I’ve been meaning to write this blog for a while but it has taken a while. Thank you to everyone who is still reading and following my blog, it means a lot to me. Nowadays it is getting harder to blog, but I feel like even if I can only do something small, I want to raise more awareness of this disease, in particular those severely affected and especially in the aftermath of the recent media coverage of the FITNET-NHS trial. I also want to talk about losing the ability to communicate as I once did, and despite everything that is happening to me, trying to pick myself up.
In recent months, one of the worst things that this illness has taken away from me is the ability to communicate by talking, as I once did. Last week, my mum sat on the end of my bed and had a conversation with me, but I could not answer any questions, I could only nod. I could barely take in what she was telling me, because I started feeling incredibly unwell and needed to lay in silence. My boyfriend, after work, came and gave me a hug and asked me how I was. “I’m ok”, was all I could get out, despite my expression saying I wasn’t ok. When he kept asking me what was wrong, I couldn’t answer, I couldn’t even think of the words, and I felt like my senses were overload – in the end the next day I had to text him to explain what was happening to me.
I can type on my phone and read (with a lot of breaks), although they too take a lot out of me, but talking now puts me into a state of debilitation that frightens me. From what I’ve seen, this is a similar story for quite a few people who have M.E: that talking takes far more exertion than typing; the more ill they are, the less they can talk. Up until recently, I was speaking to a counsellor (not an NHS CBT therapist, but a private counsellor because I need someone to speak to about everything that’s happened to me). I was speaking to her on the phone for 15 minutes, lying in my bed. But even that became impossible, because I was having such bad relapses and started becoming very disorientated and confused within the sessions. During my last conversation, my counsellor, who has been practising for many years and has a lot of experience in dealing with difficult situations, including others with M.E, was in shock. She asked me “is this how bad M.E can get? Is this what normally happens? That even moving from your bed is too much, and lying flat on your bed, just talking, can make you so sick?” I told her, yes, I am a severe M.E sufferer and there are thousands in this country like me, but there are those even sicker than me.
I would never have thought that at 26, I would need to have bed baths or use baby wipes because sitting in the bathtub makes me so ill, or would need to be dressed by carers, or be fed while lying in bed because the exertion of a conversation has made me too ill.
But, I am still able to get myself a few metres to the toilet, even if it hurts me a lot, and for this I am thankful. Because that means I don’t need to use a commode. Because there doesn’t even seem to be a lower limit to how bad M.E can go, while still being alive. There are those within the M.E community, like Whitney Dafoe, the son of geneticist Ron Davis (one of the best scientists of our time, forefather of the Human Genome Project and now Professor at Stanford University of Medicine), who became progressively worse after contracting a series of viruses including glandular fever. In this heartbreaking blog post 3 years ago, which I think is so important to read, Whitney spoke of the severely affected patients who suffer from guilt and shame heaped on them, who suffer from post exertional syptoms that are so hard to put into words, and who “hover in an in-between state where one experiences a ‘living death’”. At the time, he was already severely ill, in a similar state to myself: bedridden, couldn’t walk very much or interact much and yet still wanted to raise awareness of this illness. In the years since then, his condition has steadily worsened: he now lies in the dark, cannot move, eat or talk.
Although Whitney is so horrifyingly ill, his father is one of those leading the research into this illness – which gives sufferers so much hope. This is something Ron Davis wrote last year:
“My son Whitney woke me this morning to inform me that he is dying. Whitney has severe chronic fatigue syndrome (CFS).
He did not say he is dying – he cannot speak.
He did not write he is dying – he cannot write.
He used scrabble tiles to spell out his message. I did not answer him – he cannot tolerate anyone speaking to him.
The note said he is willing to go to the hospital even though the experience will be unbearable – hospitals are totally naïve on how to treat CFS patients because of years of denying the existence of the disease. We need to surgically insert a feeding-tube into his small intestine because he cannot eat.
