Merryn's Story

My name is Merryn and I have just turned 18. Looking back my first symptoms began at the end of August 2011 when I was 15. Prior to this I was healthy with a love for life. I was always up early, loved school and had a big network of friends. I was always busy either with friends, family or my love for performing.

We'd been back from a holiday in Majorca a couple of weeks, I'd had such a good time. I Woke up and my face felt strange, I looked in the mirror and was so shocked! it was so swollen all around my eyes that they were almost closed, it was also around my nose and mouth. I went to the drs who stated they thought it was an infection as the swelling was so deep. They prescribed antibiotics and also anti histamine just in case it was an allergic reaction. Things then started to go down hill quite quickly. Over the next few months I continued to have intermittent swelling in my face, hands and feet, trouble breathing and difficulty walking as my legs often felt like lead, I would sleep for hours as I was so exhausted, not the normal kind of tiredness but the kind where your head is so heavy you physically can not move it from your pillow. I was sent home from school on many occasions as I just felt so ill. I tried my hardest to carry on as normal but I found I couldn't keep up my social life as previously, I just didn't have the energy.

9th jan 2012 - I still remember it like it was yesterday - I became ill at school, I had trouble breathing, I was sick and really faint, I had never felt so ill before, I remember climbing the stairs like I was climbing a mountain, unable to carry my bag, it's hard to put into words just how awful I felt. I was taken to hospital, discharged then went back again later as I was getting worse. I was given steroid tablets and a steroid nebuliser which helped me breath a little easier but I still had to be admitted to hospital. Things carried on deteriorating, I was unable to speak properly and had to start speech therapy, my walking was so bad my mum often said i was like an old frail lady. I couldn't understand why the harder I tried to push myself the worse I got, I was also in increasing pain in my muscles and bones, the pain started to get so bad I would often sit clutching to my legs in tears. I was becoming so sensitive to light I had to wear sunglasses a lot of the time, by this time we knew there must be something more serious wrong but I had no idea just how bad things were about to get. I was soon on medication everyday to ease the pain and a steroid preventer to try and help me getting so breathless and ease my cough, but things just kept on getting worse. Doctors still had no idea what was going on but we had all sorts of things said to us, it was such a stressful and scary time. We kept going back to the drs for blood tests and asthma checks and were also referred to an allergy clinic.

Then one day I was unable to stand or move my legs at all, I couldn't even wiggle a toe. 

We went to hospital and we were seen by a doctor who began doing checks on my legs but there was no reflex - I could see by his reaction he was worried and he didn't know what to say. I ended up being in for ten days seeing numerous drs and having different tests. Nobody seemed to know what was wrong. When I came home I had to have my bed moved downstairs as I still couldn't move my legs at all or bear any weight on them. My mum had to do everything for me as I couldn't wash or dress myself, sometimes she even had to brush my teeth for me. I wanted to be back at school and went back in my wheelchair, I had to have a teaching assistant to scribe and help me as I was often unable to think clearly and remember. I was so scared of people staring and asking questions. When I started back at school in my chair I was only able to mange half a day 2 or 3 times a week. To be honest I really shouldn't have pushed myself to do this as I still felt to ill but I wanted to feel as normal as possible. I don't know how I managed to struggle through the last few months but I was determined to, I was unable to sit any exams due to cognitive problems/short term memory and the exam board granted me leniency giving me my predicted GCSE results in my subjects. I think I still didn't realise the extent of how ill I was, I was determined to start college in September (despite being advised differently) following my dream of studying performing arts, I think I still thought I could push myself through it. I kept telling myself that if I could pretend I was okay, I would be. That was one of the hardest lessons to learn about ME, realising that this was not possible and only resulted in everything worsening. In the end I realised I couldn't push myself anymore and had to learn to listen to my body.

It was September when I was officially diagnosed with ME (myalgic encephalomyelitis) ME stands for swelling in the brain and spinal cord, it affects every body system but especially the immune system, nervous system and digestive system. By the time it was October I was very ill, and with the weather getting colder I fell very poorly. My body was to weak to fight against infection and soon my blood count and antibodies were dropping. I developed haemophilus and my right lung wasn't expanding properly. I then suffered severe influenza followed by pneumonia and other respiratory infections. The antibiotics and steroids (along with multiple medications to help my immunity) just weren't working for me, I was using nebulisers twice a day and clearing my chest from thick infected phlegm every day when I woke up, it often had blood in because of burst blood vessels in my chest. Then started the other infections, anywhere and everywhere! My immunologist wanted me to have injections to raise my antibodies but my neurologist strongly advised against it worried about the risk of a serious relapse. From this point onward things slowly worsened and there was a point where I was completely dependent on others, I could not be sat up at all and had to be taken to all hospital appointments by stretcher in an ambulance. I was now to ill to eat and my doctor was so worried by my blood results that he immediately rang for an ambulance to have me admitted as my blood count and blood sugar was so low. I started needing to be hooked to a drip more and more frequently and have bloods taken to be checked regularly. As the months went by we learned to adapt our lives revolved around how my health changed and how I needed to be cared for. As time went on I was fortunate to have days where the suffering was less but there was also days when the suffering has been incomprehensible. I long for those good days and it's what keeps us all going. Soon started the sickness, the crippling and constant sickness. I started loosing weight drastically which again landed me in hospital even more susceptible to infection. Soon tests revealed I had both adrenal insufficiency and pancreatic insufficiency. Due to my pancreas not working properly my body can't absorb fats and other nutrients making it even harder to gain and maintain weight. It was eventually decided that I needed a PEGJ tube inserted directly into my jejunal so that the feed passed part of my stomach, this was thought to reduce vomiting but so far this still hasn't stopped the sickness and I am finding it extremely hard to tolerate the feed even at a very low rate.

