Breakspear medical :  the good and the bad!

It’s been about 2 months since I first went to Breakspear Medical, a hospital which specialises in diseases relating to the immune system. Before I went, I had heard both good things and bad things about Breakspear – and unfortunately my experience also hasn’t been completely perfect, especially as time went on. I wanted to be honest about my experience so far, both good and bad, and not only report the positive bits – because it wouldn’t be truthful for the people who were thinking of going there.

My first appointment went really well. We had stayed overnight at a nearby hotel which was 2 minutes away from the hospital. I wasn’t able to sit up very much so by the time I got to the hospital I needed to lie down – they gave me a bed to lie down in until I saw the doctor, which helped a lot! Then I went to see my doctor, and she was very kind and she knew about Simon Wessley (the psychiatrist who one of the main proponents of the Chronic Fatigue psychiatric theory I.e you think you’re ill so you’re ill) and she criticised him – which was a good sign! She also knew exercise can be bad for M.E. The doctor said she suspected I had a lot of problems with my stomach, which could have been contributing to immune system dysfunction and leading to autoimmune disease.  So she suggested I have blood tests (and stool and urine tests) – I was already prepared for this – in my research I found that Breakspear do run a lot of blood tests to try to find out what’s wrong, so all three of us (my mum, martyn and I) had saved up everything we could for 6 months (and a credit card) to be able to afford the tests. These kinds of tests are not routinely run on the NHS, mostly due to cost.

It took 4 weeks for all the test results to come through – because some of the tests are really specialised:

