What it feels like to have Myalgic Encephalomyelitis: A personal M.E. symptom list and description of M.E. This paper combines the available research on M.E. with a personal description of the illness to try to explain what it really feels like to have M.E. This is not just a second 'list' of symptoms - more than 50 individual symptoms (and other characteristics) of M.E. have been described in detail.

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Copyright © by Jodi Bassett May 2007 on ahummingbirdsguide.com
This version updated February 2008

I put together The ultra-comprehensive Myalgic Encephalomyelitis symptom list in 2004 using references from the world’s leading M.E. experts. For some time however I’ve wanted to create a second M.E. symptom list; one which combines the available research with a detailed personal description of the illness and which might more accurately describe what it really feels like to have M.E., far more than a purely clinical list of symptoms (even an accurate one) ever could.

There is also a real need for more of this type of information to be available to the M.E. community. So many of the emails I get from people with M.E. (and the conversations I see in M.E. support groups), have to do with sufferers trying to find out whether the textbook M.E. symptoms they are experiencing are common in M.E. or not. It's completely unacceptable that despite the abundance of good research available dating back to the 1950s (and earlier), most people with M.E. today – thanks to the financially and politically motivated creation of the bogus disease category of ‘CFS’ in the 1980s – have little or no information about the various neurological, cognitive, cardiac, cardiovascular, immunological, muscular and gastrointestinal (and other) symptoms which characterise M.E. So many of these very ill people are just desperate for what amounts to basic information about their symptoms and their illness.

The symptom list is divided into three categories:

Because of the vast amount of inaccurate information being propagated about M.E. by various vested interest groups (helped immeasurably by the creation of the bogus disease category of ‘CFS’ as well as a number of vague and misleading umbrella terms such as ‘ME/CFS’ ‘CFS/ME’ ‘CFIDS’ and Myalgic ‘Encephalopathy’ etc.) it is important to explain briefly what are the myths about M.E., and the symptoms of M.E..

This diffuse brain injury is initiated by a virus infection which targets the brain; M.E. represents a major attack on the central nervous system (CNS) by the chronic effects of a viral infection. M.E. is an infectious and primarily neurological disease process which occurs in epidemic and sporadic forms. There is a history of recorded outbreaks of M.E. going back to 1934, when an epidemic of what seemed at first to be poliomyelitis was reported in Los Angeles. A review of M.E. outbreaks found that clinical symptoms were consistent in over sixty recorded epidemics of M.E. spread all over the world. M.E. has been linked to Poliomyelitis (Polio) since 1934 and for a number of years M.E. was referred to as ‘atypical Polio.’ A significant number of the world’s leading M.E. experts believe that M.E., like Polio, is caused by an enterovirus. The evidence which exists to support this theory is compelling, for example: M.E. epidemics very often followed Polio epidemics, M.E. resembles Polio at onset, serological studies have shown that communities affected by an outbreak of M.E. were effectively blocked (or immune) from the effects of a subsequent polio outbreak, evidence of enteroviral infection has been found in the brain tissue of M.E. patients at autopsy, and so on. (See: The outbreaks (and infectious nature) of M.E. and for more information.)

There is just no other illness that is even remotely like M.E. M.E. is a distinct, recognisable disease entity which contrary to popular belief is not difficult to diagnose and can in fact be diagnosed relatively early in the course of the disease (within just a few weeks) – providing that the physician has some experience with the illness. (The usual case of M.E. is so distinct that people with M.E. can recognise fellow sufferers almost in an instant.) Although there is (as yet) no single test which can be used to diagnose M.E. there are a series of tests which can confirm a suspected M.E. diagnosis. If all tests are normal, if specific abnormalities are not seen on certain of these tests (eg. brain scans), then a diagnosis of M.E. cannot be correct. (See Testing for Myalgic Encephalomyelitis for more information.)

• For more information about the medical and political facts of M.E. (and for references) see: Testing for Myalgic Encephalomyelitis, Putting Research and Articles into Context, The Ultra-comprehensive Myalgic Encephalomyelitis Symptom List and What is Myalgic Encephalomyelitis?
• Note that many different illnesses may share a percentage of the individual neurological, gastrointestinal or cognitive features of M.E., (and so on) but there is no other illness which encompasses each of the specific neurological, cognitive, immunological, gastrointestinal, cardiac and cardiovascular, endocrinological, respiratory, hormonal and other features and symptoms which make up M.E. This specific combination of symptoms is not seen in any other illness. There are also a number of characteristics of M.E. which are unique to the illness; most notably the way in which people with M.E. react to physical and mental activity, and orthostatic stress etc. and the way in which even low levels of these activities (beyond a person’s individual limits) can negatively affect long-term prognosis. The acute onset of M.E. also sets it apart from many other illnesses commonly associated with a gradual onset, as do many other characteristics. See: M.E. and other illnesses and The misdiagnosis of CFS for more information.
• An additional note on ‘fatigue’: Just as some M.E. sufferers will experience other minor and non-essential symptoms such as vomiting or night sweats some of the time, but others will not, the same is true of fatigue. The diagnosis of M.E. is determined upon the presence of certain neurological, cognitive, cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, muscular, gastrointestinal and other symptoms (and so on) – the presence or absence of mere ‘fatigue’ is irrelevant. In addition to these other (far more serious) symptoms, some M.E. sufferers may also suffer with mild, moderate or severe fatigue some of the time, while others will not. Thus the symptom of fatigue is not an essential symptom of M.E. and does not define M.E. (Although the symptom of fatigue is essential to qualify for a misdiagnosis of ‘CFS’). For more information see: M.E. is not defined by 'fatigue' and The definitions of M.E. (and CFS).

• What is CFS? CFS was created in a response to an outbreak of what was unmistakably M.E., but this new name and definition did not describe the known signs, symptoms, history and pathology of M.E. It described a disease process that did not, and could not exist. All each of these flawed CFS definitions ‘define’ is a heterogeneous (mixed) population of people with various misdiagnosed psychiatric and miscellaneous non-psychiatric states which have little in common but the symptom of fatigue (a symptom seen in many illnesses but not a defining feature of M.E. nor even an essential symptom of M.E.). The disease category ‘CFS’ has undoubtedly been used to impose a false psychiatric paradigm of M.E. by allying it with various unrelated psychiatric fatigue states and post-viral fatigue syndromes (etc) for the benefit of various (proven) financial and political interests. CFS and M.E. are NOT the same. For more information on this topic, including how the CFS scam also negatively affects the media, doctors and the public etc., see: The misdiagnosis of CFS, Smoke and mirrors and Why the disease category of ‘CFS’ must be abandoned. The truth about the organic and distinct neurological illness M.E. must not be allowed to be buried under cover of ‘fatigue’ and ‘CFS’ for another 20 years!

