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 on 'Are we just marking time?'

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 on 'Are we just marking time?'

"Of course we need more research but we do not need to wait for "more science" or the Holy Grail of a marker - even to "prove" that it is "real." NO other illness has been held to this unattainable standard and if we keep buying into this line of thinking we only hold ourselves back. There is substantial objective, well-documented evidence of CNS, immune, endocrine, cardiovascular, and autonomic nervous system abnormalities, which indicate that it is biologically, not psychologically determined. We need to keep pushing for recognition and utilization of what we have and can use now, not always waiting for more". Jill McLaughlin

‘What happened with MS, is NOT going to happen for us now with M.E. MS was hijacked by psychiatrists for their own gain and called ‘hysterical paralysis’ for many years. This only ended when clear evidence showed that MS was an organic neurological disease. Many M.E. advocates continually compare what happened with MS then to what is happening with M.E. now but it is not at all the same. There are huge differences. Ample evidence M.E. is neurological existed BEFORE the psychiatrists and vested interest groups got involved. The evidence is now overwhelming and still the ‘CFS’ lies and cover-up persist. If you think that ‘more science’ will or could get M.E. patients out of this mess, then you aren’t aware of even the most basic facts and history on this topic and have mistaken mere propaganda (created by vested interest groups working against our interests) for legitimate and factual information. The facts and history of M.E. and ‘CFS’ make it very clear that this is entirely a political fight. Refusing to accept this fact only helps the abuse continue.’ J.M., M.E. advocate and patient

Enough of the CFS lies, formerly known as Atypical Poliomyelitis, M.E. experts stated that the epidemics in the 1980s were in fact M.E. as named in 1956 and classified by WHO as a neurological disease in 1969. No to ME/CFS or Myalgic Encephalopathy or the Unfair Name Change Campaign. There is proof of chronic low-grade inflammation in Myalgic Encephalomyelitis, diagnostic tests of the serious pathophysiology do exist but treatments are being unnecessarily delayed. This Polio/AIDS-like disease is a major public health threat that must be urgently addressed by DHHS, NIH and CDC - why are we waiting for treatment and prevention? John Anderson

Can I make a plea for anyone doing an interview or providing information to the media... When you talk about the need for more biomedical research PLEASE be sure to stress that there is ALREADY a significant amount of research proving that ME exists as a discrete well-defined organic disease. We know enough about it to know it affects a wider range of bodily systems than multiple sclerosis for example. We know enough about it to know what systems are more likely affected (muscle, CNS, vascular) and which tests can help confirm diagnosis, guide an monitor management. We even know that some biomedical treatments are available (as per Cheney etc) even if the NHS is extremely reluctant to endorse a non-psychiatric approach, and of course they probably don't get to the root cause as yet.

We are not insisting on biomedical research to "prove that ME is a medical disease". We already KNOW that. The WHO knew that in 1969, the RSM knew that in 1978. There's a whole history of epidemics and some deaths dating back decades. Pellew and Miles transferred the infection to monkeys in the 1950s, one of which died from heart failure, and the post mortem showed "disseminated lesions scattered throughout the nervous system from the brain to peripheral nerves and associated with perivascular round cell infiltration" (Parish, 1978). There are now [many hundreds of] published papers confirming organic disease, despite the mess of confusion of ME with vaguely defined fatigue syndromes. Many of the old papers can be found on the MERUK web site, some in full, and Pubmed has abstracts of recent studies.

Arguing that we need to "prove" ME is playing into the psychs' hands in appearing to agree we have nothing but a belief and no evidence, and so can't with confidence confirm the psychs are wrong. Which couldn't be further from the truth.

The primary needs of research are for treatments, further delineating the etiology and for better diagnosis. Only biomedical treatment offers the practicality to counteract CBT/GET. The cause of multiple sclerosis is hotly debated (virus, vitamin deficiency, genetic?) yet it doesn't have the clear historical pathogenic associations that ME has.

It's really important for listeners/readers to get the message that ME is NOT an "enigma" or a "mystery", it's not a "belief system", "unexplained", "biopsychosocial", "difficult to define", nor a "diagnosis of exclusion" and DOES have objective signs. It's what it says on the box, a serious multisystem disease (the people who say othewise have no place meddling in areas beyond their expertise), albeit one that needs much more medical attention and less glib, patronising Orwellian dishonesty.

The reasons why so many professionals appear not to know about the disease is not lack of research, it's political, with the data being censored by the dominant UK CBT hegemony. Of course, biomedical research is needed anyway, but the psychiatric empire is so powerful that it's unlikely biomedical research alone could break through without political pressure as well.

(I also think GPs would feel less helpless if they knew it was possible to take a pro-active biomedical approach in investigating and using such treatments extant e.g. mitochondrial, antioxidant, neurological -- some of which *are* as safe as food -- rather than dispensing antidepressants as if they pay a commission.) Mike (last name supplied), M.E. patient and advocate

Far too many Drs, researchers and even (often self-claimed) experts are continuing to lump ME, a neurogenic illness classified by the WHO under G93.3, with 'CFS' (Fukada, et al), which is based on 'fatigue' and is referred to as 'ill-defined', etc. Understanding the significant differences is not difficult, when one is familiar with ME and knows what to look for. PLEASE do all that you can to rectify this untenable situation!! Please share this information--and all that I have previously sent you--with others and implement a workable plan, collaboratively. Too many years have been wasted already...too many lives already lost. YOU can do this, if you just decide to. LK Woodruff, M.E. advocate

It is becoming rare to see anyone speak the truth about ME and the capitulation of former ME advocates to the fatal ruse of conjunctive terms (and mixed definition) is happening far too often. M. Beck, M.E. advocate