  • Very high antibodies to HHV-6, indicating an ongoing immune response to HHV-6, as well as very high antibodies to Epstein Barr Early Antigen, indicating that I am stuck in an acute stage of infectious mononucleosis. The lab which had run these tests had commented that the results show an ongoing viral infection.
  • Positive Antibodies to Malaria –  This means I have been infected with malaria and my body has tried to fight it by producing antibodies! The strain in India (where I went in 2009), is called P.vivax – it doesn’t commonly kill but causes disease and ongoing flu like symptoms and fatigue etc. It also can go into the liver and stay dormant and randomly reactivate in the body. I was very ill in India for a month with relapsing fever, chills etc but I wasn’t tested for malaria and the doctors there said I was just ill because I was English and couldn’t take the heat! Ever since then my health deteriorated, and I believe the malaria stayed dormant for a few years before reactivating.  It went untreated until Sept 2015 when I was diagnosed with lupus, and at that time my feverish symptoms were at their highest…With lupus the treatment is, strangely, anti malarial tablets every day, so I’ve been taking 400mg of anti malarial medication every day for the past 1 and a half years. I recently did a blood test which confirmed there was no malarial parasites currently in my blood which means the anti malarial tablets have done their job. Usually treatment for malaria is a few weeks and I’ve been taking these for over a year, without even knowing I had malaria! Malaria is also known to suppress the immune system, so I am wondering whether it was the malaria which suppressed my immune system and initially allowed the viruses to take hold.
  • A pathogenic (disease causing) infectious overgrowth in my stomach caused by the bacteria Klebsiella Pneumoniae. Usually NHS doctors don’t take much notice of it unless it goes into your bloodstream, because then it causes serious infections and sepsis. But in my research I found out that having a stomach overgrowth of Klebsiella is strongly linked to the onset of autoimmune diseases like Ankylosing Spondylitis. This bacteria is usually picked up in hospital settings and some strains are “superbugs” I.e resistant to some antibiotics. It causes a whole host of stomach symptoms including diahorrea, cramps and intense pain which I have struggled with since I was a child and usually passed off as “Irritable Bowel Syndrome”. I also had high secretory IgA  in my gut indicating an unregulated immune response – which is saying my body is fighting the infection, and I also had blood in my stools in the form of red blood cells, which shouldn’t be there.
  • Antibodies in my blood to stomach bacteria – showing the bacteria has attempted to go into my bloodstream (which can cause sepsis) but my body is fighting it
  • A severe infection of yeast in my stomach – which in itself can cause fatigue, food and chemical intolerances, pain, bloating, nausea – all of which I now suffer with
  • Antibodies to many gluten and wheat proteins in my blood, including some that the NHS use to test for coeliac disease. I cut out all gluten as soon as I saw this result!
  • Histamine intolerance – I don’t have enough of an enzyme called DAO which is used to break down histamine in histamine rich foods which I eat regularly like tomatoes. aubergine etc. So histamine (which causes allergic reactions) builds up in my body causing allergy like symptoms and muscle and joint pains, headaches etc. I can take tablets to replace the DAO but they are made in Germany and really expensive – so for now I’m just avoiding most of these foods.
  • Severe vitamin deficiencies of B2, B5 and B6. The other B vitamins weren’t tested but I have no doubt I am also deficient in them too, if Im deficient in these! These vitamins are really essentially to human functioning – deficiencies lead to muscle weakness and neurological symptoms such as pins and needles both of which I do have, and all sorts of other neurological defects. I’ve been put on a high dose B complex supplement so I’m hoping in a few months my deficiency will be better.
  • Very low (almost nonexistent) serotonin and dopamine. When I saw this, I was thinking “whaaat?!” because even with all these these health issues going on, I don’t believe I am clinically depressed – I still remain hopeful and happy and excited about what the day brings. But then my boyfriend pointed out that very low serotonin is also linked to high anxiety and panic attacks – which I do get a lot of. My heart races nonstop. An interesting fact is that the body (that is, the stomach, because 95% of serotonin is made in the stomach!) cannot make serotonin and other neurotransmitters unless it has sufficient B5 and B6, and the stomach also needs to be in good condition. And I have a huge deficiency in these vitamins so how could my body make serotonin?! I was excited to discover this because this also explains part of  my longstanding high anxiety state and panic disorder.
  • Krebs Cycle dysfunction – essentially my body was lacking the ability to convert glucose to energy sufficiently in the cells – if all the cells in my body don’t have energy, then it explains the huge amount of fatigue I get (which isn’t at all like normal fatigue which people get after a days work). It is the horrendous fatigue I get from just sitting up for 3 minutes or holding a conversation. This is one of the defining characteristics of M.E patients and is being researched a lot in America now. There are some amino acids that can help with this which I was prescribed, but I later found out through my own research that these amino acids interact in a harmful way with lupus antibodies. So I won’t be taking them, and anyway  I think Krebs cycle dysfunction may be linked to all the infections I have which are playing havoc with energy production.
  • Allergies to nickel and formaldehyde (found in many household items)
  • My lupus antibodies had increased from what they were 9 months ago, and some lupus specific antibodies which had been borderline before, were now firmly positive. This meant my lupus had got worse after the graded exercise trial I had been enrolled in by the NHS.
  • Borderline result for Lyme disease (a tick borne disease found in areas I had visited like Richmond Park).
  • Positive for past amoebic dysentery, a stomach infection caused by a parasite amoeba. The antibodies indicated a past or treated infection – since I’ve never been treated for it, I assume my body fought it off. But they can cause extensive damage to the stomach, even long after they are gone.

All of these results were a lot to take in! And I was in a very panicked and upset state as soon as these results started coming in. But I was looking forward to the follow up appointment where I could discuss these results. I remember the doctor saying she believed my stomach was at the root of a lot of my issues so I wanted to know what she made of my results.

I have had a lot of stomach problems since I was a child – including ongoing diahorrea alternated with constipation, huge amounts of blood and pain when I went to the toilet – I get this a few times every few weeks and it is terrifying, cramps, intense pain, feeling like there are shards of glass in my upper stomach. When I was a baby I used to cry in pain and during primary school I had to be taken out of school a lot because of the pain. As I grew older, the pain and bleeding didn’t go but instead I learned to live with it and hide it more. Even during work and university I was in pain every day… I think most people would be surprised to know this as I learned not to talk about it too much. I couldn’t take oral painkillers as they hurt my stomach so much. I can’t take many tablets due to my stomach pain. I’ve been investigated under the NHS and been told nothing is wrong. How can nothing be wrong when you bleed when you go to the toilet for 27 years?! Now at Breakspear I’ve found out that I have these infections in my stomach – and I do believe that I’ve had these infections for a long time which have caused a lot of my problems, and because they weren’t tested for, they weren’t found until now. Having long term infections in a stomach can cause a lot of harm. I’ve also had a lot of issues with different foods causing me pain. And it is known that stomach infections can lead to all sorts of issues with food including food and chemical sensitivities. Even viral infections can lead to severe gut dysfunction. So to me, and because of how ill I am from these infections, I knew I had to treat the infections and viruses first.