"One of my very first M.E. symptoms (I had it from day one and I still have it now) was to feel very vertiginous and disoriented in the dark or when I had my eyes closed. I would have no sense of up or down, or sense of where I was in space and often I would experience vertigo as I result. I would be fine if there was a low level light but pure darkness was suddenly a real problem for me. I’d be lying normally on a bed but then I’d turn the light off and I’d find myself holding tight onto the edge of my bed so as not to fall off; I’d be so sure my bed was suddenly tilting at a wild angle and that I must be about to roll right off it. Getting to sleep began to become really difficult.

I just couldn’t work out what was happening at first. I even thought I might be somehow ‘scared of the dark’ for a little while, as ridiculous as that sounds now. (That was all I could come up with! I just had so little accurate information about my illness at the time… well, no accurate information at all to be more precise as I was misdiagnosed as suffering with depression and anxiety for many years, despite the fact that I had no feelings of depression or anxiety – and that I did have a whole host of symptoms which couldn’t possibly be explained by any mental or behavioural condition.) Through a lot of trial and error however, I finally found out what was really happening: that my systems of balance (my vestibular systems) and sense of where I was in space (my proprioception) were damaged – or at least no longer working as well as they did, or reliably. I also worked out that my body had adapted to this damage to some extent (as the brain will often do) by using my vision to compensate. This was great, but of course it meant that if it was dark or if I closed my eyes, I’d be back to square; which was exactly my problem! Once I’d worked all this out, I started going to sleep with a night-light which helped immeasurably, although I have to try to go to sleep without having my eyes closed for very long beforehand, which is difficult. (Incidentally, the fact that my vestibular systems are severely damaged, and that I use vision to compensate, has been verified by objective scientific testing through the administration of a Romberg test by a physician. A Romberg test is a useful test of damage to the vestibular systems and of brain stem function. See Testing for M.E. for more information.)"

"Some days as soon as I first stand up (upon waking) I can feel that my balance is even worse than usual. I’ll start walking to the bathroom having to hold onto both sides of the hallway walls as I go to try to keep myself from falling. The weird thing though is that I am not fighting to avoid falling over forward. My internal sensors are telling me that in fact I’m walking almost upwards (as if I were walking UP the wall) and that I am in danger of falling backwards, and about 10 degrees or so to the right. I can see clearly where the real up and down is, but my body (my vestibular system) is telling me something very different. It is disconcerting to feel as if you are walking up a wall and are about to fall backwards, when in reality you are leaning quite far forward as you walk and are in far more danger of falling forwards onto your face than anything else! This balance problem typically lasts all day but does slowly improve as the day goes on usually as the system is able to reset itself somehow."

"Aside from the many different neurological problems, cardiac problems are probably my worst symptom right now and they are certainly the scariest symptoms. They are caused by my being upright for too long (orthostatic stress) but also from too much mental or physical activity. The symptoms are much the same independent of whether I have overexerted physically, mentally or with orthostatic overexertion. The pattern is the same too; some moderate to severe symptoms right after it happens and a far more severe worsening of symptoms starting anywhere from 8 to 48 or more hours later. The delayed onset symptoms or relapse can last one day, or a week or several weeks if the incident was bad enough (or even 4 – 6 months or more if it was extreme. I also might never regain my previous level of health if it was an extremely severe overexertion, as has happened before.)

(Like just about every other M.E. sufferer, I was blown away when the research about cardiac insufficiency came out a few years ago. ‘That explains so much!’ and ‘finally some attention on the obvious cardiac problems of M.E.!’ we all thought. According to this research, mitochondrial dysfunction leads to diastolic dysfunction and reduced stroke volume/low cardiac output in M.E. – and certain levels of orthostatic stress and physical and mental activity etc. exacerbate this cardiac insufficiency. Dr Cheney explained recently that because it takes more metabolic energy for the heart to relax and fill with blood than it does for it to squeeze and pump blood, the hearts of people with M.E. don’t fill with the proper amount of blood before they pump which is what causes the reduced cardiac output and many of the symptoms of M.E. (and much of the disability of M.E.) So the tachycardia – fast heart rate – seen in M.E. in response to orthostatic stress etc. is actually compensating for low stroke volume to help increase cardiac output; the heart doesn’t fill with enough blood so it is forced to beat faster to try to make up some of the shortfall, but we are still left with reduced cardiac output which leaves us very ill and disabled, and if severe enough can result in death. As one M.E. advocate explains: ‘Cardiac output is sometimes too low to meet the demands of movement, and any attempt to exert oneself beyond one's own capacity for cardiac output - that is when demand exceeds cardiac capacity - would indeed result in death. Studies on dogs have shown that when the demands of the body exceed cardiac output by even 1%, the organism dies. M.E. patients [must] reduce demand and reduce their exertion level to stay within the bounds of their low cardiac output to stay alive.’ (MESA) Click on the ‘Dr Cheney’ link above to read more about this new research.)"

"I can currently only be upright/out of bed for a few minutes at a time, for no more than 15 – 25 minutes a day without experiencing severe cardiac symptoms. That is just enough time upright for me to get dressed, take the trips to the bathroom I need, walk to the kitchen a few times to get food – if I plan things very carefully and am very quick. Some days if I’m lucky I’ll have a few minutes spare standing or sitting up time that I can use either to wash my hair, get something off a shelf, have a drink of water sitting up, or brush my teeth or my hair sitting up etc. Even sitting up in bed with a few pillows also causes these problems. I also have to raise my legs slightly when I am lying down to reduce the load on my heart because my heart struggles a lot more if I don’t. Wearing knee-high compression socks helps to a certain extent too. (Blood pools in the lower legs and feet when you have M.E.; research has shown that the average person with M.E. has only 75% of the circulating blood volume they should have.) I dream of one day being well enough to sit up to use an electric wheelchair a bit now and then, that would be just wonderful but I would have to improve immensely for that to happen (not just with being able to sit but with being able to cope with movement, light and noise sensitivity, and much more). Being able to use a wheelchair is something I hope for very much, in the future. But I am far too ill to use a wheelchair at all now, or anytime even remotely soon."

