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.

M.E. vs MS quotes

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.

M.E. vs MS quotes

M.E. appears to be in this same family of diseases as paralytic polio and MS. M.E. is less fulminant than MS but more generalized. M.E. is less fulminant but more generalized than poliomyelitis. This relationship of M.E.-like illness to poliomyelitis is not new and is of course the reason that Alexander Gilliam, in his analysis of the Los Angeles County General Hospital M.E. epidemic in 1934, called M.E. atypical poliomyelitis.

Dr Byron Hyde 2006

 

The term myalgic encephalomyelitis (means muscle pain, my-algic, with inflammation of the brain and spinal cord, encephalo-myel-itis, brain spinal cord inflammation) was first coined by Ramsay and Richardson and has been included by the World Health Organisation (WHO) in their International Classification of Diseases (ICD), since 1969. It cannot be emphasised too strongly that this recognition emerged from meticulous clinical observation and examination.

Professor Malcolm Hooper 2006

 

M.E. is a systemic disease (initiated by a virus infection) with multi system involvement characterised by central nervous system dysfunction which causes a breakdown in bodily homoeostasis. It has an UNIQUE Neuro-hormonal profile.

Dr Elizabeth Dowsett

 

There is ample evidence that M.E. is primarily a neurological illness. It is classified as such under the WHO international classification of diseases (ICD 10, 1992) although non neurological complications affecting the liver, cardiac and skeletal muscle, endocrine and lymphoid tissues are also recognised. Apart from secondary infection, the commonest causes of relapse in this illness are physical or mental over exertion.

Dr Elizabeth Dowsett

 

Possible costing for ME support has been based on 3 times the cost of maintenance for multiple sclerosis on the supposition that ME is [up to] 3 times as common. The only costs that we can be sure of are those derived from the failure of appropriate management, and of inappropriate assessments which waste vast sums of money and medical time while allowing patients to deteriorate unnecessarily.
Research workers must be encouraged and appropriately funded to work in this field. However they should first be directed to papers published before 1988, the time at which all specialised experience about poliomyelitis and associated infections seem to have vanished mysteriously!

Dr Elizabeth Dowsett

 

People in positions of power are misusing that power against sick people and are using it to further their own vested interests. No-one in authority is listening, at least not until they themselves or their own family join the ranks of the persecuted, when they too come up against a wall of utter indifference.

Professor Hooper 2003

 

From Charles M Poser MD in the book The Clinical and Scientific Basis of Myalgic Encephalomyelitis edited by Dr Hyde (paraphrased by the author): There are many clinical and laboratory similarities in M.E. and MS, but what separates them is: the plethora of systemic manifestations in M.E., the orthostatic tachycardia seen in M.E., the outbreaks of M.E., the striking involvement of muscle in M.E. and the muscle pathology seen in M.E., the characteristic myalgias and arthralgias in M.E., and the symptoms such as cold extremities and flu-like symptoms etc. seen in M.E. These features are not seen in MS and their presence may even preclude a MS diagnosis.

 

I have a friend who has MS and she is really very independent and able to get about (unlike me). My Dr isn’t very helpful but at least she is kind. My friend with MS has said how similar our illnesses are, yet she has a special MS nurse, a supportive Dr and the knowledge that when she tells someone she has MS they will be understanding and non-judgemental. If only we could have half of that I would be happy. I had to use a wheelchair for 2 years and I had people saying I was lazy and why was I 'carrying on' like that! Can you believe it?! When I was so severely ill and couldn’t get out of bed for months on end people told my husband I needed 'motivating' and that I was probably having a nervous breakdown and was depressed... If only I had MS!!!

I really do feel that we are left to cope with such a debiltating illness alone almost. My husband has nearly lost his job because of time off he has had to take to care for me when I’m at my worst. We struggle financially as we only have one wage coming in and yet we get no help or support from anywhere, and yet if I was suffering from MS people would be appalled at my situation. As it is, most people don’t even think I’m ill and that I should just 'pull myself together' - if only I could! And this is the joke, we are too ______ ill to stand up for our rights and make a change!!! 

