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.

Why‘CFS’ must be abandoned: Extra

The paper Why the bogus disease category of ‘CFS’ must be abandoned explained why renaming, refining or sub-grouping 'CFS' cannot work and why 'CFS' must be abandoned. 

This paper: Why ‘CFS’ must be abandoned: Extra features comments from other members of the M.E. community which also explain why renaming, refining or sub-grouping 'CFS' cannot work and why 'CFS' must be abandoned, (and why Myalgic Encephalomyelitis must remain the name used only for Myalgic Encephalomyelitis patients) and so on. 

Why‘CFS’ must be abandoned: Extra

'Do not for one minute believe that CFS is simply another name for Myalgic Encephalomyelitis. It is not. The CDC 1988 definition of CFS describes a non-existing chimera based upon inexperienced individuals who lack any historical knowledge of this disease process. 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 and the more problematic it becomes.

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. The physician and patient alike should remember that CFS is not a disease. It is a chronic fatigue state.

Thirty years ago when a patient presented to a hospital clinic with unexplained fatigue, any medical school physician would have told the students to 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.

Some individuals, dissatisfied with the name chronic fatigue syndrome, [have] suggested changing it to myalgic encephalomyelitis or some variation of that name. This would be unwise. M.E. and CFS should be separated as definitions. They are not the same.'

A New and Simple Definition of Myalgic Encephalomyelitis and a New Simple Definition of Chronic Fatigue Syndrome & A Brief History of Myalgic Encephalomyelitis & An Irreverent History of Chronic Fatigue Syndrome and The Nightingale Definition of M.E. by Dr Byron Hyde M.D.

 

There has been a tendency by some individuals and organizations 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.

A New and Simple Definition of Myalgic Encephalomyelitis and a New Simple Definition of Chronic Fatigue Syndrome & A Brief History of Myalgic Encephalomyelitis & An Irreverent History of Chronic Fatigue Syndrome and The Nightingale Definition of M.E. by Dr Byron Hyde M.D.

 

Myalgic Encephalomyelitis: is a simple term that translates into English in the following manner:

• My = muscle

• Algic = pain

• Encephalo = brain

• Mye = spinal cord

• Itis = inflammation

Myelitis: In part the name myelitis was a logical association with the illness poliomyelitis that in 1955 was being tamed by the Jonah Salk Poliomyelitis Immunization.

Criticism of the name, Myalgic Encephalomyelitis: The critics of this term have had no problem with the Myalgic part referring to muscle pain.

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.

Inflammation is often associated with increased sedimentation rate, fever, inflammatory blood cells but these are not usually seen in paralytic poliomyelitis and yet no one doubts that this is in part an inflammation of the capillaries supplying the anterior horn cells.

Circa 1996, an autopsy was performed on a woman with Myalgic Encephalomyelitis in Newcastle-upon- Tyne by Dr John Richardson and the brain tissue examined by Dr. James Mobray at St Mary's Paddington. This woman had a history of typical Myalgic Encephalomyelitis, was well known by Dr Richardson and accidentally died when her car fell off the side of the pier into the North Atlantic, the cold water preserving the brain tissue. Dr Mowbray was able to demonstrate an autoimmune inflammatory injury at the capillary level of the brain and basement membrane, the area that separates the capillaries from the neurons and brain tissue. In effect the same juxtaposition as in poliomyelitis but in this case in the brain and not in the spinal cord. (Poliovirus also injures the sub cortical areas of the brain.)

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.

Do not for one minute believe that CFS is simply another name for Myalgic Encephalomyelitis (M.E.). It is not. Though CFS is based upon a typical M.E. epidemic, in my opinion it has always been a confused and distorted view of reality.

The invention of Chronic Fatigue Syndrome has to be one of the most curious cases of inventive American scientific imperialism that one could imagine.

A New and Simple Definition of Myalgic Encephalomyelitis and a New Simple Definition of Chronic Fatigue Syndrome & A Brief History of Myalgic Encephalomyelitis & An Irreverent History of Chronic Fatigue Syndrome and The Nightingale Definition of M.E. by Dr Byron Hyde M.D.

