a Fair Name Campaign ?

[Guest guest]

All negative reactions to the Fair Name Campaign

about the name Myalgic Encephalopathy were

removed from the site.

And patients who thought that the (temporary) name

*ME/CFS* (Myalgic Encephalomyelitis/Chronic Fatigue

Syndrome) was anyhow better than *CFS*, but

(because of brainfog) later on concluded that, the

name was changed into Myalgic Encephalopathy,

could not retracted their vote.

The Founder became rich of ME, due to differences in

scientific studies, caused by the terrible, political

CDC criteria, which will never provide any medication,

apart from CBT and GET.

The (bio) psychosocial school has made the winning

goal - because they are the *scientists*, who didn't

want the name Myalgic Encephalomyelitis.

Why didn't the founder spent all this money to fight

for a solid definition, based on the ME outbreaks in

the USA and other parts of the world?

Together with the name change we have lost our

rights of the WHO classification, because their isn't

an illness in the ICD called Myalgic Encephalopathy!

and concernig the examples is written:

" ..As a result, we're already starting to see

*ME/CFS* appear more often.

Some examples:

In January 2007 the IACFS voted to change its name

to IACFS/ME.

----->>> so NOT *ME/CFS* !

The big conference being held in London on May 23 is

called the International ME/CFS Conference.

----->>> The organizers of this conference write

in their Journal:

" ....Whilst continuing to use the term ME or

ME/CFS in our material we will be referring to the

neurological illness *myalgic encephalomyelitis* and

hope that readers will not be too confused by the

additional use of CFS or CFS/ME by contributors

and presenters.... "

A businessman with conflict of interest is not the

obvious person to rename a severe multi-systemic

disease; that's an issue for the WHO together with

biological scientists.

