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.

Quotes by M.E. sufferers

General M.E. Quotes

Quotes by M.E. sufferers

Quotes from M.E. political discussion groups

On so-called 'fatigue' in M.E...

On the supposed role of 'stress' in M.E...

Quotes on the outbreaks (and infectious nature) of M.E.

Quotes from M.E. sufferers on the negative effects of CBT and GET

M.E. vs MS quotes

Quotes on 'Are we just marking time?'

Quotes on the problems with the so-called "Fair name" campaign

Quotes on the problems with the use of 'ME/CFS' by M.E. advocates

Quotes on the topic of 'Who benefits from 'CFS' and 'ME/CFS'?'


Before reading these quotes, please be aware of the following facts:

1. Myalgic Encephalomyelitis and ‘Chronic Fatigue Syndrome’ are not synonymous terms. The overwhelming majority of research (and articles) on ‘CFS’ or ‘CFIDS’ or ‘ME/CFS’ or ‘CFS/ME’ or ‘ICD-CFS’ does not involve M.E. patients and is not relevant in any way to M.E. patients. If the M.E. community were to reject all ‘CFS’ labelled research/articles as ‘only relating to ‘CFS’ patients’ (including those which describe those abnormalities/characteristics unique to M.E. patients), however, this would seem to support the myth that ‘CFS’ is just a ‘watered down’ definition of M.E. and that M.E. and ‘CFS’ are virtually the same thing and share many characteristics.

A very small number of ‘CFS’ studies/articles refer in part to people with M.E. but it may not always be clear which parts refer to M.E. The A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy paper is recommended reading and includes a checklist to help readers assess the relevance of individual ‘CFS’ studies to M.E. (if any) and explains some of the problems with this heterogeneous and skewed research/advocacy.

Note that the inclusion of a quote on this site does not necessarily denote support for all parts of the article it was taken from, or support for the terminology used in this article, nor total support for all articles created by this author.

In future, it is essential that M.E. research again be conducted using only M.E. defined patients and using only the term M.E. and that M.E. activism also focuses entirely on M.E. The bogus, financially-motivated disease category of ‘CFS’ must be abandoned.

2. The research and articles referred to on this website varies considerably in quality. Some is of a high scientific standard and relates wholly to M.E. and uses the correct terminology. Other studies are included which may only have partial or minor possible relevance to M.E., use unscientific terms/concepts such as ‘CFS,’ ‘ME/CFS,’ ‘CFS/ME,’ ‘CFIDS’ or Myalgic ‘Encephalopathy’ and also include a significant amount of misinformation. For more information see A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy and the more detailed paper Putting Research and Articles on Myalgic Encephalomyelitis into Context.

Quotes by M.E. sufferers

"I think it is the obsession with fatigue that allows doctors and the general public to minimise the debilitation and our inability to exercise or snap out of it.  [...] Anyway, I guess my point is that if you minimise the illness as merely fatigue then many people (including the doctors)  will see it as something you can push through.  After all we live in a society that doesn't respect listening to you body and resting when you need it - so a whole illness that encourages that behaviour has got to be just laziness.  The protestant work ethic is alive and well and does not believe [ME] is anything but mental weakness."

Tatyana, ME sufferer

 

As we all know from our experience with this DD there is a strong tendency to blame little understood illness on the victim or the victim's lifestyle (ulcers, gout and TB for example until proven wrong). My own theory is that this makes everyone else feel 'safe', that they have some control over the otherwise seeming randomness of being hit by illness (and of course it gives the medical profession the illusion that they know something in cases where in fact they know nothing).

Sue. ME sufferer

 

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, ME sufferer

 

Some disabilities are like stupidity - you can't see them just by looking.

ME sufferer

 

Conversation between two people with severe M.E.

> t is criminal....................all of it. Why do cancer kids get 20
> different cheer them up services as well as their med traetyment when
> we cant even get ttreatment, BASIC fucking
> tytreatment..................so unfair. Shouldnt matter name of what u
> have, should just care same foer all.

Absioltuely. I thjin part of it is they're so frigtened of diseas es like ours: with cancer fior cexample, you die or get vbeter. Withthis ygour in hell for indeifnitte years, it'smuch wors,e no wonder it frighteneds opeople.

so ms, me, aids, any of the degenrrative diseases, nobody wants to think about them or look at them. handgovcer from medieavel rreaction to plague, i think. and from older ideas that a sick or disabled person is cursed, still current in africa. nobody wants the curse.

least of all us <sigh>

 

[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 M.E.