 

THE 2003 CANADIAN M.E. AND CFS DEFINITION Let me say, that this is the first definition constructed by specialists who have spent collectively over 100 years studying M.E. and CFS. It is the first definition and introduction of M.E. and CFS that makes a bit of sense, but like I in the first years of study, I confused M.E. and CFS as being the same. As I have explained, they are not. However, until a better set of definitions is constructed, we should go with the so-called Canadian definition. In effect, the Canadian definition represents some of the best, the most experienced and the most learned of the North American physicians who have studied M.E. and CFS. It is also the first major definition to bring back the term Myalgic Encephalomyelitis.

A New and Simple Definition of Myalgic Encephalomyelitis and a New Simple Definition of Chronic Fatigue Syndrome & A Brief History of Myalgic Encephalomyelitis & An Irreverent History of Chronic Fatigue Syndrome and The Nightingale Definition of M.E. by Dr Byron Hyde M.D.

 

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.  It will, however, preserve the acronym ‘ME’ – a historical logo which still retains its integrity in many parts of the world and which, if replaced, would not only add to the present chaos, but prove extremely expensive in terms of office stationery.

Historical Background:  The earliest definitions were brief but succinct, based on clinical observation and accompanied by a checklist of symptoms.  WALLIS (1995) provided a concise list with appropriate variations for children and adolescents, while RAMSAY (1956) introduced the descriptive term (Myalgic encephalomyelitis), which has stood the test of time over half a century in the UK, Europe, Canada and Austrialasia.

Fatigue States:  These definitions first arose in the USA following the 1984 Lake Tahoe epidemic (which was misattributed to a Herpes Virus infection).  Both the earliest definition (HOLMES et al, 1988) and its revision (FUKUDA, 1994) elevated tonsillitis, glandular enlargement and fatigue to unreal importance while overlooking the characteristic encephalitic features of the genuine illness.  These mistakes also inflated the possibility of a psychiatric diagnosis, leading to the incorporation of such a heterogeneous population of psychiatric and non-psychiatric causes later on, that research groups of different persuasions were unable to compare results or evaluate treatment.

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.

A Rose by Any Other Name by Dr Elizabeth Dowsett

 

In those countries which have adopted mass polio immunisation during the past 30 years, outbreaks of ME still continue unabated.  Interest in one such epidemic (Lake Tahoe, Nevada USA 1984) misdiagnosed initially as Epstein-Barr Glandular Fever – a Herpes virus infection, led a group of non-clinical scientists active in the field of Herpes virus research and evaluation of drugs, to formulate and tailor a fitting new research definition (Holmes et al 1988).  The exclusion or downgrading of many characteristic ME symptoms led to an unreal emphasis on psychiatric explanations and diminished estimates of the real prevalence.  Attempts to correct this initial “Fatigue” definition in the UK (Sharpe et al 1991) the USA (Fukada et al 1994) and in Australia (Hickie et al 1995) became so inclusive of a heterogeneous population of sufferers from psychiatric and miscellaneous non psychiatric states as to elevate the suggested prevalence of ME by some 250 times.  Major mistakes in these definitions include: (i)  overlooking the distinguishing encephalitic features of ME (ii) elevating “fatigue” (an inescapable accompaniment of normal human existence and of  cardiovascular, metabolic malignant, psychiatric, neurological and other disabling conditions) to unreal diagnostic importance among symptoms.

(iii)  to suggest that ME is merely one subgroup amongst this heterogenous collection of physiological and pathological states, makes thus making any attempt at differential diagnosis between them impossibly expensive to pursue.   (iv) to suggest that diagnosis must be delayed for 6 months, vitiates any real attempt at virus investigation, especially among the young. 

I would urge all our colleagues to look again at the literature prior to 1988 before redefining this illness.  Meantime, the Ramsay description of myalgic encephalomyelitis in 1986 with slight modifications to form a short definition still remains a useful guide to those new to this work.

Redefinitions of ME - a 20th Century Phenomenon by 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 entero viruses 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 1980’s, 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.  However, a “fatigue” definition (which also omits any reference to children) has proved disastrous for research in the current decade. 

Research into ME 1988 - 1998 Too much PHILOSOPHY and too little BASIC SCIENCE! by 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

 

There is a great deal of research papers detailing Myalgic Encephalomyelitis.

To change the name is, we agree with Professor Hooper, dangerous.

It will make it harder to track and correlate previous scientific works on ME.

It is 50 years since ME was given the name encephalomyelitis.

