ME & the Centers for Disease Control

[Guest guest]

http://bit.ly/L07Hlq

Testimony to Chronic Fatigue

Syndrome Advisory Committee

(CFSAC)

13 June 2012

CDC must end the use of the Toolkit

and the Reeves *empirical* definition

Testimony to the Chronic Fatigue Syndrome

Advisory Committee of the U.S. Dept. of Health

and Human Services Wednesday-Thursday June

13-14, 2012 M. Schweitzer, Ph.D.

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Thank you for allowing me time to speak.

I’d like to express my admiration for the young

people who testified today – I know how hard it was

for them, and they did a great service. Thank you.

When you talk about educating people – whether

teachers or physicians or the public in general – it

comes down to the CDC’s website on CFS.

Despite the changes you have made, that website

remains both wrong and dangerous to patients.

CDC’s website on CFS continues to promote one

particular viewpoint on CFS – that the disease can

somehow be managed with cognitive behavior

therapy and graded exercise.

I was glad to hear the toolkit and brochures are

going to be retired – but they should be burnt. That

should be shut down NOW.

Continuing the effective promotion of what is in there

is simply wrong, and it harms patients in the real

world –now.

Why on earth are they still around?

The reference to cognitive behavior therapy signals

the reader that the disease is really a somaticizing

disorder – psychiatric, to be solved with psychiatric

methods.

Cognitive behavior therapy, or CBT, is very different

from the pacing, or *envelope theory*, that most of

us are taught to prevent the dangerous push-crash

cycles we suffer.

Saying that CFS can be fixed with CBT implies

what British psychiatrists say out in the open – we

appear to be sick because we are deconditioned;

we are deconditioned because we have

inappropriate beliefs about illness and CBT is

necessary to teach us we really aren’t sick any

more.

That’s when the second half of the equation comes

in – Graded Exercise, with the combination often

called CBT/GET.

While the emphasis on CBT is misleading and a

nuisance, promoting graded exercise therapy is

downright dangerous.

Researchers in the past few years have shown that

patients with this disease do not operate normally

in aerobic metabolism. We do not utilize oxygen in

our cells as normal people do, and we do not expel

carbon dioxide as normal people do.

Without an understanding of this mechanism,

graded exercise is dangerous.

Other research articles suggest that there are

significant cardiac abnormalities in groups of

patients with *CFS* (Fukuda 1994). Again, without

understanding how this works, or how badly the

patient is affected by it, graded exercise is

dangerous.

Finally, studies conducted by patient organizations

in the UK have consistently demonstrated that

Graded Exercise harms more patients than it

helps.

If it were a drug – with more patients suffering

adverse events than experiencing improvement - it

would never get past FDA.

But – the CDC recommends graded exercise – on

its website, and in the published material that is

sent to anyone asking for information.

This is not okay. End it NOW.

And please, end your relationship with British

psychiatrists who work for insurance companies.

In fact, the only hard link to an institution outside

the CDC remains in the section recommending

graded exercise.

It links to Dr. White’s psychiatric CFS clinic

at St. Bartholomew’s Hospital in London.

White is chief medical officer of two insurance

companies: ish Provident and Swiss RE.

What does Dr. White think of CFS?

This is from an article published last month in the

British Medical journal:

*The requirement that conditions should be

classified … either mental or physical … causes

particular difficulty in the context of the functional

somatic syndromes or somatoform disorders, in

which physical symptoms are often assumed to

have a psychological explanation. […] For

example, chronic fatigue syndrome may be

classified as myalgic encephalomyelitis (ME)

within the neurology chapter (G93.3) of ICD-10, or

as neurasthenia, a psychiatric disorder (F 48.0).*

Really? Does CDC believe that? CFS is a

somatoform disorder? It may be classified as

neurasthenia?

While CDC helpfully links us to Dr. White’s website,

there are no links to American researchers or

clinicians. None, zero, zippo, zilch.

Why?

The most obvious reason – and another major

critique I have of CDC’s website – is that the only

research on that website is their own, often in

conjunction with Emory University.

For years the research was about childhood

traumas somehow causing CFS.

I see they have branched out to include cytokines –

but I see no references to the researchers who

have worked on the relationships between cytokine

abnormalities and CFS for twenty years. If you go

to the website, it looks as if CDC discovered it all

by themselves.

We need CDC to give a balanced perspective on

information about this disease.

We need professional summaries of research in

different disciplines – not the tiny little slices of the

research pie that CDC allows us to see.