Modern technology has now served to confirm and to detail the meticulous clinical and scientific observations made about ME before 1988! We can rest assured that this serious disability can arise (like polio) from an initially trivial infection which has epidemic and pandemic potential but we need to give further thought to any name change. We should, instead, be making maximum use of modern and effective means of diagnosis, prevention and management. Dr Elizabeth Dowsett (on the use of the term ‘Myalgic Encephalopathy’)

‘Do not for one minute believe that CFS is simply another name for Myalgic Encephalomyelitis (M.E.). It is not. The CDC definition is not a disease process. It is (a) a partial mix of infectious mononucleosis /glandular fever, (b) a mix of some of the least important aspects of M.E. and (c) what amounts to a possibly unintended psychiatric slant to an epidemic and endemic disease process of major importance. Any disease process that has major criteria, of excluding all other disease processes, is simply not a disease at all; it doesn't exist. The CFS definitions were written in such a manner that CFS becomes like a desert mirage: The closer you approach, the faster it disappears.’ Dr Byron Hyde 2006

‘Thirty years ago when a patient presented to a hospital clinic with unexplained fatigue, any medical school physician would search for an occult malignancy, cardiac or other organ disease, or chronic infection. The concept that there is an entity called chronic fatigue syndrome has totally altered that essential medical guideline. Patients are now being diagnosed with CFS as though it were a disease. It is not. It is a patchwork of symptoms that could mean anything’ Dr Byron Hyde 2003

The current confusion over the name in the US is that CFS, the fabricated condition that somehow became officially synonymous with the real disease Myalgic Encephalomyelitis, is to be cunningly renamed Myalgic Encephalopathy. The problem is that both names share the initials ME, and since Myalgic Encephalopathy will retain the terribly misleading CFS criteria this name is nothing more than a clever diversion to draw our attention away from the real issues. John Anderson, M.E. advocate

To the very few physicians still practicing today who began seeing patients with this illness some 40 years ago and who have continued to record and publish their clinical findings throughout, the current enthusiasm for renaming and reassigning this serious disability to subgroups of putative and vague "fatigue" entities, must appear more of a marketing exercise than a rational basis for essential international research. It was not always so unnecessarily complicated! Dr Elizabeth Dowsett

There is no such disease(s) as CFS. There are actually 30 well documented causes of ‘chronic fatigue’. To say that ME is a ‘subset’ of CFS is just as ridiculous as to say it is a ‘subset’ of diabetes or Japanese B encephalitis or one of the manifestly absurd psychiatric diagnosis, such as, ‘personality disorder’ or ‘somatisation’.

ME 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 (The brain can no longer receive, store or act upon information which enables it to control vital body functions, cognitive, hormonal, cardiovascular, autonomic and sensory nerve communication, digestive, visual auditory balance, appreciation of space, shape etc). It has an UNIQUE Neuro-hormonal profile.

The problem we face is that, in spite of overwhelming epidemiological and technical evidence of an infectious case, the truth is being suppressed the government and the ‘official’ ME charities as ‘too scary’ for the general public .

Infections follow predictable courses, they can easily be diagnosed, managed and prevented. Having worked with them for some 50 years I have seen the results of cover up, drug company pressure, research rivalry and ultimate disaster - all of which could have been prevented. Meantime research workers (such as Richard Lacey who warned about BSE, Listeria, Salmonella etc) get the sack and lose all research findings. Differences between ME & CFS by Dr Elizabeth Dowsett

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 Gilliam, in his analysis of the Los Angeles County General Hospital M.E. epidemic in 1934, called M.E. atypical poliomyelitis. Dr Byron Hyde

Under epidemic and primary M.E. there is no consensus as to the viral or infectious cause. Much of this lack of consensus may be due to the non-separation of acute onset from gradual onset patients. Primary M.E. is always an acute onset illness. Doctors A. Gilliam, A. Melvin Ramsay and Elizabeth Dowsett, John Richardson of Newcastle-upon-Tyne, W.H. Lyle, Elizabeth Bell of Ruckhill Hospital, James Mowbray of St Mary’s and Peter Behan all believed that the majority of primary M.E. patients fell ill following exposure to an enterovirus (Poliovirus, ECHO, Coxsackie and the numbered viruses are the significant viruses in this group). I share this belief. In my tests in Ruckhill Hospital in Glasgow, I found confirmation of enteroviral infection only in acute onset patients and not in any gradual onset [ie. CFS] patients. Dr Byron Hyde

With the rapid development of technology and access to international publication, the UK retained its reputation as a leading centre of M.E. research and remained able to report clinical studies backed up by molecular biology, brain imaging, sophisticated hormonal and other biochemical studies. At this point, with sound evidence of an infective cause, the way in which such infection is spread and the pathogenesis of the disease, why were we urged to adopt the "fatigue definitions" inflicted upon M.E. sufferers by USA scientists? Dr Elizabeth Dowsett

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

Myalgic encephalomyelitis is a common disability but frequently misinterpreted. Amongst 6,000 patients referred for general microbiological diagnosis between 1975 and 1987, 420 cases were recognized. This illness is distinguished from a variety of other post-viral states by an unique clinical and epidemiological pattern characteristic of enteroviral infection. Prompt recognition and advice to avoid over-exertion is mandatory. Dr Dowsett and Dr Ramsay

'The physician and patient alike should remember that CFS is not a disease. It is a chronic fatigue state. The one essential characteristic of M.E. is acquired Central Nervous System (CNS) dysfunction, that of CFS is primarily chronic fatigue.' Dr Byron Hyde

 

Are we just 'marking time?' looks at the problems with the flawed (but popular with some advocates) 'until we have a unique test for M.E. and more research, we can't expect anything to change' approach to M.E. advocacy.

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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