"The symptoms and sensations caused by being upright longer that you should be when you have M.E. are intense, and make you feel profoundly ill. When I’ve been upright for too long, it feels like every organ is failing, like I am having the equivalent of a heart attack in every organ. My whole body feels as if it is in crisis and really struggling, my heart most of all. It feels like my heart is under immense pressure and not dealing with it well. It will thump very forcefully or do a strange type of fast fluttering motion. The heartbeat also seems to be very irregular. It feels like a heart attack. I feel incredibly ill, as if I might drop down dead right then and there. My head feels the wrong pressure and as if it might burst, as does my whole body. My thinking is affected too; I can’t think at all, sometimes I can’t speak in sentences any more, or at all. It feels like my body and brain are in a state of shock from lack of blood flow.

Each time this happens very severely and I feel that death could be a possibility, I wonder if I should call an ambulance. (A large percentage of the deaths from M.E. are cardiac related, so this is not an irrational fear). I try to weigh up whether I might regret not calling an ambulance in a half hour or so when it might be too late with the fact that if I do call one the trip is guaranteed to set my health back severely for 6 months or more (and my cardiac problems will be made a lot worse), and that I might not actually get any medical treatment anyway even if I do go. (Which is what happened the one time I did call for an ambulance and go to the emergency room. See: Emergency room, 2004 )."

"If you have the orthostatic intolerance of M.E. but have not yet been correctly diagnosed as such, you learn very quickly, or your body does, how to stop yourself passing out from it; there is a bit of a knack to it. (I was only correctly diagnosed as having orthostatic problems 6 or 7 years after I became ill and the symptom started, in all the years before that my doctor had unfortunately misdiagnosed them as being ‘panic attacks.’) If it was one of the ‘milder’ attacks I eventually worked out that I could stave off the worst of it by rocking backwards and forwards on my feet and then changing the way I was standing a lot, or by leaning all the way forward onto something. If it was a bad attack however these strategies weren’t enough and I’d have to crouch on the floor leaning all the way forward as much as I could, while also changing position and fidgeting a lot, to keep from blacking out.

A brief note on driving a car while so ill: If I could go back in time and know then what I know now I would NOT have continued to drive in this condition and to and put myself and others on the road in such potential danger. But at the time I couldn’t justify to myself (or my family, friends and doctor) not driving because I was (supposedly) anxious and depressed and lacked motivation – my misdiagnosis at the time. I was told by my doctor in no uncertain terms that only willpower, pushing through my symptoms and forcing myself to do things – no matter how ill I felt or what symptoms I had – could or would get me better. I was very physically ill at the time but I had no problem at all with motivation or willpower, unfortunately. (I’d have been far better off with LESS willpower actually. I did myself so much permanent bodily damage pushing on through all the hellish symptoms so hard and for so long.) The doctor who gave me this bad advice has so much to answer for. I don’t think it’s an exaggeration to say that she ruined my life. If a prescription drug had anything like the appalling track record exercise has with people with M.E. (or really, even 5% of it) it would be a huge worldwide scandal. The drug would be immediately banned and serious criminal charges would be laid. Yet the rate of people with M.E. recommended or even forced to exercise continues to rise, with the full support of government etc. It is a gross violation of basic human rights. (See Smoke and mirrors for more information.)"

"If I am upright for too long I also get Raynaud’s type symptoms. My feet and lower calves start turning very pink, then they go purple with very clearly defined white spots all over, and then they go blue. They really burn and tingle painfully when this happens and it gets worse the longer I keep myself upright."

"Sometimes after severe exertion I get a strange and horrible sensation at the back of my head, as if I had lost all the pressure in my head in that area. It is like suddenly feeling as if I had been hit in the back of the head, where the base of the skull meets the top of the neck, with a shovel. It feels as if the blow has caved in the back of my skull and that all my blood and bits of my brain are draining out down my back. The sensation is so powerful that I often find myself automatically raising my hand up to cover the ‘hole’ I can feel in the back of my head! I also experience a marked loss of intelligence and cognitive function with these attacks. Years after I started getting these awful attacks I found out that this is the part of the brain that is most damaged in M.E. (the lower parts of the brain near the neck and the spine, the brain stem etc.) and that made so much sense to me. I felt like I knew that already, because of these attacks. (I’ve heard many other M.E. sufferers describe this same sensation, in response to the same stimulus.)"

"From the first day I became ill and every day since then for the last 12 years, I haven’t been able to think a single thought in the normal way. Because of the way my brain was suddenly damaged, thinking is now a completely different process than it used to be, even if sometimes the outcomes may be the same or similar. Normal thought lets you think of more than one thing at a time. There is a kind of ‘holding area’ or ‘working memory’ part of the brain (or function of the brain) where you can look at, and analyse, a variety of different thoughts and memories at the same time to actually work things out. To think. It lets you hold 2 or 3 or 5 or more different thoughts in your mind at once so that you can compare them to one another, and also see if anything you’ve learned in the past is relevant and perhaps apply one of those ideas to the problem as well. You can jump from one thought to the next, to the next, and back again. You can think of A and B, and then combine the best elements of both to get C. Then you can think about it some more and come up with options D and E, but then decide to do back to C after all when you recall a situation in the past where this sort of strategy worked really well and where a strategy similar to D failed spectacularly. When you have a normal ‘working memory’ you are easily capable of this kind of complex thought.

Usually when I ‘think’ now however, I just make do with my single train of thought. I’ll think of a problem I need a solution to and an answer will just pop in my head without there being any conscious thought process. I can’t analyse what I’ve come up with at all, I just have to go with it. I don’t have the ability to think about something for a longer time period and come up with a better answer; my first answer is often my only answer (if I can come up with an answer at all). If I try and see if I can come up with another solution or think through the one I already have, nothing happens. My brain just goes blank. (It is the same with memory. I either immediately recall something or I don’t, thinking about it harder and longer just doesn’t give me any more memories than I had initially.) I can come up with good ideas sometimes, (and remember things accurately sometimes), but I can’t actually ever THINK like I used to. I am incapable of the kind of complex thought that I took for granted before my brain was damaged – except in small amounts and with a lot of hard work. I miss having a normal brain more than almost anything. (The fact that I have objectively measurable changes to my brain – typical of the damage known to occur in every person with M.E. (and which must be present for the diagnosis to be made) – has been verified by an MRI scan of my brain; see Testing for M.E. for more information."