And they should make use of the researchers and

clinicians who have represented us on CFSAC (and

the CFSCC) for almost twenty years. Why not?

Dr. Unger replied that they didn’t have to have a

balanced bibliography or depiction of the disease

because that is not what their website is for.

It was just for saying what they were doing, period.

However, recently I heard from two different friends

that there are new PSAs on the radio for *CFS*.

Now, normally I would have been pleased with this.

But at the end of the PSA, the listener is referred

to … the CDC – to its website and/or the old toolkit

for professionals and/or the new brochure, all of

which remain woefully inaccurate.

It matters that CDC has deep biases in what it

places on its website, and in its publications.

Outsiders go to the CDC website and learn that we

need cognitive behavior therapy and graded

exercise – which does not in any way reflect the

approach of American experts on the subject.

When I heard CDC’s testimony today, I had to

wonder – where do I fit? Where do people like me

fit?

I have a diagnosis of Myalgic Encephalomyelitis

and fit both the Ramsay and WHO definitions, as

well as the 2011 International Definition (Carruthers

et al, Journal of Internal Medicine).

I have immune defects and am beset by viruses,

some of which are in my spinal fluid.

If you could not find anybody with viruses, then your

subset was not patients like me.

Why? Where do I belong then?

What was wrong with your collection process that

people like me were missing?

Or if we were not missing, what was wrong with the

way you did the research that we didn’t show up?

Why are you hiding us?

Why do you say this disease is such a mystery

when it is not; that there are no treatments when

there are?

Why isn’t there an MEAC - Myalgic

Encephalomyelitis Advisory Committee?

There are at least one million Americans, of every

class and ethnicity, with this disease. There have

been cluster outbreaks in the past and there will be

cluster outbreaks in the future.

This disease ruins whole lives. Children get it.

Teenagers get it. It ruins families.

Yet both CDC and NIH continue to spend virtually

nothing on this disease. This has been going on

thirty years – more than a generation. When will it

end? How long do you think you can keep it a

secret?

Postscript on definitios:

The Fukuda definition (1994) was only intended

to be temporary until subsets of patients had

been identified using biomarkers.

If you actually READ the article itself, you will see

that. CDC has done nothing in this regard.

18 years. Nothing..

The Reeves definition, sometimes misleading

called *empirical*, is without any basis at all.

In the lone article where he used his

questionnaires on a set of 58 Kansas patients

who had been diagnosed with CFS using

Fukuda, he could only come up with SIX

who met his definition.

I would hardly call that a ringing endorsement. It

should be dumped.

The Canadian definition of 2003 was created

by a committee of seasoned clinicians after

Canada adopted its own version of ICD-10 and

placed both CFS and ME in the same

category. It is intended for clinical use, but it has

already been useful in research.

If nothing else, use this definition.

Dr. Reeves always said there would be no

references to different names or definitions until the

community of scientists came up with one.

Well – they have.

Last summer a group of researchers and clinicians

led by Bruce Carruthers published an article in the

Journal of Internal Medicine, defining Myalgic

Encepalomyelitis and offering a way to diagnose it.

(I should note that Melvin Ramsay had a textbook

describing ME in the 1980s – this has been

ignored by CDC.)

The new ME definition makes post-exertional

exacerbation of symptoms – which can be

measured objectively – the center of the disorder –

not chronic fatigue.

This is what we need = acceptance of the

diagnosis of Myalgic Encephalomyelitis with a

scientific definition.

For those diagnosed with chronic fatigue syndrome

who do not meet the criteria for Myalgic

Encephalomyelitis, I would recommend the

Canadian definition – and if they don’t meet that,

find out what they really have. And treat them.

CFS was a misstep. When the cluster outbreaks

occurred around the United States in the 1980s,

American clinicians did not know about ME

because it was not used in the United States –

epidemic neuromyesthenia had been used to

mean the same thing, but there had been little

about it after the 1970s..

Had those cluster outbreaks occurred in Surray,

England, instead of lake Tahoe, or Lyndonville NY,

or Rockville land, or Hollywood, or Cherry Hill

NJ – the patients would have been diagnosed with

ME We would be much further along (I would

hope) on diagnosing and treating patients.

Instead, CDC and NIH (represented by the late

Straus) went its own way, adopting a

made-up name for a disease that already had a

name, a definition, and research.

We have been set back 30 years by this misstep.

Time to go back to the name in place before that

misstep – ME – time to accept that there already

exist formal definitions for the disease, and time to

quit saying its so mysterious, because it is not.

Thank you.

M. Schweitzer, Ph.D.