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

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

‘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.’ Dr Byron Hyde 2006

 

‘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

In response to a comment that sites (eg. Phoenix) involved in supporting the ‘Fair name’ campaign are ‘a trifle naive’ when it comes to M.E. politics: Doesn't sound like naivety to me. Sounds orchestrated and dripping in the kind of manipulation we are so familiar with. These people would take away the only sliver of legal protection ME patients have.
     Those men have the facts. If they don't it is because they have rejected the facts from people who are more informed and astute than they are. if they cannot grasp the facts they should not be representing/leading people.... or orchestrating an 'exciting' campaign.... or keeping dissenting views off their sites... .... the 'Excitement ' Campaign may be a lot of things but naive it isn't.
     I don't think we should make excuses for them. They are doing alright themselves, and would keep millons of patients out of the lifeboats.. They have been given the facts and they have rejected the facts and kept the facts off their sites. I bet they have never scavenged for food or been hunted by doctors and in fear of their life, or buried a relative denied medical treatment or the basics for survival.
     Sounds orchestrated and full of the usual deception smoke and mirror devices. The whole name change campaign smells of deception and text book propaganda... all the familiar devices to deceive. Rozanova, M.E. patient and advocate

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

 

The impossible situation in which people with ME are trapped was intentionally created by "insurance, government & pharmaceutical company overlords." I am continually amazed that they have been so successful at this, in a supposedly democratic world, with all its checks and balances. The Wessely school has somehow been allowed to shape and define reality. The psychiatrists and their big-money overlords seem to make such an efficient and unchallengeable team. Meanwhile, the ME world is splintered, full of factions fighting each other, rather than the real enemy. This 'Fair Name' campaign seems to be yet another counter-productive exercise in shooting ourselves in the foot. It makes me, too, "want to SCREAM until my voice is gone." Lesley, M.E. advocate

 

The entire concept of a "New Name" is wrong. There is no need for a "new name" for an "old falsehood". There already IS a correct name, Myalgic Encephalomyelitis with a correct ICD code. We need the correct name and the proper definition, not a new face on an old lie that still functions to obscure and deny the reality of Myalgic Encephalomyelitis. We need to educate ourselves, families, doctors, social service people, politicians, journalists, etc about the existing disease Myalgic Encephalomyelitis. Not fall into yet another ploy of those who have hidden the truth. M. Beck, M.E. patient since 1983

 

Now this question may sound very odd, but consider: How would you Disguise a Disease ? I doubt there could be too many ways . . . But if that were your intent, Let's see, where would you start -- Camouflage! First declare it is a New illness. (Brilliant!) Declare that there is no epidemic! (Tremendous) Spread the word it is not serious. (Spectacular!!!) Create a smokescreen by using a vague definition so that you can mix in many non-cases, and thus claim it is very hard to identify; then… Cover your tracks! Give the Disguised Disease a variety of New names. (Yes, a trivial absurd name, splendid!) Disassociate it from its previous established name, research, case studies, descriptions and diagnostic ICD classification. (Fantastic) Lets see what else could we do to disguise a disease…  Create Confusion! We could tell Drs that this disease is "mysterious" and that there is no need to investigate, "Don't do any testing" (you won't find anything) It’s a Mystery... Cesar Quintero, M.E. advocate

 

It's not just a question of name anyhow, but of DEFINITION.  What definition of the illness does the Fair Name campaign propose? The website doesn't focus on definition and doesn't say clearly what definition of 'ME/CFS' is proposed. However, in the 'Live Chat Q & A with ME/CFS Research and Policy Leader Leonard Jason,' it is implied that he likes the Canadian definition (Carruthers et al., 2003) but acknowledges that the CDC doesn't accept it. Perhaps, therefore, the Fair Name campaign means to stick with the CDC definition, or perhaps they don't take a stand as to definition. But definition of the illness is crucial!

     In any case, since their definition will have to cover the 'CFS' part of the composite name, it would have to cover all the heterogeneous, unrelated causes of 'fatigue': depression, Lyme disease etc etc etc., which have nothing to do with ME.
     Mixing up various causes of fatigue in one wastebasket, and associating them with ME, harms not only those with ME, but also those with fatigue. They deserve an accurate diagnosis - they might have Myasthenia Gravis, Multiple Sclerosis or Cancer, and need appropriate treatment.
Lesley, M.E. advocate

 

Reading the info on A Fair Name Campaign at http://www.afairname.org/ made me think, that this must be a last desperate try before closing down on Myalgic Encephalomyelitis - a well defined neurological disease, recognized by the WHO and by the Health authorities of several countries outside the US.

     People in these countries actually suffer from ME - they do NOT suffer from MEopathy or PVFS and least of all from CFS. In the 80' and first in the 90's MEitis was on its way to be accepted and respected - until names like PVFS and CFS showed up - and with them the huge and devastating interest of the psychiatrists, which we all are too familiar with - God help us!

     No proper definitions are attached to PVFS, CFS and MEopathy. The CFS definition is mostly a laugh because it is so broad that almost any disease can fit into these criteria, and do take into consideration, that this has screwed up many years of vital research into MEitis. WE – the MEitis patients - are paying an unacceptable high a price for this.

     PVFS is not identical to MEitis (according to Ramsay). In many countries PVFS is mostly viewed as a post-infectious condition with a fairly good prognosis, and which will typically, although not necessarily, fade away within a couple of years. This is definitely not a correct picture of ME. ME-opathy can mean any disease in the brain - including MEitis. MEopathy has no specific definition and it is not classified by the WHO or anywhere else.

     And Mr. Carson asks: Why the fuss?

Lajla Mark, M.E. advocate

 

I do not get why people are so enamoured of "experts", whether it is "expert researchers or clinicians", or "expert advocates.” It is like falling for advertising, where the most familiar brand name is always "good". It is what they DO, not the familiar "expert" name, that counts.

M. Beck, M.E. patient since 1983

 

"All that is essential for the triumph of evil is that good men do nothing" Edmund Burke

 

I would really like to steer people away from Rich Carson's site! His "fatigue" construct just pisses me off, and their stupid "fair name" petition is just a big sell-out to the insurance industry. In the US, so called "mental illness' is covered by a lifetime maximum of only TWO years total disability, and yet, so called "physical illness" is covered by policies that pay you up to 55% of your former salary until you turn 65 and are eligible for social security. That this is one of the reasons that so many government weasels push this fake "fatigue" construct. They KNOW that it will cost billions of dollars if they admit the truth.

Tom Hennessy, founder of RESCIND

 

ProHealth/ImmuneSupport.com is now starting a series of articles in:

*....Clinical Psychology Review on medically unexplained symptoms and cognitive behavioral therapy....*

"....We conclude that a broadly conceptualized cognitive behavioral model of MUS suggests a novel and plausible mechanism of symptom generation and has heuristic value. We offer suggestions for further research...."

Chalder, Sharpe, Wessely, etc. have made the life of patients a hell during the last 20 years ! They filled their pockets (insurance industry) by trampling these severe sick patients. They are the Dr's Bruno Bettelheim in another shape*). I don't think that *supplements* will help to change this *novel and plausible mechanism*.

