M.e Illness Quotes

Because doctors can’t name the illness, everyone—the patient's family, friends, health insurance, and in many cases the patient—comes to think of the patient as not really sick and not really suffering. What the patient comes to require in these circumstances, in the absence of help, are facts—tests and studies that show that they might “in fact” have something.

I can read every word of your soul, become deeply engrossed in the study of it until I've comprehended every nuance and detail. But then when I'm done, I'll discard it as easily as if it were a newspaper, shaking my head at how the ink has stained my fingers gray. My desire to know every layer of you isn't feigned, but interest isn't love, and I make no promises of forever. Perhaps I do every so often, but you have no business believing me.

I am so fed up of having to explain to people that Danny is not just tired; if only that were the case. We have lost friends, good friends, when we ran out of patience with explaining that Danny was off school so much, not because he had friendship issues or didn’t like his classes, but because he had an illness that seemed to be eating him up from the inside, despite it not really being visible on the outside.

We observe our target and strive to become a facsimile of whatever or whoever that person wants—a good employee or boss or lover. It’s not always the case that the facsimile is malicious or ill intentioned.

When I get nervous, I go to the library and hang around. The libraries are filled with people who are nervous. You can blend in with them there. You're bound to see someone more nervous than you are in a library. Sometimes the librarians themselves are more nervous than you are. I'll probably be a librarian for that reason. Then if I'm nervous on the job, it won't show. I'll just stamp books and look things up for people and run back and forth to the staff room sneaking smokes until I get hold of myself. A library is a great place to hid.

It is a perfectly normal side-effect for someone to have depression because he cannot move or function in his job. That is all that it is: a side-effect. Those with disabilities and debilitating illnesses probably have more to get depressed about than others.

The single biggest factor determining recovery and remission from Myalgic Encephalomyelitis (M.E.) at this point is undoubtedly appropriate rest in the early and/or severe stages of the illness. The importance of avoiding overexertion in M.E. can not be overestimated.

All I ask of all my friends is that they understand this is truly a devastating neurological illness and not just about being a bit tired because its way and above beyond that. One day ME will be unravelled by the many researchers working tirelessly around the world I hope it's in my lifetime!

Luckily, we are seeing less and less post-exertional malaise, the symptom that stops Danny’s body and brain recovering properly after expending any energy, even just watching TV.

Severe, persisting fatigue is a prominent symptom of Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS), but individuals with this illness frequently report the occurrence of unique fatigue states that might be different from conventional symptoms of fatigue.

Several years ago I was lecturing in British Columbia. Dr [Simon] Wessely was speaking and he gave a thoroughly enjoyable lecture on M.E. and CFS. He had the hundreds of staff physicians laughing themselves silly over the invented griefs of the M.E. and CFS patients who according to Dr Wessely had no physical illness what so ever but a lot of misguided imagination. I was appalled at his sheer effectiveness, the amazing control he had over the minds of the staid physicians….His message was very clear and very simple. If I can paraphrase him: “M.E. and CFS are non-existent illnesses with no pathology what-so-ever. There is no reason why they all cannot return to work tomorrow. The next morning I left by car with my crew and arrived in Kelowna British Columbia that afternoon. We were staying at a patient’s house who had severe M.E. with dysautanomia and was for all purposes bed ridden or house bound most of the day. That morning she had received a phone call from her insurance company in Toronto. (Toronto is approximately 2742 miles from Vancouver). The insurance call was as follows and again I paraphrase: “Physicians at a University of British Columbia University have demonstrated that there is no pathological or physiological basis for M.E. or CFS. Your disability benefits have been stopped as of this month. You will have to pay back the funds we have sent you previously. We will contact you shortly with the exact amount you owe us”. That night I spoke to several patients or their spouses came up to me and told me they had received the same message. They were in understandable fear. What is important about this story is that at that meeting it was only Dr Wessely who was speaking out against M.E. and CFS and how … were the insurance companies in Toronto and elsewhere able to obtain this information and get back to the patients within a 24 hour period if Simon Wessely was not working for the insurance industry… I understand that it was also the insurance industry who paid for Dr Wessely’s trip to Vancouver.

ME/CFS has a greater negative impact on functional status and well-being than other chronic diseases, e.g., cancer or lung diseases[8], and is associated with a drastic decrement in physical functioning[9]. In a comparison study[10] ME/CFS patients scored significantly lower than patients with hypertension, congestive heart failure, acute myocardial infarction, and multiple sclerosis (MS), on all of the eight Short Form Health Survey (SF-36)[11] subscales. As compared to patients with depression, ME/CFS patients scored significantly lower on all the scales, except for scales measuring mental health and role disability due to emotional problems, on which they scored significantly higher.

I can read every word of your soul, become deeply engrossed in the study of it until I’ve comprehended every nuance and detail. But then when I’m done, I’ll discard it as easily as if it were a newspaper, shaking my head at how the ink has stained my fingers gray.