Lena, M.E. patient

 

i have to admit i get very resentful when i see the adverts on television for everything except ME (not to deny serious diseases their rightful place in public awareness, but it's hard to be left out in the cold year after year, decade after decade). on a bad day i probably feel as wretched as people with severe MS; on a "good" day i probably feel about as well as people with a mild case of MS. but then it's probably the same for them ... degrees of severity.

having struggled with ME in the face of doubt, invalidation, "pep talks", psychologizing, and so on since i was 28 ... i'll be turning 55 next month ... i think that had someone come to me and given me the choice, i'd have chosen MS for exactly the reasons put forth by so many others. that ME isn't recognized as "real" (despite the mountains of evidence to the contrary) often pushes me to the brink of absolute despair, and seeing so many other people receiving the kind of care i need just adds insult to injury.

and if, as often happens, a diagnosis of ME is overturned by some shrink who thinks him/herself able to determine within 45 that one is "mentally ill", and words such as "somatoform" and/or "personality" disorder appear on one's charts, this negation becomes not only humiliatingly invalidating, it becomes dangerous. when a doctor sees any of those words in one's chart, they immediately write off the complaint which has been brought to them as "attention-seeking" or good old fashioned hypochondria.

i have long since lost count of the times i've been scolded and sent home untreated, only to return a few days later with symptoms no one can deny or ignore. I fully expect my cause of death will be medical neglect.

Namaste, severe M.E. patient

 

MS patients are very well treated, the standard of care is high. But someone with M.E. who has a similar disease and can often be twice as ill, will most often not get even a tenth of the same level of care. That is if they manage to get any care at all, many don’t. Lots just left at home to die.

The diseases are so similar, it’s so insane. Shouldn’t care given be based just on the actual need? On how ill and disabled someone is and what type of disease it is? (ie. Neurological, cardiac and so on.) It really should not matter so very much, as it does now, what name your illness has and what reputation, how it has merely been ‘marketed’ to the public by insurance companies and so on!

M.E. patient

 

If you’re going to ‘choose’ a disease to get, make sure you choose something like MS, Parkinson’s or even better breast cancer! It seems like about half of all the awareness campaigns you see are for breast cancer. There is no equality, it seems to be all based on who can spend the most time campaigning and if you have a disease that makes you too ill to do that, or that has been skewed by vested interest groups as M.E. has, then too bad. I would ‘choose’ breast cancer or MS over M.E. any day! (If you HAD to choose something.) Who wouldn’t? Not only do they get high quality care and a whole bundle spent on research, they can get support to help them feel good about themselves and maintain their appearance (wig and make-up classes), they can get support during treatments (eg. hand holding during chemo) and even get support for their whole families sometimes! That is fine of course, and good for them… but it’s hard to hear about when we are desperate for even basic treatment. M.E. makes most of us sicker than someone going through chemo, every day, for years and decades too. Sigh.

M.E. patient

 

My sister who is 34 has known since August 2008 that she has MS. She was paralyzed on 1 side of her body as she went to the hospital. There she got the diagnosis MS. She got antibiotics by a drip and got well again. Now she has no complaints except for some tiredness. She now works 4 days a week instead of 5.

As her neurologist heard from her about me, he wanted to see me to do some tests because of my neurological problems. I got an MRI, but it did not indicate MS. Later on he told my sister that she had to do less and I had to do more!!!!! He had seen me twice and didn't know much about me or about ME.

My sister gets all the attention and understanding. From family, from friends, from work, from doctors and she probably won't have any problem getting care and a wheelchair and stuff when she may need it later on. I had to buy my wheelchair by myself as I improved somewhat to be able to use it finally. There are wheelchairs in which you can lay down. I've asked for one, but I didn't get one because 'it works anti-rehab'. As I was a bit better and could walk a few meters again I had to give back my special electric wheelchair in which you can lay down. I also get only 1 hour of ADL-care a day while I'm bedridden for 10 years now. I also haven't seen my family for 10 years, because they think I'm lazy and don't want to work.