So why buy AminoAcids, Antioxidants, CoQ10, Essential Fatty Acids, Herbal Extracts, Multiple Vitamins & Minerals, NADH, Transfer Factor and other very, very expensive medicines, when we can be cured by a simple Cognitive Behavioural Therapy ? Is it not time to stop buying products from this organisation ? Does ProHealth think that we have bats in the belfry ?

Jan van Roijen, M.E. advocate

 

No signs of MEitis? This is not true. The first researchers doing studies on MEitis certainly did find signs of MEitis when doing autopsies. That's why WHO classified MEitis as a neurological disease in the first place. Today researchers still find signs of MEitis also by using brain scans.

     Do we want to be labelled as having diseases we do not suffer from? Do we want people with other - maybe treatable disease - to be labelled with a serious disease they do not suffer from? We certainly don't. Physicians, researchers and psychiatrist shouldn't want this either.

     Mr Carson writes: "'ME' is considered by most physicians and patients to be historically and diagnostically correct, and it has been used worldwide to describe the disease for close to 50 years."

     Exactly - so why don't you stick to MEitis! You have all the good reasons to do this. And you have no reasons to link it to CFS, which per definition hasn't much - if anything - to do with ME. Because some CFS diagnosed people inevitably suffer from ME doesn't make CFS identical to ME.

     Therefore, it's historically, medically and diagnostically incorrect to switch CFS to ME WITHOUT at the same time adopting the already existing  definition for MEitis. Also I personally find it unethical!

Lajla Mark, M.E. advocate


Just received a Newsletter from MERUK which included a piece by Cort Johnson, forwarded from Co-Cure I believe, backing the Fair Name campaign. It sounds so reasonable! So does the Fair Name website! They seem so moderate, willing to compromise etc. The name 'ME/CFS' is put forward as inclusive and conciliatory, as though they bring together all the warring factions in harmony. They say reasonable things like 'the perfect is the enemy of the good.' They make their opponents seem unreasonable, unrealistic and hot-headed.

     But it is based on wrong premises! Their claim are bogus! Attaching 'CFS' to 'ME' does not make 'CFS' sound more scientific - it is an unscientific jumble. It makes the 'ME' part meaningless. Doubly so, if it can mean either -opathy or -itis. Retaining 'CFS' does not help welfare and insurance claimants.

     There is a skill which some people have, of seeming to occupy the centre ground, of adopting a calm, reasonable tone of voice so that any disagreement will seem unreasonable and shrill and pugnacious. Wessley has this skill - if one reads his writing, without thinking about the issues, he sounds reasonable and persuasive. The Fair Name campaign seems to have this skill also. (I am not implying any link with Wessely, just saying that their tone of voice is smooth and persuasive.)

     I'm sorry that MERUK seems to be backing the name 'ME/CFS.' Of course, they use it themselves currently (I have written to them about the change - older articles on their website say 'ME,' newer ones say 'ME/CFS.'). I was hoping, though, that they just use the term 'ME/CFS' because everyone else does in the UK - I was hoping that
they were not taking a political stand. Oh dear. It seems they are.
Lesley, M.E. advocate

 

Since they are doing their big "education" effort why can't they do one for ME? It really would be such a help to doctors, etc. It is real and not a bunch of BS, hogwash, obfuscation. It is all so clear and obvious and concrete I just cannot understand why no one sees it???? and why people like Marg Williams, Hooper, etc all caved in to "ME/CFS" ???? Just don't get it.

M. Beck, M.E. patient since 1983

 

I support the restoration of MEitis, automonous, non-CFS-linked, non-umbrella term linked, MEitis, the name, the ICD, and the development of a modern MEitis definition, research programme, etc.

     We need CDC out of the "define the disease" business, this is not their turf. This is the function of the NIH, not the CDC. We should be vocal and clear that this lethal, decades-long fiasco of a CFS mess was begun by the

CDC's failure to properly investigate the Meitis outbreaks. The "invention" of CFS was scientific fraud and there

is NO reason that I can see to continue it.

     As for "compromise" now - I do not know why this is even being considered without an effort to establish

what is right. Give up before the fray because it looks as though the valid position is "outnumbered"? When there are lives at stake? It seems way too soon to be even mentioning concessions and compromises, especially to a non-official CDC public persuasion puppet show.

     Let us instead start to establish a position of strength for MEitis - which does, in fact, have a lot of history and clinical descriptions in its favour (facts).

M. Beck, M.E. patient since 1983

 

What a load of ... stuff on that ‘Fair name’ website. Chock-full of the rhetorical use of reversal  "we are getting rid of CFS forever"   OH, yes, that is why you have RETAINED "CFS" in the "new name". "Fair Name", "Choice", "diagnostically correct" ... were lives not at stake, this farce would be comical.

     Of course, this latest specious effort is the latest prong of attack in the attempt to get rid of Meitis forever - first the "something for everyone umbrella term" (which is merely recycled from their last effort of the Name Change Workgroup variety), next they will trot out the "new research". The "new research" and "new name" and "new definition" (stay tuned, they already wrote that at the Brighton Collaboration Vaccine industry consortium CFS Workgroup) and Voila':  justification for changing the neuro ICD code of MEitis.

     This has all been in the works for some time. The parallels with the "Name Change Workgroup" (USA circa

2000) are striking. What stopped that ridiculopathy was the increasing patient awareness of MEitis and tactics to hide it. This awareness was being achieved on yahoogroups. Free speech is a powerful thing.

     So, the free speech had to go. Lists were closed. Slowly but surely, all of the other groups where meaningful dialogue transpired were either acquired by a select few (owners and moderators) and/or the lists were infected with strife initiated and maintained by strangely energetic newcomers. Dialogue shut down.

     But Fear Not! "ProHealth/ImmuneSupport" message boards are here, along with all the "experts and advocates" to tell you what to think and do! (If you disagree, you are "negative", their rhetoric implies). Dialogue

on this new "name change" is censored and controlled. Patients have all been herded to the ImmuneSupport

board for discussion, and discussion is controlled. Hard to sow the seeds of MEitis fact in this condition.

     The tactic of "co-opting" has been used,  by rounding up all those who pose the threat of leading opposition

and "putting them on the board". This is just classic technique. Group-think rules on the "Advocates Committee", and well-meaning people are persuaded by the Group and by flattery of inclusion as a luminary.

     This is an extremely well-engineered effort, probably designed by the CDC public relations arm in consort

with corporate PR of some entities. Those with corporate and/or government background will recognise it for what it is.

     We must do more than criticise this lethal move. And it IS lethal. MEitis pts around the planet will be denied testing and treatment under this plan.

     We must NOT accept "compromise", in the binary choice of "alive or dead", there is no middle ground.

     We must carve out MEitis ground and stand firm upon it. International unity would be best, as Europe is

not safe from these efforts which are international in scope. Any EuroME can soon find itself sucked into the black hole of "new research, new definitions, new ICD code by WHO". No one is safe.