This tells me I am running out of time. I must find out soon what is causing the disease and how to cure it. I know I’m not the only one working on this disease, but there are too few researchers, too few medical specialists, too little research funds and too many patients. I know I or someone can figure this out. It requires a lot of new data and a lot of thinking. For the past 2 decades, I have been involved in innovation of medical technology and automation to generate massive amounts of Human data (BIG DATA) but how do we speed up the thinking?
I spend more than half my time thinking about this disease, comparing the limited data on CFS and many other diseases. I try to track back the symptoms to a possible molecular mechanism. The brain and gut problems could be caused by dysfunctional mitochondria (the organelle for energy generation in every cell) but what is the molecular reason for the dysfunction. Given there are over 1600 genes involved in mitochondria, this is a daunting task. I work on this 7 days a week and will continue to do so until we have an answer, but we need your help to fund it for the millions suffering.”
This breaks my heart. Because for decades, patients have been telling doctors that it is not in their heads, that they are really sick. A great deal of damage has been done, and is continuing to be done. For decades patients have been trying to get our voices heard and tell their doctors, the media, whoever can, that they have been pushed near to death with the “treatment” that they are given. If CBT and Graded exercise was a pill, and we were able to report the harms associated with it, it would have been withdrawn within a day. The biggest surveys ever done have found 74% of those who were given these “treatments”, worsened considerably. If the “clinical trials”on M.E with exercise and talking therapy, were instead done on other diseases – where people could get worse during the trial and still be classified as “recovered” from a lifelong disease, where definitions of “recovery” are made up and changed by researchers halfway through the trial, there would have been an outcry. It breaks my heart because the discrepancy between actual suffering and public perception and funding is vast. When a huge study was done in 1996 by Harvard medical schools researchers, and then again in other countries in 2011 and 2015, those with M.E (both milder and severe) have the lowest quality of life score out of every illness and disease surveyed. The study concludes, ME/CFS patients scored “significantly lower than patients in all the disease comparison groups…. on virtually all the scales”. I say this, not because I want to compare to other devastating illnesses but to give people an understanding into how dire the situation is with regards to funding and public perception – that a condition this debilitating, that 17 million people worldwide suffer from (of which at least 25% are severely affected) and which can strike anyone, can still have this medical and public stigma attached to it. When I told my counsellor this, and I think even for someone who has some experience, it really was an eye opener for her.
To my friends, I say that I’m exhausted. Sometimes I say I’m tired. But truthfully; I can’t remember the last time I was just exhausted or tired. I have described it before as a body shut down, which I think is most accurate. A huge collection of symptoms that are always there in some form but get a lot worse with exertion. When I do too much (and right now that means having a conversation, sometimes even just a couple of minutes), it means I become very disorientated and confused. Typing and reading requires far less concentration and thus less exertion for me, but the effort it takes to sustain a conversation, to listen, to comprehend and then get the words out to talk, means that I just have to stop. I start feeling shaky, shivery, dizzy and sick. I cannot form the words and struggle to get the words out, I’m not even sure where the words are. All I can do is close my eyes and lie still, for minutes, for hours. I have said before that in those moments I feel like I am dying. I feel like the different parts of my brain are not working together or even at all. My lung capacity has also decreased considerably with my relapse (when checked recently), which makes it harder to talk. Not being able to talk properly and communicate is so painful. It frightens me that I feel so disorientated. Over the past month I wanted to understand why this was happening to me – I feel like the more I know, the calmer I feel about what is happening to me. So I did what I do best… I did some research. Luckily there are some wonderful researchers and bloggers who put findings into easy to read layouts.