Myalgic Encephalomyelitis has been used in medical literature since 1956.

The term is listed by the World Health Organisation under code WHO-ICD-10-G93.3.

Myalgic Encephalopathy is NOT classified by the World Health Organisation in WHO-ICD-10-G93.3. 

To change to another name adds nothing to the cause of ME sufferers and will only cloud the debate in favour of those attempting to portray the illness as a somatoform illness.

Invest in ME will continue to call ME - MYALGIC ENCEPHALOMYELITIS - the correct name.

 

It is crystal clear that those who expound the 'Wessely School's' 'CFS/ME' psychosocial illness model have worked very, very hard to gain the position they hold currently. It is also crystal clear that they wish to cling tightly to it and not even consider other ideas or options.
 
We all know there is no formal clinical or research criteria, nor any medical diagnostic code, for 'CFS/ME' so it's unclear how they have managed to continue this fantasy for so long...but apparently the quest for SCIENCE and FACTS isn't essential to everyone:(
 
We have similar situations here in the USA, with some only willing to recognize 'CFS', and others clinging to the made-up 'CFIDS', etc.
 
It appears the only way those of us with true ME  can effectively deal with these other groups is to:
 
                     Break Away!
 
We must make a clean break and end any further connections with CFS, 'chronic fatigue', CFIDS, and all of the other names bandied about so casually....
 
We must do fund raisings and pay the top ME researchers to work on uncovering the etiology of our illness (and not others).
 
We must educate the Dr.s, media and public about the devastating and profound effects of having and living with ME.
 
We must establish and maintain national or worldwide databases on patients who meet the Ramsey &/or Canadian criterias (only).
 
We must make sure appropriate autopsies are done those with ME, by qualified medical personnel and following set standards.
 
We must set up support networks for people with ME, so they will no longer be casually lumped together with others who are 'fatigued'.
 
We must direct the focus and maintain the momentum...if we want to realize significant progress and illness knowledge in our lifetimes.
 
It is crystal clear that NO ONE is going to do this for us. So we must do it for ourselves.
 
Or accept the present status quo...which is accomplishing:
 
                     NOTHING.

LK Woodruff  

 

Klimas has worked with the USA CDC & Reeves on 'CFS' (Fukada, et al) issues for years...and at the very same time, she also worked with the other 10 authors of the Canadian Criteria, on 'ME/CFS' (which is a name that group made up for their 109 page work, which is, admittedly, far better than anything written about 'CFS' (Fukada, et al) but is also, nonetheless, still a MIXED BAG of both 'CFS' (Fukada, et al) and ME (Ramsey)!!!

The NICE Guidelines are a PEFECT FIT for 'CFS/ME'. Because that's what they were written for.

'CFS/ME', of course, is the name given to the Wessely School's made-up psychosocial illness MODEL--not illness, MODEL--which they wrote to help the insurance companies deny patient claims. It is about a very vague and largely 'mental' illness.... It is not recognized by the WHO, nor given any ICD Code number.

The NICE Guidelines are NOT about 'ME/CFS' (Canadian Criteria).
The NICE Guidelines are NOT about ME (Ramsey, Dowsett, Hyde).

Though some very confused individuals, all claiming to have professional level expertise and knowledge, have tried to insert little bits and pieces of both 'ME/CFS' and 'ME' into them:(

And where 'CFS' (Fukada, et al) is in all of this is even less clear.....

-->And that's the BIG PROBLEM: CLARITY!!!!!.

-->If you all would pay FAR CLOSER ATTENTION to all of the details and subtleties, you could easily see this. If you all would stop inserting your own 'favorite' term/name--instead of the one used by the original author--much of this 'lumping and mixing together' confusion would cease.

-->Because you all are your own worst enemies, when you do that! YOU are the ones either keeping things confused, or allowing the so-called 'experts' (many of whom have vested interests) to do so.

'CFS/ME' is not 'CFS' (Fukada, et al) or 'ME' (Ramsey, Dowsett, Hyde). It does not exist. It is not classified by the WHO, nor assigned an ICD Code!

'CFS' (Fukada,et al) is not 'CFS/ME' , nor is it 'ME'. The USA CDC thought--or at least said--they were dealing with a 'new and emerging illness' then...whether thru ignorance or deliberate obfuscation, who knows.... It has since undergone even further weakening, to the point where it now includes anyone 'fatigued' for a multitude of reasons:( It is largely considered to be 'psychological', with a few minor physical symptoms.