     We must oppose and stop this move to subsume Meitis into CFS via the "/".  

     Personally, I think that we should do more than assume a reactive stance. We need independence and to control

our own dialogue rather than being bound by a CDC sematic and tactical agenda. Perhaps we need an alternative website, that will function to educate re MEitis as it lays out the reasons against this "new name".

      Before I go, anyone remember "the vote" during the "Name Change Workgroup" effort, around 2000?  Patients had begun to wake up, and were rallying around "Restore MEitis". So, when the US gov agencies circulated their "vote on a new name" questionnaire, MEitis was not included!!!  MEopathy was, which should tell you everything that you need to know about the plans for that term. But MEitis was nowhere to be found.

     "CFS" is contrived non-entity, clearly designed to obscure MEitis (which obviously must have some uncomfortable and costly implications)

     MEitis has a name, has an ICD code. There are 2 "subgroups" - MEitis, and Not-MEitis. That is the long and short of it, and yes, it is a moral issue. Shame! Shame! Shame! upon those who know better and yet support this sham in the weak excuse of "better than CFS" when the truth is self-interest and a lack of guts.

     And all thanks and gratitude to all of you who maintain the courage and integrity to speak up for life and refuse to bow to lies. We must be more persistent than they. In solidarity

M. Beck, M.E. patient since 1983

 

If you actually have neurological multi-system enteroviral Ramsay-defined ME then you have to develop awareness of the current state of ME politics and treatment in order to stay safe. These are dangerous times for the truly physically ill ME sufferer, who is still being left to flounder often without any medical support or back up, monitoring or treatment., who may be given a wrong or minimised prognosis, will not have all the symptoms

investigated appropriately and who will most likely struggle to obtain benefits and appropriate GP support.

            Because the psycho/corporate lobby's truth is a relative one (to a political agenda), it can be infinitely flexible, so the goal posts can be constantly moved about by the corporate-psychiatric lobby and the real truth of ME perverted, especially by the brilliant infiltration of patient movements. Be aware of the message those who

represent you are conveying.

            Unless you understand that Myalgic Encephalomyelitis is a neurological, multi-system disease, which is severely disabling and can be deteriorative, even to death, for which there is currently no treatment and no cure and unless you are aware of the eroding of this fact through the clever use of language and compromising of facts,

then you are in grave danger of being misrepresented by people and organizations that will not truly represent your needs. Does the truth of enteroviral, neurological ME fit into the CFS paradigm? No, it does not !

            In short there are only two ways anyone representing ME can go. Life-bringing: straight-street, laser-sharp, from the truth to the truth, with honesty and integrity at the centre. Death-making: slick, glossy, in an ever wider circular cover-up of denial and manipulation; and this begins the moment you compromise your values.

You simply cannot sit safely on the fence believing that you are being reasonable. There is no balance to be struck between psycho-corporatism and a true biomedical approach. People are dying right now from this illness. Martin Luther King, writing from his Birmingham prison cell, in the midst of an equally impossible

struggle commented that "I have been gravely disappointed with the white moderate. I have almost reached the regrettable conclusion that the Negro's great stumbling block in his stride towards freedom is not the White Citizen's Councilor or the Ku Klux Klanner, but the white moderate who is more devoted to "order" than to justice, who prefers a negative peace which is the absence of tension to a positive peace which is the presence of

justice, who constantly says, "I agree with you in the goal you seek but I cannot agree with your methods of direct action"; who paternalistically believes he can set the timetable for another man's freedom; who lives by a mythical concept of time and who constantly advises the Negro to wait for a more "convenient season".

Shallow understanding from people of good will is more frustrating than absolute misunderstanding from people of ill will. Lukewarm acceptance is more bewildering than outright rejection." (Why We can't Wait, Letter from a Birmingham Jail, Harper & Row 1963)

The greatest threat to people with ME right now, comes not just from the psycho-corporate lobby; they are so easily exposed. It comes from the moderates, the lukewarmers, the pragmatists, the compromisers right at the centre; who cannot see the damage they are doing by negotiating the truth away. Beware.

Greg and Linda Crowhurst, 2008

 

People are talking about the 'Fair Name Campaign' as though it is 1) ground-breaking and 2) a good thing. It is neither! The proposal is that our illness should be called 'ME/CFS.'

     Even worse, the 'ME' bit can be 'ME-opathy' or 'ME-itis,' interchangeably. As we all know, ME-itis is the correct, meaningful name. ME-opathy is meaningless. It's a bucket/umbrella/dustbin-type term. The idea that ME can stand for two different names interchangeably shows medical disrespect for the illness. We all know what's wrong with the 'CFS' bit, so I won't get started on that.

     In a nutshell: 'CFS' is a meaningless term. It does not define a heterogeneous patient group. Yoking it together with 'ME,' which is a specific illness, is nonsense.

     I know that there are national differences to this issue. In the UK where I am, ME used to be more used, but now thanks to Wessely & co, 'ME/CFS' is taking over. However, in the US, 'CFS' and its variants (CFIDS, PVCFS etc) has been widely accepted - so perhaps in the US they think that ME/CFS is an advance on CFS. If so, they are wrong.

     Rich Carson of ProHealth started this campaign I believe, and it has heavyweight support such as Drs. Paul Cheney, Daniel Peterson, Kenny de Meirleir, David Bell, Nancy Kilmas, Charles Lapp etc. (all but K de M are big 'CFS' doctors in the US). The campaign is gearing up for a patient vote in May. I have written to Rich Carson to say:
- the illness ALREADY HAS a name - myalgic encephalomyelitis
- the illness already has a definition (Dr. Byron Hyde, Nightingale Definition of M.E., 2006)
- any other name (and definition) distances the illness from original
research (Ramsey, Richardson, Dowsett)
- 'CFS' is meaningless, denies the biomedical reality of the illness, denigrates patients as psychologically ill and discredits their claims for medical treatment and welfare benefits
- the above consequences were just what the CDC intended in naming the illness 'CFS' (i.e. intended to discredit the illness and evade financial responsibility for the ill)
- combining 'ME' with 'CFS' makes the composite term meaningless
- the 'ME' part is meaningless if it means 'ME-opathy' (no such thing)
- the 'ME' part cannot stand for two terms at once - this is sloppy and will breed more confusion
     It seems that so many people out there are hailing this campaign as a huge step forward. They are all wrong!
Lesley, M.E. advocate

 

My disease already got a fair name: Myalgic  Encephalomyelitis.  A name which is used in medical literature for more than 70 years, a name of a  disease well defined by dr. Melvin Ramsay, a name used for all epidemics in the last century, and above all, a name acknowledged by the WHO as a (neurological) disease.

AND what is even more important is the connotation, the  definition, the criteria.

      ME is a disease well-defined by dr. Ramsay (officially classified by the WHO).

     CFS (Fukuda 1992, Reeves 2005) is just a garbage bin, a syndrome, the only disease defined by symptoms. The diagnostic criteria define a disorder which strongly resembles somatization disorder (Nightingale definition/Byron Hyde, 2006).