"I can sometimes remember the most random facts but I very often also forget common words I’ve known and used for decades etc. I come up with a lot of ‘can we have the thingy from the thingy today?’ type sentences. I’ll say, ‘Can I have a ….? Not a spoon or a knife, a… ? Yes, a fork! Thank you!’ I just forget really simple words a lot. I also substitute strange words for other words sometimes too. I might say, ‘I’ll heat that up in the radio…what? Oh, yes, microwave, that’s what I said wasn’t it?’ I feel only marginally in control of what words come out of my mouth; sometimes my brain will substitute one word for another and most of the time I don’t even realise I’ve done it. Yet 10 minutes later I might be able to remember (and accurately quote) a weird or trivial fact I saw on TV several weeks ago that is perfectly relevant to the conversation and which everyone else has long forgotten. My memory is very deficient and damaged in a number of different ways and is always unreliable. But a small part of the very good pre-illness memory I had still works sometimes (albeit quite randomly and only for very short periods of time)."

"My cognitive abilities, at a glance, may seem to be quite contradictory as I am able to do some very difficult tasks but unable to do many seemingly simpler ones. The reason for this is that with larger and more complex tasks I find I can easily break them down into many much smaller parts until the tasks are so small that I am able to complete them, bit by bit over a long period of time. Many seemingly simple tasks however, cannot be broken down into smaller parts and done over a longer period of time and so I find them very difficult or even impossible to accomplish. For example, the simple task of making myself a cup of instant coffee is intellectually beyond me now yet I can put together logical and complex, fully researched and referenced essays on my website. I’ll explain:

"I read an interesting comment recently about how people with M.E. need mental micro-rests to be able to cope cognitively. This really helped explain a number of weird things I had been experiencing, for example: When I listen to the radio in the morning occasionally (to block out the noise that woke me up so I can go back to sleep) they’ll do a quick nationwide weather report every half an hour, and I just hate it! They read out the details for each city really fast and with not even the smallest pause between words, to get through it quickly. (‘Adelaide 27 degrees and sunny Hobart 21 degrees some showers in the morning clearing in the afternoon’ etc.) My brain struggles to take in so much input with no breaks or rests, it feels completely overloaded and overwhelmed to the point of a seizure of some sort. I feel more and more unwell as the uninterrupted audio input goes on and soon I find I cannot move at all; my brain is using 100% of its capacity to cope with the audio input and it feels like there is nothing left to be used for anything else, like controlling movement etc. This means that I can’t get away from the noise or turn the radio off! When it finally stops my brain feels totally burned out, like it just blew every fuse. Yet listening to someone talking on the radio at a normal speed etc. is fine and I can often do so for up to an hour with few ill effects.

"Every now and then suddenly I’ve lost my train of thought and it is as if I had just come to after being unconscious. There is a sudden FLASH of regained consciousness. I can’t feel my brain stop working, all I am aware of is the sensation of when it starts suddenly working again, of when I ‘come to’ again and for a second don’t know how I got where I am or what has happened in the minutes before or that day etc. This is what I need those ‘micro-rests’ for I suppose, so my brain can go ‘offline’ every now and again. Although more often than not my pre-flash thoughts do come back to me, sometimes I completely lose my train of thought when these flashes happen and it never returns.

"I cannot wear loose-fitting shirts or tops – they make it difficult for me to walk, strangely enough! I used to be able to walk pretty much automatically. I was, like most people, not aware of any conscious mental effort that went into it. But that has changed since I became ill, and now my walking is ‘manual’ and a large part of my brain has to be free to think through each step. (Most often this is unconscious thought, unless I am really struggling.) When there is a distraction, I forget how to walk. I just can’t mentally work out how to walk, or how to make my legs obey my commands. Things like noise, movement in my visual field, bright light, or even a baggy shirt moving against my skin and then away again as I walk are enough to overwhelm my brain and stop me being able to walk. This is also why I must always tie my hair up, with not a strand left free. If I walk with my hair down the thought process is; step, step, step, (pause), hair, step, hair, (pause, difficulty taking next step), hair, hair, hair – and then all I can think of is the way the hair feels falling on and off my shoulders as I walk and I can’t walk any more. I can only think of one thing at a time and now that walking counts as a thinking task I need to remove all distractions when I walk or else I can’t do it at all. (My intellectual abilities also suffer markedly when there are distractions, anything to do with memory or thinking in particular.)"

"I sometimes forget how to do simple tasks. The phone might ring, for example, and sometimes I can’t remember what I am meant to do. I can’t remember if I am supposed to speak first or wait to be spoken to, or what I am meant to say if I do speak. I often can’t remember that I have to pick up the receiver first, or even HOW you pick up the receiver. Sometimes I’m lucky if I even get that far and I just go completely blank and can’t even remember vaguely what I should be doing or even if I should be doing anything when the phone rings. Making calls can be just as impossible sometimes. (I’ve heard many different M.E. sufferers describe this exact same intermittent inability to remember how to use the phone, or how to even lift the handset of a phone. It seems quite common.)

"Sometimes I can’t understand speech. I get severe attacks of this symptom (where I can’t understand any speech at all) with severe exacerbations of my illness, and also just randomly sometimes, but I also suffer from this problem at a lower level constantly. I used to sometimes get a delayed version of this language problem too. Someone would say something to me and because I couldn’t understand a word of it, I’d immediately ask them to please repeat what they’d said. The person would start to do so, but then a few minutes or so into it I’d instantly understand exactly what they’d said the first time. I’d automatically interrupt them and say ‘oh yes I know’ and then respond to what had been said. It was like the decoder in my brain was stuck on a one or two minute delay. It wasn’t that it was slow; I would understand nothing then suddenly understand every word instantly in a second. Unsurprisingly I got a lot of very strange looks when this happened as people just didn’t know what was going on any more than I did at the time. It was embarrassing but I couldn’t help it or find any way to stop it happening. Thankfully now that I no longer overexert myself, I only suffer with this symptom at a lower level most of the time."

"Sometimes I also can’t remember how to speak, how to form words. I can think the words in my head, but intellectually I can’t work out how to verbalise them. There is nothing wrong with my voice, but the part of my brain that turns thoughts and words in my head into spoken words is just not working. Sometimes I can speak but it is very difficult. At the moment I have two main windows of opportunity each day to talk. One is in the late afternoon for about 15 to 30 minutes, the other is early in the evening, around 7.30 to 8.30pm. At these times I can talk quite normally if I am well-rested enough. (As long as there are long pauses in the conversation and I don’t have to think very much about what I am saying). Most days I manage to talk and be in company for a little over an hour a day all up. (An hour is much more than I used to be able to talk for many years previously. For several years I spent almost all of each day silently by myself, and with only an hour once-a-month (or less) internet access. I could speak only a few words or sentences a day during a lot of that time. Most days I’d probably only have company for maybe 10 minutes a day or less. It was terrible.) I still wish I could talk a lot more now (especially with my friends on the phone sometimes, or ever) but I am a lot better now than I was at least, thanks to less forced overexertion and more rest each day."