~jvr

``````

http://www.immunesupport.com/library/showarticle.cfm/ID/8864

Founder's Corner: Fair Name Campaign Update

Exciting New Direction

by Rich Carson

ImmuneSupport.com

05-19-2008

A number of you have asked about the status of the

Fair Name Campaign, so I thought this first

newsletter following Awareness Day would be a good

time to give you an update. First, and most

importantly, the patient community has jumped on

board. Your feedback has been positive and

encouraging.

Not surprisingly, the vast majority of patients favor

adopting a new, fair name, as 'Chronic Fatigue

Syndrome' is universally perceived as trivializing,

dismissive, and thoroughly inaccurate. And, while

there are a few people who have other preferences,

most of you strongly support adopting the acronym

ME/CFS.

Second, and equally as exciting, patient

organizations and several in the medical community

have also picked up the banner. As a result, we're

already starting to see ME/CFS appear more often.

Some examples:

In January 2007 the IACFS voted to change its name

to IACFS/ME.

The big conference being held in London on May 23 is

called the International ME/CFS Conference.

Researcher and clinician Dr. Lapp has

announced that all of their forthcoming research

papers will use ME/CFS rather than Chronic Fatigue

Syndrome.

When we began the Fair Name Campaign, our

intention was to have a vote on whether or not to

accept the Name Change Advisory Board's

recommendation of ME/CFS. However, since that

time, the campaign has taken on a life of its own, as

the use of ME/CFS in both the medical and patient

communities is growing steadily. Therefore, we are

shifting our focus, from a vote to implementation of

the name that is increasingly being recognized and

accepted - ME/CFS - and moving forward with the

guidance of respected patient leaders.

A New Direction

Since the formation of the Name Change Advisory

Board was first announced in January 2007, I have

tried to make it clear that this effort has to be driven

by patients, patient organizations and the medical

community. Now several patient leaders have

stepped up, are taking charge, and are pushing the

campaign forward. Some of those leaders include:

Lee s – co-founder of the NFA and

patient expert on ChronicPainConnection.com;

Cort – founder and editor of the Web site

Phoenix Rising, which serves the ME/CFS and FM

communities;

Marly Silverman – founder of P.A.N.D.O.R.A, an

organization supporting patients with

neuroendocrineimmune disorders; and

Dorothy Wall – author of Encounters with the

Invisible: Unseen Illness, Controversy and Chronic

Fatigue Syndrome.

Just a few of the exciting new things you can look

forward to include:

A completely redesigned Website (to be launched in

September) that will give you more in-depth

information about the Fair Name Campaign, answers

to your questions about the name change, and

information about what you can do to help. The site

will also be updated regularly, keeping you informed

on all the latest news about the progress of the

name-change effort.

An accelerated pace, with a more comprehensive

strategy for publicizing the importance of a fair name

for patients.

Celebrity endorsements featuring celebrities who are

diagnosed with ME/CFS or who have family members

suffering with ME/CFS.

The several hundred patients who have volunteered

to help with the campaign will be contacted over the

summer with suggestions of things you can do to

move the campaign forward.

Clearing Up the Confusion

The sole intent and purpose of the Fair Name

Campaign is to give patients a respectable name for

their illness. Studies have proven that patients

diagnosed with Chronic Fatigue Syndrome are not

taken as seriously as patients with the same

symptoms but a different name for their diagnosis.

The CFS name not only affects the quality of

treatment patients receive, but it also affects the

amount of money committed to research. It's hard to

convince those funding research to spend their

money on people they think are just tired all the

time. Patients deserve to be taken seriously, to have

a name for their illness that preserves their dignity,

and to receive appropriate medical care.

With this in mind, the committee of patient leaders

has spent several months researching and

considering each and every concern addressed to and

about the Fair Name Campaign. The biggest debate

regarding the name change seems to be whether the

ME should stand for Myalgic Encephalopathy or

Myalgic Encephalomyelitis.

To give you a little background, the Name Change

Advisory Board - which was composed of eight

leading ME/CFS researchers and clinicians - originally

recommended ME/CFS, with the ME standing for

Myalgic Encephalopathy. When a few patients

strongly vocalized their objections to using

encephalopathy, we attempted to compromise,

saying the ME could stand for either Myalgic

Encephalopathy or Myalgic Encephalomyelitis. In

retrospect, that was not a good solution.

There are good, valid arguments on both sides of

this issue. Each name has its pros and cons. But in

the end, it was felt that we should abide by the

recommendation of the Advisory Board – to use

Myalgic Encephalopathy as the ME in the acronym

ME/CFS. The board members felt strongly that

Myalgic Encephalomyelitis should not be used

because not every patient diagnosed with CFS had

evidence of brain or spinal cord inflammation, which

is a key component for a diagnosis of Myalgic

Encephalomyelitis. Dr. Klimas, president of

the IACFS/ME, stated that inflammation of the

central nervous system is identifiable in 80% of

patients, and therefore excludes 20% of patients

who also have classic CFS symptoms.

Myalgic Encephalopathy, on the other hand, is a

broader, more comprehensive term, and simply

means a disorder of the brain. This includes the

patients with inflammation, as well as the 20% of

patients in whom inflammation cannot be identified.

In a word, Myalgic Encephalopathy includes all

bonafide CFS patients, whereas Myalgic

Encephalomyelitis excludes 20% of these patients.

Which category do you think you would fall into?

We want to emphasize the fact that we are in no

way trying to minimize or change the name of

Myalgic Encephalomyelitis. If anything, we hope this

will demonstrate the severity of Myalgic

Encephalomyelitis and allow it to stand on its own. If

you have evidence of brain or spinal cord

inflammation and have been diagnosed with Myalgic

Encephalomyelitis, you still have Myalgic

Encephalomyelitis. We don't expect you to change

the name of your illness to ME/CFS.

There is one other concern some have expressed

about using Myalgic Encephalopathy that we would

like to clear up. They are afraid ME/CFS patients will

be lumped in with people who have mental disorders.

We talked with several medical experts and they all

assured us that Myalgic Encephalopathy refers to an

organic brain disorder and in no way includes mental

disorders. (For a more complete description of

encephalopathy, please see the footnoted definitions

below.)

Moving Forward

I'm excited about the new energy and enthusiasm

that has been injected into the Fair Name Campaign

and hope you will be, too. If you'd like to sign the

petition or volunteer to help, or submit a comment or

question, you can do so now on the Fair Name

Campaign Web site

(http://www.afairname.org/volunteer.cfm).

Don't forget to watch for the announcement of our

improved Campaign Website in September.

Whatever you do, don't allow yourself to be

dismissed as someone who has " chronic fatigue. " We

can right this wrong for ourselves, for our families,

and for a medical community still in need of a fair,

accurate name for a disease that causes

immeasurable suffering.

Keep the faith,

Your supporter and advocate,

Rich Carson

``````

Encephalopathy defined:

Source: Medline Medical Dictionary:

en-ceph-a-lop-a-thy: plural -thies:

a disease of the brain; especially one involving

alterations of brain structure

Source: New Oxford American Dictionary

encephalopathy |en-sef-a-lop-a-thy|:

noun Medicine a disease in which the functioning of

the brain is affected by some agent or condition

(such as viral infection or toxins in the blood): pl.

-thies

Source: Nature (extremely respected science

publication; in business since 1869)

ENCEPHALOPATHY …condition of the brain that can

be caused by infectious disease, metabolic

abnormalities, brain tumors, toxic drug effects or

increased intercranial pressure.

Source: www.virtualtrials.com/dictionary

A disease of the brain; especially: one involving

alterations of brain structure.