Articles by LK Woodruff:

• Phone call with Dr Hyde
• 'Fair' name?
• Response to Deliberate Deceit or Inexcusable Ignorance?
• Response to ME/CFS -Successful Antiviral Treatment
• Response to Seven genetic types of ME found + Kerr's small studies findings posted
• An APPEAL to ALL
• On the Canadian guidelines
• On the WHO codes...
• Response to Nancy Klimas MD
• Start recognising ME!!
• Incline villiage and ME

Read more articles by LK Woodruff  

OMG: Dr Byron Hyde just called me! I can't believe it....

I took notes as he talked, and tried hard to sound at least somewhat intelligible (not an easy feat for a person with ME...esp on the fly....)

I'll try to pull the notes into something useful here: 

The 'encephalopathies' part refers to the brain causing malignancies, particularly thyroid (which is all that's been studied to-date). Says the thyroid is the most sensitive endocrine gland, and once the deficiencies start, they occur rapidly (like 20% a year, up to 60% by the 3rd year, etc . And of course, most docs don't know how to accurately test for it...)

Also: in sleep studies they're finding 5-20 pathologies per patient!

But he definitely feels now that ME and CFS are 2 different things.

And he used the term 'ME/CFS' back about the time--early 90's--when he published (not just edited) the book...
.
He said, and I quote: "CFS didn't fall into the ME spectrum"

ME is always sudden onset.
ME is always brain changes.

He maintains that 'CFS' is a misdiagnosis of (often many) other things.

Recent 'CFS' cases, after more thorough investigation, found instead:

- a thoracic ballooning aeorta,
- other cardiac,
- brucellosis (from years ago, and which started in Africa), etc.

He remains outraged that so many patients are diagnosed with 'CFS' when they actually have other things, many of which are treatable.
(And noted that Canadian patients are charged quite a bit less to see him, have testings, etc.).

Also said that the US groups, like the IACFS/ME, won't let him speak!!!  (underlined part is a quote.) But he really likes Lenny Jason and has hopes that they might manage to do something down the road. (Didn't believe me when I told him about Lenny's article posted today. I'll have to send him that.)

Has met Peterson. No plans to work together just now, but possibilties may exist for the future....

-->He said he will speak to groups in the USA for airfare and accomodations. (Not sure how large the group must be....)

Added that in the USA, certain 'researchers' have patents and whatnot and make many millions of dollars by only having certain things published, while not letting other things to be published, etc. (He mentioned a specific Dr.) And of course, he also talked about the insurance company attacks, and how only 2-3% of the ME patients end up having any sort of  'psychiatric' problem. (Tho he added then that the psych types don't tend to end up at his ofc in the first place:)

2/16/2008

I'm hearing from quite a few folks that their posts are being rejected or removed from this ~fair name change site~. This does not bode well for truth and honesty, now does it????

So I posted the following, and we'll see what the site owners do with it.

~

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.

KNOW THIS:

-->There is NO WAY a 'sudden onset viral event' that changes lives and health as the patient knew them, within a matters of hours, AND THEN causes a 'cascade of events throughout the body' similar to the demylination of MS can POSSIBLY be the same thing as a 'syndrome based on 'fatigue'.

That is ABSURD!!!!

-->THAT is why ME is G93.3, Neurogenic (under Brain, CNS, Neurology) in the WHO (World Health Organization) classifications.

-->And why 'CFS' (Fukuda, et al) remains under R53.82 (under fatigue, and ill-defined).

UNDERSTAND THIS, PEOPLE!!!!

It's STEP NUMBER1-!

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.

Sincerely, 
LK Woodruff

Here we go again.............

IT's most likley BOTH:

DELIBERATE DECEIT ~and~ INEXCUSABLE IGNORANCE!

ALL of the UK governments documents seem to use the term 'CFS/ME' -  which of course refers to the Wessely School's (WS) 'psychosocial illness MODEL'. The WS has had years and years to inundate the masses with their ill-conceived behavioural concepts.

-->Their product is an illness MODEL, not an actual illness recognized or classified by the WHO (World Health Organization.)

That is critical to remember.

~~~

Everyone in the UK now clings tightly to the term 'ME/CFS', which refers to the 2003 ME/CFS Canadian Criteria (CC). This product is a 'blend' of both ME (Ramsey, Dowsett, Hyde), G93.3, Neurogenic ~and~ 'CFS' (Fukuda, et al), which is simply a vague 'syndrome' based on 'fatigue'.

Whoever in the world inconceivably thought to combine them approx 5  years ago, has led us all down a very slippery, mucky and treacherous slope....resulting in chaos, confusion and turmoil. And holding up meaningful and relevant research:(

---

In order to get back on track, what is necessary is for everyone in this situation to CLEARLY understand and differentiate b/n the verious names/terms - and use them correctly.

---

For instance, while Ms. Williams has made great contributions to the cause over the years, her persistent use now of the term 'ME/CFS' as all inclusive for everything: is wrong. It adds to the confusion. She cannot respond back to the gov'n--who's talking about 'CFS/ME'--by using the term 'ME/CFS'...

BECAUSE: 'CFS/ME' and 'ME/CFS' mean 2 entirely different things!!!

-->Patients who meet the definition of  the WS's 'CFS/ME' most likely do have some sort of psychologically-based illness and so WILL GET BETTER when implementing both CBT and GET!!!!!!!

-->Patients defined by the 'ME/CFS' (CC) will not be as likely to, as one of the critical indications of illness for it is a 'post-exertional malaise'.

And to take it one step further then:

-->Patients who are ME-defined (G93.3, Neurogenic) will not only NOT get better but will actually be HARMED by at least the GET (Graded Exercise Therapy) because they have objectively testable/provable CNS (Central Nervous System) damage, which results in a multi-systemic illness that is extremely debilitating and limiting. ->Exertion done by a very damaged system will only result in further breakdown.

~

I've been saying this a long, long time now, and you all really, really need to start understanding it:

---------------

. There is a major difference between all of the various terms/names.
. They are NOT interchangeable!

Once you all clearly understand this, and stop using your own personal favorite but instead start using the CORRECT term/name for your situation/illness/syndrome - the sooner we can start progressing on to study and better understand each one.

~

Normally in life, I am a big proponent of bringing together the masses. But in this situation CLEAR SEPERATION is necessary.

It's not about numbers, or favorite names - it needs to be about CORRECT ILLNESS IDENTIFICATION.

Most Sincerely,
LKWoodruff
lkw777@charter.net

Lerner has always and only worked on 'CFS'. - Never ME (G93.3, Neurogenic.)

Kerr uses the term 'CFS/ME', which is the UK psych group's name for their psychosocial illness MODEL. Most of his previous work--if not all--seems to have been based on a 'mixed' group of patients. But a recent (May 2008) Economist article states (I believe it even quoted him, but others can look it up, for his precise words) that his most recent genomic research work is based on the USA CDC's criteria - which of course  means the 1994 Fukuda, et al, for 'CFS'.
- Again, not ME (G93.3, Neurogenic.)

Chia's work has also only been under 'CFS'. - Never ME (G93.3, Neurogenic).

The 250,000 estimated ill in the UK is not ME patients; it is a combination 'guesstimate figure' of multiple things (CFS, CFS/ME, ME/CFS, ME, etc.) NOTE: True ME (G93.3, Neurogenic) is estimated to affect less that 1% of the general population throughout the world.

The NICE Guidelines were written based on 'CFS/ME' (i.e., the psych version). For that reason, they are worthless for the vast majority of patients with any of the other above-mentioned maladies (some of which are admmittedly made up).

'CFS' (Fukuda, et al) remains a 'syndrome' based on 'fatigue', and it is classified by the USA CDC under 'zoonotic' and 'vector-borne', andis in the ICD Codes under R53.82, fatigue and ill-defined.

- That has NEVER CHANGED.

Of all of the many symptoms listed at the very end of this article below, very, very few are included in any of the now 9 'CFS' criterias.

It is a JOURNALIST'S job to get the FACTS straight when reporting. It behooves all patients to do so, also, for the very best outcome.

Sincerely,

LK Woodruff
lkw777@charter.net