And it turns out, there is something (actually, quite a lot) that goes wrong in the brains of M.E sufferers. There have been many research papers published worldwide about this illness, from Stanford, University of California, Cornell, as well as other research institutes around the world (which for some reason are irrelevant to U.K. medical bodies, who prefer to take the word of a few psychiatrists in this country who have built their careers on perpetuating the “illness beliefs” theory, one of which is now president of the royal college of psychiatrists. This is very much a political issue, even more than a scientific issue, and when I feel up to it I hope to write an article on the politics surrounding M.E and the suffering that has come from it) and every single one of these biomedical papers have found physical abnormalities – in the brain and autonomic nervous system, immune system and antibodies, muscles and the mitochondria within our cells. In the spinal fluid of some M.E patients (which bathes our brains) there are elevated protein and white blood cell levels, which is not seen in those without M.E – this is a similarity that we also share with patients of multiple sclerosis. The connectivity between different parts of the brain is impaired in those with M.E, which has been demonstrated by MRI, PET and EEG scans. The speed at which the brain processes information is impaired, and after exertion, memory recall too is significantly impaired. There is reduced blood flow to the brain due to nervous system dysfunction, as well as reduced levels of a substance in the brain called gluthianone. Then there’s faulty gene expression in M.E patients, and antibodies produced which are attacking our own body and nervous system. Problems with genes not being expressed properly, our “natural killer” cells and cytokines. Then, within cells themselves – mitochondrial shut down. In trials done at the University of Bergen in Norway, a large number of M.E patients improved significantly when given an intravenous chemotherapy drug which knocks out immune B cells; this drug is usually used to treat autoimmune diseases and lymphoma (phase III trials are now underway for this drug in M.E in Norway). The problem research has had, is in putting all this together, and figuring out what lies at the root of this hugely complex disease. When I read this, I often wonder, how can so many things possibly go wrong with a body – how could glandular fever have triggered this many things?
My counsellor said she actually found it remarkable that I was able to keep hope and get through the days and cope the way I had. She even asked me if I was unique within the M.E community, and wondered whether the majority fell into despair, because I think she couldn’t even comprehend how people could live for so long this way, suffering from so many symptoms day in day out, who had so much taken away from them, and yet still be neglected and abused by the medical community (told to doubt themselves, not believe in their symptoms and believe it is a product of their false beliefs, made to do exercise as a treatment even if it makes them sicker and given no medical help) in such a horrific way, and still find something to hope for. But I told her no, I’m not special within the M.E community. Before I came to meet people within the M.E community, I don’t think I ever really realised the strength that humans can have. Every time I hear a story, I am moved to tears by the resilience and hope that I find in those suffering this illness, the amazing ways they have of coping. Those who cannot leave their bed but paint the most beautiful paintings. Those who live in their bedrooms in darkness for months or years but still manage to smile at the end of it all. Those who find solace in a book. Those who hardly get to leave the house, but still find hope in the smallest of things. Groups set up by severe M.E sufferers to send cards to others who are ill. The charities, run by those with M.E and their carers, and activists, who speak to and try to change the medical establishment on behalf of those like me who are too sick to do it.
But for every one of those people, who find hope and strength somehow, someway, there are also many for whom the pain heaped on them is unbearable. Suicide rates among those with M.E are six times higher than that of the normal population. I can understand how it is to feel so low and how easy it is to fall into despair. I am lucky that I have people who love me and care for me and believe me, to keep me going and give me hope – many people do not. And because I have people who love me and believe me, I am able to try to find the silver linings and find happiness in the things I can still do a little – type, read, watch TV shows, crafts sometimes. Also because there is no clear pattern of remission of relapse to this illness, there is always the chance I could get better, like I did before. Every day I hold onto that hope. But even despite having a lot of hope, I am desperately sad. I wish this hadn’t happened to me, even though I know I have to look forward. I feel so broken when I have to say goodbye to a friend too soon, even when my biggest wish would be for them to stay longer, and worrying whether they would feel like they do not want to come and see me anymore because all I can do is lie down. It hurts me a lot to be cut off from my once large group of friends, and when I had to recently cancel a birthday party that I was looking forward to so much. I have, before this particular post, tried to keep my blog as positive as possible, but I realised that in doing so, I am not speaking about the reality that really is my life. I am in a lot of pain every single day, and I feel trapped in a body that doesn’t work properly – in my mind I am outside, and in my mind I picture myself wearing my woolly hat and walking on the pavement, holding Martyn’s hand, but in my body I am trapped, watching summer pass into winter from behind glass windows. Regardless, at the end of it all, I pick myself back up again because it is the only way to go on.