I now weight 6st 2llb with a BMI of just 14. I am constantly being pumped with medication including morphine and antibiotics to name but a few.

I don't want anybody's sympathy, but I do want people to understand that me and the thousands of others with ME are seriously ill, yet our suffering is constantly under minded and we are often made to feel bad because people choose not to understand. If you want to do anything to help please share my story or donate to invest in ME or any other good ME charity.

Thank you for taking the time to read this

Ryans Story

"I was going to leave a post at the article but I feel it would be a waste of time. I got M.E. from an infectious disease. The bacteria spread to my entire body while the docs were trying to have me committed for a somataform disorder. I almost died several times and ended up in a neurologists office because my nervous system was shutting down. They thought I had ALS then they did an EMG on me and found it was a polyneuropathy from systemic disease. I was tested for several bacteria in my body and I tested positive for over 5 of them. I am a veteran who contracted it while deployed in SW Asia during war. I had a PICC in for a year and I got it out today, but unfortunately they are going to put another one in. The bacteria I am fighting has been modified to be stealth and extremely resistant. I have been suffering from all the symptoms of M.E. and some very severe ones that come with having bacterial meningitis.

I would be more upset if I hadn't been diagnosed with the bacterial infections, but I would be dead. The reason this still upsets me is because I got so sick due to the incorrect and unprofessional bias that the doctors had when I presented my symptoms. They were extremely rude and broke their oath. They caused me to be permanently disabled and ruined my life. I just thought that people out there who are fighting M.E. may want to know of someone who has all the symptoms of M.E. and has an indesputible diagnosis. I am saddened to see people who don't have M.E. and have something very mild or nothing at all talk about M.E. as if exercise and positive thinking will cure you. In my case I was one of the fittest Marines in my unit and a professional cyclist. The M.E. symptoms that I got from the bacteria made me a cripple. At the beginning, the more I exercised the worse I got because I was spreading the bacteria. I had months were I could not walk. I don't remember years of my life and the only evidence that the time has passed is the date and the creases that are imprinted in my body from laying in one position for so long. The bacteria became so widespread that my treatment is extensive and will continue for many years if not for the rest of my life. The delay in my treatment was caused by the type of thinking that this article encourages.

I hear so many people talk about people like me as if we are weak, lazy and losers looking for attention. That's interesting because when I was big and strong and making most other Marines look weak no one dared to say that kind of stuff to me. What kind of people belittle a disabled person for being weak while they are dying yet don't have the courage to say a thing to me when I was strong? Cowards! That is who they are. Unfortunately that is how much of Humanity works. When I was strong and successful, people kissed my ass and wanted to get in my pants. When I became disabled and in need of help the people became cruel and neglectful. If I took people at their word I would have to believe that it would be the opposite; that people would be more likely to treat healthy people able to stick up for themselves badly and treat sick disabled people with compassion and caring. I know now that is not how most people are. I never knew how people really were because the people who would treat someone like that were too cowardly to try that on me when I was healthy. Once I became disabled I became a target for these narcissists, sociopaths, and psychopaths. I was shocked. I had no clue people like that were so common. They are the most disgusting creatures on Earth and they prey on sick and disabled people because they despise not being able to control the stronger, better men/women. So, they find the weak ones and take out their frustration on those in need in order to live out their fantasy for revenge. I have always lived my life to look out for those who could not protect or defend themselves and gave little respite to my peers, especially when I saw how they treated the disabled. Now I have learned first hand that it isn't that they don't like the disabled people they target. It is that they are sick in the head and they crave power. They target only those weaker than them because they are cowards. I now know them very well. I see them for what they are. They are also called sycophants. They live as parasites to the strong and oppressors of the weak. They are the reason I joined the Marines and as soon as they see someone like I was coming to protect the weak they do their best to pretend to be one of them, but when no one is around to protect the weak they shed their sheeps clothing and the wolf comes out. It is the definition of psychopathy. Look it up if you like and it will shine light on what these people are. Seriously, let's take a step back and ask ourselves: Who goes to a website talking about disabled people with chronic illness and belittles them then calls them weak and lazy? If someone doesn't know what severe M.E. is then they wouldn't post except to ask questions. If someone does know severe M.E. then they would never patronize or belittle those suffering from it. So, then who are these people who come to articles about M.E. and make fun of disabled people? I think I already described them pretty well.

By the way the bacteria that gave me M.E. are babesia, bartenella, Lyme, C. pnuemonia and the most disturbing one of all is pathogenic mycoplasma which is patented by the US Army and was made by a chinese molecular biologist who then taught and provided the weapon to the middle east through the CIA.

Sorry for the long post but I have a lot to say and if someone wants to post some of this in the comments of that article to shut up some of those lying fools feel free. Just let me know. The fact remains that M.E. is an idiopathic diagnosis which means it's cause is unknown. I have all the symptoms of M.E. and the cause is known. Many things can cause M.E. and the medical community knows this. The symptoms of M.E. are found in so many systemic illnesses it is ridiculous. So essentially what they are doing is lumping all the most difficult cases to diagnose into a group then running a propaganda campaign against them. It is completely criminal."