In the new paper What it feels like to have Myalgic Encephalomyelitis: A personal M.E. symptom list and description of M.E. I described many of my own symptoms and experiences of M.E.
This page contains descriptions of M.E. written by other sufferers. (Some of which are in direct response to my paper, and others which are just general comments about the symptomatology of M.E.)
They didn’t understand that I wasn’t simply tired. I tried to explain the ‘fatigue’ to them as the ‘anaesthesia wave,’ likening it to that moment right before surgery when you realise you’re about to lose consciousness. I thought that might help them understand its severity, and my inability to ‘fight if off.’
Nadine Goranson in ‘Stricken’ (edited by Peggy Munson). p 59
The symptoms of [ME] resemble and improbably hypoxic state, so far from normal tiredness, so much more of an all-body impairment, than the word fatigue could ever convey. As Chris Norris wrote in New York Magazine, ‘If this is fatigue, its relationship to workaday weariness is as Satre’s nausea to an upset tummy. I have been tired before. This is not tired.’
Peggy Munson in ‘Stricken’ (edited by Peggy Munson). p 114
At the turn of the millennium, the public still lacks a real grasp on what ME patients are dealing with. Because of illusions that ME is simply a disease of tired people the public has large been deprived of accurate information.
Lynn Michell in ‘Shattered: Life with ME’ p xxii
[Legitimate descriptions of the illness are] a far cry from the hopelessly inadequate description of ME as ‘chronic fatigue.’ The distinction between fatigue and ME needs emphasising. If you are tired all the time, you do not have ME. If you are feeling drained following a viral illness but are recovering over weeks or months, you do not have ME.
Lynn Michell in ‘Shattered: Life with ME’ p 6
This is not fatigue. This is a state of overstimulation which results in near or total collapse. One of the things that has been shown over and over again is that biologically [people with ME/ICD-CFS] have an inability to respond to stressors [or stimulus.] Although ME is sometimes described as a stress-related illness, what stress means in this context is ‘the non-specific response of the body to any demand.’ So, while healthy people cope with the demands which assault their senses, responding appropriately to what is relevant while ignoring what is not, people with ME have lost the ability to manage the sensory input of their environment.
Lynn Michell in ‘Shattered: Life with ME’ p 28
A central problem is the word ‘fatigue’ which doesn’t come close to describing how sufferers can feel – comatose might be better. Like most people with ME I have acquaintances who say, ‘Oh I feel tired at 4pm too, and would love a snooze.’ But that’s not it. People with ME are so finished that they have to lie down. There is no other option. Minds and bodies do not function. This is nothing like fatigue.
Lynn Michell in ‘Shattered: Life with ME’ p 88
If the medical administrative staff are anything like the students they work for, they will be told little or nothing about Myalgic Encephalomyelitis (ME), the illness that has kept me largely bed-bound for the past 15 years. I’ve lost count of the times medical staff have said to me: "I don’t really know very much about ME. You get tired a lot, don’t you?"
No. I’m 35 and haven’t been "tired" in the conventional sense of the word since I was a teenager. As anyone with severe ME will tell you, it has nothing to do with being tired and everything to do with being physically ill.
On the many occasions I am unable to watch TV or hold a conversation, sit upright or walk more than a few steps, it is not because I am "tired". It is due to the fact that there is some catastrophic, metabolic imbalance within my cells that leaves me feeling poisoned and weak to the point of collapse. Muddying the waters further is the fact (sorely lamented by many sufferers) that ME is sometimes referred to as Chronic Fatigue Syndrome. Trust me, "fatigue" or "tiredness" don’t even register on the scale of how life-shattering an illness this can be. Tiredness is to ME what forgetfulness is to Alzheimer’s disease.
Sick, Not Tired by Ciara MacLaverty
The most striking feature of the illness was an incapacitating post-exercise muscle [weakness or paralysis] recovery from which is delayed for at least 24 hours, which is quite distinct from everyday ‘fatigue.’ All muscles are affected, including the heart. People with M.E. may suffer permanent damage to skeletal or cardiac muscles, as well as to the liver, pancreas, endocrine glands and lymphoid tissues. Because of damage to the hypothalamus, pituitary and adrenal glands there is not only muscle but joint pain. Pain is often extreme and intractable and many patients can walk only very short distances and require a wheelchair.
Sufferers sometimes have sudden attacks of breathlessness, problems with swallowing and voice production. Cycles of severe relapse, together with the evolution of further symptoms over time, are common in M.E. Death occurs almost entirely from end-organ damage, mainly cardiac or pancreatic failure. Because of many doctors’ determined lack of understanding, suicide in M.E. patients is not uncommon.
Martin J Walker in ‘Skewed’ p xxiv
Peterson tried to convey the quality of the pervasive symptom, calling it ‘absolutely striking – like nothing you have ever heard in taking histories before. This isn’t tiredness. This is a carpenter who says, "I can’t raise my arm to hammer," or a marathon runner who says, "I can’t make it to the corner."
Hillary Johnson in ‘Osler’s Web’ p 34
There is nothing in your experience of medical school, residency, or practice with its gruelling hours and sleep deprivation that even approaches [what] you feel with this illness. Fatigue is the most pathetically inadequate term.
Thomas English in ‘Osler’s Web’ by Hillary Johnson p 461
When I first found out what I had, I knew somebody was trying to hide something -- chronic fatigue my ass!
