Re: Why I'm Not A CFS Activist---getting on track

August 30, 2006

Hello,

I think you're right on track, Sara, with your reply to my comments.

I think your approach is very focused and well thought out.

1. Reclaiming Myalgic Encephalomyelitis & the Neurological classification

and as you say, " They can have their made- up little disease; but we don't

have to agree to it. We're free to

walk away from that definition, and put ourselves under the much more

sturdy umbrella of ME. If we did this en masse, this charade would

end. And so would the arguments. "

2. Not allowing the CDC to lead the parade into total psychologizing of the

disease,

again, as you say, " I have ME, which is a

disease with a 70-year history covering scores of outbreaks on every

continent (and which also describes my specific symptoms far more

accurately than that stupid " CFS " confection concocted by the CDC). "

By the way, nobody with MS complained that activists were attacking

sufferers of " Faker's Disease " or " Hysterics Paralysis " by returning to

the name Multiple Sclerosis which was first suggested for the disease

by a Dr. Chercot in the late 1800s. Instead they welcomed the return and use

of a more descriptive and scientific name and the movement back toward a

scientifically based description of the disease.

3. Not allowing the medical practitioners to use the word " fatigue "

which immediately turns the discussion into an easily recoverable condition

according to the experience of the public and physicians.

I like to use the Ramsey definition

as well as some of Rich's summary of Dr. Hyde's description of the disease

in his Wisconsin AACFS lecture

in my two-page handout to medical practitioners. Here are a couple portions of

it:

Description of Myalgic Encephalomyelitis

ICD-9CM-323.9 Neurological Disease; ICD-10---G 93.3

Myalgic Encephalomyelitis is a neuroimmune disease, which is precipitated

by multiple viral assault or toxic chemical exposure.

Abnormal objective tests: abnormal brain SPECT & PET scan neuroimaging

(hypoperfusion in several regions of the brain), low natural killer cell

function,

abnormal capillary flow and low circulating blood volume, dysregulation of cell

metabolism & anti-viral pathway, mitochondrial encephalopathy (Magnetic

Resonance Spectroscopy), abnormal bicycle ergometry test with gas analysis

indicating immediate movement to anaerobic threshold, head-up tilt test with

haemodynamic instability, abnormal T-helper 1/T-helper 2 Function Panel,

diastolic cardiomyopathy (Impedance Cardiography).

Dr. Melvin Ramsay, pioneer UK researcher and clinician, posits this

short description of Myalgic Encephalomyelitis: 1) Muscle myopathy, which

Ramsay describes as a delay in muscle recovery after exercise. 2) Circulatory

impairment including intolerance to temperature extremes, and exacerbated by

low pressure weather systems. 3) Cerebral (brain) dysfunction including

problems with memory and concentration, sleep disturbances, noise intolerance,

palpitations and tachycardia.

Dr. Ramsey's 1986 more complete definition:

A syndrome initiated by a virus infection, commonly in the form of a respiratory

or gastrointestinal illness with significant headache, malaise and dizziness

sometimes accompanied by lymphadenopathy or rash. Insidious or more

dramatic onsets following neurological, cardiac or endocrine disability are

also recognized.

Characteristic features include:-

(1) A multisystem disease, primarily neurological with variable involvement of

liver, cardiac and skeletal muscle, lymphoid and endocrine organs.

(2) Neurological disturbance - an unpredictable state of central nervous system

exhaustion following mental or physical exertion which may be delayed and

require

several days for recovery; an unique neuro-endocrine profile which differs from

depression in that the hypothalamic/pituitary/adrenal response to stress is

deficient;

dysfunction of the autonomic and sensory nervous systems; cognitive problems.