     Instead of putting a lot of effort and enthusiasm in changing a dreadful name (CFS) in a new name (of an non-existing disease Myalgic Encephalopathy), it  would be wiser to be disseminating and advocating:

1* the name Myalgic Encephalomyelitis,

2* a clear difference between ME and CFS

Frank Twisk

 

Many concerns have been raised regarding the "Campaign for a Fair Name" proposal. It simply fails to address  the real issues and concerns that patients have had all along. In particular, it states the following:

1)  "ME/CFS is medically and diagnostically correct,

  reflecting the science of this illness, giving it the

credibility it deserves."

     Actually it is not. Combining two different terms without meanings or reference, which can mean whatever you want? How can that be diagnostically correct? How will anyone possible know what this is? So how could it be explained in terms of awareness and education (given the short attention spans of the media and general population)? Would Down syndrome groups have accepted as an official name change to "Down/Mongoloid Idiot syndrome" or would MS people have gone for  "MS/hysterical paralysis" - or AIDS to "AIDS/GRID/gay cancer?"

2)  "Used as an umbrella term, ME/CFS will satisfy those who wish to use Myalgic Encephalopathy, and those who prefer Myalgic Encephalomyelitis."

     Another umbrella term?  Leaving options which are open for interpretation is dangerous. There's no such thing as Myalgic Encephalopathy, as has been explained extensively. Encephalopathy is very broad and can be any brain malfunction or metabolic derrangement. Sure it can involve CNS abnormalities and neuroendocrine HPA axis damage -- as can stress or depression. Dementia is an encephalopathy.   CFS/ME is pretty much Wessely's invention and he  and his ilk do use MEopathy.

3)  "ME/CFS maintains "CFS," avoiding problems with insurance or disability claims."

     CFS has caused most of the problems to begin with. Disability is a legal term to determine functional impairment. For CFS it is nearly impossible when there are no tests to prove anything and no treatment - just tons of info on how to (successfully of course) manage it. The rational states; "Finally, in countries around the world, including Canada, CFS is known either as ME/CFS or simply ME." No, this is not really accurate. CFS is not ME or known as ME and most countries are fighting against this. ME is Myalgic Encephalomyelitis as recognized long before CFS was ever "invented." CFS "fatigue" definitions do not adequately define or describe a neurological disease. If the committee wants to use a name that would include patients who may have "CFS" but not ME-itis, then come up with a different name for them. But do not steal and bastardize someone elses name.

     This proposal only obscures and obfuscates the real issues, it does  not help solve or clarify them. So this approach is hardly diagnostically accurate or correct.

     The process as presented by this committee is odd and actually backwards. The committee make a decision and states a position - THEN we can discuss it and vote on it? Doesn't a vote usually involve a choice? Patients have complained that negative comments and objections have been rejected  or deleted from the message board. How "fair" is that?

     Patients are the ultimate stakeholders and are tired of being ignored. This proposal hardly solves anything and can make matters even worse and should not be supported. Using experts for support? Experts have historically been wrong many times and for our situation have hardly provided patients with the care and treatment that they need and deserve. Patients will no doubt continue to fight in their own best interests as they have all along.

Jill McLaughlin

 

Myalgic Encephalomyelitis - the evidence proves it is the only fair name. It’s called informed consent, but we are not being fully informed.  All the facts are being hidden just as they were when CFS was invented to hide "the awful truth" about Myalgic Encephalomyelitis.  The name change advisory board says that the acronym "ME/CFS" is a "medically correct" name to replace CFS, but it will still have a false CFS fatigue definition distorting research, and the demeaning CFS will still be part of the name?  How could anyone believe this unimaginative hype that CFS will disappear when it is clearly part of the acronym/name? Don't be fooled again. 

     The name affects everyone around the world so why is the decision to rename the disease once again in the hands of a select group of Americans?  Where are the international M.E. experts, particularly the ones who examined Myalgic Encephalomyelitis patients long before the terrible CFS name change?  What about Ramsay's 1986 definition or Hyde's 2006 definition?  What about the WHO classifying M.E. as a neurological disease way back in 1969?  What about the history of epidemics dating back to 1934?  Sadly what about the autopsies? Shouldn't we be discussing these terribly important facts?

     Isn't it crucial to discuss the history of the epidemics and the knowledge that Myalgic Encephalomyelitis is a very similar disease to Polio, that it was formerly called Atypical Poliomyelitis until they found that it was caused by other enteroviruses and not polio enteroviruses?  Or that it is a very similar disease to Post-Polio Syndrome, a neurological disease placed correctly at the NINDS?  Why isn't Myalgic Encephalomyelitis placed correctly at the NINDS? No, the CDC prefers to call it CFS, states there are no tests or treatments and hides it at the Office of Women's Health, adding further insult to all the males who suffer from M.E.

     Multiple Sclerosis was called Hysterical Paralysis or Fakers Disease when they did not know how to diagnose it and M.S. sufferers were not believed just as we are not believed, but in the 1950s a diagnostic test was found and the original name, described by a famous physician Charcot in 1860 was restored, and now everyone knows how serious this disease is.  Most people think that we are faking it too when they hear CFS.  It's almost the same story but the major difference is that we had diagnostic tests including MRIs, viral and immune tests, and M.E. experts saying it was Myalgic Encephalomyelitis back in the 80s.  They knew what it was yet they ignored all the evidence, changed it to CFS and created a new definition.

     This is the critical point - there was no need to change the name at all.

     The scientific evidence for inflammation keeps mounting up and proving that the original name was right, so why aren't we simply discussing going back to the historically and medically correct name?  Don't you think it is time that all these questions and facts were discussed openly, and that patients and M.E. experts from all over the world - not just a small group of American experts - are rightly consulted about restoring Myalgic Encephalomyelitis and ensuring that the CDC acts fairly and places M.E. at the NINDS?

     It is the only fair thing to do, in a "fair campaign".

     What is going to help us the most, another confusing name change or the truth about Myalgic Encephalomyelitis, the diagnostic tests, the known viral causation and the real possibility that researchers could have discovered a treatment by now if they had adequate funding?  If only we hadn't wasted the last 20 years on CFS and all those made-up fatigue definitions and the useless studies on fatigue.  M.E. patients not only suffer severe illness and pain, they have been unnecessarily traumatised with disbelief, neglect, abuse, poverty, isolation, loss of family and friends.  This has to stop.

     Please stop and think before you get caught up supporting this mess and then you won't have to complain later on that another wrongful name change did not change anything at all and that the psyches are still getting paid millions to provide Character Breaking Treatment and Gratuitous Exercise Torture while biomedical research is starved.  Stop the madness!  Speak up!  Don't let them get another dollar that should go to urgently needed research and support!

John Anderson, M.E. advocate

 

A recent editorial states: "'ME' has historically been used to describe 'Myalgic Encephalomyelitis' (nervous system inflammation involving muscle pain) - a term that does not accurately describe the disease process in all patients." That misses the crucial point that they have been studying broadly defined CFS patients and not strictly defined ME patients - this false assertion can only be a calculated gamble that patients will fall for such propaganda!