~~~~~~~~~~~~~~

> Innovations report
>
>
> 07.05.2008
>
>
>
> US and British Researchers highlight
> distinct subtypes of myalgic encephalomyelitis
>
>
>
> US Researcher Announces Successful Antiviral
> Treatment For A Subset Of ME/CFS Patients
> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
>
>
> Researchers have identified distinct subtypes of
> myalgic encephalomyelitis (ME/CFS - also referred to
> as chronic fatigue syndrome) and there is renewed
> hope that treatments are available for this
> debilitating neurological illness.
>
>
> One of these researchers is Dr A. Martin Lerner from
> Michigan, USA who will be revealing his ground
> breaking data from observations over the last seven
> years at the forthcoming International ME/CFS
> Conference 2008 in Westminster, London, on 23rd
> May.
>
> Dr Lerner's research indicates that specific long-term
> anti-herpesvirus pharmacokinetic administration of
> the drug valacyclovir/valganciclovir provides
> long-term significant benefit to one group of ME/CFS
> patients. Dr Lerner has identified two specific groups
> of patients; one with Herpesvirus Illness (EBV,
> HHV6, HCMV) with no co-infections and another
> Herpesvirus Illness with co-infections such as Lyme
> Disease, Babesiosis, Adult Rheumatic Fever and
> Mycoplasma Pneomoniae Myocarditis. Dr Lerner is the
> most experienced ME/CFS doctor in the world with
> long-term experience of treating an identified subset
> of patients with antivirals and has over twenty years
> of experience studying ME/CFS. He will be presenting
> his extensive data at the London conference,
> organised by the charity Invest in ME.
>
>
> The theme of the conference is Sub Grouping of and
> Treatments for ME/CFS and the conference is
> changing the view that ME/CFS can be treated with a
> one-size-fits-all approach to treatment which the
> government and the National Institute for Clinical
> Excellence (NICE) have been advocating until now.
>
> There is growing evidence of different subtypes and
> viral involvement in ME/CFS and the conference has
> aroused interest from the Chief Medical Officer and
> the UK Medical Research Council, both of which will
> be represented at the conference.
>
>
> Other speakers at the conference include Dr Jonathan
> Kerr from St George's University, London who has
> recently published a study identifying seven different
> genomic subtypes of ME/CFS and Dr John Chia, an
> infectious disease specialist from California, USA,
> who has is investigating antiviral treatments against
> enteroviruses as his recently published research
> showed that 135 out of 165 (82%) patients had
> stomach biopsy results that stained positive for
> enterovirus antigens compared with 7/ 34 (20%) of
> controls.
>
>
> Dr Judy Mikovits, research director from the unique
> Whittemore Peterson Institute (WPI) in Nevada, USA
> will also be talking about the institute's future plans
> for research and will be presenting data on a distinct
> subgroup of patients that is characterized by a
> significantly increased incidence of the development
> of Non-Hodgkins Lymphoma (NHL).
>
>
> Myalgic Encephalomyelitis (ME/CFS) is defined by
> the World Health Organisation as a neurological
> illness (code WHO-ICD-10-G93.3). With an
> estimated 250,000 sufferers of ME/CFS in the UK
> alone, of which 60,000 (one quarter of the
> people) are severely affected, many of them
> children, the illness is thought to cost the UK
> economy over £6 billion per year. Little public
> funding of biomedical research is currently
> provided by the government.
>
> The varying symptoms experienced by many
> severe ME/CFS sufferers may include: -
> post-exertional malaise, general chronic
> weakness of limbs, cognitive problems such as
> memory loss & concentration difficulties, severe
> headaches, problems with balance and fine motor
> control, muscle pain, light sensitivity,
> vocal/muscular limitations, hypersensitivity, sleep
> & temperature disturbance, cardiovascular
> symptoms, digestive disturbances, neurological
> disturbances. In its most extreme form it can
> leave sufferers bedridden and can even be fatal.
>
>
> It is hoped that the conference, bringing to an end
> ME Awareness Month, will kick-start publicly funded
> biomedical research into ME/CFS based on a more
> relevant and scientific approach to diagnosis and
> treatment of the illness.
>
>
> Details of the CPD accredited conference may be
> found at - www.investinme.org
>
>
>
> Kathleen McCall
>
>

Regarding the postings on Kerr's studies (see today's Co-Cure):

Kerr continues to use the Wessely School's 'psychosocial' term of 'CFS/ME'....

Yet he finally now publicly admits that all of his studies are based on the Fukuda, et al, criteria for 'CFS':

    "We analyzed gene expression in peripheral blood from 25
    patients with CFS/ME diagnosed according to the Centers for  
    Disease Control and Prevention diagnostic criteria..."

So one has to ask:

--------->>>>WHY IS ME BEING MENTIONED/ADDED AT ALL?!

And, knowing now that he applied the Fukuda, et al criteria, one has to wonder what precisely it is that any of these patients have.

-->As it seems highly likely that any of them are ME-defined (Ramsey, Hyde, etc.)

It is also confounding that Kerr still refers to Epstein Barr, which is such an old--and UNproven--theory about illness causation.

Also, the patients in this VERY SMALL study (only 25 patients!!!) all have been ill just a FEW YEARS (less than 4) and  their symptoms are focused largely on things like sore throats and swollen glands, etc.

-->So they clearly did NOT have the 'sudden onset' upper respiratory event that ME-defined patients initially experience, followed by the 'cascade of events throughout the body', which results in a multi-systemic illness.

-->Remember: Neurogenic means: starts in the BRAIN.
-->Remember: The incubation period for ME is 4-7 days, max.

So this study does not concentrate on what ME-defined patients deal with initially, or ongoing. ME symptoms are far more serious and severe and debilitating.

~

It was mindboggling when the world jumped on the Gibson Inquiry, and interpreted it as relevant and meaningful for large numbers of patients.

It is unacceptable that the NICE Guidelines, written for the WS's psychosocial illness model they call 'CFS/ME', are lauded as helpful for anyone with anything other than 'CFS/ME'...or unspecified 'fatigue'.

-->And particularly for ME, G93.3, Neurogenic patinets, as doing anything aerobic ongoing is impossible when one has it!

It is Kerr's perogative to do studies based on 'CFS' (Fukuada, et al) if he wishes, tho how anyone expects to discover anything relevant when studying such a broad 'syndrome' based on 'fatigue' is confounding.

~~~~~~~~~~~~~~~

However, please all, do not go spreading these findings from this very tiny study as tho they are eye opening or earth shattering, as they are not. They are simply interesting studies done on on a very tiny group of individuals who meet a very brief and broad criteria.

~~~~~~~~~~~~~~~~

-->Much larger studies, done with much tighter definitions, need to follow now before any findings can be deemed relevant or important!!

If small inconsistencies are being found amongst these 'mixed groups of patients' - just imagine what could/would be uncovered if these researchers would focus solely on ME, G93.3, Neurogenic patients.

Now that could blow things wide open, and actually initiate some scientific progress!

LKWoodruff
lkw777@charter.net

July 11, 2007

An APPEAL to ALL:

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.

The following was written by a severe ME-ite, Jodi Basset, and is taken from her site - the best patient site in existence. She not only speaks from personal experience, but also from extensive reading of research, and communications with other severely ill ME patients, over period of some years. It is virtually all she does, usually from her bed.

We who have ME--and not just some 'fatiguing' passing illness--are too ill to drive and sustain a massive PR campaign on our own, tho Lord knows we do the best we can, using up our very limited stamina writing posts and articles, etc. We wouldn't be able to do even that much without networked pc's....

-->We need others to STAND UP and SPEAK UP for us!!!!!!
-->We need our illness to be FUNDED and RESEARCHED on it's own merits.

We desperately need help, as we live our lives of quiet desperation and isolation, with little hope and only our perseverence to keep us going.

Because as we all know: once you lose HOPE, the game is over.

PLEASE do all that you can to rectify this untennable 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.