Unfortunately my appointment didn’t go as well as I had hoped. The doctor read out all of my results, with hardly any comment at all for the majority of my results (all of what I’ve written above is purely my own research after I spent a lot of time looking through research papers!). She lingered only on a few results – mainly the allergy tests which showed an issue with nickel and formaldehyde, and she said this meant I probably had a lot of allergies to other things. She prescribed anti virals as I asked for them, and a probiotic for my stomach. She also said I should go on a detox programme to get rid of the chemicals – I’ll be honest, I’m not keen on doing any herbal treatments, as a priority, for this yet as I think the body (liver and kidneys) should naturally be able to get rid of many chemicals like perchlorate, if it’s working properly, has sufficient vitamins and nutrients and no infections. She said upregulated IgA in my gut was due to food allergies – whereas even my test result pointed out it was due to stomach infections! The doctor I should do a treatment called Low Dose Immunotherapy – which is fine as a treatment, except what it does is treats food allergies but I knew a lot of my food allergies were secondary to the infections, and also LDI was very very expensive. It felt rushed. We left the doctors room feeling very uneasy, and it was only afterwards that we realised Klesbiella Pneumomiae wasn’t mentioned, I was given no treatment for the yeast infection, the viral infections didn’t seem to be a priority, my stool test wasn’t commented on much, and the fact my lupus had got worse and autoimmune conditions are strongly linked to infection wasn’t commented upon. In fact it seemed the doctor believed most if not all of my problems were caused by food allergies! I think other people may not have been uneasy and may have been willing to accept her word – but I am not someone to stay quiet especially as we don’t have much money at all and had already spent so much.

So the next day my mum and boyfriend went to ask for another urgent appointment to see the doctor. And we did manage to see her! I told her my concerns and how I believed I needed to treat all my infections – not just allergies. When I asked about Klebsiella, I was told “everyone has Klebsiella in their stomachs, don’t they?” I was stunned at that comment. Because firstly, no, not everyone has it in their stomachs, and even if someone does have it, a lot of the time the body and the gut (if there are enough good bacteria) is able to keep it in check so it doesn’t cause an overgrowth and a lot of symptoms. Unfortunately for me there is an overgrowth – and that is what is linked to disease and autoimmune conditions. This bacteria had also attempted to go into my bloodstream! My boyfriend asked me afterwards, why do they do all these tests if they just disregard them or don’t know how to treat them?! He has a point.

In the end I was prescribed a herbal treatment for it – Grapefruit seed extract, unfortunately as I have a lot of issues with citrus I don’t think it would be able to help me. The doctor also said she believed eating wheat was at the root of many of my lupus, and while I believe it was a contributing factor I firmly believe infections are more important. I was also told I needed to do the LDI (food allergy treatment) as only then would my stomach be well enough to tolerate medicines like antivirals. I later found out that actually these anti virals and vitamins are available on IV drips through Breakspear, which would have bypassed the stomach and worked to clear the infection from my bloodstream!! This really upset me, as it would have cost me less to do the IV treatment than do the LDI treatment, and I could’ve done it a month ago! It’s been a month since I started LDI and I  still can’t take many tablets, either antivirals or high dose vitamins, which I actually need to treat the infections! I tried a supplement recently and was in a lot of pain. So you can see why I’m upset! I should have listened to my gut instinct that the infections are the first priority to treat 😔

My initial experience is that Breakspear do offer treatments that aren’t offered on the NHS for things like viral and some bacterial infections, but I wish I had known more when I started. Unfortunately you will need to do research yourself and find out if what they’ve recommended for you really helps – and pick just what will really help your condition. Some of the doctors are big on LDI and detox at Breakspear, and as you can tell I don’t think they address the primary issue when M.E and infections are the problem. If you have the money to be able to afford both low Dose Immunotherapy (LDI) and other viral and bacterial treatments, and are happy to do so, then its fine.  If you don’t, and you are told to do LDI as a priority, and you then don’t have much money left for other things (and it seems a lot of people are told that, because so many people who go there have infections which cause food intolerances) then I think that’s not good at all. LDI is pushed as a priority for a lot for M.E patients. It helps many people but if you have a severe infection, and allergies are not your primary illness but your stomach can’t deal with taking many tablets, just so you know – there is the option of IVs instead. And most likely after the infections have passed, food sensitivities might reduce too. I’ve now asked to switch to a different doctor for all the reasons mentioned above, and because I didn’t want to feel as if I need to push to get treatment, or feel uneasy about the infections not being taken seriously. Also dealing with all this, having to do my own research because I couldn’t get answers from my doctor, it’s so stressful when I am so ill.

