The Hummingbirds' Foundation for M.E.

The Hummingbirds' Foundation for M.E. (HFME) is fighting for the recognition of M.E.,
and for patients to be accorded the same basic human rights as those with similar
disabling and potentially fatal neurological diseases such as M.S.

What M.E. feels like to me...

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.)

Jodi Bassett

What M.E. feels like to me...

On waking up ... if you can call it that.  i am not really "asleep" in the usual sense. just a further-reduced consciousness with my eyes closed, undulating between being more or less aware of sounds and sensations.
 
then that "drifting" feeling stops and it is like the boat ran aground. i begin to feel the bodily sensations more, and a lot of them aren't good. as more systems 'report it', i become aware of the crushing feeling of sickness and a sensation of complete depletion and metabolic insufficiency at the most fundamental level. doesn't feel like things are going to come together enough for me to be alive today. want to be unconscious but can't so try to somehow modify sensations and mitigate the horrible feeling of overwhelming, poisoned, faltering, failing sickness.
 
then the hot surge hits, and i break out in a toxic-feeling sweat. i try to move on the sheets to touch cool spots, but i don't move much and it makes me sweat more and the room spin.
 
i could go on... and then there is the experience of "sleeping". each night is a nightmare battle to try and calm the heart and blood pressure,  find a way to arrange my body that hurts the least, etc etc and it pretty much goes on all night.
 
M. Beck, US M.E. patient since 1983

 

the jolt ... it is ironic that hard as it is to move around and also to sleep, right i am FINALLY falling asleep, i get all this jerky stuff.  not just normal people falling asleep things, but my arm or leg will just jerk and jump really hard a few times. i have actually hit myself in the face with my arm/hand before, it will just FLY up off the mattress and WHOMP down somewhere.
 
i am never that lively awake!
 
M. Beck, US M.E. patient since 1983
 
 
 
 
for me tv, video and film on big screen all precipitate migraine. also, anything distracts me, such as voices, radio, music..every day have photophobia and hyperacusis, etc, but waxes and wanes, and when vertigo bad all visual and auditory input is meaningless and aversive..ie the corners or walls are wavy lines, objects like a face are a large dark smudge and totally unrecognisable as face let alone as individual person, auditory stuff is extremely aversive meaningless noise..this gradually improved to early mozart compositions played very very softly being first not-aversive, then pleasant, and then later on being more or less comprehensible..anything other than mozart is aversive. one of my neurologists, when i mentioned this to him, said he had noticed that years and prescribed it for his severely ill patients..there is good scientific research on this mozart effect, eg on patients with status epilepticus..
 
operating at pre-m.e. mental level is impossible, but every now and then perhaps on average once a year for a very brief time an hour, perhaps,things work..again i use props which were totally unnecessary before, namely write everything down in my now abysmal writing ( physically malformed letters, letters omitted, reversed)..cannot even manage to follow your argument of a and b and c below, though at present, though i do recognise there is a strategy i would like to employ when i can understand how to do it and i will save this email so i can think about it hopefully and will make note to remind me to do so...before m.e. i did original formal operational thinking (yes, piaget's term comes to mind) all the time, and worked,published academically, and even was a member of a society for people falling at the 99.9%ile on intelligence tests.now having more than one person at a time to converse with is too difficult, and the level of discourse
 is markedly reduced and unfocussed..this loss i too mourn,and sympathise with you..the other pain and dysfunction somehow feel more superficial..i loved having my brain as my constantly-ready playmate.

L.F.S.


 
good description. have experienced all these at various times. almost impossible to describe to others who cannot understand the symptom complex..one neurologist said just phone me, my number is beside your bed, but in these episodes one cannot comprehend how to integrate the processes involved in calling for help, let alone make the muscles work.

  for me this eye pain scalds rather than burns, and is sharp too. one does not read or watch video, but the smallest eye-candy, such as this screen which connects us, precipitates long-lasting pain. migraine is different.

 moving forward while moving my eyes makes me lose control and fall to ground..brain cannot manage two simultaneous acts.
 
 your image of pulverised bones for me is an image of a great steam-roller having totally flattened me, perhaps a childhood fear of the noise and power..it is continuous, painful, immobilising and very distressing.
 
L.F.S.