'ME' is not 'CFS/ME' or 'CFS' (Fukada, et al). ME has been on the books for many years, and has been formally recognized by the WHO since 1969!. It is classified in the ICD10 Codes under G93.3, Neurogenic - which means it STARTS IN THE BRAIN. It is initiated by a 'sudden onset viral event'--usually upper respiratory but perhaps also rarely in the gut. This damages the brain (deep, sub-cortical), the brain stem and the CNS. Then a 'cascade of events' takes place throughout the body, causing multi-systemic damage (in a similar fashion to that of the demyelination of MS.) It is very serious and very debilitating and has nothing to do with 'fatigue'.

Yet despite that, to-date, ME has received far less attention, and next to no biomedical research.

And this is what needs to change!!!! ME (-itis, not -opathy!!!) needs to be studied solely by itself, in a serious and biomedical fashion!!!!
And not continued to be lumped together with ANYTHING ELSE. And especially not made-up nonsense.......

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. No one gets it.

Rich Carson is on a campaign to promote and push -opathy/CFS. That's his mission.

LK Woodruff  

 

ME is an 'illness' classified under G93.3, Neurogenic. That means it starts in the brain. It has an acute (i.e., sudden) onset due to a viral event (almost always upper respiratory), which in turn causes a 'cascade of events throughout the body'. So the end result is a disease process that very serious and extremely debilitating - an illness that is multi-systemic with a well-defined and lengthy  'symptom cluster'.

CFS remains a 'syndrome' (not an illness or disease), and it is based on a primary symptom of 'fatigue'. Which is quite nonsensical, as many, many illnesses present with a symptom of fatigue! It's criteria (symptom list, if you will) is very short...and not at all like ME's......

So WHY do so many who should know better by now keep insisting ME and CFS are the same thing????

WHY did so many, who should have known better back in 1988, not know about ME then???

WHY is ME not formally recognized in the USA, when it has been in other countries for many years? Only part of the answer is: because we still don't use the 15+ years old ICD10 Codes!

WHY is so little true ME research done, when Atcheson, Ramsey, Dowsett & Hyde have already discovered and documented so much about ME?

WHY were Hyde and others, who flew in to Lake Tahoe after that outbreak and identified it as ME, NOT LISTENED TO????

And WHY is Hyde--the world's preeminent ME authority now--still not being listened to??? -->He is adament that ME and CFS are 2 entirely different entities!!! He has worked with many around the world for many years. (see CO-CURE today, post # 5).

LK Woodruff  

 

It is just crystal clear now that any further 'mixing' of ME with 'CFS' (Fukada, et al) will simply and only perpetuate the existing confusion. Plus, it's not based on any SCIENCE, but rather on lumping and mixing things together.

So I have to ask WHY the folks in the UK are feeling such a strong need to use their term of ME/CFS?????


- The term 'CFS/ME' should never be used or given any formal credence. It means nothing.

- As Hyde has emphatically stated, any diagnosis of 'CFS' (Fukada, et al) is really a MISdiagnosis, and those patients should work hard with their Drs to determine what it really is that they have.... What is causing their 'fatigue'.....

- And ME, G93.3, Neurogenic, is already well-defined and differently classified, and has been for many years. So why would anyone feel any need to mix it with anything else???? It stands well alone.

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; testings would help verify or dismiss those possibilities for them....

LK Woodruff  

 

Reasons to Reinstate Myalgic Encephalomyelitis and bypass using Myalgic Encephalopathy in the U.S.

Myalgic Encephalomyelitis has solid standing historically, internationally and with the World Health Organization in its ICD-10 neurological code G93.3 for nearly four decades.  There is no such disease called “Myalgic Encephalopathy” listed in the ICD-10.  Myalgic Encephalopathy therefore cannot be coded on a patient’s records for insurance or disability purposes.  “Encephalopathy” alone is designated as "unspecified" and coded at G93.4, separate from M.E. and CFS at G93.3.  (See http://www.who.int/classifications/apps/icd/icd10online/ )  We would lose historical and international credibility over terminology already debated and settled in the UK more than 5 years ago.

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.