(3) Musculo-skeletal dysfunction in a proportion of patients (related to sensory

disturbance or to the late metabolic and auto immune effects of infection)

(4) A characteristically chronic relapsing course "

Dr. Byron Hyde, a Canadian specialist in Myalgic Encephalomyelitis offers

this definition of Myalgic Encephalomyelitis: " Myalgic Encephalomyelitis is a

measurable, diffuse post-encephalitic illness. The illness is characterized by

(1) its acute onset, (2) the diffuse, non-focal persisting nature of the

encephalopathy, and (3) the chronicity of the resulting symptoms. These

symptoms consist of the rapid exhaustion or loss of stamina of motor, sensory,

intellectual, and cognitive abilities. M.E. is of infectious/autoimmune origin

and

less commonly, a toxic/autoimmune origin.

M.E. occurs in epidemics and sporadic cases. "

" The evidence would suggest that Myalgic Encephalomyelitis is caused primarily

by a diverse group of viral infections that have neurotropic characteristics and

that

appear to exert their influence primarily on the CNS arterial bed. The

available

brain technology limits the viral site of action to the capillaries and

microarterial

CNS bed. This diffuse vascular site of injury rather than a neurological

cellular

site of injury explains the natural history of Myalgic Encephalomyelitis-type

illness. "

[Rich's Note--What he is saying here is that there is evidence that the causes

of Myalgic Encephalomyelitis are any of a group of viruses that are able to

infect

the brain. By means of high-resolution SPECT scanning, he can tell that they

mainly

affect the small arteries and capillaries in the brain.] " It is also noted that

many

Myalgic Encephalomyelitis patients also have generalized arterial

pathophysiology

[Note --In other words, there are problems with the arteries all over their

bodies.],

causing various vascular problems that include in numerous patients: (1)

insufficient

blood pressure increase on exertion, (2) hyperelasticity and

hyper-contractibility of

arterial blood vessels, (3) various forms of arterial mediated vascular

orthostatic

pathophysiology [Note --In other words, they have difficulty standing up because

of problems with their arteries] as demonstrated by Drs. Streeten,

Bell, and Rowe, and (4) cholinesterase dysfunction in the arterial wall,

causing arterial elasticity dysfunction as demonstrated by Dr. Vance Spence at

Dundee University, Scotland. "

By the way, I just got a note from Dr. Simpson who has shown

in at least two studies the

unusually high number of abnormally shaped red blood cells in ME which causes

reduced capillary flow. He's concerned that the Consensus Criteria moves a

little

too much into the area of CFS.

He says, " In contrast to the USA, ME was satisfactorily diagnosed in the

UK, Australia and NZ - until the Holmes group and the psychiatrists got into

gear.

Ramsay's concept of a unique form of muscle fatigability, whereby

even after a minor degree of physical effort. Three four or five days or

longer elapse before full muscle power is restored.

Since 1988, there have been more than 2000 papers published about

CFS - yet the pathophysiology remains unexplained. This has to be a

weird situation, and it seems that people are finding out more and more

of less and less. Without an understanding to the pathophysiology,

treatment will be based upon guesswork. "

Du Pre

Poetry website: http://www.angelfire.com/poetry/soareagle/index.html

" By words the mind is winged. " Aristophanes

Website for National Alliance for Myalgic Encephalomyelitis:

http://www.name-us.org

August 30, 2006

" Du Pre " wrote:

>

" They can have their made- up little disease; but we don't have to

agree to it. We're free to walk away from that definition, and put

ourselves under the much more sturdy umbrella of ME. If we did this en

masse, this charade would end. And so would the arguments. "

>

> By the way, nobody with MS complained that activists were

attacking sufferers of " Faker's Disease " or " Hysterics Paralysis " by

returning to the name Multiple Sclerosis which was first suggested for

the disease by a Dr. Chercot in the late 1800s. Instead they welcomed

the return and use of a more descriptive and scientific name and the

movement back toward a scientifically based description of the disease.

>

Did sufferers turn around and say that " Hysterical Paralysis " was

REALLY what the doctors claimed, and that the " Fakers " were really

faking?

Did AIDS patients say " GRID " really IS Gay Related Immune Deficiency

brought on by their lifestyle, but we have something real?