It is my sincere wish for everyone who reads my blog, if you ever meet or even passes by someone who has M.E – believe them. Because by doing that, you have already done an amazing thing. Believe them when they tell you how ill they are. Listen to them. If you read an article about M.E/CFS in the press or see something on T.V, remember that behind it there is a relentless media campaign being run by the psychiatric researchers who dominate the field here (for example Esther Crawley and her recent FITNET trial of a CBT “cure” for children with M.E, where children are cured by “thinking differently about the disease” which was covered extensively this month by the bbc and every single media outlet), and that this affects us so much – that every time this happens, those in the M.E community in this country and even worldwide lose even the small bit of hope that they even had. Because they know it will add to the horrendous stigma that already exists, that it pulls back public attitudes and blocks research funding in this country. Because they know, like countless other people with M.E, they will be told by doctors once again to do exercise, and when they get worse they will be told it’s because they don’t want to get better, and their body may never recover from the abuse heaped on it. That some well-meaning but uninformed person will inevitably tell them “oh, I saw that person on TV who had CFS who got better with exercise and stress reduction, why are you not?”, not realising that actually, the media and the researchers will find that one person who probably had a period of remission that had nothing to do with exercise, or who may not even had M.E in the first place (because the definition of “CFS” used for all of the trials in the UK isn’t actually the true International Criteria for M.E – it’s the psychiatrists’ own made up definition which is much, much weaker than the true definition and doesn’t even include the most important symptom of M.E which is post-exertional neuro-immune exhaustion…the psychiatrists’ definition actually just describes people who are “tired”: it’s very likely many who enter these trials, are those without M.E but instead have general “tiredness” for other reasons, which may actually get better with exercise), while ignoring the thousands, millions of children and adults who are telling them they have become sicker and bedridden. They know that their friends, their loved ones, people they meet and just as importantly their doctors who they turn to for the most help, will watch and read and in all likelihood believe these claims…and not look into it deeper and see that behind these dubious claims by researchers, are horribly flawed pieces of research. And it is only because of those that instead decide to read and look further, who continue researching and fight for our corner, the friends and loved ones that support us no matter what, that it is easier to keep going.
I also wanted to share a post with you below (originally appeared on Open medicine foundation’s facebook page). It’s written by Hannah Tsui, who is involved with the OMF with Prof Ron Davis, Stanford Genome Centre, who is doing so much to try to get to the bottom of and treat this illness. I read their facebook page often, and it brings me a lot of strength.
“I hope the cutting-edge research in the M.E. field by Dr. Ronald Davis and other brilliant minds (Open Medicine Foundation, Columbia/Lipkin, Stanford/Dr. Montoya, Nova Southeastern/Dr. Klimas, Bateman) imparts strength, solace, and courage to patients.
Patients: Please know that you’re not alone in this fight, that we love you very much, and that we *simply* cannot lose another beloved friend and member of our community. Very devastating. Scientists are fighting, and the researchers, advocates, filmmakers, and interdisciplinary allies will persevere until there is an FDA-approved cure. We are in this together, locking arms in solidarity and never giving up the war to end M.E. Please endure a little longer, and I trust that innovative solutions from scientists will soon emerge. We have to see the silver linings and absolutely fight to remain optimistic during the challenging nadir of suffering until the dawn arrives.
Stanford Genome Center Internship: http://www.openmedicinefoundation.org/justin-noble-research-internship/
Posting the Justin Noble ME/CFS internship in honor of the fallen patients, who we respect, adore, miss, truly love, and will remember forever in our hearts. In memory of my friend who I will always love Hunter Wiebush, Vanessa Li, Amberlin Wu, Thomas Jarrett, Sophia Mirza, Emily Collingridge, and many, many more who left early. I’m heart-broken by these deaths but am grateful and inspired to have known the most beautiful characters and the brightest lights. #millionsmissing #forgottenplague #myalgicencephalomyelitis #beautifulnightmare💜💜💜”
And so I remember..Hope is always there, waiting, even if it’s sometimes out of sight.
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