The experts who first named the disease Myalgic Encephalomyelitis some 50 years ago did so based on all the evidence at the time including autopsies which demonstrated inflammation of the spinal cord, and this has been confirmed again as recently as 2006 in a horrifying case of medical neglect and psychiatric abuse in the UK, while in the US an autopsy on a young man revealed viral inflammation of the heart! How many more lives will it take? Why do politics dictate medical inquiry?

ME does not need renaming - it must be reinstated as the only medically justified term for the disease at this time - and CFS must be abandoned if respect and funding are the priority. Myalgic Encephalomyelitis has officially existed for 50 years and together with its previous name Atypical Poliomyelitis provides a continuous historical record of the illness spanning a staggering 70 year period. The only other justified change at this point would be to remove the word "benign" from the WHO-ICD, and the public rightfully alerted to this most pertinent fact. John Anderson, M.E. advocate

 

This is a quote from Frederick Douglass, an escaped slave in the US in the nineteenth century, involved in the campaigns against slavery at the time.

"Those who profess to favor freedom and yet discourage agitation are people who want crops without plowing up the ground. They want rain without thunder and lightning. They want the ocean without the awful roar of its waves.

This struggle may be a moral one or it may be a physical one, but it must be a struggle. Power concedes nothing without a demand. It never did and it never will.

Find out what people will submit to and you will find out the exact measure of injustice and wrong which will be imposed upon them. And these will be continued until they are resisted in either words or blows or both. The limits of tyrants are prescribed by the endurance of those they oppress."

Frederick Douglass, 1857

 

If these so-called ME organisations lack unity and agreement on so many of the basic facts including the historically correct name, how can we expect governments to take them seriously? Too many of these groups are operating under various names such as CFS, CFIDS, or CFS/ME [or ME/CFS] and using the outdated and unscientific Fukuda et al definitions and varying descriptions of the CFS invention that do not describe the serious neurological and multiple system disease ME, which clearly is a notifiable pandemic.

This is a serious public health issue, patients are suffering and dying without appropriate medical treatment, and more will succumb to this disease while the organisations that are supposed to be advocating for us can't even agree on the scientifically verifiable facts - Myalgic Encephalomyelitis is a clearly defined and diagnostically testable disease with a history of epidemic contagion, while CFS was a cleverly designed illness construct to hide the ME pandemic. John Anderson, M.E. advocate

 

Here are some pretty obvious things that need to STOP happening:

. STOP taking Reeves and the Wessely School seriously.

. STOP including anything to do with psychological, psychosocial, primary affective, somatic, mood disorder, or depression, etc.

. STOP using the terms 'CFS' CFIDS, CFS/ME, ME/CFS and chronic fatigue (cf).

. STOP lumping together ME, CFS, MCS, IBS, FM....

. STOP focusing on FATIGUE!!!

. STOP saying ME is caused by Epstein Barr, CMV, HHV6A. The incubation periods make that impossible.

. STOP saying people diagnosed with any of the above became ill suddenly and have any/all of the bodily systems damage that people with ME do. This is simply not true.

 

Here's a new game plan we can all START today:

. START recognising ME!!!! It's been on the books for decades!

. START using the term ME when referring to those who meet the criteria for it (ie., patients whose illness started with a 'sudden onset viral event' that started in the BRAIN -- hence the WHO's G93.3, Neurogenic classification--and then quickly moved to the CNS, and then throughout the body.)

. START demanding peer-reviewed articles in widely known and accepted publications.

. START listening to, reading, and working with Dr. Byron Hyde. He understands the illness far better than any other individual, due to years and years of hands-on time with actual ME patients.

. START dedicating adequate resources to ME studies.

. START a national/worldwide database to start tracking this illness and gathering relevant data.

. START doing BIOMEDICAL research on these patients.

. START understanding that people with ME: DO NOT RECOVER! They suffer horribly for years, and then die.

LK Woodruff, M.E. advocate

 

For 20+ years they have obfuscated to an extreme extent. How can the masses keep falling for their bunk? ME has been documented for many, many years. It's been classified--differently--by the WHO since 1969. Those who have it are horrifically ill and suffering horribly. They die. They are not just 'fatigued' for a variety of reasons. Everyone needs to stop worrying about being polite, and start asking: WHY ARE THESE PATENTS BEING IGNORED, while the focus remains on those 'fatigued' ....

I don't care if those diagnosed with 'CFS' (Fukada, et al) want to keep Reeves/CDC/CAA playing around with 'fatigue' issues... But it is decades past time for some highly qualified and impeccably scientific researchers to get serious about ME and move forward from the work of Dowsett, Ramsey, Hyde and more..... I will not stop until they do, or until I breathe my last breath. And unfortunately, in the existing climate, the latter will most likely occur first. And I find that to be unconscionable and criminal. LK Woodruff, M.E. 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

 

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’)

 

ME has already been called the ‘Disease of a Thousand Names’, yet, in the Spring of 2001, one of the ME Charities has just applied to the Charities Commission for another change. This time, it is from Myalgic Encephalomyelitis to Myalgic Encephalopathy, that is: from muscle pain accompanied by inflammation of the brain and spinal cord to muscle pain and damage to the brain and spinal cord of unknown origin. This clumsy euphemism will not only bloom less sweetly than it’s predecessors but does not fit the facts. Moreover, this change will not benefit research nor relieve the confusion and disbelief which blocks access to standard medical care for these patients. Dr Elizabeth Dowsett (on the use of the term ‘Myalgic Encephalopathy’)

 

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

 

Following successful immunisation against poliomyelitis in the early 1960s and the removal of 3 strains of polio virus from general circulation in the countries concerned, the related non-polio enteroviruses rapidly filled the vacancy. By 1961, the prevalence of diseases (such as viral meningitis) caused by these agents soared to new heights. In the mid 1980s, the incidence of ME had increased by some seven times in Canada and the UK, while in the USA a major outbreak at Lake Tahoe (wrongly ascribed at first to a herpes virus) led to calls for a new name and new definition for the disease, more descriptive of herpes infection. This definition based on “fatigue” (a symptom common to hundreds of diseases and to normal life, but not a distinguishing feature of myalgic encephalomyelitis) was designed to facilitate research funded by the manufacturers of new anti-herpes drugs. Dr Elizabeth Dowsett

 

"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" 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 - in the same way as the British Diabetic Association suppressed the information about the harm caused to diabetics when animal insulin was changed to genetically engineered human insulin (this was cheaper) and patients told that animal insulin as no longer available in 1993 (many deaths, accidents, coma’s and convulsions resulted) The same as they did about BSE etc

     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 over 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) et the sack and lose all research findings.

Differences between ME & CFS by Dr Elizabeth Dowsett

 

Undoubtedly the perverse use of chronic fatigue syndrome, to impose a psychiatric definition for ME by allying it to fatigue syndromes, has delayed research, the discovery of effective treatment(s), and care and support for those suffering from this illness

     I would propose that the use of CFS should now be abandoned and that, following the Minister of Health’s assurances, the WHO definition is now accepted and used in all official documentations. The excellent work on the biological aspects of ME, already carried out by several leading research groups, now requires significant funding.’