"Aside from the need for constant cognitive micro-rests, the other reason that I find phone calls so much harder than face-to-face communication is that I am far more disabled with my audio capabilities than I am visually. (Perhaps this is because I was (and am) a visual artist and designer and spent much of my time honing my visual skills before I was ill?) The difference between my audio and visual capabilities is so large that my brain automatically uses my visual skills to help make up for my lack of audio interpretation skills. Analysing body language and facial expression and lip reading helps me work out communication far more easily than just trying to listen to the words alone."

"When I can talk, sometimes I talk very fast. I am not well enough to talk most of the time, but sometimes I’m forced to talk anyway (or I force myself) by calling up a huge surge of adrenaline. When I’ve done this I often talk very fast, and I’ve been told that I kind of babble. If I am talking this way, it means that I am very unwell, and have been operating far beyond my limits which means that I will be very ill and suffering immense payback for doing so in the near future. Conversely, if I’m talking fairly slowly (or at a normal speed), my speech is a bit slurred and I forget a lot of words, then that actually means I am doing really well health-wise! It means I am actually well enough to talk naturally, without calling up a big adrenaline rush, and without paying for the conversation with a day or week long (or longer) relapse. This is counter-intuitive on the surface of things of course so people are always making incorrect assumptions about the state of my health because of it. I am always being commiserated with when I'm doing quite well physically (relatively), and congratulated on my health when I am about as ill as I could be and am imminently headed for a hugely painful and prolonged relapse."

"I’d always been able to do calculations in my head fairly effortlessly pre-illness. Now even very simple additions and subtractions are very difficult or even impossible for me to work out without writing them down and really taking my time over them. I make a lot of silly mistakes when doing simple calculations too, even if I have written them down. Often these mistakes involve simple one or two figure additions and subtractions (particularly subtractions)."

"Like so many other things, my handwriting also changed completely when I became ill. (As is known to happen with an acute brain injury such as M.E.) When I am very ill, I cannot write at all, not even a few words."

"I have similar problems with reading as I do with understanding speech. Many times I’ve looked at a page of text and not been able to decipher any of it. At other times I can read the individual words okay but I can’t make the meaning of each sentence or paragraph sink in, no matter how many times I re-read it. My biggest problem with reading however is not with reading the words themselves, but that I can only read things which don’t force me to think too much. I can read a light (but intelligent!) novel for a few hours at the right time of day (after midnight) with few ill effects yet become ridiculously ill for many hours after reading a non-fiction book for only 10 or 15 minutes. I have to be so careful with a non-fiction book because before I know it I can have caused myself a huge worsening of my symptoms that can last for many days. I can only very rarely, and at times when I’m feeling much more able mentally than usual, read a non-fiction book and even then it must be done slowly over many days and I still can’t do it without making myself a lot sicker. But even with light reading I still have to really limit how much I read and I can’t read anything like as much as I used to pre-illness."

"Sometimes I can’t recognise faces, I have facial agnosia. You don’t immediately look at a face and know whose it is, the information must be sent from your eyes to your brain for interpretation first. Scientists now know that there is actually a specific area of the brain devoted solely to the recognition and reading of faces. When that part of your brain isn’t working properly or is damaged, you get facial agnosia. I have had a handful of full-blown attacks of facial agnosia where I haven’t been able to recognise close family members or friends. Mostly though, facial agnosia is a problem that I have constantly at a lower level but as with some of the other neurological damage, I’ve found that I can use my general visual literacy skills to compensate for it to a certain extent. One of the main ways I do this is by recognising people primarily by their hair, or other easily discernible obvious feature instead of by their face (for example particular clothing, a mole or freckles, a big nose or big eyebrows etc.)."

The skin on the tips of my fingers is quite unusual. It is very thin and my fingertips are very red and shiny. The skin is also very delicate and gets torn very easily, so I have a lot of little scars on the tips of my fingers. Because the skin is so very thin there has been some loss of the depth of my fingerprint ridges and so the fingerprint is far less pronounced. I suppose this is the destruction of fingerprints I’ve heard M.E. experts talking about for years."

"Sometimes I get what I refer to as a cold fever. I wake up, and straight away I know that I’ve woken up ‘wrong.’ I can feel that something in my brain isn’t functioning as it should. I soon start to get really cold too. It gets steadily worse and I become colder and colder. The coldness starts to become painful and to be so severe that it is all I can think about. I am rigid with the cold and I shiver and shake. I get colder and colder still, and then suddenly I can feel the coldness not just all over in the usual way but deep in my bones. It feels as if my bones are made of ice. But then things change again and my skin and the flesh around my bones starts to feel very hot and feverish. I’m hot and feverish on the outside but still frozen solid on the inside. Then my brain starts to become hot and feverish and feel like it is slowly boiling in my skull and I become somewhat delirious. I’m delirious, sick and poisoned, very cold and very hot and feverish all at the same time but in different parts of my body. I’m still locked up physically and can’t move so I keep the blanket on even though by now I’m sweating profusely. After about 20 – 30 minutes of this, the delirium has become a lot worse. Finally the delirium gets so bad that I black out.

"The shirts and tops I wear have to be made of thin breathable fabric and sleeveless. I wear the same tops all year round, regardless of the weather. This is because I am very sensitive to heat, on the top half of my body especially. Feeling even a little bit hot makes me feel far more ill. I feel slightly less ill when I’m cooler too, less nauseous and poisoned.

I do feel the cold in winter, but if I try to wear a jacket to warm myself up, it just doesn’t work. It feels nice and warm for a short time (if I’m lucky), but before long it makes me feel either very hot or very cold – much colder than I would have been if I had never put it on in the first place. My internal thermostat is broken, it feels as if I have to regulate my temperate manually and there is only a very small window between too hot and too cold so it is quite complicated. But what makes it even more complicated is that different parts of my body regulate temperature differently to others. So quite often I might have a cold pack over my eyes to help cool my hot and feverish head and at the same time have a heat pack on my back, and thick pants, socks and a blanket covering my lower half. Even then my head will still feel very hot and my feet will be really cold. Often I can’t even tell if I’m hot or cold because I seem to be both too hot and too cold at once. This affects me the most at night because it makes it so hard to go to sleep. I have to take my blankets on and off every few minutes because I feel either very cold, or very hot and sickly every few minutes."

"I can’t tolerate hot weather at all. It just makes me feel so ill that I might as well have spent the day running. I feel ill and poisoned and all my symptoms are made worse, especially all my cognitive problems. It feels like the heat melts my brain. Very hot days are the worst but even warm days can be pretty bad."