LaVonne K Woodruff
lkw777@charter.net

I am a severe ME patient

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> ME: On the pattern of symptoms and relapses, etc.
>
> Just looking at each of the individual symptoms of
> MyalgicEncephalomyelitis (ME) only tells you half the story. What
> characterises M.E.every bit as much as the individual neurological,
> cognitive, cardiac, hormonal, cardiovascular, immunological,
> endocrinological, respiratory, muscular, gastrointestinal and other
> symptoms is the way in which people with M.E. respond to physical
> and cognitive activity, sensory input and orthostatic stress. The
> way the bodies of people with M.E. react to these 
> activities/stimuli post-illness is unique in a number of ways.
> Along with a specific type of damage to the brain (the central  
> nervous system) this characteristic is one of the defining features
> of the illness which must be present for a correct diagnosis of
> M.E. to be made.
>
> The symptoms of M.E. are not solely exertion related however; along
> with the metabolic deficiencies of M.E. (etc.) there are also 
> several other features and characteristics of M.E. which play an
> equally important role in determining the severity of the illness,
> the patterns of symptoms, and what it is like to live with M.E.
> The main characteristics of the pattern of symptom exacerbations,
> relapses and disease progression (and so on) include:
>
>
> A. When you have M.E. you very quickly find out that you are unable
> to be anywhere near as active as you were pre-illness. This is an
> acute, or sudden, change; not a gradual one; M.E. patients can only
> achieve 50%, or less, of their pre-illness activity level
> ~immediately~ upon becoming ill with M.E. (i.e., not days, weeks or
> months later).
>
> The onset of M.E. is generally quite dramatic. The majority of M.E.
> patients can tell you not just the day that they became ill, but
> the exact hour they became ill. In my case I went from being a very
> healthy, happy and active teenager one day to being able to do less
> than 40% of what I did pre-illness, literally overnight - or from
> one hour to the next, in effect. The virus also suddenly left me
> with a very damaged brain to cope with, and my heart and a whole
> host of other organs and bodily systems no longer worked like they
> used to from that point onward, either. My brain, my body, and my
> whole life changed in an instant.
>
> These sudden pathological changes seen in M.E. patients, including
> the damage to the brain, can be tested for using objective
> scientific testing.
>
> M.E. can commonly be diagnosed within just a few weeks if the
> doctor has experience with M.E. It is not true that M.E. is
> difficult to diagnose, or that 6 months must pass before the
> diagnosis can be made, or that M.E. is only a diagnosis of
> exclusion, or that there are no tests which can be done to confirm
> a M.E. diagnosis. These suggested 'facts' relate only to the bogus
> 'CFS' definitions, not to authentic M.E. patients.
>
> If all your tests are normal, you do not have M.E. - see: Testing
for M.E. for more information.
>
> For more information on the viral infection evident at onset in
> M.E., and the outbreaks of M.E. etc. see: The outbreaks (and
> infectious nature) of M.E.
>
> B. As well as no longer being able to be as physically active as
> you were pre-illness, you are also limited in a similar way with:
>
> cognitive exertion, sensory input and orthostatic stress.
>
> M.E. is not just about being made sicker by exercise or by certain
> levels of physical activity.
>
> When you have Myalgic Encephalomyelitis the body responds
> inappropriately to anything that forces the body to have to react
> in some way or work harder in some way, in order to maintain
> internal homeostasis, including (but not limited to): cognitive
> exertion, sensory input, orthostatic stress and emotional stress.
> It should also not be assumed that a person with M.E. will
> necessarily react more severely to (or have greater limits on)
> physical activity than with cognitive exertion, sensory input or
> orthostatic stress. I am fairly equally affected by physical,
> cognitive, sensory and orthostatic exertions/inputs most of the
> time, although at certain times one of these in particular will be
> more of a problem than the others.
>
> What is Homeostasis? Homeostasis is the property of a living
> organism, to regulate its internal environment to maintain a
> stable, constant condition, by means of multiple dynamic
> equilibrium adjustments, controlled by interrelated regulation
> mechanisms. Homeostasis is one of the fundamental characteristics
> of living things. It is the maintenance of the internal environment
> within tolerable limits.
>
> C. Being active beyond your individual (physical, cognitive,
> sensory or orthostatic) limits causes a worsening of all sorts of
> different neurological, cognitive, cardiac, cardiovascular,
> immunological, endocrinological, respiratory, hormonal, muscular,
> gastrointestinal and other symptoms.
>
> When a person with M.E. is active beyond their individual post-
> illness limits, the result is not tiredness, fatigue or even
> exhaustion - nor is 'malaise' an accurate word to describe what
> occurs. There simply is no one symptom caused by overexertion in
> M.E. What does happen is that there is a worsening of all sorts of
> different symptoms and of the severity of the illness generally
> with overexertion. Repeated or severe overexertion can also cause
> disease progression, permanent damage (eg. to the heart), or
> death in M.E. It is an entirely different problem of a much greater
> magnitude.
>
> Each of the symptoms caused or exacerbated by overexertion can be
> clearly articulated without difficulty whether they be: seizures,
> cardiac events, labile blood pressure, tachycardia, shortness of
> breath, muscle pain, muscle weakness or muscle paralysis, facial
> paralysis, black outs, flu-like symptoms, nausea, inability to
> speak or to understand speech, problems with memory, and so on.
> It makes no scientific or logical sense to subsume these very
> specific symptoms, and very specific and varied combinations of
> symptoms, under a vague and inaccurate label of mere 'fatigue.'
> To say that all of these very different and specific--and in some
> cases very serious--symptoms can be accurately summarised as being
> mere 'fatigue' 'malaise' or 'exhaustion' is just absurd.
>
> A large number of illnesses cause significant fatigue or malaise
> after activity (for example, post-mononucleosis or glandular fever
> fatigue syndromes, Lyme disease and Fibromyalgia and so on) but
> what is happening in M.E. is simply not the same thing; the
> symptomatology and pathology--and the effect of physical, cognitive
> and orthostatic overexertion on long-term prognosis--is very
> different in M.E.
>
>(See the 'A note on M.E. and other illnesses' sections below for
> more information.)
>
> D. The level of physical activity, cognitive exertion, sensory
> input or orthostatic stress needed to cause a significant or severe
> worsening of symptoms varies from patient to patient, but is often
> trivial compared to a patient's pre-illness tolerances and
> abilities.
>
> When there is talk of 'overexertion' leading to an exacerbation of
> symptoms in M.E. what is being referred to is not hard exercise, it
> is not anything resembling what healthy people would recognise
> as 'overexertion.' This term just refers to any activity which goes
> beyond a person's individual post-M.E. limits.
>
> A note on M.E. and other illnesses: This extreme and out of all
> proportion reaction to even trivial levels of activity is just not
> seen in those illnesses causing fatigue (and other symptoms) after
> exertion which may commonly be misdiagnosed as 'CFS.' People with
> post-viral fatigue syndromes, etc., are not affected by small
> activities for many weeks, months, or permanently, in this way.
> While people with M.E. and people with these other illnesses
> may all not improve with a graded exercise regime, that does not
> mean that these other patient groups have the potential to be so
> severely and negatively affected in the long term by such an
> intervention, as does every M.E. patient. The way people with M.E.
> respond to physical and cognitive activity, sensory input and
> orthostatic stress is profoundly different than in these other
> illnesses.
>
> E. The severity of M.E. waxes and wanes throughout the
> hour/day/week and month. (Periods of intensive rest before events,
> and surges of adrenaline, can also sometimes allow people with M.E.
> to do things beyond their usual limits for a short time - albeit at
> the cost of future relapse and/or disease progression.)
>
> You can probably observe people with some illnesses carefully for
> an hour or so and collect a lot of good information about what they
> can and can't do, how severe their illness is, and what their usual
> symptoms are from day to day, and so on. But M.E. is not one of
> those illnesses! M.E. is anything but a stable illness.
>
> Because of the lack of stability in M.E. you simply cannot know a
> M.E. sufferers usual ability level or severity level unless you
> have observed them over a very long period of time, or actually
> asked the person detailed questions about what their average daily
> activity limits, abilities and symptoms are. Just observing someone
> with M.E. do a certain task should not be taken to mean:

> (a) that they can necessarily repeat the task anytime soon,
> (b) that they would have been able to do it at any other time of
>     day,
> (c) that they can do the same task every hour, day or even every
>     week, or month, or
> (d) that they wont be made very ill afterwards for a considerable
> period because they had to really push themselves (and make
> themselves ill) to do the task.
>
> Most importantly, you also can't tell by looking if a particular
> activity was so far beyond a M.E. patient's individual limits that
> they will end up having made themselves severely or permanently
> more ill by pushing themselves to do it (or being forced to push
> themselves to do it).
>
> What is an adrenaline surge? Adrenaline is often referred to as
> the 'fight or flight' hormone as it kicks into action in situations
> of potential danger. Adrenaline also kicks in when the body is in
> physiological difficulty however, which is what is happening with
> M.E. sufferers very often. Adrenaline surges make the heart pump
> faster and raise your blood pressure, forcing blood around the body
> with greater force to supply the muscles with more oxygen, so that
> they can make a greater effort. (This is also associated with a
> diversion of blood away from certain areas of your brain and
> internal organs and into your muscles - so although your body is
> more capable your ability to think in complex ways can sometimes be
> lessened). Surges of adrenaline increase your metabolism, to supply
> more energy to the body. They also relax and dilate the airways so
> that we can take in more oxygen than usual. Adrenaline surges can
> also decrease the amount of pain you feel. As a result of all of
> these factors, adrenaline surges--while they last--have the ability
> to increase your physical speed, strength and other physical
> abilities.
>
> A note on M.E. and other illnesses: This is another one of the
> characteristics which clearly differentiates authentic M.E. from
> various post-viral fatigue syndromes and so on - the striking
> variability of symptoms not only in the course of a day but often
> within the hour. As many M.E. experts have noted, this variability
> of the intensity of the symptoms is not found in post-viral fatigue
> states or syndromes (etc).
>
> F. The worsening of the illness caused by overexertion can be
acute, but often does not reach its peak until 24 - 48 hours (or
> more) later.
>
> Another reason that short-term and superficial judgements of
> ability and disability levels in people with M.E. are often very
> misleading - and are in fact almost guaranteed to give a falsely
> more optimistic view of daily ability levels - is because the
> relapses caused by exertion very often do not appear until 48 or
> more hours afterward, when the average observer is long gone.
> Symptoms will then persist for hours, weeks or many months, or
> longer. For me and for many other M.E. sufferers, the effects from
> significant overexertion will often peak on day three.
>
> A note on M.E. and other illnesses: The 'CFS' definitions state
> that post-exertional symptoms 'may take up to 24 hours to resolve.'
> But to say this is true of M.E. patients is absurd and betrays an
> ignorance of the most basic facts of M.E. Post-exertional symptoms
> very often take far longer than 24 hours to even APPEAR in people
> with M.E., let alone be completely resolved in that time. These
> symptoms can take days, weeks, months or even several years to
> resolve (or they may never resolve, or they may cause death).
> Those groups and individuals who claim that the results from
> overexertion involve 'fatigue' or 'malaise' and 'may take up to 24
> hours to resolve' clearly show that they are referring to, and
> familiar with, patients suffering various fatigue syndromes -
> including post-viral fatigue syndromes caused by
> mononucleosis/glandular fever and so on - and not authentic M.E.
> patients.
>
> G. If you push past your individual limits too deeply or too often,
> the effects of overexertion can also accumulate over longer periods
> of time and lead to disease progression, or death.
>
> In addition to the effects of overexertion commonly being delayed
> by 48 hours or so, the worsening of symptoms caused by overexertion
> can also sometimes be delayed (and accumulate) over weeks or even
> many months at a time until they are realised in a 'crash.' This is
> a period of intense worsening of the overall condition followed by
> a gradual return to the patient's base level of illness over weeks,
> months or years.
>
> When the body is confronted with activity (or inputs) beyond the
> patient's individual limits severely and/or repeatedly over time,
> these effects can also become cumulative in the long term; you can
> become unable to return to your base level of illness at all. Long-
> term or permanent worsening of the overall severity of the
> condition is caused. Thus some patients are still dealing with the
> severe physical effects of inappropriate advice to exercise or to
> be more physically or mentally active etc. five, ten, fifteen or
> more YEARS afterward and for some patients the damage caused is
> permanent. Overexertion has also resulted in death in some cases of
> M.E.
>
> Strong evidence exists to show that overexertion can have extremely
> harmful effects on M.E. patients. Patient accounts of leaving
> exercise programs much more severely ill than when they began them;
> wheelchair-bound or bed-bound or needing intensive care or cardiac
> care units, are common. (Recent research has shown that postural
> stress and physical and mental overexertion exacerbate cardiac
> insufficiency in this disease; see the section below for more
> information.) There have also been reports of sudden deaths in M.E.
> patients following exercise.
>
> Recent research shows that mitochondrial dysfunction leads to
> diastolic dysfunction and reduced stroke volume/low cardiac output
> in M.E. - and certain levels of orthostatic stress and physical and
> mental activity, etc., exacerbate this cardiac insufficiency. Dr.
> Cheney explained recently that because it takes more metabolic
> energy for the heart to relax and fill with blood than it does for
> it to squeeze and pump blood, the hearts of people with M.E. don't
> fill with the proper amount of blood before they pump which is what
> causes the reduced cardiac output and many of the symptoms of M.E.
> (and much of the disability of M.E.)
>
> A note on M.E. and other illnesses: It is sometimes claimed that
> while exercise programs are not safe or appropriate for the
> everely affected, that mild or moderately affected M.E. sufferers
> can benefit from such interventions. But this assertion is NOT
> supported by the evidence. (Some miscellaneous 'fatigue' sufferers
> have been shown to benefit from graded exercise programs, but the
> results of these studies are no more relevant to mild M.E.
> sufferers than they are to severe M.E. sufferers; people with
> 'fatigue' do NOT have mild M.E. any more than they have mild
> MS (multiple sclerosis), mild Lyme disease, mild cancer or any
> other illness.) Recent studies have shown that graded exercise
> programs are the actual reason many with M.E. are so severely
> affected in the first place, thus exercise programs should not be
> considered safe for M.E. sufferers of any severity.
>
> H. The activity limits of M.E. are not short term (they are not
> being perpetuated by 'deconditioning' - a gradual (or sudden)
> increase in activity levels beyond a patient's individual limits
> can only cause relapse, disease progression or death in patients
> with M.E.)
>
> There are a lot of claims made about how people with 'CFS' can get
> their symptoms stable through correctly balancing activity and rest
> (pacing), and then gradually start increasing their activity levels
> until they have regained all (or at least a significant proportion)
> of their pre-illness abilities. This theory claims that the cause
> of the initial loss of ability was a short-term problem--
> caused either by a period of depression or other mental or
> behavioural illness, or a self-limiting viral infection such as
> mononucleosis or glandular fever etc. - and that the barrier to
> increased activity either no longer remains or can only be overcome
> by a gradual increasing of activity levels. ie. the only barrier to
> returning to normal levels of activity is the deconditioning of the
> muscles caused by the initial period of inactivity. This theory may
> or may not be accurate with regards to some proportion of the
> people with certain psychological or behavioural illnesses, or
> those with various post-viral fatigue syndromes, but what is
> certain is that it is completely inaccurate with regards to
> patients with authentic M.E.
>
> Increasing the activity levels of someone with M.E. beyond their
> individual limits, can only ever be counterproductive. Raising the
> limits gradually may well delay the onset of the relapse in some
> patients, but the end result will still be relapse and/or disease
> progression, or death. None of the various cardiac, cardiovascular,
> immunological, neurological, cognitive, muscular, and other
> abnormalities present in M.E. sufferers--which together cause the
> high level of disability associated with M.E.--can be explained by
> mere 'deconditioning.'
>
> Patients who improve with graded activity programs simply do not
> qualify for a diagnosis of M.E.
>
> M.E. is not a short-term or 'hit and run' viral attack; it is not a
> self-limiting post-viral fatigue syndrome caused by
> mononucleosis/glandular fever or any other common infection. Nor is
> M.E. a psychological condition. These theories have been
> comprehensively disproven many times over with regard to authentic
> M.E. patients.
>
> There is no legitimate scientific debate about whether or not M.E.
> is a 'real' illness or not, or whether or not it has a biological
> basis. The (politically and financially motivated) psychological or
> behavioural theories of M.E. are pure fiction; they are no more
> scientifically viable than are the theories of a 'flat earth.' The
> reality is that anyone, whether medically qualified or not, who
> looks at the worldwide published medical evidence on M.E. could not
> fail to recognise that the psychological or psychiatric theories
> could not possibly explain any of the many different and profound
> physical abnormalities seen in M.E. - nor any of the other
> characteristics of the disease which are simply not consistent with
> psychological or behavioural illness (or with a self-limiting post-
> viral fatigue syndrome).
>
>There are only two ways that a person could reach a different
> conclusion:
>
> (1) Bias due to vested political or financial (or other) interests,
> or
> (2) Lack of access to a truly representative selection of the
> evidence (ie. an individual has only availed themselves of the
> pseudo-science provided by financial stakeholders and not a
> representative selection (or indeed any) of the legitimate and
> unbiased science.)
>
> A note on M.E. and other illnesses: M.E. can be progressive,
> degenerative, chronic, or relapsing and remitting. As many M.E.
> experts have noted, the chronicity of M.E. is another
> characteristic which clearly separates the illness from various
> self-limiting post-viral fatigue syndromes.
>
> NOTE: Until MS (Multiple Sclerosis) was re-classified as
> neurological, those patients were also maligned and their illlness
> refered to as both 'fakers disease' and 'hysterical paralysis'. LKW
>
> I. The symptoms of M.E. do not resolve with rest. The symptoms and
> disability of M.E. are not just caused by overexertion, there is
> also a base level of illness which can be quite severe even at rest.
>
> The claims that 'CFS' can be improved by a gradual return to normal
> activity levels are often accompanied by additional claims that
> symptoms will always resolve with rest in these patients. The
> theory is that if these patients can just find the right balance
> between rest and activity, then they will cease to be ill.
> Again these theories may or may not be correct with regard to
> certain other patient groups which may qualify for a misdiagnosis
> of 'CFS,' but they are certainly not true for patients with
> authentic Myalgic Encephalomyelitis.
>
> There is a base level of illness that is always present in M.E., no
> matter how much you rest. (This is true of all sufferers except
> perhaps that small percentage who have improved enough over time to
> be only mildly affected, or who have had a rare total or almost
> total remission of their M.E.) This is because the metabolic
> problems of M.E. are only one part of M.E., they are not
> the only cause of symptoms or of the worsening of the illness.
> Virtually all bodily systems are affected in some way by both the
> damage to the central nervous system and the metabolic problems of
> M.E. (including the cardiac insufficiency this causes) etc. so it
> is no wonder people with M.E. feel so ill, have such a reduced
> level of functioning in so many different bodily systems and have
> so many restrictions and limits on how active they can be. Even
> with complete rest - and most ME patinets can do almost nothing
> else--many M.E. sufferers remain very ill and very debilitated.
>
> J. Repeated overexertion can harm your chances for future
> improvement in M.E. M.E. patients who are given advice to rest in
> the early stages of the illness (and who avoid overexertion
> thereafter) have repeatedly been shown to have the most positive
> long-term prognosis.
>
> It is vital that M.E. patients are never encouraged to be active
> beyond their individual limits, as this can only ever be
> counterproductive. As Dr. Melvin Ramsay M.D. explains; 'The degree
> of physical incapacity varies greatly, but the [level of severity]
> is directly related to the length of time the patient persists in
> physical effort after its onset; put in another way, those patients
> who are given a period of enforced rest from the onset have the
> best prognosis. Since the limitations which the disease imposes
> vary considerably from case to case, the responsibility for
> determining these rests upon the patient. Once these are
> ascertained the patient is advised to fashion a pattern of living
> that comes well within them.'
>
> For example, when I was first ill I was reduced to only being able
> to achieve 40% of my pre-illness abilities. Years later, thanks to
> a lot of (stupid and ill-advised) physical, cognitive and
> orthostatic overexertion, I am now at the level where I can do far
> less than even 5% of what I did pre-illness - as I have been for
> the last 6 years. If I had been diagnosed correctly and given the
> appropriate advice to rest in the early stages of my illness I
> might still probably be at least at that 40% level, if not
> improved even further (as have fellow sufferers who were given the
> benefit of this correct medical advice etc.)
>
> The importance of getting appropriaterest and avoiding overexertion
> in M.E. cannot be overstated.
>
> Avoiding overexertion and getting appropriate rest is essential in
> M.E., but these are not the only things that can be done to ensure
> the most positive prognosis and improve quality of life in the
> illness. (Resting and avoiding overexertion are not treatments for
> M.E., they are just management strategies or survival strategies,
> aimed at minimising damage, etc.)
>
> For more information about the effects of overexertion on M.E.
> patients, including statements/research from some of the world's
> leading M.E. experts about why overexertion is so physically
> harmful, see: Smoke and Mirrors.
>
> L. Not every M.E. sufferer has 'safe' activity limits within which
> they will not exacerbate their illness, this is not the case for
> the very severely affected.
>
> Even the most basic actions--speaking a few words, being exposed to
> moderate light or noise for a few minutes, turning over in bed,
> having hair or body washed in bed by a carer or chewing and
> swallowing food--cause severe and extended symptom exacerbations in
> very severely affected patients. Either sufferers are just too ill
> to do these things at all, or they cannot tolerate the very long
> and severe relapses that come after such activities. The payback
> for even very minor activities can be profound when M.E. is very
> severe. Even the smallest actions can take the pain and other
> symptoms of the illness from a constant 8/10 - 9/10 level to a
> 10/10 level for minutes, hours, days or weeks or longer afterward.
> This is pain on a level that I've described before as 'being eaten
> alive by a tiger would not hurt more or feel more terrible, than
> this does.' Severe M.E. can leave sufferers for months, years or
> even decades at a time; completely and utterly alone in a private
> hellish agony. The illness can cause a level of disability and
> isolation that is just unimaginable to anyone not familiar with
> very severe M.E.
>
> As if the physical burden of M.E. wasn't enough to deal with, many
> people with severe M.E. also have to deal with medical neglect,
> appalling medical abuse and abuse (or even ridicule) from their
> families and as well - thanks to all the misinformation about M.E.
> produced by vested interest groups and supported by government and
> the majority of the media. Many people with  M.E. have literally
> been subjected to what amounts to torture. Deaths have also
> occurred in M.E. sufferers due to this abuse and neglect.
> See: Smoke and Mirrors for more information. For more information
> on severe M.E. see The severity of M.E. and M.E. Fatalities.
>
> SOURCE:
>
>http://www.ahummingbirdsguide.com/whatmefeelslikecondensed.htm#112102
453
>
>SITE:
> http://www.ahummingbirdsguide.com
>
> by Jodi Bassett

