illness are here but this post is not about that).

To mark today, a special video has been made for me. It’s important to me that people know a bit about what I was like before I became ill. Here it is:

I’ll never get back the years of being 18-26 years old. Even if I get better, the world isn’t magically going to rewind itself eight years. This reality still hasn’t sunk in yet; it’s too overwhelming. It’s not only the loss; far worse is what has happened during this time: having to endure the most horrific and acute symptoms every second of every day for eight years, being bed-bound, unable to sit up, unable to talk and unable to wash (again, see here for details).

I still can’t get my head around it. That this has happened to me. It’s weird to think that people think of me as “the ill person”. My mind instantly recoils from that and from being defined by my illness (my motto has become ‘I am not my illness’). To me, it still feels surreal and incomprehensible to be ill. It doesn’t compute. This isn’t how it’s meant to be.

Due to being unable to speak, I communicate using hand gestures and signs with my parents. If I need to convey something more complex, I use my finger to make the shape of letters on the surface of the duvet or on the palm of someone’s hand, and spell out words like that. It’s slow and frustrating. Also, just someone being present in my room is agony for me and I rapidly deteriorate from the exertion, even when they are silent. As a result, the only time when I see anyone is when one of my parents brings in my food/water/empties the commode. I’m just too ill for any more contact than this. I miss my family a lot and I have so many things in my head that I’d like to tell them but am too ill and not able to.

Today, eight years on, even though I cannot speak, I shall not be silent. Today, hear me roar.

I’ll let the eminent Professor Malcolm Hooper set the scene:

There has been a constant drip-feed of denigration of patients with ME and a dismissal of ME as being an organic disease over the last quarter of a century by Professors Simon Wessely, Michael Sharpe and Peter White; they all belong to a group dominated by psychiatrists (named in Hansard in December 1998 as the “Wessely School”).

Most of them work for the medical and permanent health insurance industry. The industry is panicking because it stands to lose millions if it has to pay out for a severe life-long physical illness whose worldwide incidence appears to be escalating out of control.  In 1994, Wessely went on record about the industry’s concerns: “By 1990 insurance and disability claims (for ME) were doubling every year”. There is plentiful written evidence that the Wessely School advise their insurance industry paymasters that ME is a “functional” (ie. non-organic) disorder, which is to the financial advantage of the industry, as functional disorders are excluded from cover.

Wessely and his colleagues are also advisors on ME to Government Departments of State (and Wessely’s wife is Chair of the Royal College of General Practitioners); as a result, people with ME are specifically targeted by the Department for Work and Pensions. […]

The Wessely School’s blatant financial conflict of interest has been roundly condemned by a group of senior parliamentarians including the former Chairman of a House of Commons Science and Technology Select Committee and former Dean of Biology; a member of the Home Affairs Select Committee; a Minister of State for the Environment; a former President of the Royal College of Physicians; the Deputy Speaker of the House of Lords, and a former Health Minister and Honorary Fellow of the Royal College of Physicians.

The Wessely School’s endless assertions that ME does not exist except as an aberrant illness belief by those who are seeking secondary gain (an assertion for which there is not a shred of evidence, […]) has created a climate of disgust for patients with ME, giving rise to such banner headlines as “GPs despise the ME generation” published in the medical trade magazine “GP Medicine”. Since the 1980s, they have made a point of mocking and denigrating sufferers from ME in a way they would not dare do about patients with multiple sclerosis or other neurological disorders and this has been fed to and reflected in the national media.

The Wessely School insist that they can cure ME by “cognitive restructuring” (ie. brain-washing patients into believing that they do not suffer from an organic illness but from wrong illness beliefs) and by forcing them to ignore their symptoms and engage in a programme of incremental exercise(one MP suffering from ME collapsed and died leaving the House of Commons gym, having been told to exercise back to fitness).

[Full article here]

I have seen many, many different doctors in my desperate quest to get better over these last 8 years (we’ve moved house 6 times during this time so I’ve experienced 6 different GP surgeries and 3 different hospitals). Every single one of the doctors has been heavily influenced by this school of thought that Professor Hooper describes. He goes on to say:

ME is a chronic, acquired neuroimmune disorder that affects every bodily system, not only the neurological and immune systems but also the endocrine, cardiovascular and respiratory systems as well as the musculoskeletal and gastrointestinal systems.

There is evidence of widespread, chronic inflammation and of serious problems with the blood vessels in both adults and children.

Cardiac output in ME patients has been shown to barely meet metabolic demand, so it is no wonder that patients feel – and are – extremely ill, with profound incapacity and nausea; many patients cannot stand unsupported and often have difficulty maintaining their balance.

Gene expression research has demonstrated 16 genes as having an expression profile associated with ME. Genes affecting the immune system and the functioning of muscles have been shown to be abnormal. A neuronal component was identified that is associated with hypomyelination of the central nervous system.

Notably, after one of the researchers who discovered these acquired (not inherited) gene abnormalities in ME, Dr Jonathan Kerr, publicly criticised the psychiatrists who control funding for ME research at the Medical Research Council, he lost his tenure and his contract was not renewed.

He was not hounded out of his research by patients with ME, but by those whose mission seemed to be to ensure that his voice was silenced, leaving the way open for more dismissal and disparagement of those battling a devastating disease.

Evidence from autopsies of ME patients is chilling: there is evidence of oedema, inflammation in 75% of the spinal cord, damaged arteries, congestion of the liver and spleen, ischaemia of the bowel, rhabdomyolysis (the breakdown of muscle fibres with release of muscle fibre contents into the circulation, some of which are toxic to the kidney), and degeneration of the brain. The Medical Director of one US support foundation commented: “Every time you look closely at someone with this disease, you see immense suffering.  There appears to be no limit as to the human toll that this disease is capable of exerting on patients”.