"Extreme sensitivity to noise was for years one of my most debilitating and painful symptoms. When it was at its worst what used to happen was this: When there is a very loud noise, I forget everything I was thinking or doing beforehand and I am surrounded by nothing but pain. Each second seems to last for an hour or even a day. I can't remember anything I've said or seen that day or in the previous weeks. The noise causes such neurological disturbance and overload it seems to dissolve all my recently laid down memories so that I am unable to access them while this attack is happening, or at any time after it. I lose those memories completely. I also forget how to walk, talk and also to understand speech while the attack is happening. It feels like every cell of my body and brain is just screaming. I’m in unbelievable agony but unable to work out who I am and what is happening, or how to stop it – my brain is completely overwhelmed with the pain and the seizure-like effects.

Eventually the noise stops. Often I’ll be told later that it only went for about 5 minutes, though to me it felt like about 3 days. I usually can't really remember much from before the noise, or remember what it's like not to feel this ill. Often I can barely remember my own name, but worse than that, I can’t remember who I am - what I like, what I think, things I've done, what's important to me, anything. This is more pain than anybody should have to go through ever. It feels inhuman. (This was a condensed version of my A day in the life of severe M.E. piece, click on the link to read on). That is what happens when there is very loud noise. But even very small noises are so difficult to cope with now as well. I just get so ill and so much pain from even low level noise. Loud noises hurt but noises of a certain pitch hurt too. High pitched noises like pouring water are just excruciating. Anything to do with water hurts; the sound of a tap being turned on, the whine of water going through old pipes, the sound of someone pouring a glass of water. This problem with tolerating noise played a big part in making my life a living hell for years. Thankfully, my family are now very good at warning me so I can leave the room if they are going to use a tap or a blender or something else noisy and just being more quiet generally – 99% of the time anyway. Their efforts to be considerate of my health needs in this area has raised my quality of life enormously in the last few years. (I wish everyone with M.E. were as lucky.)"

"The pain in my ears from noise can be so intense that I can feel the pain radiating out from the ear about 10cm all around. (Maybe it is just too much pain for one ear to deal with!) It can be real 10/10 pain this ear pain, it is just excruciating. It is pain that I’ve described before as ‘being eaten alive by a tiger would NOT hurt more than this does’ type pain. It really is that bad. Sometimes all I can do is cry because of the sheer intensity of it. I can’t speak, or think, just cry in pain. It feels a bit like skewers being jabbed in your ears, and then there is the seizure-causing aspect of the noise on top of that as well, from the neurological over-stimulation (ie. low level seizures). Even quite little noises can cause extreme levels of pain, especially if they are constant or of a certain (high) pitch. For years my most desperate wish was for access to a soundproof room. That would have been heaven for me. It still would."

"Even low levels of light hurts my eyes. It hurts right away but my eyes also continue to burn afterwards for the rest of the day if the light was bright enough or the exposure time was long. But it isn’t just that my eyes are affected, I feel like I just ‘wilt’ under bright light (or even in moderate light that lasts for a while including looking at TV or computer screens). My brain become overloaded (like a low level seizure) and I can’t think, and sometimes it even makes me quite confused mentally. All my neurological problems become a lot worse too, including my problems with balance and co-ordination. It is like my brain is just using everything it has to cope with the light and there is nothing left for doing anything else. I also become physically weak and unable to move in bright light. It makes me very ill and far more disabled and less capable of managing even simple tasks. It seems to exacerbate my cardiac problems too. (This problem is made about 10 times more severe when it is a fluorescent light that is involved incidentally, instead of daylight or light from a normal globe.) I’ve spent the last 6 years almost entirely in a very dimly lit room."

"I’m very sensitive to movement and vibration. Just like with noise and light, too much movement or vibration is unbearable and makes me very ill for long time afterward. This makes travelling by car either impossible, or if not impossible at least very unwise. One of the last times I pushed myself to travel was to attend a medical appointment. I really shouldn’t have done it, I was just too ill. The drive there was hell, and the drive home was even worse. When I finally got in to see the doctor I was so ill I couldn’t speak a word, I couldn’t move the muscles in my face and I could barely understand anything anyone said to me. So it was pointless in the end anyway, and then I spent over a month much more ill than usual recovering from it all.

"I often experience similar movement and cognitive problems as with a cold fever if I let myself sleep in the afternoon. An afternoon nap is anything but refreshing for me now. Even just 20 or 30 minutes of sleep in the daytime makes me feel terrible neurologically, like I’ve had a small stroke. I always feel much worse than before I did it. I always go to bed feeling far better than I do when I wake up too. I don’t know what happens exactly when I sleep but I am at my worst physically, just after I have slept. (Studies have shown that people with M.E. don’t go through all the stages of sleep properly, they miss out on some of the deeper stages of sleep. I’ve also read about small seizures occurring during sleep in people with M.E. But it seems unlikely to me that these are the only problems.) I can’t not sleep though as if I do that, if I get even a little less sleep than I need, I am even more ill; very much so.

"I feel ‘wired’ a lot of the time, particularly after I have been too mentally active or been subjected to a lot of sensory input. It’s a brain state that feels like the exact opposite of fatigue. It feels like a constant low-level seizure, like all my neurons are constantly over-firing. Too much (even very little) sensory input can make it a lot worse, and so can thinking much at all. It feels like my brain is frying. It’s horrible, and the severe version of this symptom can last for days, weeks or months at a time or longer. This brain state makes resting really hard – it makes me feel anything but restful or relaxed – but resting is the only way to make it go away or at least to improve it significantly. It takes a LOT of resting to really see an improvement too, which is just so annoying and frustrating. But even with a lot of rest, I’m always stuck with this problem at a low level. It’s just constant, and quite unpleasant even at a low level. This symptom makes getting to sleep really difficult a lot of the time too. (This symptom is undoubtedly a type of seizure)."

"Every day for many years I would wake up with sleep paralysis. When this happens the first sensation I’m aware of as I wake up is stillness. Everything feels too still. My brain quickly becomes fully awake, but my body feels as if it is still asleep. I can feel a strange lack of coordination between my brain and my body, as if they aren’t connected properly. (It isn’t that I can feel this communication when it is working, this is something you can only really be aware of it when it isn’t working.) I also feel quite dizzy and vertiginous (as I always do when I am in darkness or have my eyes closed). With great concentration and effort I try to open my eyes. I can only manage to open then a little bit usually, but it is enough to stop the room spinning and so I feel immense relief. The light hurts my eyes, and they burn, but I can’t close them for long or the vertigo will come back. I try to move myself out of bed but no matter how hard I try nothing moves. I have sleep paralysis. It feels like my body isn’t mine anymore. I lie there working on keeping myself calm, knowing as I do that worrying about the situation or thinking about it while it is happening will only make the experience feel even worse, even scarier. The feeling that I need to urinate quickly becomes quite bad and after about 5 or 10 minutes I feel that I cannot hold on too much longer. Then I start to feel very weak and dizzy from lack of food (hypoglycaemia). More time passes this way, perhaps another 10 minutes, until the next thing I know I’m waking up again having fallen asleep once more.