The 2003 ME/CFS Canadian Criteria is, at best, a 'blend' of ME and CFS, and when it first came out--with it's ME/CFS term--I thought it was brilliant because it added in a lot of ME symptoms/features. I expected progress from there. I assumed it'd continue to be fine-tuned and the 'CFS' part of the name would fall off quickly, etc.

In other words, I THOUGHT they were going to bring us all along to the point of ME (only) and show that the 'CFS'  conjecture is a huge mixed bag that is impossible to define or differentiate, etc.

Now, 4 short years later, combining the 2 seems like a very bad idea, because it's just perpetuated some myth in people's heads that CFS and ME are the same thing, when they most certainly are NOT.

And what Reeves and the CDC and the CAA are moving ahead smartly on, with fresh allocations of larger sums of monies ever, is some far broader, expanded 'new' CFS definition that will include the world and the kitchen sink. As White said, they want to 'broaden the net...', or expand on the grossly ill-written Fukada, et al criteria.

?!?! They ignore the CC, and they ignore all of the documentation about ME. WHY? What's collaborative or innovative about that?

Is this what you want for those you know and love???? Because if the above group(s) are allowed to do what they plan, it'll affect many, many people for many, many more years - in a way that goes way beyond what they've done so far, at Incline Village and since.

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 (itis; not -opathy) and move forward from the work of Dowsett, Ramsey, Hyde and more..... I will not stop until they do, or until I breath 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.

IT IS TIME TO GET SERIOUS ABOUT ME!!!!

And if people don't 'get' that, then they need to read a lot more of the already existing documentation...and spend some time with ME patients. Because playing both sides, or lumping eveything together, hasn't worked, and won't work.

LK Woodruff

I don't claim to be a WHO ICD10 Code expert by any stretch. However, one can look the Codes and Classifcations up online without too much difficulty. Bear in mind that the ICD10's have been in existence for more than 15 years, and most of the world has adopted them. However, the USA still has not, which continues to cause problems.

I continue to be absolutely flummoxed and confounded by people who tell me they have either 'CFS' or even ME, yet their ~diagnoses~ are clearly
different-! I cannot imagine how these situations come to be, and I am not sure if it's just patients or also doctors who are confused, but everyone needs a better grasp of:

    . How the WHO lays out the bodily systems, then
        . adds in multiple categories (classifications) under them.

This process has been undertaken by medically qualified personnel, around the world, and for many years and really is peer-review at it's finest.

This effort lays out clearly how SIMILAR in some ways  - does not mean SAME.
-->i.e., Illnesses that may share a few symptoms are classified very, very differently, and under different bodily systems.

Please spend some time going through the EXAMPLES and partial sections below, to better familiarize yourselves with how it works. Maybe that will take help remove some of the massive confusion that abounds....