"Myalgic Encephalopathy is not the same as Myalgic Encephalomyelitis. None of the contemporaries of Dr. Ramsay, such as Dr. Dowsett and Dr. Richardson, who have been asked to comment on the appropriateness of a change from ME'itis to ME'opathy have found ME'opathy an acceptable explanation. 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.  Muscle pain brain myelin inflammation [Myalgic Encephalomyelitis] is not the same as muscle pain brain abnormal state [Myaglic Encephalopathy]. And the neurological damage which is evident in ME can be explained by myelin inflammation but it cannot be explained by 'brain abnormal state'. Evidence for brain damage has been found in the research of persons such as Casse et al. (2001), Poser (1992) and others.”  [Statement from The Committee for Justice and Recognition of Myalgic Encephalomyelitis]

In summary, we feel from the historic perspective of legends such as Richardson, Ramsay and many others who also observed and treated thousands
of M.E. patients, their observations overwhelmingly concluded that MYALGIC ENCEPHALOMYELITIS is the more appropriate description of this disease.  It is the accepted term internationally by an overwhelming majority of patients and researchers.

Myalgic Encephalopathy by its broad defining nature (much the same as the Fukuda Definition for CFS), can and has been corrupted to include mental illness, making it susceptible to treatments that have proven to be useless at best, and at their worst, damage the patient (treatments such as graded exercise therapy [GET] and cognitive behavioral therapy [CBT]).  In that capacity, Myalgic Encephalopathy/CFS has been used interchangeably with Myalgic Encephalomyelitis, creating irreparable damage and even death to patients here and abroad.  We do not want to see this damage perpetuated.

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

 

Until 1988, there was a disease diagnosed in the U.S. as epidemic neuromyesthenia that was known to be the same thing as the disease diagnosed in the rest of the English-speaking world as myalgic encephalomyelitis.

Then the CDC and NIH took a wrong turn and re-named this disease "chronic fatigue syndrome."  At first (in 1988) they insisted that "CFS" was NOT the same thing as M.E. (you will find no references to the literature on either M.E. or epidemic neuromyesthenia in the Holmes-defining article).  But after British psychiatrists linked a purely psychiatric definition of CFS with M.E., by 1992 the CDC and NIH were both saying that "M.E." was the "outdated" term for "CFS".  Interesting turnaround.

CFS has done little good except to help bring some patients and doctors together.  The misunderstandings, misdiagnoses, and at times deliberate mischief done with "CFS' makes it professionally useless.

The right answer is to abandon the wrong turn altogether - abandon "CFS" because there are now 8 international definitions that pollute the research pool.

If you were to abandon "CFS" altogether - WITHOUT RENAMING ANYTHING - you would revert to the names epidemic neuromyesthenia and myalgic encephalomyelitis for those who fit the definitions.  And those who are misdiagnosed would perhaps get a diagnosis that fits.

Since epidemic neuromyesthenia is no longer in use, that means using M.E. - myalgic encephalomyelitis - the name in contiguous use for a half-century.

The point is NOT to create a "new" name.  It is to get rid of a bad one.

Mary Schweitzer

 

There is evidence of a neurologically-based disease M.E. that should not be ignored.  For example, the autopsy of victim Sophia Mirza showed significant damage to the basal root ganglia.  That is precisely the same results as an autopsy of another woman with M.E. taken after her car had plunged into the cold ocean.  Myalgic Encephalomyelitis exists.  If you don't think you have it, come up with a completely different name so that name can be left alone.

Mary Schweitzer

 

Response to the ProHealth Name Change Committee and the IACFS:

A very small group of American "World Class Experts" are not representative of all the international experts, many of whom who studied the disease ME long before the CDC attempted to obscure it by creating the misnomer CFS in 1988 and the broadly defined criteria that excluded the cardinal features of Myalgic Encephalomyelitis, which had been known as Atypical Poliomyelitis prior to 1956 due to the similarities with Poliomyelitis. The proposed name change is another dangerous mistake like CFS that is not supported by international scientific consensus and must be stopped to prevent a repeat of the last 20 years of confusion.

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! In a further editorial it states: "Patients will have the opportunity to hear all sides of the argument and will ultimately make the decision: Is ME/CFS better than CFS? And which 'ME' is better - the one that has been used for 60 years, or the one that is more medically accurate and up to date?" We may suffer from brainfog but most of us are intelligent enough to recognise this manipulative trick.