Did " Mongolian Idiots " say " Let them have their little made up

disease of slant eyed racial denigration - We DOWN syndrome people are

nothing like them " .

That's what you would be doing to say that CFS is what the terrorists

said. You would walking away from those who suffered under CFS and

add your voice to those who have always abused CFSers - and you would

even be using their same words: " CFS is fatigue " .

You are making two contradicting arguments simultaneously.

One says that CFS is real and needs to be changed, and also that " they

can have their little made-up illness, because we are not those

fatigue people " .

Doesn't work that way. No matter which side you choose, you have to

choose one or the other.

Either CFS is a bad name for a real illness and needs to be changed.

Or CFS is really nothing more than what the deniers always said.

Can't have both.

And we have far too much evidence supporting the physiological basis

for CFS for anyone with a shred of sanity to say that there isn't

something seriously wrong.

So the choice to let them have their little made up illness was never

possible. The prototypes for CFS are still around, and our

immunological markers are consistent with ME.

That's the funny thing about science.

Everybody in the world can vote to say that CFS is fatigue, and their

numbers wouldn't matter.

I have no problems with changing the name a few hundred more times,

but if one were to say " Let them have their little illness of

Infectious Venulitis " or " Tapanui Flu " or " Icelandic Disease "

or " Punta Gorda disease " , it still cannot be done. These people are

truly ill, and their history has already been written.

-

August 30, 2006

On Aug 30, 2006, at 8:19 PM, Du Pre wrote:

> Hello,

> I think you're right on track, Sara, with your reply to my

> comments.

> I think your approach is very focused and well thought out.

Thanks. I just don't have the energy to pick up the " CFS " sign and

take the abuse that inevitably seems to come with it -- from doctors,

from the public, and from other people who seem very abused by that

definition, but refuse to let go of it.

By the way: I thought I wrote an email about this, but it doesn't

seem to have come through....

I have an appointment to see Dr. Bruce Carruthers on October 3. The

man himself. So, in another month, the author of the Canadian

Consensus will be my local ME doc!

Yes, I'm excited.

Sara

August 31, 2006

Sara, , ,

Isn't ME the only official name in Canada? And known as that by regular people?

The CDC is not a Canadian resident's Govt.

So...entirely different topic from ME, CFS, in US.

Katrina

>

> > Hello,

> > I think you're right on track, Sara, with your reply to my

> > comments.

> > I think your approach is very focused and well thought out.

>

> Thanks. I just don't have the energy to pick up the " CFS " sign and

> take the abuse that inevitably seems to come with it -- from doctors,

> from the public, and from other people who seem very abused by that

> definition, but refuse to let go of it.

>

> By the way: I thought I wrote an email about this, but it doesn't

> seem to have come through....

>

> I have an appointment to see Dr. Bruce Carruthers on October 3. The

> man himself. So, in another month, the author of the Canadian

> Consensus will be my local ME doc!

>

> Yes, I'm excited.

>

> Sara

>

August 31, 2006

I think this is a very useful discussion and yes if you get spect scan

abnormalities you can apply for disability.

The problem is that without extra $ disability can be very difficult

to live on. You have to radically alter your lifestyle so its

something to plan out well (unless as in Sara's case, you are in a

pretty, livaeble area that is cosmopolitan but off the beaten

track,and your husband is earning a good living). IE if I ever wanted

to consider it (hopefully not), I'd have to leave NYC, everything I

know, to find cheap section 8 housing, for which I might be on a

waiting list, or maybe I'd find such housing in Yonkers or Queens, a

neighborhood I have no affinity for. I could do some writing but it

would take away from my disability so there would be an unconscious

incentive not to be paid. I'd have medicare so could see my doctor and

get tests, but I certanly couldnt' afford the organic foods that are

so important to me, as my diet is limited and thus expensive. Many of

the things I take for granted woudl not be affordable, such as my

cellphone and fast cable modem. These readustments are enormous and

above all one gives up one's paricipation in society in what society

regards as a meaningful way. I do think it can be done but its

supremely difficult because the amount doled outo n disability is low.