> DD . . .. . .. DD . . . . .DD . . . .scream   . . . . . .life goes on
> & so
> does this DD

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


Conversation between two people with severe M.E. (after one had gone through an extremely abusive and traumatic hospital experience)

> I HATE THIS I FUCKING HAT ETHIS
>
> i should be ABLE to go to hospital and be treated by SYMPTOMS not by
> what I say is CAUSE dammit dammit dammit damnit

iot's not just abuse, ikt's thought control, brainwashing

its sicker than we are

and thats saying sth. [something]

 
 

Conversation between two people with severe M.E.

> that is exacly what ii feel "so little left of me".  scary.  like im
> disappearing under the diesaes and its turning "me' int "me".  get it?

yes, so frigygtening, its eating our bodies and somehow our spirits too, thats the worst

because who you are is how youmlive and how do w e live? scrapoing from one minute to the next

can we exprews our personalities, share our livbes, grow and develop?

instead we have to spend al we have on geting through each bit of time

its a soul eating disease  :(

 

[In response to someone who'd commented that Doctors can't be expected to be knowledgeable about every illness]

I disagree...

It's not fair for us to blame doctors for their lack of education on the disease that they are treating?  I thought that treating diseases was what doctors were supposed to do (in contrast to taking your money whilst simultaneously doing nothing)?  And that part of treating a disease was first being educated about it?

Okay, doctors cannot be expected to be specialists on EVERY imaginable disease, but if you know NOTHING about a disease and are also unwilling to learn ANYTHING about the disease, then don't treat the patient!  Don't take their money, don't offer stupid advice, don't deny the existence of the disease.

I think it is fair to blame uneducated doctors when they refuse to competently treat your disease.  I think it is reasonable that you "demand they do more"-  especially in light of the fact that they are getting paid for 'treating' you!  Who else would you continue to pay for doing nothing?

I don't think it's fair for doctors to blame US.  Too many people with this disease have been told by incompetent doctors that this disease is psychosomatic or that they will get better if they exercise, take antidepressants, ...  (insert stupid advice of your choice here) etc.  I think it's dangerous to allow complacent, incompetent and ill informed doctors to continue dispensing such advice without any criticism or scrutiny.  I think it IS fair to blame doctors for their lack of knowledge and their UNWILLINGNESS to educate themselves on diseases that they are treating.

If I had a brain tumor, I would want my treating doctor to be educated on the disease and I would want he/she to be WILLING to educate him/herself on the best way to treat me (even if it was only to investigate the best means of alleviating the severity of my symptoms).  A doctor who did "nothing" would not be a comfort to me.

If people had not demanded more, if they had accepted that "doing nothing was okay", so many diseases that are curable and/or treatable today, would not be so.  So many atrocities in the world have only been put right because people demanded more.

We can't refuse to offer drugs that help some people with ME, because of fears that some people "COULD abuse them" (emphasis mine).  If we went that far, drugs such as Sudafed would have to be prohibited.

I would argue that we CAN and in fact, we have to demand more of doctors-  it's the only way that we will get the rightful recognition and research that this disease so desperately needs and deserves.  I applaud people like Jodi for the advocacy work that they do for M.E.  Without them, we would be a lot further behind than we already are.

I am frustrated by uneducated and complacent doctors who would probably concede that they should not treat brain tumors etc.  because they don't have the adequate knowledge to do so, but who strangely enough think it is okay to 'treat' M.E.  Too many doctors think that there is no harm done if they dabble in this disease without having any prerequisite knowledge.  If you're not an expert and you want to treat an M.E.  patient, at least have the courtesy to educate yourself on the disease first-  otherwise refer the patient to someone who IS educated on the disease for treatment.

In my teaching, if a student asks me a question that I don't know the answer to, I am always more than willing to admit that I don't know the answer and to then work with them to seek the answer.  You might argue that, "[you] don't think it is fair to blame doctors, (for their lack of education on certain diseases) and we cannot demand they do more. sometimes doing nothing is ok. gosh they could make a big mistake".

Would it be acceptable for me to tell a student who had submitted an important essay (say for a prestigious competition or a University application) to me for assessment and correction,"oh sorry, I don't know how to punctuate.  Punctuation isn't important.  Just write your essay without it.  Not using punctuation is okay and oh, don't bother trying to use punctuation because you might put a comma in the wrong place".

I would hope that having gone to University and obtained a degree that made me an expert in a particular profession, that I would not be so ill informed, un-educated and ignorant to my client's plight.  If I don't have the background knowledge in a sub-field of my profession, I would hope that I would at least be smart enough to concede that fact and to help steer my client towards someone who could help them.  Too many doctors think that is okay not to help us, that it is okay to do "nothing".  Just because they think that, it doesn't mean that we have to concur with their complacency and accept their unwillingness to try.