Myalgic Encephalomyelitis (ME): a review with emphasis on key findings in biomedical research by Professor Hooper 2006, printed in the BMJ

 

I don't know if it is brain damage, or just general ignorance, that is keeping so many people locked into all of the myths and misperceptions and downright lies. But you all need to start paying closer attention to the DETAILS and start demanding complete separation and definition, especially of ME from all of the other made-up stuff..... Because people are suffering horribly, and then dying, from ME.

     All while these stupid games continue to be played.....

     Wake up, people! Wake up. Wake up. Wake up..... Start dealing with REALITY and the known FACTS here..... And for God's sake, stop the incessant mixing everything together - because that helps NO ONE.

LK Woodruff  

 

None of the fatigue definitions adequately defines or describes a neurological illness, thus the hallmark features of ME are ignored. CFS definitions do not require the presence of neurological problems, so a conflict exists. The inclusion of ME as a part of an umbrella term CFS denies the uniqueness of ME as a distinct entity in its own right which is completely unrelated to CFS - ME is not a fatigue condition. Lumping ME as CFS has resulted in inappropriate diagnosis and treatments.

     CFS as defined by the CDC and CFIDS by US patient groups is not a recognizable entity of service to anyone with ME, and has caused those with ME considerable harm. We should not support them.

The ONLY way to get anywhere is to hit them where it hurts - boycott these groups - loudly and publicly. But patients are very passive and buy into the infighting or divisive accusations.  Rich Carson is on a campaign to promote and push -opathy/CFS. That's his mission.

LK Woodruff  

 

There is a growing trend right now for all diagnosed over the years with 'CFS' to start saying they have ME. Nothing could be farther from the truth.

     If a person's illness didn't start with a 'sudden onset viral event', which damaged the brain, brain stem and CNS, then caused a 'cascade of events throughout the body' causing a multi-systemic illness and the well-defined and very specific 'symptom cluster' of ME - then they do not have ME!!!

     So they need to work diligently with their Dr(s) to figure out what they really do have, by meticulously going through their medical history first, then doing appropriate testings (lab, blood work and more). Remember, too, that Hyde has stated very publicly and strongly that things like Epstein Barr, CMV, HHV6 and more do NOT have the appropriate incubations periods, to be implicated in ME. Q fever, denque fever, mono, poisonings...are also not what cause ME. Perhaps they are what some of the MISdiagnosed 'CFS' patients have; tests would help verify or dismiss those possibilities for them....

LK Woodruff  

 

Myalgic Encephalopathy is open to psychiatric interpretation as it is not coded in any WHO classification, and the CDC/Fukuda/Holmes based CFS criteria include psychiatric patients, in fact anyone with fatigue! The IACFS Conferences still give far too much preference to fatigue and behavioural studies, and the highly inappropriate CBT/GET research. Fatigue is not a disease, it is a symptom of all chronic illnesses and exercise is only gradually commenced after successful treatment, not as a misguided substitute! The evidence for mitochondrial dysfunction and exercise intolerance is not in doubt so why are these psychiatric studies still getting funding and taking up valuable time and space at a medical conference?

It is apparent that the name change committee does not wish to look beyond the distorted findings of these heterogenous CFS studies which inevitably produce inconclusive results, so who do they really represent? They will not consider the mounting evidence from independent unbiased researchers and the conclusions from autopsies that do confirm CNS inflammation and vasculitis, while referencing the history of the coinciding epidemics of ME and Poliomyelitis that began in 1934, the later discovery of 69 related polio and non-polio enteroviruses, and the current evidence of damage to the Rnase L anti-viral pathway.

The experts who first named the disease Myalgic Encephalomyelitis some 50 years ago did so based on all the evidence at the time including autopsies which demonstrated inflammation of the spinal cord, and this has been confirmed again as recently as 2006 in a horrifying case of medical neglect and psychiatric abuse in the UK, while in the US an autopsy on a young man revealed viral inflammation of the heart! How many more lives will it take? Why do politics dictate medical inquiry? ME researchers have been forced to use the name CFS and its definitions to have their studies published in peer-reviewed medical journals, and this unethical situation will continue to waste more precious money on predictably inconclusive research results.

ME does not need renaming - it must be reinstated as the only medically justified term for the disease at this time - and CFS must be abandoned if respect and funding are the priority.

Myalgic Encephalomyelitis has officially existed for 50 years and together with its previous name Atypical Poliomyelitis provides a continuous historical record of the illness spanning a staggering 70 year period. The only other justified change at this point would be to remove the word "benign" from the WHO-ICD, and the public rightfully alerted to this most pertinent fact.

We can also be justifiably wary of this name change at a time when major funding is still not being allocated to medical research!

It is time we stopped debating the long established name and instead focus our attention on restoring the basic human rights of patients by securing major funding for intensive medical research, educating the medical profession, and delivering long overdue treatment. It is time we were heard.

We cannot afford to have another damaging name imposed on us again - we must act now!

John Anderson

 

For research reference purposes:  When anyone new to this disease begins to research it they will find in PubMed 10 references to Myalgic Encephalopathy.  Conversely, the term Myalgic Encephalomyelitis appears in 3,447 references on PubMed. We ask that patients, caregivers, researchers and health care providers consider the long, astutely observed history of this disease before making a decision similar to the one in 1988 that has burdened us with this issue for two decades.

Steven Du Pre and Lois Ventura

 

Linking CFS to ME has been tried for decades in parts of Europe and Australia with a devastating effect. It has been like writing out a blank check to the psychiatrists. In other parts of the world ME is already a recognized disease, and it is in fact the linking of CFS to ME that has created the terrible problems there. For patients in those countries it is a real fight to get rid of the term CFS - and to not have it linked to ME. There is no doubt whatsoever, that money and politics will see to it that this becomes a very difficult task. 

Lajla Mark

 

A mere swap over will not work - the number of persons diagnosed with CFS as fatigue is many times higher than those who actually have the ME which was defined by Ramsay, Richardson et al. - that is Myalgic Encephalomyelitis. Approximately 75% of those now labelled as CFS will not fit the Myalgic Encephalomyelitis criteria. But Rich why sacrifice the 25% with physical Myalgic Encephalomyelitis? These are the very sickest of people and who are dying as a result of this condition from cardiac failure, thyroid problems and CYP450 (liver malfunction).

Dr. Dorothy Morris PhD., Researcher, Member FEDAN.