Thank you, LKW

~~~~~~~~~~~~~~~~~

These are just a 3 EXAMPLES, from the massive whole system:

EXAMPLE:
Chicken pox encephalitis is classified under VIRAL INFECTIONS characterized
by SKIN and MUCOUS MEMBRANE LESIONS.
-->See B01.1

ALSO NOTE that encephalitis is not the same thing as encephalomyelitis.

[edit] (B00-B09) Viral infections characterized by skin and mucous membrane
lesions
(B00.) Herpesviral (herpes simplex) infections
(B00.0) Eczema herpeticum
(B00.1) Herpesviral vesicular dermatitis
(B00.2) Herpesviral gingivostomatitis and pharyngotonsillitis
(B00.3) Herpesviral meningitis
(B00.4) Herpesviral encephalitis
(B00.5) Herpesviral ocular disease
(B00.7) Disseminated herpesviral disease
(B00.8) Other forms of herpesviral infection
(B00.9) Herpesviral infection, unspecified
(B01.) Varicella (chickenpox)
(B01.0) Varicella meningitis
-->(B01.1) Varicella encephalitis
(B01.2) Varicella pneumonia
(B01.8) Varicella with other complications
(B01.9) Varicella without complication
(B02.) Zoster (herpes zoster)
(B02.0) Zoster encephalitis
(B02.1) Zoster meningitis
(B02.2) Zoster with other nervous system involvement
(B02.3) Zoster ocular disease
(B02.7) Disseminated zoster
(B02.8) Zoster with other complications
(B02.9) Zoster without complication
(B03.) Smallpox
(B04.) Monkeypox
(B05.) Measles
(B06.) Rubella (German measles)
(B07.) Viral warts
~~~~~~~~~~~~~

EXAMPLE:
Mononucleosis caused by Epstein Barr is under this category, Certain
infectious and parasitic diseases
-->See B27.010