"I wake up in the morning, completely alert. There is no sense of waking up slowly, no period of sleepiness or drowsiness at all. I don’t wake up feeling or functioning at 100%, I wake up physically and neurologically impaired of course but no part of this impairment is sleepiness or drowsiness or anything similar. When I go to bed at night it is the same. I go from being completely alert to being asleep with no discernible change in between. I wake up feeling hot and ill and in pain and there is no point staying in bed any longer than I have to as it just feels sickly and hot from me being in it all night and I want to get up and dressed as soon as I can, even if it is just to go to my day bed.

"It wasn’t always the case that M.E. made me alert all the time. When I was first ill, I still didn’t get drowsy or fatigued but I didn’t become fully conscious and alert so quickly either. I used to have a lot of difficulty maintaining consciousness. When this happened I’d wake up feeling ‘wrong’ neurologically and unable to move, then I would become unconscious again soon after. I’d wake up again a bit later still feeling wrong but somewhat less so, but I’d still be too ill to get up and then I’d pass out again. This could continue for half the day sometimes, and often did. (Sometimes, at my worst, I would do this on and off all day.) It was a real difficulty or inability to maintain consciousness, something not at all the same or similar to being sleepy, tired, fatigued or exhausted. The periods of full consciousness would most often get longer and longer until finally I would be able to get up and get dressed, eat and move myself to my day bed. (Although some days I would only have about 3 or 4 hours of consciousness.) This symptom has changed for me over time, but never have I experienced morning fatigue since day one of my illness."

"My sleep/wake cycle is completely reversed. My body now thinks the appropriate time to go to bed is 9am. I found out that this symptom had got this bad when I ran out of melatonin capsules a few years ago. (Melatonin is the hormone that regulates sleep and like many with M.E. I take it to help me get to sleep at a more reasonable hour). It was hell, I’d go to sleep at 9am (after lying there for 8 hours) and wake up around 7 or 8pm, but wouldn’t be well enough for any type of conversation until around 10pm – just when everyone else in the house was going to bed. Melatonin is essential. It lets me get to sleep at about 2 or 3am usually which works pretty well for me. My body functions at a much lower level if I get up any earlier than I do. I also have these same problems if I am woken up early or unnaturally and if I can’t get back to sleep. I feel terrible and ‘off’ neurologically and cognitively all day (a bit like I’ve had a small stroke), and far more ill if I’m not allowed to wake up naturally and get as much sleep as I need."

"On a good day I can easily move something moderately heavy for a short amount of time, for example move a small set of drawers, or even a bigger unit of shelves, or a 10kg (22 pound) sculpture even – from one end of my room to the other. But I am always unable to do even a very light lifting task repetitively, such as lifting a soup spoon enough times to eat a small bowl of soup for example. If I try such a repetitive task it leaves me in a bad way; I can’t move or think for hours afterward, all my symptoms are made worse and my arms are often useless for several days (or longer). Sometimes all my muscles just twitch afterward too, quite visibly (or sometimes just one particular muscle will twitch all by itself). There is also a lot of pain in the affected muscles for a long time afterward. In contrast I feel almost no ill effects at all from moving the much heavier furniture for a full minute or even three minutes. I have a fairly normal amount of muscle strength to begin with, but my muscles very quickly become weak or paralysed after repetitious actions, even small ones. I can far more easily lift something heavy once or twice than lift something light 10 or 20 or more times. The recovery period for my muscles is very long. They don’t recover in a few hours like they used to (like normal muscles), the recovery period is now measured in days (3 days or more is fairly common, depending on the level of overexertion)."

"The muscle problems I have affect all my muscles, including the muscles in my eyes. I usually start the day off (unless I have not been resting enough in the weeks beforehand) with fairly normal vision, but by the end of the day I need glasses and even then I often can’t make my eyes focus enough to see anything clearly. Sometimes I also discover on waking that I can’t see properly. My vision is blurry and I can’t focus. I get this problem with my vision when I have used my eyes significantly too much the day before. When I have read a book, watched TV, or been on the computer far, far longer than my body (and the muscles in my eyes) can handle. I now know to be far more careful with my activity levels so I can avoid this horrible problem, thankfully."

"It can only ever be counterproductive to go beyond your limits if you have M.E. A lot of people (some of them doctors, unfortunately) think this means that so long as we don’t do aerobic activity that we’ll be fine, and that any type of stretching will be well tolerated, for example. This is just not the case, even gentle stretching can cause severe problems and relapse in people with M.E."

"The muscles around my lungs are very sensitive to touch. Even a gentle touch can be excruciatingly painful and make them go into spasm, making it very difficult for me to breathe. I can take only very shallow breaths and I can’t get enough air. (The whole back area is affected but there are also two clearly visible, small lumpy areas – about mid-back and either side of my spine – that are especially sensitive.) It is pretty scary when this happens, especially when it gets to the point that I grey-out from it, as I have done many times in the past. I also get very short of breath sometimes after very minimal activity such as 2 or 3 minutes of walking. Sometimes I become short of breath when I am resting too. (Incidentally, this isn’t happening because I am unfit or deconditioned. Research has shown that this is actually primarily a metabolic or mitochondrial problem affecting the muscles around the lungs.) This problem also affects me at a lower level constantly. I breathe far more shallowly that I used to."

"I have numbness and tingling in the extremities; in my feet, my hands, sometimes my arms, or the top of my head or one small area on one side of my nose."

"Sometimes I wake up and there is a feeling of intense pain in all the bones of my body, all at once. I feel as if I had fallen from a multi-storeyed building and landed on my back; not just breaking but crushing every bone in my body into tiny fragments all at once. It is utter agony. I can feel the pain in and around every bone. Moving makes it worse but so does staying too still. I also get another version of this where my bones feel fine but suddenly all my muscles really hurt and feel very tender. I feel bruised all over, like I’d been beaten up the day before and was just one big bruise. (I also have this sort of pain at a lower level, pretty much constantly.)"