 

‘There has been a tendency by some individuals and organisations to assume that M.E. and CFS are the same illness. Over the course of two International Association of Chronic Fatigue Syndrome (IACFS, formerly the American Association of CFS) conferences, there have been suggestions that the name CFS be changed to M.E., while retaining the CFS definitions as a basis for such change. This does not seem to me to be a useful initiative: it would simply add credence to the mistaken assumption that M.E. and CFS represent the same disease processes. They do not. M.E. is a clearly defined disease process. CFS by definition has always been a syndrome. At one of the meetings held to determine the 1994 U.S. Centers for Disease Control and Prevention (CDC) definition of CFS, in response to my question from the floor, Dr. Keiji Fukuda stated that numerous M.E. epidemics he cited the Los Angeles County Hospital epidemic of 1934, the Akureyri outbreak of 1947-48 and the 1955-58 Royal Free Hospitals epidemics-- were definitely not CFS epidemics. Dr. Fukuda was correct.’ Dr Byron Hyde

 

The physician and patient alike should remember that CFS is not a disease. It is a chronic fatigue state as described in four definitions starting with that published by Dr. Gary Holmes of the CDC and others in 1988 (Holmes, Kaplan, Gantz, et al., 1988; Holmes, Kaplan, Schonberger, et .al., 1988). The definition created by Lloyd, Hickie, Boughton, Spencer, and Wakefield (1990) is also widely used in Australia. There are two subsequent definitions. The Oxford definition of 1991 (Sharpe et al., 1991) and the 1994 NIH/CDC definitions (Fukuda et al., 1994) are basically, with a few modifications, copies of the first definition. Where the one essential characteristic of ME is acquired CNS dysfunction, that of CFS is primarily chronic fatigue. By assumption, this CFS fatigue can be acquired abruptly or gradually. Secondary symptoms and signs were then added to this primary fatigue anomaly. None of these secondary symptoms is individually essential for the definition and few are scientifically testable. Despite the list of signs and symptoms and test exclusions in these definitions, patients who conform to any of these four CFS definitions may still have an undiagnosed major illness, certain of which are potentially treatable.

Although the authors of these definitions have repeatedly stated that they are defining a syndrome and not a specific disease, patient, physician, and insurer alike have tended to treat this syndrome as a specific disease or illness, with at times a potentially specific treatment and a specific outcome. This has resulted in much confusion, and many physicians are now diagnosing CFS as though it were a specific illness. They either refer the patient to pharmaceutical, psychiatric, psychological, or social treatment or simply say, "You have CFS and nothing can be done about it." Dr Byron Hyde

 

M.E. appears to be in this same family of diseases as paralytic polio and MS. M.E. is definitely 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

 

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. Few physicians realize that almost all cases of poliovirus recovered from poliomyelitis victims came from cadavers. At the very least, these enteroviruses must be recovered from patients during their onset illness and this has rarely been done. An exception is in the case of the Newton-le-Willows Lancashire epidemic where Dr. W. H. Lyle’s investigation recovered ECHO enterovirus. Enteroviruses are one of the most likely causes of M.E. If this belief is correct, M.E. could be vanquished by simply adding essential enteroviral genetic material from these enteroviruses to complement polio immunization. Dr Byron Hyde

 

Psychiatric treatment is very useful and essential for psychiatric patients. Primary M.E. patients are simply not psychiatric patients. Unfortunately, it is not only psychiatrist physicians that have made themselves the tools of insurance companies. Dr Byron Hyde

 

All definitions which wear the 'f' word (ie. fatigue) in their name are not M.E. nor neurological. They are definitions of fatigue conditions. And when these definitions were written it was not neurological M.E. which they were attempting to define. The Committee for Justice and Recognition of Myalgic Encephalomyelitis

 

When CFS Holmes et al. 1988 was written - the condition which they were trying to define was Chronic Epstein Barr Virus. The principal symptom was 'fatigue'. It is interesting to note that those who were familiar with M.E. on the committee refused to sign off on this definition - as they pointed out that it was not a definition of M.E.  The Committee for Justice and Recognition of Myalgic Encephalomyelitis

 

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

 

"Myalgic Encephalopathy is not the same as Myalgic Encephalomyelitis. Encephalopathy can mean 'brain abnormal state' and this meaning would therefore endorse treatments such as CBT and GET - which do not work in those with neurological M.E. (which meets the Ramsay criteria). This change of name to 'opathy' can therefore be seen to endorse psychological therapies as treatment."  The Committee for Justice and Recognition of Myalgic Encephalomyelitis

 

“The crucial differentiation between ME and postviral fatigue syndromes lies in the striking variability of the symptoms not only in the course of a day but often within the hour. This variability of the intensity of the symptoms is not found in post viral fatigue states" Dr Melvin Ramsay

 

Criticism of the name, Myalgic Encephalomyelitis: The reason why these physicians were so sure that they were dealing with an inflammatory illness of the brain is that they examined patients in both epidemic and endemic situations with this curious diffuse brain injury. In the epidemic situation with patients falling acutely ill and in some cases dying, autopsies were performed and the diffuse inflammatory brain changes are on record.

Recently an M.E. patient's spine has been examined in the UK and the inflammatory nature was also discovered. Myalgic Encephalitis is a diffuse inflammatory injury of the capillaries at the level of the basement membrane of the brain. It makes no sense to rename the horse and call it Myalgic Encephalopathy. All brain pathologies involving brain tissue are encephalopathies. Let us stop fussing around and get back to the real problem and that is investigating the patients, segregating them into sub-type injuries and working on the treatment of these children and adults.

Were these epidemics that I have spoken about cases of Myalgic Encephalomyelitis? They were. I have personally visited all of these cases except for the Cumberland epidemic and Wallis left us such a good description of that epidemic that there can be no doubt. I have personally gone to Los Angeles and examined patients from the Los Angeles epidemic. I have gone to Iceland and examined patients from the Akureyri epidemic. I have examined patients from the Royal Free Hospital epidemics, from the Newcastle sporadic illnesses. Many are the same or similar and many of them had been rejected or shunned because they were not true poliomyelitis. However they were all cases of Myalgic Encephalomyelitis. Dr Hyde

 

By 1986 HHV6 was already known to have an incubation period of 9 days due to human experimentation when the actual virus was injected into several children. See (Gorbac, Second Edition, Infectious Diseases, page 1335). When acquired by random infection, the incubation period of HHV6 Roseola was more like 12 days. So once again anyone with access to a library or a computer would have soon dispelled any view that HHV6 was a cause of M.E. epidemics where the incubation was approximately 7 days or less. Is it possible that Steven Strauss and the other intelligentsia of the National Institute of Health (NIH) in Bethesda and CDC in Atlanta and elsewhere didn't have access to libraries and the Internet? Maybe we should start a public request to ask for donations for them. Dr Hyde

 

Associating the Lake Tahoe epidemic with Epstein Barr Syndrome was frankly ridiculous and you will see why almost immediately. Anyone who realizes that infectious mononucleosis is caused by the herpes family virus, Epstein Barr Virus (EBV), and that the incubation period of this illness is approximately 40 days, should have realized that you simply cannot have a rapidly spreading viral epidemic with a virus with a latent period of 40 days. Neither Dr Straus nor Dr Holmes, senior government physicians, should have fallen into such a trap. They only had to go to the excellent CDC library to realize that rather than spending half a million dollars or so on a publication that they should have known would not have incriminated EBV.  Yet this epidemic somehow spread the myth that this illness was caused by EBV. Such is the perseverance of error. Dr Hyde

 

Myalgic Encephalomyelitis is different form all other illnesses and as is very clearly pointed out above, M.E. is different from all the definitions of CFS. Concerned that there may be attempts to confuse ME with other conditions, in 1989 Dr. Ramsay wrote a concise statement to clarify that M.E. is distinct and identifiable and is not to be confused with other forms of debility or flu or fatigue or post flu.