In an IACFS conference report by Dr Charles Lapp, he notes that the organization has changed its name to IACFS/ME(opathy) and: "an ad hoc Name Change Committee, put together by ProHealth CEO Rich Carson, also recommended using the term ME (Myalgic Encephalopathy) in lieu of CFS. CFS will probably remain the scientific term for the illness, but it is hoped that ME will become the common designation." So the committee has already indicated the predetermined outcome of the final decision, and CFS with its vague criteria and associated stigma will strangely remain the "scientific term for the illness"? This bizarre logic is baffling and will not put an end to the controversy and disbelief that have caused patients so much distress.

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

 

If these so-called ME organizations 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 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 organizations 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.

The name and the criteria for Chronic Fatigue Syndrome falsely gives the impression that it is a vague fatiguing condition of little medical and public interest, and the clinical guidelines for doctors are seriously flawed and biased with the only recommended treatment being CBT/GET. Consequently many doctors dismiss the condition as psychiatric, the media takes no interest, and patients are dismissed as malingerers.

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.

The pandemic disease Myalgic Encephalomyelitis has quietly destroyed millions of lives while the CFS hysteria and confusion has raged on, and it seems likely that this latest name change diversion will prolong the confusion and misunderstanding of the disease, and blind everyone to the criminal medical neglect of seriously ill Myalgic Encephalomyelitis patients. What is your organization doing to help change this?

Myalgic Encephalomyelitis is the historically recognised name and the current science supports its inception since 1956, and it must be formally and publicly recognised by all governments and medical organizations as the distinct neurological disease documented for over 70 years and classified by the WHO since 1969 to attract major funding and public respect for patients.

So who do these CFS, CFIDS, and CFS/ME organizations with their various definitions of CFS actually represent? If they will not clearly identify as Myalgic Encephalomyelitis organizations and clarify their support for the documented history of ME, the mounting research supporting the evidence of inflammation and the 2003 Canadian Consensus Definition, then patients should know that they are being deceived.

Patients can empower themselves by demanding that these organizations stop hiding behind the obfuscation of CFS, CFIDS and CFS/ME, demonstrate that they represent strictly defined Myalgic Encephalomyelitis and take action to force governments and medical organizations to publicly recognise the disease, provide major funding for research, educate the medical profession, fund proper treatment for patients, and protect the public who remain at risk of contracting this disabling and eventually terminal disease.

If these organizations will not rise to the challenge, patients can exert their considerable collective power by withdrawing their financial support and diverting their membership fees and donations to organizations that will work to restore our basic human rights for long overdue public recognition and medical treatment.

John Anderson

 

The M.E. Society of America does not accept the proposal put forward by the Rich Carson group.

Maryann Spurgin, PhD M.E. Society of America

 

A straight out swap over from CFS to Myalgic Encephalopathy will achieve nothing and will mean that those with mental fatiguing conditions will be lumped in with those with Myalgic Encephalomyelitis. This would mean that those with the real historical ME will be lumped in with those persons with a mental condition and there will be no future progress in research into the physical Myalgic Encephalomyeltis. A true win for the psychiatric lobby as it will eradicate Myalgic Encephalomyelitis.

The correct name for this physical condition is Myalgic Encephalomyelitis - and Dr. Abhijit Chauduri in his post-mortem examination found evidence of this inflammation of the myelin/spinal chord, as did Dr. John Richardson and others in the UK. Sadly many in the USA have been diagnosed as having fatigue as the defining factor and do not the meet the criteria for Myalgic Encephalomyeltis but could meet the criteria for a mental brain condition - a win for the psychiatric lobby.

Myalgic Encephalomyelitis does not have a history in the USA - and it was interesting that those medical practitioners and researchers who were familiar with Myalgic Encephalomyelitis refused to sign the 1988 Holmes et al. definition of CFS on the grounds that the Holmes et al. description did not describe the M.E. which they knew and diagnosed.

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. For it to work every person in the USA who has been diagnosed with CFS - with fatigue as the defining factor - will have to be reassessed using the Myalgic Encephalomyelitis criteria.

If this reassessment was undertaken there would still be found that 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.