M.E. isn't just 'exercise phobia': it is a physical illness.

I have seen three beautiful young girls in their 30's within the last few years pass away due to this illness, who not only fought their battles with this illness but who played an important role in raising awareness of ME. Yes you can die as a result of having ME if you become at the severe end of it which 25% do.

Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling condition characterized by severe unexplained fatigue and a mixed profile of symptoms such as sore throat, painful/swollen lymph nodes, muscle pain, joint pain, headaches, unrefreshing sleep, post-exertional malaise and cognitive difficulties (K. Fukuda et al., 1994).

the disabling fatigue experienced by individuals with ME/CFS differs from that associated with other illnesses or everyday activity

Many people confuse “chronic fatigue” (which is a symptom of many chronic conditions, including rheumatoid arthritis, fibromyalgia, or lupus) or “general tiredness” (which is lifestyle-related), with the specific illness “chronic fatigue syndrome” (ME/CFS). To clarify the differences, here are some of the major symptoms of ME/CFS: - unexplained physical and mental fatigue for an extended period of time - post-exertional malaise (meaning an inappropriate loss of physical and mental stamina and a worsening of symptoms after any effort) - sleep dysfunction - pain - neurological/cognitive manifestations - autonomic manifestations, such as orthostatic intolerance - neuroendocrine symptoms, such as subnormal body temperature - immune system changes, such as recurrent flu-like symptoms.

Tesco at the best of times is soulless – but it’s so much worse at 6 in the morning. It’s not as empty as I thought it would be. Who the fuck shops at 6 a.m.? e florescent lights flicker. e shelf upon shelf of coloured cans make my eyes go funny. Everything is hard and shiny and there’s so much fucking choice. Why do I have to choose from thirty kinds of granola? Do I want Country Crunch or Rude Health? Raisins and almonds or tropical? Goji berries and chia seeds or Strawberry Surprise? I’ll just buy the Tesco range – that’ll be easiest. No, wait, there’s Tesco finest*, Tesco Everyday Value and Tesco Free From. What can be so damn fine about granola? You eat it everyday and what could it be free from? It hasn’t got anything unhealthy in it! What could one possibly take out? Actually, we don’t need any fucking granola.

Malaise” is a general body discomfort or weakness, often marking the onset of an of infection/flu-like illness or other disease. Fatigue and flu-like symptoms are linked to activation of the immune system and research scientists are in the process of unraveling these mechanisms in ME/CFS.

Historically in the literature CBT [Cognitive Behavioral Therapy] was inappropriately touted as a cure for patients with ME/CFS if they changed their “belief system”. ME/CFS is a physical illness and not a psychological illness, therefore CBT cannot cure ME/ CFS. What CBT can do is to help patients cope with being chronically ill and manage their emotional reactions better so that they do not waste valuable energy on worrying or feeling guilty about things that they cannot control. We like to think of CBT as “emotional energy conservation”.

ME/CFS is a complex condition that affects every organ system in the body. There is evidence of inflammation at the cellular and biochemical levels: in the muscles, brain and spinal cord in patients with ME/CFS. The name for this illness has had a huge impact on the medical, scientific and patient communities – how it is viewed and how patients are treated by the medical community (160).

Take long steps and by all means look back, you'll see everything behind you getting smaller and eventually passing completely out of view.

Accept me as I am, so I may learn what I can become.

I don’t get a chance to answer before the high-pitched screech of the fire alarms begin blaring. Oh, shit. “What do we do?” I ask no one in particular, although likely my shower mate is the only one listening. “Do we have time to finish up?” “I don’t know.” I can hear the panic in her voice, just like I heard it in mind. “But we need to hurry.” I begin rinsing frantically, not even sure what part of me I’m washing in the rising panic I feel. A smart person would just jump out of the shower. But what if I do that and it turns out this is a false alarm? Then I’ll be running around naked and will end up reshowering. Plus, what if someone steals my stuff while it’s unattended? Then I’ll be naked while going home.

The past is all forgiven long ago, dear Ringwood,” said his sister earnestly; “it would be ill for brother and sister if the love between them could not outlive old injuries, and be the brighter and the truer for old sorrows.

Did you just take my phone from me?” “I might have,” I whisper with a smile, my tone bordering on seductive. “Do that again and I’ll hurt you,” you warn me sweetly, your fingertips grazing the sides of my neck, teasing me there. “Who says I wouldn’t like that?” “You dirty, dirty man.

PVFS (post-viral fatigue syndrome) This term was introduced during the eariy 1980s in Britain as an alternative to ME. It remains a useful description for anyone whose illness can clearly be traced back to an acute viral infection. The drawback to PVFS is that it cannot be used to describe cases where some other factor (e.g. vaccination or pesticide) acted as the principal trigger.

You would imagine that having visitors when you are chronically ill is something to be excited about. But the reality for somebody with severe M.E. is that it causes all the symptoms to flare up.