As we know, ME has many, many, many symptoms but Dr Ramsay presents this statement to clarify how ME is different from all other conditions, and a definite case can be recognized clinically by a triad of particular muscle, brain and circulatory dysfunctions that are characteristic.

We are indebted to Dr Ramsay, an outstanding infectious disease specialist who devoted much effort to the investigation of our disease from the time that he was confronted with the epidemic at the London hospitals in the 1950’s. Dr Ramsay is the recognized authority in ME, established upon his direct personal involvement in the investigation of the epidemics, research and scientific studies and the examination and treatment of individual patients for over 30 years. Dr. Ramsay’s fame and standing are no accident and we can see that his descriptions of what make this disease unique are accurate and Ramsay’s M.E. is the same disease we have today.

It is clear that attempts at confusion and name changes would serve to obscure its history and also its origins. So we must never forget Ramsay. The worldwide epidemic we have today is the same disease that Ramsay encountered many years ago. The Committee for Justice and the Recognition of M.E.

 

Dr Melvin Ramsay and others further defined the illness, and Myalgic Encephalomyelitis became the recognized term for this neurologic infectious disease.

A number of distinguished doctors continued to study and report on ME outbreaks, including Wallis, Acheson, Richardson, Parish, Henderson, Shelokov, Dowsett, Ryll, Behan, and Hyde. Their writings have brought us a wealth of information about Myalgic Encephalomyelitis, and a continuous historical record of our disease over many decades. Perhaps most impressive among them, Dr Richardson could attest that the cases he saw in the year 2000 have the same disease as patients that he and Dr Ramsay encountered in the 1950s: the neurological disease defined as Myalgic Encephalomyelitis. The Committee for Justice and the Recognition of M.E.

 

The BOTTOM LINE is that NONE of us who have ME are willing to sit back and allow our illness to continue to be highjacked by patients 'fatigued' for a myriad of reasons (Lyme, thyroid, mono, depression, Q-fever, or whatever).

The FACTS

The Terms,

The Defintions,

The Criterias

ALL must be adhered to. Doing anything less is just plain sloppy and indicates a level of ignorance that must be rectified immediately, before even more damage is done to the patients.

This ridiculous and preposterous and and ~relatively new within the last several years~ (since the creation of the 2003 ME/CFS Canadian Criteria)  'blending' and 'lumping' of 2 entirely DIFFERENT THINGS is just a continuation of the games being played by vested interests, who exist to keep the disability numbers LOW.

We ALL need to move beyond that crazy mixed notion and START DEMANDING CORRECT ILLNESS IDENTIFICATION, followed closely by rigid, strict, precise, well-planned and well-coordinated LARGE SCALE scientific research efforts on EACH  illness seperately.

Any unwillingness to do so is just another sign of illness obfuscation done by those who benefit from keeping the truth hidden. And that would not be the patients, now would it??????

Think carefully.

Think clearly.

Think fully.

Use logic.

DEMAND BETTER. And stop this foolishness and nonsense once and for all.

Because YOUR lives and health depend upon it.  And remember this, too:

Studies done on mixed patient groups only produces mixed results (data). And that makes the data irrelevant. It's a waste of time, money and effort. It helps no one. Which is exactly what the past 20 years have been all about. LK Woodruff, M.E. advocate

 

Please, all of you, go through these various criterias - compare them, look at what the focus of each is, note the exclusions, and pay attention to whom the authors of each are. Then determine which one fits you. -->If you don't fit any of them precisely (close doesn't count), and you don't fit the ME criteria, then you and your doctor(s) need to go back to the drawing board to figure out specifically and definitively what illness you actually do have. You owe it to yourselves to get to the truth. LK Woodruff, M.E. advocate

 

‘Dr. Manu's note that preceded his CV and explained his views on ME, left me wondering what qualified him to pass an opinion at all. Not that he actually referred to ME. He prefers the title, chronic fatigue syndrome ( CFS) - a condition, concocted by self-serving members of his profession and a condition which bears no resemblance to Myalgic Encephalomyelitis (ME). This issue is not about a concocted disorder, the definition of which is determined by conflicts of interest and nothing else. It is about a scientifically proven, and a WHO accepted physical disease that is both life-destroying and life-taking.’ Gurli Bagnall, M.E. advocate

 

'At one time, sick people recuperated or convalesced.  Now according to a group of megalomaniacal brain-washers and self-elected "law-makers", they are expected to rehabilitate along with murderers, rapists and thieves. The law which states that a person can only be sectioned if he is a danger to himself and/or others, has been swept aside by the above mentioned self-serving monsters masquerading as doctors. Many will dismiss this as fanciful rubbish.  After all, we live in civilized societies where such things could never happen. Unfortunately, they can and they do. It happened to the recently deceased [M.E. patient] Sophia Mirza.' Gurli Bagnall, M.E. advocate

 

the illness ALREADY HAS a name - myalgic encephalomyelitis

the illness already has a definition (Dr. Byron Hyde, Nightingale Definition of M.E., 2006)

any other name (and definition) distances the illness from original research (Ramsey, Richardson, Dowsett)

'CFS' is meaningless, denies the biomedical reality of the illness, denigrates patients as psychologically ill and discredits their claims for medical treatment and welfare benefits

the above consequences were just what the CDC intended in creating 'CFS' (i.e. intended to discredit the illness and evade financial responsibility for the ill)

combining 'ME' with 'CFS' makes the composite term meaningless

the 'ME' part is meaningless if it means 'ME-opathy' (no such thing)

the 'ME' part cannot stand for two terms at once - this is sloppy and will breed more confusion

Lesley, M.E. advocate

 

GENETICS AND M.E. by Gurli Bagnall 'If science is to follow this line of inquiry, then let it be honest with realistic terms of reference. As it stands, it could well be another route to the psychiatric dustbin. In fact, with the endorsement of people like Simon Wessely, it is a certainty.’

 

It will be up to those countries using the name CFS or ME/CFS, to get the CFS and ME mess sorted out and distinctly separate CFS from ME - and also distinctly separate the diseases and conditions covered by the CFS umbrella term from each other. Because of the worldwide confusion about ME and CFS amongst physicians and health authorities - and patients for that matter - it is of vital significance to clarify and emphazise the difference between these two. We need a new era where correct medical information about what ME is - and certainly is not - is highly needed. Lajla Mark, M.E. advocate

 

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

 

For more see: Problems with the so-called "Fair name" campaign: Why it is in the best interests of all patient groups involved to reject and strongly oppose this misleading and counter-productive proposal to rename ‘CFS’ as ‘ME/CFS’

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Exciting book news!

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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