ICD sorted by Code: B22.000 - B35.120ICD CodeDisorder
B22.000: HIV disease resulting in encephalopathy
B22.010: Dementia in HIV disease
B22.200: Slim disease
B22.700: HIV disease resulting in multiple diseases, elsewhere classified
B23.000: Acute HIV infection syndrome
B24.x20: Acquired immune deficiency syndrome
B24.x20: Human immunodeficiency virus infection
B24.x90: Human immunodeficiency virus infection
B25.810: Cytomegalovirus infection of skin
-->B27.010: Epstein-Barr virus infection
B27.800: Infectious mononucleosis
B33.100: Ross River virus infection
B35.006: Tinea capitis
B35.020: Kerion
B35.020: Kerion (due to tinea elsewhere classified)
B35.030: Favus
B35.040: Beard ringworm
B35.040: Tinea barbae
B35.050: Tinea barbae
B35.060: Tinea faciei
B35.100: Onychomycosis due to dermatophyte
B35.100: Tinea unguium
B35.110: Onychomycosis, total dystrophic
B35.110: Total dystrophic onychomycosis
B35.120: Onychomycosis, distal and lateral subungual

~~~~~~~~~~~~

EXAMPLE:

ME (Myalgic Encephalomyelitis) is classified here, under Nervous System,
Inflammatory, CNS, Neurogenic (i.e., started in the Brain, after a sudden
onset viral event).

-->See G93.3.

[edit] G00-G99 - Diseases of the nervous system
[edit] (G00-G09) Inflammatory diseases of the central nervous system
(G00.) Bacterial meningitis, not elsewhere classified
(G00.0) Haemophilus meningitis
(G00.1) Pneumococcal meningitis
(G00.2) Streptococcal meningitis
(G00.3) Staphylococcal meningitis
(G00.8) Other bacterial meningitis
Meningitis due to Escherichia coli
Meningitis due to Friedländer bacillus
Meningitis due to Klebsiella
(G00.9) Bacterial meningitis, unspecified
(G01.) Meningitis in bacterial diseases classified elsewhere
(G02.) Meningitis in other infectious and parasitic diseases classified
elsewhere
(G03.) Meningitis due to other and unspecified causes
(G04.) Encephalitis, myelitis and encephalomyelitis
(G04.0) Acute disseminated encephalitis
(G04.1) Tropical spastic paraplegia
(G04.2) Bacterial meningoencephalitis and meningomyelitis, not elsewhere
classified
(G04.8) Other encephalitis, myelitis and encephalomyelitis
(G04.9) Encephalitis, myelitis and encephalomyelitis, unspecified
(G05.) Encephalitis, myelitis and encephalomyelitis in diseases classified
elsewhere
(G06.) Intracranial and intraspinal abscess and granuloma
(G07.) Intracranial and intraspinal abscess and granuloma in diseases
classified elsewhere
(G08.) Intracranial and intraspinal phlebitis and thrombophlebitis
(G09.) Sequelae of inflammatory diseases of central nervous system
[edit] (G10-G13) Systemic atrophies primarily affecting the central nervous
system
(G10.) Huntington's disease
(G11.) Hereditary ataxia
(G11.1) Early-onset cerebellar ataxia
Early-onset cerebellar ataxia with essential tremor
Early-onset cerebellar ataxia with myoclonus (Hunt's ataxia)
Early-onset cerebellar ataxia with retained tendon reflexes
Friedreich's ataxia (autosomal recessive)
X-linked recessive spinocerebellar ataxia
(G11.2) Late-onset cerebellar ataxia
(G11.3) Cerebellar ataxia with defective DNA repair
Ataxia telangiectasia (Louis-Bar)
(G11.4) Hereditary spastic paraplegia
(G12.) Spinal muscular atrophy and related syndromes
(G12.0) Werdnig-Hoffman disease (Type 1)
(G12.1) Other inherited spinal muscular atrophy
Progressive bulbar palsy of childhood (Fazio-Londe)
Kugelberg-Welander disease (Type 3)
(G12.2) Motor neuron disease
Familial motor neuron disease
Amyotrophic lateral sclerosis
Primary lateral sclerosis
Progressive bulbar palsy
Progressive spinal muscular atrophy
(G13.) Systemic atrophies primarily affecting central nervous system in
diseases classified elsewhere
(G13.0) Paraneoplastic neuromyopathy and neuropathy
(G13.1) Other systemic atrophy primarily affecting central nervous system in
neoplastic disease
(G13.2) Systemic atrophy primarily affecting central nervous system in
myxoedema
(G13.8) Systemic atrophy primarily affecting central nervous system in other
diseases classified elsewhere
[edit] (G20-G26) Extrapyramidal and movement disorders
(G20.) Parkinson's disease
(G21.) Secondary parkinsonism
(G21.0) Malignant neuroleptic syndrome
(G21.3) Postencephalitic parkinsonism
(G22.) Parkinsonism in diseases classified elsewhere
(G23.) Other degenerative diseases of basal ganglia
(G23.0) Hallervorden-Spatz disease
(G23.1) Progressive supranuclear ophthalmoplegia
(Steele-Richardson-Olszewski)
(G23.2) Striatonigral degeneration
(G23.8) Other specified degenerative diseases of basal ganglia
(G23.9) Degenerative disease of basal ganglia, unspecified
(G24.) Dystonia
(G24.0) Drug-induced dystonia
(G24.1) Idiopathic familial dystonia
(G24.2) Idiopathic nonfamilial dystonia
(G24.3) Spasmodic torticollis
(G24.4) Idiopathic orofacial dystonia
Orofacial dyskinesia
(G24.5) Blepharospasm
(G24.8) Other dystonia
(G24.9) Dystonia, unspecified
Dyskinesia NOS
(G25.) Other extrapyramidal and movement disorders
(G25.0) Essential tremor
(G25.1) Drug-induced tremor
(G25.2) Other specified forms of tremor
(G25.3) Myoclonus
(G25.4) Drug-induced chorea
(G25.5) Other chorea
(G25.6) Drug-induced tics and other tics of organic origin
(G25.8) Other specified extrapyramidal and movement disorders
Restless legs syndrome
Stiff-man syndrome
(G25.9) Extrapyramidal and movement disorder, unspecified
(G26.) Extrapyramidal and movement disorders in diseases classified
elsewhere
[edit] (G30-G32) Other degenerative diseases of the nervous system
(G30.) Alzheimer's disease
(G31.) Other degenerative diseases of nervous system, not elsewhere
classified
(G31.0) Circumscribed brain atrophy
(G31.1) Senile degeneration of brain, not elsewhere classified
(G31.2) Degeneration of nervous system due to alcohol
(G31.8) Other specified degenerative diseases of nervous system
Grey-matter degeneration (Alpers)
Lewy body dementia
Subacute necrotizing encephalopathy (Leigh)
(G31.9) Degenerative disease of nervous system, unspecified
(G32.) Other degenerative disorders of nervous system in diseases classified
elsewhere
[edit] (G35-G37) Demyelinating diseases of the central nervous system
(G35.) Multiple sclerosis
(G36.) Other acute disseminated demyelination
(G36.0) Neuromyelitis optica (Devic)
(G36.1) Acute and subacute haemorrhagic leukoencephalitis (Hurst)
(G36.8) Other specified acute disseminated demyelination
(G36.9) Acute disseminated demyelination, unspecified
(G37.) Other demyelinating diseases of central nervous system
(G37.0) Diffuse sclerosis
(G37.1) Central demyelination of corpus callosum
(G37.2) Central pontine myelinolysis
(G37.3) Acute transverse myelitis in demyelinating disease of central
nervous system
(G37.4) Subacute necrotizing myelitis
(G37.5) Concentric sclerosis (Baló)
(G37.8) Other specified demyelinating diseases of central nervous system
(G37.9) Demyelinating disease of central nervous system, unspecified
[edit] (G40-G47) Episodic and paroxysmal disorders
(G40.) Epilepsy
(G40.0) Localization-related (focal)(partial) idiopathic epilepsy and
epileptic syndromes with seizures of localized onset
(G40.1) Localization-related (focal)(partial) symptomatic epilepsy and
epileptic syndromes with simple partial seizures
(G40.2) Localization-related (focal)(partial) symptomatic epilepsy and
epileptic syndromes with complex partial seizures
(G40.3) Generalized idiopathic epilepsy and epileptic syndromes
Benign:
myoclonic epilepsy in infancy
neonatal convulsions (familial)
Childhood absence epilepsy (pyknolepsy)
Epilepsy with grand mal seizures on awakening
Juvenile:
absence epilepsy
myoclonic epilepsy (impulsive petit mal)
Nonspecific epileptic seizures:
atonic
clonic
myoclonic
tonic
tonic-clonic
(G40.4) Other generalized epilepsy and epileptic syndromes
Epilepsy with:
myoclonic absences
myoclonic-astatic seizures
Infantile spasms
Lennox-Gastaut syndrome
Salaam attacks
Symptomatic early myoclonic encephalopathy
West's syndrome
(G40.5) Special epileptic syndromes
Epilepsia partialis continua (Kozhevnikof)
(G40.6) Grand mal seizures, unspecified (with or without petit mal)
(G40.7) Petit mal, unspecified, without grand mal seizures
(G40.8) Other epilepsy
Epilepsies and epileptic syndromes undetermined as to whether they are focal
or generalized
(G40.9) Epilepsy, unspecified
(G41.) Status epilepticus
(G41.0) Grand mal status epilepticus
(G41.1) Petit mal status epilepticus
(G41.2) Complex partial status epilepticus
(G41.8) Other status epilepticus
(G41.9) Status epilepticus, unspecified
(G43.) Migraine
(G43.0) Migraine without aura (common migraine)
(G43.1) Migraine with aura (classical migraine)
(G43.2) Status migrainosus
(G43.3) Complicated migraine
(G43.4) Other migraine
(G43.5) Migraine, unspecified
(G44.) Other headache syndromes
(G44.0) Cluster headache syndrome
(G44.1) Vascular headache, not elsewhere classified
(G44.2) Tension-type headache
(G44.3) Chronic post-traumatic headache
(G44.4) Drug-induced headache, not elsewhere classified
(G44.8) Other specified headache syndromes
(G45.) Transient cerebral ischaemic attacks and related syndromes
(G45.0) Vertebro-basilar artery syndrome
(G45.1) Carotid artery syndrome (hemispheric)
(G45.2) Multiple and bilateral precerebral artery syndromes
(G45.3) Amaurosis fugax
(G45.4) Transient global amnesia
(G45.8) Other transient cerebral ischaemic attacks and related syndromes
(G45.9) Transient cerebral ischaemic attack, unspecified
(G46.) Vascular syndromes of brain in cerebrovascular diseases
(G46.0) Middle cerebral artery syndrome
(G46.1) Anterior cerebral artery syndrome
(G46.2) Posterior cerebral artery syndrome
(G46.3) Brain stem stroke syndrome
Benedikt syndrome
Claude syndrome
Foville syndrome
Millard-Gubler syndrome
Wallenberg syndrome
Weber syndrome
(G46.4) Cerebellar stroke syndrome
(G46.5) Pure motor lacunar syndrome
(G46.6) Pure sensory lacunar syndrome
(G46.7) Other lacunar syndromes
(G46.8) Other vascular syndromes of brain in cerebrovascular diseases
(G47.) Sleep disorders
(G47.0) Disorders of initiating and maintaining sleep (insomnias)
(G47.1) Disorders of excessive somnolence (hypersomnias)
(G47.2) Disruptions in circadian rhythm including jet lag
(G47.3) Sleep apnoea
(G47.4) Narcolepsy and cataplexy
[edit] (G50-G59) Nerve, nerve root and plexus disorders
(G50.) Disorders of trigeminal nerve
(G50.0) Trigeminal neuralgia
(G51.) Facial nerve disorders
(G51.0) Bell's palsy
Facial palsy
(G51.1) Geniculate ganglionitis
(G51.2) Melkersson's syndrome
Melkersson-Rosenthal syndrome
(G51.3) Clonic hemifacial spasm
(G51.4) Facial myokymia
(G51.8) Other disorders of facial nerve
(G51.8) Disorder of facial nerve, unspecified
(G52.) Disorders of other cranial nerves
(G53.) Cranial nerve disorders in diseases classified elsewhere
(G54.) Nerve root and plexus disorders
(G54.0) Brachial plexus disorders
Thoracic outlet syndrome
(G54.6) Phantom limb syndrome with pain
(G54.7) Phantom limb syndrome without pain
(G55.) Nerve root and plexus compressions in diseases classified elsewhere
(G56.) Mononeuropathies of upper limb
(G56.0) Carpal tunnel syndrome
(G56.4) Causalgia
(G57.) Mononeuropathies of lower limb
(G57.0) Lesion of sciatic nerve
(G57.1) Meralgia paraesthetica
(G57.2) Lesion of femoral nerve
(G57.3) Lesion of lateral popliteal nerve
(G57.4) Lesion of medial popliteal nerve
(G57.5) Tarsal tunnel syndrome
(G57.6) Lesion of plantar nerve
(G57.8) Other mononeuropathies of lower limb
(G57.9) Mononeuropathy of lower limb, unspecified
(G58.) Other mononeuropathies
(G59.) Mononeuropathy in diseases classified elsewhere
[edit] (G60-G64) Polyneuropathies and other disorders of the peripheral
nervous system
(G60.) Hereditary and idiopathic neuropathy
(G60.0) Hereditary motor and sensory neuropathy
Charcot-Marie-Tooth disease
Déjerine-Sottas disease
Hereditary motor and sensory neuropathy, types I-IV
Hypertrophic neuropathy of infancy
Peroneal muscular atrophy (axonal type)(hypertrophic type)
Roussy-Lévy syndrome
(G60.1) Refsum's disease
(G60.2) Neuropathy in association with hereditary ataxia
(G60.3) Idiopathic progressive neuropathy
(G60.8) Other hereditary and idiopathic neuropathies
Morvan's disease
Nelaton's syndrome
Sensory neuropathy
(G60.9) Hereditary and idiopathic neuropathy, unspecified
(G61.) Inflammatory polyneuropathy
(G61.0) Guillain-Barré syndrome
(G61.1) Serum neuropathy
(G61.8) Other inflammatory polyneuropathies
(G61.9) Inflammatory polyneuropathy, unspecified
(G62.) Other polyneuropathies
(G62.0) Drug-induced polyneuropathy
(G62.1) Alcoholic polyneuropathy
(G62.2) Polyneuropathy due to other toxic agents
(G62.8) Other specified polyneuropathies
(G62.9) Polyneuropathy, unspecified
Neuropathy NOS
(G63.) Polyneuropathy in diseases classified elsewhere
(G64.) Other Disorders of peripheral nervous system
[edit] (G70-G73) Diseases of myoneural junction and muscle
(G70.) Myasthenia gravis and other myoneural disorders
(G70.0) Myasthenia gravis
(G70.1) Toxic myoneural disorders
(G70.2) Congenital and developmental myasthenia
(G71.) Primary disorders of muscles
(G71.0) Muscular dystrophy
benign muscular dystrophy (Becker muscular dystrophy)
benign scapuloperoneal muscular dystrophy with early contractures
(Emery-Dreifuss muscular dystrophy)
distal muscular dystrophy
facioscapulohumeral muscular dystrophy
limb-girdle muscular dystrophy
ocular muscular dystrophy
oculopharyngeal muscular dystrophy
scapuloperoneal muscular dystrophy
severe muscular dystrophy (Duchenne muscular dystrophy)
(G71.1) Myotonic disorders
Dystrophia myotonica (Steinert)
chondrodystrophic myotonia
drug-induced myotonia
symptomatic myotonia
Myotonia congenita - NOS:
Myotonia congenita - dominant (Thomsen)
Myotonia congenita - recessive (Becker)
Neuromyotonia (Isaacs)
Paramyotonia congenita
Pseudomyotonia
(G71.2) Congenital myopathies, including:
Central core disease
Congenital muscular dystrophy
Centronuclear myopathy
Fibre-type disproportion
Minicore disease
Multicore disease
Myotubular myopathy
Nemaline myopathy
(G71.3) Mitochondrial myopathy, not elsewhere classified
(G72.) Other myopathies
(G72.0) Drug-induced myopathy
(G72.1) Alcoholic myopathy
(G72.2) Myopathy due to other toxic agents
(G72.3) Periodic paralysis
Hypokalemic periodic paralysis
Hyperkalemic periodic paralysis
(G73.) Disorders of myoneural junction and muscle in diseases classified
elsewhere
(G73.0) Myasthenic syndromes in endocrine diseases
(G73.1) Eaton-Lambert syndrome
(G73.2) Other myasthenic syndromes in neoplastic disease
(G73.3) Myasthenic syndromes in other diseases classified elsewhere
(G73.4) Myopathy in infectious and parasitic diseases classified elsewhere
(G73.5) Myopathy in endocrine diseases
(G73.6) Myopathy in metabolic diseases
(G73.7) Myopathy in other diseases classified elsewhere
[edit] (G80-G83) Cerebral palsy and other paralytic syndromes
(G80.) Cerebral palsy
(G80.0) Spastic quadriplegic cerebral palsy
(G80.1) Spastic diplegic cerebral palsy
(G80.2) Spastic hemiplegic cerebral palsy
(G80.3) Dyskinetic cerebral palsy
(G80.4) Ataxic cerebral palsy
(G80.8) Other cerebral palsy
(G80.9) Cerebral palsy, unspecified
(G81.) Hemiplegia
(G81.0) Flaccid hemiplegia
(G81.1) Spastic hemiplegia
(G81.9) Hemiplegia, unspecified
(G82.) Paraplegia and tetraplegia
(G82.0) Flaccid paraplegia
(G82.1) Spastic paraplegia
(G82.2) Paraplegia, unspecified
Paralysis of both lower limbs NOS
Paraplegia (lower) NOS
(G82.3) Flaccid tetraplegia
(G82.4) Spastic tetraplegia
(G82.5) Tetraplegia, unspecified
Quadriplegia NOS
(G83.) Other paralytic syndromes
(G83.0) Diplegia of upper limbs
(G83.1) Monoplegia of lower limb
(G83.2) Monoplegia of upper limb
(G83.3) Monoplegia, unspecified
(G83.4) Cauda equina syndrome
(G83.8) Other specified paralytic syndromes
(G83.9) Paralytic syndrome, unspecified
[edit] (G90-G99) Other disorders of the nervous system
(G90.) Disorders of autonomic nervous system
(G90.0) Idiopathic peripheral autonomic neuropathy
(G90.1) Familial dysautonomia (Riley-Day)
(G90.2) Horner's syndrome
(G90.3) Multi-system degeneration
(G90.8) Other disorders of autonomic nervous system
(G90.9) Disorder of autonomic nervous system, unspecified
(G91.) Hydrocephalus
(G92.) Toxic encephalopathy
(G93.) Other disorders of brain
(G93.0) Cerebral cysts
(G93.1) Anoxic brain damage, not elsewhere classified
(G93.2) Benign intracranial hypertension
-->(G93.3) Postviral fatigue syndrome, benign ME
(G93.4) Encephalopathy, unspecified
(G93.5) Compression of brain
(G93.6) Cerebral oedema
(G93.7) Reye's syndrome
(G94.) Other disorders of brain in diseases classified elsewhere
(G95.) Other diseases of spinal cord
(G95.0) Syringomyelia and syringobulbia
(G95.1) Vascular myelopathies
(G95.2) Cord compression, unspecified
(G95.8) Other specified diseases of spinal cord
(G95.9) Disease of spinal cord, unspecified
Myelopathy NOS
(G96.) Other disorders of central nervous system
(G97.) Postprocedural disorders of nervous system, not elsewhere classified
(G98.) Other disorders of nervous system, not elsewhere classified
(G99.) Other disorders of nervous system in diseases classified elsewhere

A response to:

Sick and Tired - Nancy Klimas, M.D.

There is much I could write about this article full of old rhetoric and ideas...but it's already been said over and over and over again....
and it's time to move forward.

I just don't see tightly knit groups of USA researchers doing anything groundbreaking when they don't update their thinking or their processes, and when they continue to rely on prevalence studies and psychologists/psychiatrists for interpretations.

And especially not when they ALL continue to focus on CHRONIC FATIGUE - which is a SYMPTOM that many, many illnesses present with!!!!!!!!!!!

Why, instead, do they all not start reading what Ramsey, Dowsett, Hyde and other serious ME researchers and clinicians have already  documented over the decades, and move forward from there?

Why do they persist in trying to reinvent the wheel here??? Are they that obtuse, or are they covering up something?

Or are they just not willing to admit that they've made blundering mistakes in the past 20+ years??

Meanwhile, those with ME (acute onset viral! affects the brain first! classified under neurogenic!) continue to suffer horrifically and die, while they are lumped together with those far less ill, and in different ways...who are 'fatigued'. Oh, I wish fatigue was all I had to deal with daily....

-->If this is the best they have to offer, we are all in deep, deep trouble:( Stop accepting the status quo, people. It's not helping any of us.

LKW

6/11/2007

I thank Lenny Jason, PhD, for writing in response to Reeve's article on the new CFS definition. As a researcher and a PhD with years of involvement, his input will no doubt be taken more seriously than that of patient advocates. And what he wrote is very good (so far as it goes.)

NOTES: If the IACFS wishes to be taken seriously, they need to stop using the 'Wessely School' term for their psychosocial illness MODEL: 'CFS/ME'.

It is important for all reading this article to remember that the Lake Tahoe outbreak in the '80's appears, in retrospect, to have actually been yet
another ME (Myalgic Encephalomyelitis) outbreak. And that USA CDC staff then CHOSE to ignore that illness and it's decades-long corroborating documentation, and instead decided to say they were seeing a new, emerging illness...which they named it 'CFS'.