I've lost all my teeth at age 36, because my gp didn't believe I had severe burning acid.

There are months I can't swallow, but I don't get tube-feeding. Not even fluid by IV. Why? Because it would make my body even more lazy and then my body won't eat or drink ever by itself again, supposedly. I even don't get oxygen when I have severe breathing probs because of the same reason. The doctors just don't believe me, despite all the evidence there is out there about M.E. and about my own case.

I wish I had MS. As I heard of my sister having MS I was jealous and I still am. I so hoped I had MS as I went back to the neurologist for the result of the MRI. When I got home I cried in frustration and disappointment. I still feel very sad and disappointed about it weeks later.

Ingeborg Geuijen, (The Netherlands), author of www.borgofspace.com

 

I do think that the simultaneous rise of AIDS at the same time as the 80's US ME epidemics sucked the life out of any possible attention by public health towards ME. It is so hard to talk about because AIDS is a TERRIBLE disease but they got the funding and the recognition and research because it was a very powerful, large, population group here in NA, well used to activism, and BTW, men, at least in the early days. And just look what has happened for PWA's, all the research and progress, all the social support and awareness. There's quite a strong AIDS group here. I found out that a woman I know with it, who has a husband and kids, who functions as healthy running around all over the place, and who gets substantial caregiver hours. And here I am, unable to do my own shopping or housework and can't get one lousy hour. And one can never talk about it, it's not PC <sigh>.

I do not begrudge them their care etc. but only wish for 1-1/0 of the help that they get (or that those with MS get). And it pisses me off, that so many lesbians worked so hard on behalf of men with AIDS, fought the battle side by side for many years, but the men do not return the favour for lesbians with ME and other immune diseases, in which community they are rife.

And PWA's (the people I know in this community anyway) are just as likely to look upon me as crazy as anyone else <sigh>. You'd think they'd get it, but no.

Aylwin, M.E. patient 20+ years (Canada)

 

I actually walked away from mainstream medical care about 15 yrs ago out of utter frustration. Now I am having another "go" just to try and obtain any help that might be had. And my perception is that it's worse now. And my patience is running out. again. I almost wish I could be MISdiagnosed with MS or other, more respected disease, just to get better treatment.

Aylwin, M.E. patient 20+ years

 

I had those same "bright matter hyperintensities" in my MRI that we know are part of M.E.…but they were considered ‘insignificant’ because of having this silly disease, even though they are virtually identical to the ones seen in MS and other neurological conditions.

Aylwin, M.E. patient 20+ years

 

Hate to say it, but the only folks I know who have MS worse than we have ME are two women with the galloping progressive rapid kind, who are in wheelchairs & care, but they won't live much longer. But everyone else I've ever known with MS can run circles around me!! No offense to anybody, I have known people with MS, Lupus, Lyme, AIDS (not just asymptomatic HIV) and all kinds of other similar conditions, and to a one they can all run circles around me...until it's time to die that is. (Then they are more disabled than us, but only then). <sigh>.

Aylwin, M.E. patient 20+ years

 

To go from a MS diagnosis to a M.E. one is…illuminating (and not in a good way)! Doctors are supposed to be scientific, but it seems instead very often how they treat you is based upon ‘belief’ and seeing only what they expect to see based on what they have read. That is a big problem when a lot of vested interest groups have BOUGHT medical journals and compromised their integrity in way that suits their own interest and has nothing to do with science. When will the medical profession wake up to this?

All the abnormal tests results accepted as a cause of my problems when I had MS suddenly became invisible when I was a M.E. patient. My brain lesions on MRI were suddenly now ‘unimportant’ as were my grossly abnormal immune system tests, which were explained away as ‘being caused by an transient virus’ even though they’d been the same for many years and are well documented as occurring in M.E. (Services were withdrawn too, even though the level of illness remained unchanged.) What’s that saying…there are none so blind as those who refuse to see?