I would indeed hope that the parent of my hypothetical student would blame me for my unwillingness to educate myself (and for the subsequent set backs that their child had suffered at my expense-  just as patients suffer and deteriorate as a consequence of misguided and ill-informed medical advice).  I would hope that the parent would take the issue further and "demand more" for their child.  In the same way, we should not feel bad about demanding more for ourselves.

If we want support and someone to JUST listen to us, we can see a counsellor, talk to a friend etc.  If we want treatment and medical advice we see a doctor.  In the case of my student, I don't think that it would be of adequate consolation to the student and their parent if I refused to help, but was supportive and nice;  or if I listened but then still refused to help.  I simply would be seen as negligent and not doing my job.  Why can't we argue the same of these doctors?

We all "hope" to get better.  But "hope" cannot be a substitute for good medical treatment.  All of the hoping in the world wouldn't improve the punctuation of my student's essay and hope alone won't find a cure or new treatments for M.E.-  such situations demand that the professional (i.e.  the teacher, doctor-  whatever the case me be) actually DO SOMETHING.

I don't think it's unreasonable that we expect more from the doctors who are treating us.  I don't think it's unreasonable to expect that the advice and treatment offered to us is based on sound, reputed and informed medical advice.

If we don't expect and demand more for this disease then who will?


Brooke Rodgers

 

"In 1995 I called the CDC and asked them for data from the polio epidemics in the 1950s, year by year, and discovered that the attack rate of M.E. was about fifteen times higher in the late 1980s-early than the attack rate of polio in the early 1950s. We don't get paralyzed in the formal sense; we just drop out and disappear"

Hillary Johnson, author of 'Osler's Web'

 

"An infectious pathogen can and will infect a multitude of people--but only a few get symptoms, and only a few of them actually become seriously ill. This is how infectious diseases work. If all were immunologically vulnerable to every infectious pathogen, the human race would never have survived. No species would. So given this information, you would have to say, this is a huge disease and remarkably common"

Hillary Johnson, author of 'Osler's Web'

 

As anyone with severe M.E. 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". Trust me, "fatigue" or "tiredness" don’t even register on the scale of how life-shattering an illness this can be.

Sick, Not Tired by Ciara MacLaverty

 

"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

 

"When syphillis was gravely untreatable, Sir William Osler said, "To understand syphillis is to understand all of medicine." Explains Dr. David Bell, "I cannot think of a better description of CFIDS. Virtually every organ system is involved." Since few doctors ‘understand all of medicine’ these days, CFIDS has been approached from a number of different angles, with specialists entering the labyrinth of illness from all sides."

Peggy Munson in Stricken

 

"The only doctor supplying real relief from the grueling pain is one who ends it permanently. People with CFIDS need more options. ...CFIDS must be seen simply for what it is: a devestating physical illness that can make the most mentally stable people contemplate suicide....sometimes the grief from my losses is unbearable."

Peggy Munson in Stricken

 

"I had no idea that my place in epidemiological and cultural history would play a giant role in the was my illness was perceived. I simply collided with a pathogen. In 1992, on a day in May, the sky started spinning"

Peggy Munson in Stricken

 

"Unfortunately the silence and invisibility of CFIDS patients has effectively been perceived as tacit agreement with the status quo."

Peggy Munson in Stricken

 

"...And from where does this burnout arise you might ask? Try years of explaining my nvisible symptoms to a society that just didn’t buy it. Basically every day I had to defend my credibility....This took a toll....I have given the "I know I look fine but really I am very, very sick and spend half my existance bedridden" speech literally thousands of times. Each time I hope I get the understanding nod, not the dreaded squinting of disbelieving eyes. Each eye squint cuts away at my self esteem."

June Stein in Stricken

 

"Most New Age "positive thinking" is just Christian Science-derived denial dressed up in more exotic, and modern, clothing. It’s sexy because they claim they can heal our deepest pain. It sounds too good to be true, and it is."

Caitlin MacEwan in Stricken

 

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] 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

 

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.

ME sufferer 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 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.

Barbara LR. M.E. sufferer

 

I miss fatigue. I miss feeling tired. I am never tired anymore with M.E. just very ill. It’s true I can’t do anything, but this is because I am ill and my heart and body don’t work properly, not because I am tired at all. I miss real fatigue. It is a joke the linking of ME and fatigue....  now everyone tired thinks they have it when M.E. in reality has nothing to do with fatigue whatsoever and all those tired people are missing out on being diagnosed with what they really have.

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, M.E. sufferer

 

"Patients are united in their dislike of the term 'fatigue'."

Thomas Hennessy, Jr., RESCIND, Inc.

 

The word fatigue is so harmful not just to M.E. sufferers but also to all those people who really do have fatigue and who read the descriptions of ME and think ‘that’s what I have’ when in reality, they don’t have the main features of true ME at all.

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

Subscribe to the HFME newsletter!

To subscribe just click here

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