[…]

Even though the World Health Organisation has classified ME as a neurological disease since 1969, the Wessely School teaches that it is not a neurological but a psychosocial (behavioural) disorder.

The problem is that although these scientists claim to be studying patients with ME, they are studying people with chronic “fatigue” (ie. chronic tiredness) but then claiming that their results apply to those with ME; this has resulted in a lack of appropriate NHS medical services for those with ME and in incalculable harm and distress to patients and their desperate families.

And there’s the rub. As a result of doctors’ erroneous beliefs about the illness, patients are being harmed. What happened to ‘first, do no harm’? Graded exercise has been proven time and time again to cause deterioration and irreparable damage to M.E. patients and in some cases, even death. Yet if patients refuse this harmful “treatment”, we can potentially be sectioned. This scares me. It’s probably safer just to stay well away from doctors.

The average GP/hospital doctor is completely unaware that graded exercise is harmful for M.E. patients. They are just following NICE guidelines, which have been put in place by the psychiatrists who pull the strings. Countless past, present and future M.E. patients have been/are/will be devastatingly harmed because of a few, very powerful and seemingly untouchable, doctors.

The Wessely School of thought has trickled down through the medical establishment to GP level. As a result, I have been genuinely traumatised by doctors, their attitudes towards me, the way they have treated me, the things they have said to me. It’s the sort of thing you never really believe actually happens…until it happens to you.

To be believed is a powerful thing. Doctors know this. They know exactly what they’re doing when they tell a patient that their illness isn’t real, that it doesn’t exist. 99% of the doctors I have encountered have had this attitude and told me that I’m not ill. As you can imagine, for a seriously ill patient, this is soul-crushing to hear.

They ignore all the proof to the contrary; I have reams of test results that show severe abnormalities in various bodily systems. They dismiss the results of a consultant neurologist who performed many rigorous tests and diagnosed me as having a ‘degenerative neurological disease’ (which means that I don’t have the ‘remitting and relapsing’ type of M.E. but the ‘degenerative’ type; it also explains why my illness is constantly getting worse). They ignore the cardiologist who, after doing tests on my heart, said that I’m lucky to be alive. They ignore all this and don’t listen to what I have to say because I have M.E., which doctors have been taught to believe isn’t real.

The intensity and severity of the symptoms never let up. Most people would be calling 999 all the time if they had my symptoms (and, indeed, I have been to hospital a few times in the past but even my previous GP (before we moved house) agreed that now I’m too ill for hospital). This all means that I have to tough it out at home with very scary and acute symptoms.

I’m the type of person who hates making a fuss about anything. I’m the person who, before I became ill, broke my nose during a hockey match and tried to keep on playing! If anyone could push through illness and keep going through sheer willpower, it would be me. I wish doctors knew this about me. Maybe they’d treat me differently and not ridicule and humiliate me instead. Maybe they wouldn’t show such cruelty and open hostility to me. Maybe.

The recent slew of venomous media articles towards people with M.E. has not helped in the slightest. No matter how hard you try to not let it get to you, it does make your heart sink. You know that lots of people will be reading the articles, maybe your friends and your doctors, and you fear that they will believe what is written and will think those things about you. With inflammatory and ridiculous headlines like ‘It is safer to insult the prophet Mohammed than contradict the armed wing of the M.E. brigade’, you become scared to speak up in case you are branded as one of the so-called “M.E. militia”. Whatever you say, you can’t win. No matter how calmly, politely and non-aggressively you respond, no matter how much evidence you provide, no matter how many credible sources you point to, you will be branded as a crazy and dismissed as just one of the “M.E. brigade”.

These media articles argue that when researchers, doctors and patients state that M.E. is an organic, physical illness and not a psychosomatic disorder, we are somehow denigrating mental illness/psychiatric patients. We are not. Saying that M.E. is an organic, physical illness is simply a fact, the truth. We are in no way denigrating mental illness by saying this. Mental illness is very real and serious; it should in no way be trivialised or stigmatised. The problem comes when a physical illness like M.E. is treated as a mental illness; this is because the wrong treatment can be disastrous for patients. For example, exercise may be a beneficial treatment for depression but if it’s prescribed for an M.E. patient, it is potentially dangerous and harmful. That’s why the distinction and classification of M.E. is important; it determines what treatment you receive.

It’s very difficult to get any healthy person to care about any of this because it doesn’t affect them. I need you to care though, to care enough to fight against these injustices on our behalf, to do what we are to ill to do, to say what we are too ill to say. Nothing will change though until doctors are educated on a massive scale. A good place to start would be the International Consensus Criteria for M.E. The government need to put money into biomedical M.E. research instead of wasting (taxpayers’) money on already disproven psychosomatic “research” into M.E.

I don’t want to be here in a year’s time repeating exactly the same things. There are M.E. patients who have been campaigning for decades and they say that nothing has changed in 20 years; they are still treated with the same derision and ignorance now as they were back then. The situation needs to change right now. If you, dear reader, are looking for something worthwhile to dedicate your life to, this could well be it. Patients are suffering and dying so don’t tell me to be patient and that things will change for the better ‘in time’ or ‘soon’. Nothing will change unless someone does something. Now is the time to act. If you have any power or influence at all, please use it. Help us. Fight injustice. Be a hero.

Today marks the day eight years ago when my life changed. I have spent several months writing this post, a sentence or two per day, by wiggling my thumb to jab out letters on my iPod Touch and it has very nearly killed me. It has been worth it though because today, I refuse to let doctors make me feel so small inside. Today, I refuse to let them strike the type of terror into my heart that makes me cower at the very word ‘doctor’. Today, through this, I have stood up to them. Today is the day their power dies. Today, hear me roar.