Terry Sweet, M.E. sufferer
I don’t understand all this talk of fatique. Everyone knows what fatigue is, tirdness, but this is nothing like either of those. It doeewnt feel the same and it also happens when you have done nothhing to bring it on it is nothing likme fatique in any way. me is nothing oike fatigue, word only cauuses confuson. Wish only hd fatigue:(
Severe M.E. sufferer
Fatigue doesn’t describe the main feature of M.E., it never has and it never will. If your worst symptom is fatigue you have a different illness.
Lynn Michell summarises what the ME patients she interviewed for her recent book, said about the illness:
“This illness is to fatigue what a nuclear bomb is to a match. It’s an absurd mischaracterization.”
Laura Hillenbrand, Bestselling author of Seabiscuit
"The proper term for my selective difficulty in dealing with numbers is "acalculia." But I prefer to believe that I multiply and divide numbers the way a new Chinese immigrant speaks English, as if I’d never really seen the alphabet before, as if I couldn’t quite form the sounds. So I think of my math as having an accent."
Floyd Skloot: In the Shadow of Memory
I have been severely affected by M.E. for the past 14 years, completely bed bound for about 10 of those years, and had between 5% and 10% of my former health for the other 4. When I read headlines saying that an exercise regime was the answer to my ill health I couldn't understand it, as every time I tried to push myself physically even in small incremental steps I would deteriorate significantly. The last time I was able to walk I managed to convince myself that I was heading for a full recovery, and so increased my activity regardless of whether I was able for it, the result of this is that I have been unable to get out of bed for the past 6 1/2 years.
Graded Exercise is the worst possible thing for M.E/CFS (strictly defined). This is not to say that anybody with M.E. should not exercise, common sense tell us that it is preferable to be as active as possible, but in my experience it is critical to stay within your limits, whether that is a 20 minute walk or in my case a tightening and relaxing of my muscles 2 or 3 times a day. Having learned the hard way in future I will be allowing my body to dictate the amount of exercise I do even though that is one of the most frustrating things about this illness.
Regarding how exercise has come to be recommended by some medics, all I can assume is that they have not read the research behind the headlines, as even a cursory glance at the methodology reveals a sloppy scientifically lame approach biased towards a psychiatric model. This is wholly inappropriate for many reasons not least because M.E is classified as a neurological disease and upon closer inspection a proportion of these researchers may benefit financially from M.E being "treated" with graded exercise.
I have done 2 GE (graded exercise) programs under supervision, both were failures. They both left me far worse off than before for a long period. The first program was at a gym and involved low-impact exercises and then second was a walking program. The symptoms got much worse (sore throat, swollen glands, sinus infections, weakness, fainting) grew progressively worse and I had to abandon the exercise. The first one was early on in my illness (ME as per Ramsay) and probably led to the illness becoming permanent.
I'm not sure I've ever been able to achieve graded aerobic exercise according to the standards set by some of the clinical studies. I haven't been as systematic at adding to the exercise in small increments over a period of weeks. But in a more limited way - perhaps 3-4 days of incremental increases - I typically found that my body was rebelling at the idea of doing the exercising. I found that it might be ok two days in a row, but more than that and it usually put me over my body's limit and I have a mild setback.
Actually I'd have to rank regular exercise as one of the most damaging treatments I've ever tried. As a stressor to my system it ranks up there with the other no-no's like not sleeping well for 3 or more nights; having an emotionally stressful event; getting chilled; and being exposed to some toxic chemical / substance.
Never had this before but my whole upper torso feels as though it is in a cramp, ive had the chest muscxles pain before but this is back and front, with indigestion on top to boot! im sure this is usual but just wondered if others had had it and what they do to get through it.
The very few times in the last 12 years when I have had the luxury of experiencing "fatigue" was when I was in one of my MUCH better days and did a little bit of physical activity, like a half hour of light housework and it was so amazing to experience something like normal tiredness, almost a pleasant feeling. Unfortunately, those times are very rare. A very strange state of affairs when to be able to describe yourself as feeling fatigue you have to be having a very good day.
Did u write the article "On the pattern of symptoms and relapses etc." sent to co-cure on Tuesday, 10 July 2007 1:57 AM?
If u did all praise to u, u did a tremendous job of describing the experience I have had with M.E.
U did it so clearly that I could sit here & say I have no doubt whatsoever that I have M.E. as opposed to CFS.
I thank you for this article as it gives me something I can show any Dr. & say "this is how it is for me" without me having to wreck myself by trying to explain it all myself.
Many thanks from Susan
For me, the worst symptom is photosensitivity. Daylight, even an overcast day; fluorescent light; even normal incandescent lighting --- send me to bed with a crippling migraine. Doctors are quick to assume that i am a hypochondriac when they find me lying down in the darkened examining room, waiting to be seen, wearing my dark glasses and hat.
Sound -- music, radio, talking -- initiate migraines. Cannot talk and open a can at the same time.
Fragrance -- I can actually taste people's perfume for hours -- I get nauseous, headachey. When my neighbor uses scented laundry products I get ill even inside my house.
PG, North Carolina
Many more case studies (and patient accounts of graded exercise programs and psychotherapy etc.) are available on the Case Studies page.
If you'd like to write your own description of M.E. for inclusion on this page, please send your submission by email.
(You could write about one particular symptom or several. You could comment on how your cold fevers, noise or light sensitivity, food sensitivities, cardiac episodes, memory problems, need for micro rests, sleep problems etc. are different to mine, or the same or similar to mine, and so on. Anything about the real symptoms of M.E. and/or how irrelevant 'fatigue' is to M.E.)
Let's tell the world about the real symptoms of M.E. (and create descriptions of the illness that fellow sufferers will really be able to relate to!)