I do know someone who has a nice section 8 two bedroom in another city

and works off the books as an accountant, and I don't fault him for

that. He simpoly couldn't even pay basic expenses with mere

disability. He was a juvenile diabetic with later complications.

Getting the word fatigue out of the definition is so important.

Fatigue is a wastebasket diagnosis that everybody believes they

participate in. ME is a concrete word that indicate brain infection

and inflammation and thus that can be documented.

>

> Hello,

> I think you're right on track, Sara, with your reply to my comments.

> I think your approach is very focused and well thought out.

>

> 1. Reclaiming Myalgic Encephalomyelitis & the Neurological

classification

> and as you say, " They can have their made- up little disease; but we

don't

> have to agree to it. We're free to

> walk away from that definition, and put ourselves under the much more

> sturdy umbrella of ME. If we did this en masse, this charade would

> end. And so would the arguments. "

>

> 2. Not allowing the CDC to lead the parade into total

psychologizing of the disease,

> again, as you say, " I have ME, which is a

> disease with a 70-year history covering scores of outbreaks on every

> continent (and which also describes my specific symptoms far more

> accurately than that stupid " CFS " confection concocted by the CDC). "

>

> By the way, nobody with MS complained that activists were attacking

> sufferers of " Faker's Disease " or " Hysterics Paralysis " by returning to

> the name Multiple Sclerosis which was first suggested for the disease

> by a Dr. Chercot in the late 1800s. Instead they welcomed the

return and use

> of a more descriptive and scientific name and the movement back toward a

> scientifically based description of the disease.

>

> 3. Not allowing the medical practitioners to use the word " fatigue "

> which immediately turns the discussion into an easily recoverable

condition

> according to the experience of the public and physicians.

> I like to use the Ramsey definition

> as well as some of Rich's summary of Dr. Hyde's description of the

disease

> in his Wisconsin AACFS lecture

> in my two-page handout to medical practitioners. Here are a couple

portions of it:

>

> Description of Myalgic Encephalomyelitis

> ICD-9CM-323.9 Neurological Disease; ICD-10---G 93.3

>

> Myalgic Encephalomyelitis is a neuroimmune disease, which is

precipitated

> by multiple viral assault or toxic chemical exposure.

>

> Abnormal objective tests: abnormal brain SPECT & PET scan neuroimaging

> (hypoperfusion in several regions of the brain), low natural killer

cell function,

> abnormal capillary flow and low circulating blood volume,

dysregulation of cell

> metabolism & anti-viral pathway, mitochondrial encephalopathy (Magnetic

> Resonance Spectroscopy), abnormal bicycle ergometry test with gas

analysis

> indicating immediate movement to anaerobic threshold, head-up tilt

test with

> haemodynamic instability, abnormal T-helper 1/T-helper 2 Function Panel,

> diastolic cardiomyopathy (Impedance Cardiography).

>

> Dr. Melvin Ramsay, pioneer UK researcher and clinician, posits this

> short description of Myalgic Encephalomyelitis: 1) Muscle myopathy,

which

> Ramsay describes as a delay in muscle recovery after exercise. 2)

Circulatory

> impairment including intolerance to temperature extremes, and

exacerbated by

> low pressure weather systems. 3) Cerebral (brain) dysfunction

including

> problems with memory and concentration, sleep disturbances, noise

intolerance,

> palpitations and tachycardia.

>

> Dr. Ramsey's 1986 more complete definition:

> A syndrome initiated by a virus infection, commonly in the form of a

respiratory

> or gastrointestinal illness with significant headache, malaise and

dizziness

> sometimes accompanied by lymphadenopathy or rash. Insidious or more

> dramatic onsets following neurological, cardiac or endocrine

disability are

> also recognized.

> Characteristic features include:-

> (1) A multisystem disease, primarily neurological with variable

involvement of

> liver, cardiac and skeletal muscle, lymphoid and endocrine organs.