 
 
 
thanks, jodi, for your efforts in putting this down..will try to give you some idea of how i experienced paralytic episodes later..when i read your text i say quite! because these distressing symptoms which we have to endure are hard to put into words afterwards, and impossible to formulate at the time,..these episodes for me have not been associated with sleep, they can happen at any time. i definitely do not have narcolepsy or epilepsy.

perhaps the sleep paralysis which occurs for brief periods in lots of people, is not at all the same thing as the episodes of being unable to move which some m.e. people have..mine definitely last longer than minutes, closer to an hour..a separate issue is the problem of sleeping for great chunks of the day, 23 hours out of 24..but more like a coma than sleep, irresistable and not at all refreshing, and while i am rousable and not unconscious, it is not at all like a normal sleep.
 
these things are all so much part of a group of nasty symptoms which tend to come and hang around for a period, days, months or years, and then diminish. they then come back when one has a relapse, but not predictably, and not all of them at the same time.
 
L.F.S.
 

 

My attempt to describe ME: Feeling like the entire body has a severe Migraine all over,combined with feeling like you have a severe flu (with all the nasty symptoms that go with that) and feeling very sea-sick(like being on a wobbly ship, dizzy nauseas, not able to focus your eyes, blurry vision etc ) all the time. this all 24 hours per day!!! (never a dull moment!)
 
Els
 
 
 
i feel sick ,foggy, achy, weak, dizzy, jangly but not yummy old fatigue: like you get when you have walked to the beach, or dug a garden bed, or shopped til you dropped. just thinking a bit of what i cannot do.

Barbara LR
 
 
 
[On how sometimes occasionally with ME you can do things you couldn't normally do for short periods, but only at enormous and long term physical cost]
 
i try to xplain this one in terms of money
 
ok, yoiu could buy a ferrari, coulnd't you?
 
no, i don't have the money
 
oh, but you could borrow lots of money, sell your house, talke up dealing drugs, gamble, and in the end you'd have your ferrari
 
<blank look> maybe for a day or so, before the l,oan sharks shoot your kneecaps off, and the gangs blackmail you, and you have to find a way to rerpay all that money...  could take you a lifetime
 
<rather frightened look> yeah. yioyu get the point
 
Person with extremely severe M.E.
 
 
 
Conversation between two people with severe/progressive M.E.
> DD . . .. . .. DD . . . . .DD . . . .scream   . . . . . .life goes on
> & so
> does this DD (damned disease)
 
yes, trhjat sth the problem, it keeps detetrioerating dammit deteriorartiung
 
keeps getungworse
 
always, alwayus , ons etp one step fwd, two steps backwd.
 
not the other way
 
even when you do al the right thingd, don;t get a bug, wrehare weather  dosn't change, nobody sdtresses you, no allergy atack, no negatuve  stimuinlun stuim strimulus of any kind...
 
it stil gets worse
 
i find that v frightedning when i klet msye let I let myself think eboiut it
 
 
 

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

 
 
I too am hopeful that this illness will be treated with respect and recognized for the devastating handicap that it is... CHRONIC FATIGUE????? I don't think so!
 
Barbara Gilliam
 
 
 
"Patients are united in their dislike of the term 'fatigue'."
 
Thomas Hennessy, Jr., RESCIND, Inc.
 
 

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.

M.E. sufferer

 

Lynn Michell summarises what the ME patients she interviewed for her recent book, said about the illness:

Most descriptions of ME miss the essence of it and fall short of capturing its reality. Part of the problem is the word ‘fatigue.’ It is both a red herring band a hopelessly inadequate description of how people feel. ME sufferers are not tired in a floppy, nice-to-have-a-nap kind of way, such as after the flu when bed feels good and snuggling under the covers for a few days brings a gradual return to well-being.
 
It is as if someone has frayed the ends of every nerve in the body and left them raw and exposed. It brings an overwhelming need to close down sensory input and, for many, to retreat from everyday ordinary stressors - conversation, noise, light, movement, TV - since they are agonising to deal with. Everyone said that they were not fatigued. (2003, p.24)
 
 

“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.

Ruth

 

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.

Annette

 

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.

Anonymous

 

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.

Helen

 

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.

Olga

 

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.

Submit your comment

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!)

  • Genuine M.E. sufferers only please
  • Please allow up to 6 weeks or more for your comment to appear on this page

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Live Support

Exciting book news!

Click here to purchase the first HFME book!


The book 'Caring For The M.E. Patient' by Jodi Bassett includes a Foreword by international M.E. expert Dr Byron Hyde.

He writes:

"There is so much false information that is picked up and disseminated it is near impossible to hold one’s head above the water and sift through this morass of misinformation. Any attempt to seek the truth is always a major difficulty. Somehow, Jodi Bassett and Hummingbird have managed to plow through this field of weeds."

"This is a book that deserves being read, not only by patients and physicians with an interest in M.E. but the bureaucrats in the USA Centers for Disease Control who have done so much damage to the understanding of M.E. I recommend her book to all and wish it every best success."

Paperback $18.95
Hardcover $22.95