 

No CFS definition defines a neurological disease. All definitions which wear the 'f' word (ie. fatigue) in their name are not ME nor neurological. They are definitions of fatigue conditions. And when these definitions were written it was not neurological ME which they were attempting to define.

THE COMMITTEE feels there has been a particular effort to confuse the public about Myalgic Encephalomyelitis. Most of this effort has been rooted in the promotion of the term Chronic Fatigue Syndrome to describe this disease, which has been spreading in epidemic fashion worldwide during the last twenty years. Of particular note is the outright effort undertaken since 1988 by the American CDC to eliminate the name and definition of M.E. and replace it with CFS.

We encourage patients to learn about ME, its history and the epidemics and the modern research. Do not be confused by the deceitful propaganda about a “new disease”.

Myalgic Encephalomyelitis is defined as a neurological condition at ICD G.93.3. Myalgic Encephalopathy is not recognised in any ICD as a condition.

Myalgic Encephalomyelitis or Myaglic Encephalopathy? Whats in a name? Myalgic Encephalopathy is not the same as Myalgic Encephalomyelitis. None of the contemporaries of Ramsay, such as Dowsett and Richardson, who have been asked to comment on the appropriateness of a change from ME'itis to ME'opathy have found ME'opathy an acceptable explanation. Myalgia means muscle pain. Encephalo - means brain, myelitis has two meaningss, some say it refers to inflammation of the spinal chord, others to inflammation of the myelin, the covering of the brain. Both are physical descriptions. Opathy, on the other hand means pathology - which can mean 'the science or origin, nature, and courses of diseases', but another meaning is 'any abnormal state: social pathology' (Delbridge 1998). Hence 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 ME (which meets the Ramsay criteria). This change of name to 'opathy' can therefore be seen to endorse psychological therapies as treatment.

Muscle pain brain myelin inflammation is not the same as muscle pain brain abnormal state. And the neurological damage which is evident in ME can be explained by myelin inflammation but it cannot be explained by 'brain abnormal state'. Evidence for brain damage has been found in the research of persons such as Casse et al. (2001), Poser (1992) and others. And there is often confusion with MS by persons in the medical profession - where there is myelin damage.

ME and CFS, The Definitions The Committee for Justice and Recognition of Myalgic Encephalomyelitis

 

To just change the name CFS into ME, would also wrong as ME and CFS are not the same disease entity.

It will take some hard efforts from ME people outside the US to make people in the US understand, that they will have to struggle some more to also get ME recognized by the insurance compagnies and health authorities as a seperate disease entity from CFS.

In 2007 IACFS (International Association for CFS/ME) finally decided on using the term CFS/ME and on changing 'Myalgic Encephalomyelitis' into 'Myalgic Encephalopathy' - like it was decided in England a few years earlier. The intention was to hopefully get ME back in the medical vocabulary and to have ME officially recognized. There are, however, very divided opinions about this, because quite many people believe that it will not create any positive and constructive result to link ME to CFS and that it is quite unnecessary to change the name to 'Myalgic Encephalopathy' as there are still piling up evidence for inflammation in the spinal cord and brain. Also the term encephalopathy is not enough specific to describe ME, but does refer to many kinds of diseases in the brain.

To link CFS ot 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 exactly the linking of CFS to ME that has created the terrible problems here. For those countries it is a hard fight to get rid of the term CFS - and not link it to ME.

However, the fact that CDC is now using the term "Myalgic Encephalomyelitis" and describing it as a 'similar disease' to CFS, point out the need for keeping these two separated, as also Dr. Byron hyde, Canada, points out in his new The Nightingale Definition of Myalgic Encephalomyelitis (M.E.).

It remains to be seen, how many countries around the would will tackle the problems, which inevitable will be created, because they years back decided to use the term ME/CFS following the 'trend' in the US and assuming ME and CFS as identical entities, but now, being a bit wiser, rightfully want to work for a separation of ME and CFS.

International it seems to be difficult to reach consensus about the role CFS plays compared to ME. There is no doubt whatsoever, that money and politics will see to that this becomes a very difficult task. Those who really pay the price for this is - the patients.

Lajla Mark

 

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 of ME/ICD-CFS 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 bying 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
[Note that ProHealth/ImmuneSupport.com - run by Rich Carson - is the same group proposing the 'CFS' name change travesty.]


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