I also saw a nutritionist there. She was lovely and kind, but unfortunately her food plan made me worse. Having discussed all my symptoms, she put me on a high protein, slightly higher fat diet, which should give me energy, only 3 meals a day with hardly any snacking and no sugar. For 2 weeks I was in agony. In the middle it seemed like I was ok, but on those days it was because I wasn’t actually following her plan! I can only eat small amounts as my stomach can only hold a little bit of food, and I have to eat tiny amounts every few hours or I end up in pain (overeating also causes me to become ill!), so having 3 big meals a day and no snacks was making me worse. Also my body simply couldn’t digest that much fat and protein or nuts and I was in horrendous pain, which also set me back because whenever I tried to take medication, I ended up in even more pain. So I quit her plan and just went back to my old diet, just with less refined sugar and no chilli and caffeine. and I feel much much better for it – still in pain but nowhere near as much as on that diet!

But it’s not all bad! There’s plenty of good! I wrote my bad experiences because I know I’ve said before how amazing my initial experiences are, and I wanted to be honest and talk now about the not so good things that happened since then, for those that were thinking about going to Breakspear. But now the good stuff, and why I’m happy I still went to Breakspear..😊

I found out what’s wrong with me. This is invaluable because prior to coming here, I didn’t have a clue what could be so wrong with me. In fact I thought I had glandular fever in the past, and it just left my body in a bad state. Instead I’ve found out I have ongoing glandular fever and other infections which can be treated! Although antivirals don’t kill the virus completely, they can suppress the virus until I can work out how to get the immune system working properly again. And even though I had to push for it, I got prescribed some of the medicines that I wanted and which I need to get better. They’ve done far more for me at Breakspear than the NHS was able to do. And armed with this knowledge of what’s wrong with me, I have even more hope for the future!

In the meantime I am now looking into treating my stomach myself with plenty of fermented foods to build up good bacteria levels and probiotics, and possibly antibiotics but unfortunately may also have to go elsewhere for treatment in the future, where they know more about the stomach, as I also have other issues with my stomach and I can’t keep living with pain and other symptoms!

Also, a few weeks ago I started including eggs and oily fish in my diet such as salmon as I read about how beneficial omega 3 fatty acids are to inflammatory diseases like lupus, and general health as well! In fact they’re essential, and plant sources such as flax do not get converted to the most beneficial forms very efficiently. I know of people with joint and muscle pains who have been helped by eating fish. I have to admit I’ve seen a difference in my health just from this, and I do have more energy. It was very difficult to do at first, as I was a vegan! But I realised I need to put my health first.

Now that I know how many infections I have, I realise how vital it is for me to rest. The herpes family of viruses (including EBV and HHV6) are known to multiply under stress. All my life I have been under tremendous stress, and I know it hasn’t helped, I find it very hard to relax as my mind is always working, always trying to figure out stuff, but in those moments that I am able to meditate or cross stitch or draw or read, things get quieter. So although I am still quite stressed about my treatment plan, the next step is to start taking antivirals as soon as my stomach gets a bit better in the next few days! And hoping my stomach can deal with it! 😊

I hope my blog post helps people. Again, I was unsure about whether to post all this because I didn’t want to come across as too negative. But this was my true experience, and I hope it will help others.

And here’s a picture of my bear Pinkshells.. because she’s so cute! 💜

New Year Hopes

At a time when so many people are reflecting on the past year, and hopes for the new year, I feel like retreating into my own little bed-blanket fort. Because this year has been very hard, harder even than the years that came before. In truth I started 2016 with a lot of hope and excitement. In January last year my mum did a social housing swap – which meant I was able to move out of our old home which was on the second floor without a lift, and we moved into a beautiful new home which is much smaller and all on one floor. I was slowly getting better and I truly believed by the end of 2016, I would be celebrating New Years by going out with Martyn, that I would be back at university – that I would be able to prepare a meal for myself. That I’d be walking around in London. 