MS and M.E. are similar enough with symptoms and test results that M.E. could have in the past been classified as one of the subgroups of MS, if only it had there would be a lot less suffering in the world.

M.E. patient

 

My mum is starting chemo again after having lymphoma on and off for 25 years. They found a heart condition after 14 years of funny turns and she has a pacemaker now. She is 78 in Sept. She has a lot of ME type symptoms but can run rings around me ability-wise.

Victoria, severe M.E. patient

 

All I got from friends and family when I was ill and for the first 10 years was nasty comment and jokes and put-downs at my expense. They believed every piece of crap in the media about my disease, never mind how obviously poorly-constructed and illogical it was. No amount of evidence I had was ever enough, no matter how profound my test abnormalities. It wasn’t even looked at, they had made their minds up. It has taken 5 years for me to even get a few kind words and basic acceptance that I am severely ill, and that it is through no fault of my own and not something I can ‘positive think’ away.

Lots with MS can work part-time still, while I am bedbound and housebound and haven’t been able to work for 10 years and may never be able to again.

MS and M.E. are very similar diseases, but only scientifically. The way people react to each of them is so different, and not for any good or scientific reason. I wish I had MS.

Severe M.E. patient

 

Going from healthy to very ill overnight, and losing just about everything so quickly, is a real shock. The severity of the symptoms, the high level of constant suffering was really hard to deal with. But I don’t even have the words for how…devastating at a core level, at the level of who you are, your core being; to become so severely ill suddenly, and through nothing you did and to just…be ridiculed for it, and disbelieved and not helped. When people very close to you accuse you of ‘making up’ your disability to ‘get attention’ …when doctors talk to you are if you were just dirt, just lying morally-bankrupt scum not worth even a second of their time or consideration, refuse you the tests and so on you need and only tell you that if you want to do things again you should ‘just do them’ and if you don’t you are obviously ‘choosing’ to be ill….it is so just, traumatic and unfair, it kills something inside of you. It is just inhuman to treat anyone that way, let alone those who are so ill…who just happened to be unlucky enough to collide with the wrong virus one day.

Things are much better now, but for the first 7 years I was ill, not one person had a kind word for me. Not one, not one friend or doctor or family member. I had no support at all, emotional or physical. My family gave me a food and roof over my head but that was all. I remember being so ill, bedbound and going in and out of consciousness, having blackouts, seizures and terrible vertigo, and just being so desperate. I remember patting my cat who was sleeping on my bed at the time, and I remember thinking, this is it. This cat is the only one I have on my side…. It makes me cry now just writing that. It’s hard even thinking about that dark, dark time. A dark time that just would not have happened if I’d had MS instead.

If my disease had been called MS, I know for sure this would have been completely different, even if I were far less ill and disabled. It would have changed everything. We are too ill to do anything, let alone fight such a huge battle ourselves.

J, severe M.E. patient

 

I have had MS for 10 years and I have been amazed by the similarities to people I know with ME and I fully sympathise with the issues regarding the different attitude of the public and professionals to the two illnesses and about the different levels of support that are available.

In a way I think it is easier that people with MS are not expected to get better. Over time I have come to terms with the gradual deterioration and I don't look for "cures", etc. and although it can be annoying when people constantly TELL me that I look well, and therefore assume I have no symptoms at that time, I think it must be much worse for ME sufferers to have so many people expect them to get better and to keep asking them about their progress.

Thank you for the article and I wish everyone with MS or ME the courage to deal with each day.

Pam, MS patient (Guestbook entry)

 

I don't think there actually are any other disease-sufferers getting as little help as we do. And yet there are very few diseases (if any), which impact, destroy and restrict your life and ability to function as much as ME does. I would not get any caregiver hours or assistive devices either, if it was not for the fact that I also have a connective tissue disorder called the Ehlers-Danlos syndrome (EDS). EDS is not the actual reason for my disability and need of help. The reason for me needing help and being so sick and disable is ME. But with "only" ME I would not get ANY kind of help. Regardless of the fact that I would not stay alive without any caregiver hours.

M, severe M.E. sufferer

 

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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