~~~

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 and chronic fatigue (cf).

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

. STOP focusing on FATIGUE!!! It's a SYMPTOM!!!

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

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

~~~

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

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

. START using the term ME when referring to those who meet the critieria for it (i.e., patients who's 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
lkw777@charter.net

Leonard Jason, Ph.D., DePaul University review article of "Problems with the
New CDC CFS Prevalence Estimates":

http://iacfs.net/p/1,544.html

Reeves original article at:

http://www.pophealthmetrics.com/content/5/1/5

It wasn't just a few small town docs who created this mess - the CDC was called in and so their staff was directly involved. And a group of Drs who knew too little were selected to draft the Fukada, et al, about this 'new and emerging illness', based on fatigue. I know personal pcs were not in use by the general public just then yet, maybe that would have helped to give them all access to much-needed info.

-->But on the other hand, the CDC's around the world are supposed to be the most informed and their job is to protect the masses!!

If you look at the 20+ years long subterfuge, and then also look at the massive cuckolding the Wessely School has managed in the UK,  the sheer size and audacity of these combined campaigns is...astounding.

So the #1 Q becomes: who exactly is benefitting from it????

That is what you have to unravel all of the layers to discover. I'm guessing the gov'n and insurance companies. Partly because I don't want to think it was just plain illness ignorance, from that level...and partly because of the numbers i