"When I have been doing too much thinking or too much physical activity, sometimes the skin on my face just burns. The skin feels tight and just raw. My eyes burn too, it feels like my face has been cooked. Sometimes I get shooting pains in the veins of my upper arms, and in my lower legs. I can feel where certain veins are and it is usually the same veins each time that hurt. It is really painful sometimes."

"Another symptom I had for only a few years in the early years of being ill was the ‘claw.’ My hands and wrists would form a ‘claw’ and become locked in that position, all curled up and painful. It was as if all the tendons had shrunk and my hand had become paralysed in that position. I’m really lucky my ‘claw’ was only a mild version, and fairly short-term. (I know of several sufferers who have had this problem get worse and worse until they need splints to keep their hands or feet straight. I even know of one case where the bones had to be broken to get them to become straight again and to fit into the splints.)

"I don’t suffer from (organic) anxiety as part of my illness as some sufferers do. Nor do I have depression. But that is not to say my personality and the way I express myself has not been affected by the illness, of course it has. That it could be unaffected would just be impossible considering the amount of damage to the brain caused by M.E. (Because of course the emotions are controlled by certain parts of the brain, just like the ability to speak or to interpret images are and so on – they aren’t controlled by a shiny ball of golden light, or by your ‘heart’ etc! They also depend to a large extent on your cognitive abilities; your ability to think complex thoughts and your memory. When your cognitive abilities change profoundly, so too do your emotional responses and personality to some extent.)

"I feel poisoned almost all of the time, and much more so when I have overexerted myself, or been forced to do more than I should. I feel poisoned, ill and sometimes also very nauseous. When it is really bad the smallest thing makes me feel as if I will throw up – even someone just mentioning food. (Even food I really like, or used to). If I have to eat, I would much prefer to stick to only fairly bland things like toast and crispbreads, mashed potato, porridge, muesli and other cereals, pasta and rice, all types of bread, plain sandwiches, fruit smoothies, milk drinks and yogurt etc. but I am intolerant of ALL these foods in some way unfortunately, which seems completely unfair!"

"Eating is quite complicated for me now. It also takes a lot of planning. Food I eat has to run the gauntlet of:

• Food has to not make me so nauseous I can’t get it down.
• Food has to be easy to physically eat.
• Food has to be easy for me to digest. Eating raw vegetables just hurts so much, they are so hard for my stomach to digest; partly due to the lack of blood flow to the stomach in M.E. It feels like I’ve eaten a brick when I eat raw vegetables.
• Food has to be something that I am not intolerant or allergic to. (I have a whole host of new allergies and intolerances to all sorts of different foods)
• Foods I eat have to be not just low glycaemic index, but have quite a low glycaemic load as well.
• Most foods have to be things that I haven’t eaten recently. (I have to have a rotation diet where I don’t eat the same food more than once in a four day period.)
• Food has to be balanced in a certain way for protein, fat and carbohydrate content.

It is no wonder that so many of us with M.E. just want food pills! Every day I have to have 7 or 8 small meals. Fasting or even having a meal or snack 5 minutes later than I need to makes me ridiculously ill (with hypoglycaemia-like symptoms). Working out what to eat and eating it takes up a lot of my day as you can imagine.

Physically getting the food down is hard too. My swallowing reflex is very weak, and so I must be careful to think through and pay attention to each swallow. If I try to swallow automatically or my mind wanders away from concentrating on chewing and swallowing, I soon end up with the food going down the wrong way making me cough and splutter or choke. Swallowing liquid is also quite difficult now and I have to really pay attention as I do it, or else I have problems. Often I am not well enough to be able to make the muscles work to have a drink until late in the evening. I also sometimes just choke for no reason, which is scary. It feels like the swallowing muscles are in spasm or paralysed or something and I can’t stop choking and coughing to try to clear it. I have to be very careful eating or drinking anything because of this problem – another reason I want food pills!"

"I had no unusual reactions to chemicals at all before I was ill, but now I react to all sorts of household cleaning products, personal care products, paints and solvents, glues, and insecticides. Far more troublesome for me however is the way I react badly to all sorts of drugs, particularly those which act on the central nervous system (the area of the brain most damaged in M.E. and from which the chief disability of M.E. arises). Some medications I can get away with by taking a much smaller dose than usual, but others I have had to stop taking before I’ve even had time to work out if they were going to do what my doctor and I were hoping they’d do, because my reaction to them was so severe. I’ve had reactions from taking 1/24 of a normal dose of a medication."

"I have different types of headaches now. They feel different to the headaches I used to get occasionally pre-illness and they last much longer. They often last several days or even a fortnight. These headaches can be quite severe and can stop me doing just about everything, especially anything involving thinking. A lot of the time they are directly related to overexertion, particularly cognitive overexertion."

"Sometimes when I’m very unwell (due to significant previous overexertion) I can’t move the muscles in my face. My eyes are wide open and stare blankly ahead, my jaw is completely slack, and my mouth is open. I can’t move my eyes normally, nor close my mouth, no matter how hard I try. I look like I’ve had a stroke, and I kind of feel like I have too. I cannot move my eyes (except to slowly open and close them), and cannot move my neck at all either so I have to move my whole body to look at anything that is not right in from of me. I really hate when this happens, I hate feeling so powerless and looking so disabled. I make sure nobody sees me when I’m like this if at all possible."

"I have a sore throat a lot; on and off from day to day and for years at a time sometimes. I get pain in my glands as well; mostly the ones in my neck, but also the ones under my arms and the ones in my groin. I knew where all these glands were, way before I actually knew I had glands there. I could just feel them. The pain in my glands can be constant and also quite severe.

I have both types of pain almost constantly at a mild-moderate level, but when I have overexerted myself, the pain in the glands in my neck especially becomes extremely sharp and severe. They feel like throbbing basketballs in my neck and as if they’ll burst. (Sometimes one side is much worse than the other.) When the pain levels in my glands suddenly go up like this it is one of my first warning signs I need to stop doing what I’m doing immediately, if I haven’t already. It means that I have overexerted myself in some way and need to rest immediately if I don’t want to make the relapse any worse. The flu-like symptoms most often remain present (or worsen) throughout the worsening of symptoms as well. (That my immune system is abnormal/deficient in the ways well documented in M.E. has been verified by objective scientific testing. One of the most marked abnormalities was in my percentage of natural killer (NK) cells. Mine were at just 3%, the normal range is between 6% and 25%. So at best my reading is half what it should be, and at worst I have less than one eighth of the percentage of NK cells that I should have. (Natural killer cells are a form of cytotoxic lymphocyte which constitute a major component