> (2) Neurological disturbance - an unpredictable state of central

nervous system

> exhaustion following mental or physical exertion which may be

delayed and require

> several days for recovery; an unique neuro-endocrine profile which

differs from

> depression in that the hypothalamic/pituitary/adrenal response to

stress is deficient;

> dysfunction of the autonomic and sensory nervous systems; cognitive

problems.

> (3) Musculo-skeletal dysfunction in a proportion of patients

(related to sensory

> disturbance or to the late metabolic and auto immune effects of

infection)

> (4) A characteristically chronic relapsing course "

>

> Dr. Byron Hyde, a Canadian specialist in Myalgic Encephalomyelitis

offers

> this definition of Myalgic Encephalomyelitis: " Myalgic

Encephalomyelitis is a

> measurable, diffuse post-encephalitic illness. The illness is

characterized by

> (1) its acute onset, (2) the diffuse, non-focal persisting nature of the

> encephalopathy, and (3) the chronicity of the resulting symptoms. These

> symptoms consist of the rapid exhaustion or loss of stamina of

motor, sensory,

> intellectual, and cognitive abilities. M.E. is of

infectious/autoimmune origin and

> less commonly, a toxic/autoimmune origin.

>

> M.E. occurs in epidemics and sporadic cases. "

>

> " The evidence would suggest that Myalgic Encephalomyelitis is caused

primarily

> by a diverse group of viral infections that have neurotropic

characteristics and that

> appear to exert their influence primarily on the CNS arterial bed.

The available

> brain technology limits the viral site of action to the capillaries

and microarterial

> CNS bed. This diffuse vascular site of injury rather than a

neurological cellular

> site of injury explains the natural history of Myalgic

Encephalomyelitis-type

> illness. "

>

> [Rich's Note--What he is saying here is that there is evidence that

the causes

> of Myalgic Encephalomyelitis are any of a group of viruses that are

able to infect

> the brain. By means of high-resolution SPECT scanning, he can tell

that they mainly

> affect the small arteries and capillaries in the brain.] " It is also

noted that many

> Myalgic Encephalomyelitis patients also have generalized arterial

pathophysiology

> [Note --In other words, there are problems with the arteries all

over their bodies.],

> causing various vascular problems that include in numerous patients:

(1) insufficient

> blood pressure increase on exertion, (2) hyperelasticity and

hyper-contractibility of

> arterial blood vessels, (3) various forms of arterial mediated

vascular orthostatic

> pathophysiology [Note --In other words, they have difficulty

standing up because

> of problems with their arteries] as demonstrated by Drs.

Streeten,

> Bell, and Rowe, and (4) cholinesterase dysfunction in the

arterial wall,

> causing arterial elasticity dysfunction as demonstrated by Dr. Vance

Spence at

> Dundee University, Scotland. "

>

> By the way, I just got a note from Dr. Simpson who has shown

> in at least two studies the

> unusually high number of abnormally shaped red blood cells in ME

which causes

> reduced capillary flow. He's concerned that the Consensus Criteria

moves a little

> too much into the area of CFS.

> He says, " In contrast to the USA, ME was satisfactorily diagnosed in the

> UK, Australia and NZ - until the Holmes group and the psychiatrists

got into gear.

> Ramsay's concept of a unique form of muscle fatigability, whereby

> even after a minor degree of physical effort. Three four or five days or

> longer elapse before full muscle power is restored.

> Since 1988, there have been more than 2000 papers published about

> CFS - yet the pathophysiology remains unexplained. This has to be a

> weird situation, and it seems that people are finding out more and more

> of less and less. Without an understanding to the pathophysiology,

> treatment will be based upon guesswork. "

>

> Du Pre

> Poetry website: http://www.angelfire.com/poetry/soareagle/index.html

> " By words the mind is winged. " Aristophanes

> Website for National Alliance for Myalgic Encephalomyelitis:

http://www.name-us.org

>

August 31, 2006

You are saying you have something to lose by getting on disability, that you are

fending better without it?

Adrienne