Instead, this year has been even harder than the year before. I went through things I would never have imagined – I became so sick that I cannot really describe what happened to me without feeling so frightened when I think back to it. This year, my faith in healthcare was also shaken so strongly – I’ve always been a huge advocate of our healthcare system because publicly funded healthcare is a human right and a need, and of course I still am, but i could never have imagined that a section of society could be failed so badly and for so long by the health system due to political influence. I could not imagine a publicly funded trial, at a well known university (the university I was studying at!) would push me into such a state. 

Around the beginning of 2016, I was at about 40% on the M.E functioning scale:

In 2016, after the trial, I was functioning at 5%. There were times when my health dipped to 0%. Perhaps reading this graphic below will give an idea of what happens to those at this end of the illness. 

I was eating 2-3 Ella’s kitchen liquid sachets a day. I should’ve got a milkshake food replacement drink but was too ill to find out which one would be nutritious for me. (Over the past year despite eating so little I’ve only lost just under 2 stone – probably as I’ve been in bed all day so am not expending any energy.) My stomach would burn in pain as I wasn’t eating enough – and coupled with the fact that I have longstanding stomach condition from childhood which means I need to eat very regularly – it’s done a lot of damage to my body which I am now struggling greatly with.

Quite a few months on and with a lot of rest and ups and downs along the way – I am now hovering somewhere around 20%, which is severely affected.. just like I was back in August 2015. Sometimes I do feel even more unwell, and with any exertion I get delayed symptoms. When I do my blog now, I feel the post exertional effects for a week afterwards. I sometimes read for too long; I love reading more than any other thing in the world (except my loved ones and cuddly toys). Every time I see friends I am in all likelihood pushing myself as I become more unwell afterwards; but I do it anyway, even if infrequently, because I do not want to let this illness take away my friends and people I love and care for as well as everything else it has taken from me – that is too precious and important to me. Over the past few months there have been many ups and downs, on bad days it is worse, but I am hoping this baseline stays stable. I have been filling in a M.E/CFS electronic diary which only requires me to press a few buttons a day, and so is relatively ok to do every day – and that has also confirmed my physical baseline last week as 20%. 

My New Years wish is to get better. That is what I wish for myself and for others for whom illness has taken their dreams away – to be well enough to have plans and dreams again. I am only in my 20s and there is so much I still want to do. I wish to get my independence back again and to be able to look after myself. To walk into Croydon, get on the tram and go into town – or even to do this in my wheelchair often. To be outside and live my life. To wake up and do all the things I want to do that day, knowing my body could do it. To do the things that I would have taken completely for granted just 2 years ago. And I wish that day will come soon; I hope that 2017 brings more hope and that all these wishes come true. 

For some of us, New Years resolutions can be upsetting when we are so much sicker than our peers – when other people write up lists of things they have achieved or would like to achieve or do better and we physically cannot do even some of what is on their list, it is so easy to compare or blame ourselves and feel a lot of despair. 

We do deserve to live our lives as fully as others, but we cannot, and only those in our positions know how very painful it is; it is only natural to compare and wish for things to be different. I’ve learned the hard way it doesn’t help my health to compare to healthier people (but still do it anyway!) – in those times I switch off from social media and try to focus on just what I can do. I don’t have a New Years resolution to make myself a better person  – I try to remember I am enough as I am. I just hope for better times, and try to stay as happy as I can. I went into the new year huddled up in my blankets, feeling so grateful to have Martyn by my side – he is my shining star. And books bring me a lot of happiness, I’ve spent the past few days reading when I can, although mostly audiobooks. (Harry Potter on audible has been amazing – Stephen Fry’s narration just takes me straight to Hogwarts ⭐️). 

 I think this is me especially when in my healthier days: 
(Reposted via http://bookgeekconfessions.com/

And finally, Violets wanted to make an appearance… here she is, with her sparkly pink eyes. She’s relatively new to the house but has already made lots of friends with her cute personality and oodles of sweetness 💕🌟

Keeping hope when you feel broken

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.

If you’d like to, do follow my blog to get my latest posts about raising awareness and living with M.E. (Scroll down for the follow button at the bottom of the page) 🙂 and do leave a comment too, it means a lot to me to know that people are reading my posts:)