Keys to Abusive Behavior in Treatment of ME/CFS patients

[Mary Schweitzer]

From Slightly Alive, unpublished book manuscript, Mary M. Schweitzer, Ph.D., ©2009

As I read back through the psychiatric studies used to back the therapies of CBT and GET, and also as I began to read the mammoth and brilliant piece of work just released by Malcolm Hooper:

The Mental Health Movement: Persecution of Patients?

I found myself thinking about the steps that an abusive spouse or parent takes to perpetrate the crime. People often ask victims of abuse, "Why didn't you report this the first time it happened?" The victim generally has no good
answer, because he or she has been the unwitting subject of a psychological campaign by the abuser to prevent any disclosure of what is going on. Here are the main means by which abusers are able to continue their cruelty for years.

1. Isolate the victim
2. Tell the victim nobody will believe his/her story.
3. Threaten the victim with harm if he/she tries to tell the story anyway.

1. Isolate the Victim

This is accomplished by a diagosis that leaves the worst patients bereft of medical care and isolated at home. People in the "real world" do not see the worst cases. They do not see them when they come in to clinics - because they
don't come in to clinics. They do not see them at the grocery store or outside because by leaving them untreated, they have rendered the worst victims unable to participate in any way in the outside world. And by laughing at our disease,
they keep the walking wounded invisible too, because no one wants to confess to HAVING this disease. So the victim has been isolated. In the places where M.E. was a valid diagnosis, the abusive relatioship first required the premise that
M.E.=CFS (it does not), followed by the premise that CFS = "maladaptive coping mechanisms to illness" or "inappropriate desire to play the sick role."

2. Tell the victim that nobody will believe his/her story

Now, this has a twist. The recommendations of the Wessely-White-Sharpe-Chalder-Deary school of professional abuse don't have to tell the victim he/she won't be believed - we already know that. The twist in this case is in the information they are giving health care providers. They say NOT TO BELIEVE WHAT WE TELL THEM. The concept of "false illness beliefs" is heavily emphasized in all of the literature, including the CFS website of King's College London. They recommend that the medical profesional offer sympathy and PRETEND to believe what the patient is saying, but they warn not to get drawn in. Doctors who DO believe what the patient is saying are themselves isolated by
being charged with supporting abnormal "illness behaviors."

The CDC's version of this was to say - There were no cluster outbreaks. There were just outbreaks of diagnosis. Patients would go from doctor to doctor, seeking a diagnosis to confirm the patient's own beliefs about his/her
illness. it is, of course, an insult to the doctors who helped patients in the cluster outbreaks as well as an insult to patients - but the argument succeeded. Few people know about the cluster outbreaks of the 1980s, and nobody knows about those that have happened since. You will find evidence of this in Hillary Johnson's masterpiece, Osler's Web, and I was present to hear Dr. Reeves use this argument to explain away the "theory" of cluster outbreaks at the CFSAC.

3. Threaten the victim with harm if he/she tries to tell the story anyway.

This is the scariest one of the three - scary because we are not talking here about an individual, but about a society, about a government entity. About the very people who are supposed to help you (doctors). What is the threat? In the UK it's very clear: You will be sectioned. You will be sent to a psychiatric hospital. The threat can be the withdrawal of any medical care at all. That is, if you persist in peppering me with information about CFS, I will no longer be your
doctor - so where will you go when you need medical treatment for something else? I'll treat you - but don't bring up that silly disease fantasy.

Sophia Mirza needed care, but no doctor would agree to her simple request that she just see somebody without the threat of being sent into a psychiatric hospital. Sophia had been mistreated badly in a mental hospital and did not
want to go back. No doctor would promise not to send her back to the psychiatric hospital, so she saw no doctors. She had been threatened into isolation. It was abuse by the medical profession that killed her.

The threat is greater in both nations when applied to young people who become severely ill with M.E., because it is the young who are the most vulnerable. The threat is that they will be taken from their parents, because their parents
have gone to a lot of trouble to seek a diagnosis and find a way to make their child more comfortable - perhaps even find a cure.

This should be perceived as admirable behavior, but the diagnosis of "factitious illness" and "factitious illness by proxy" represent cruel violations of the normal doctor-patient relatioship. In the U.S., the threat of "coming out" - of trying to get treatment and accomodations for your child - is that your child will be sent off to the foster care system and never returned. The threat is to have happen to you what is happening to the Baldwin family in North Carlina, whose son Ryan was removed from his parents' home apparently because his parents were successful in finding a diagnosis that could help relieve some of his discomfort, successful in getting him a wheelchair to help him be more independent, and successful in being accepted for disability payments in his behalf with which to make his life more comfortable, and fund
his medical care.

In England, the threat is to be "sectioned" - to be sent to a mental hospital. And in both nations, this threat is very, very real. So this is the final threat:

If you come out about what you have, we will make your life miserable. We may even kill you.

So says the abuser.

So say the advocates of the British psychiatric school of "CFS treatment."

So say the marketing wizards behind cognitive behavior therapy and graded exercise therapy.

What does history tell us about abuse? The victim needs help from the rest of society.

Last week there were meetings in London and in Washington that - hopefully - can inform society about the institutionalized pattern of abuse which has been directed towards patients so unfortunate as to be diagnosed with "CFS".

God willing, things will change.

Mary Schweitzer

[Mary Schweitzer]

You might try You-tube - there's an ME/CFS group (look at my website, www.me-cfs.org and scroll down until you see the reference -

I can do this because it's very small bursts of energy. You find your voice (meaning authorship or artistic) is different - but a new medium can give you a sense of creativity. Your skills are still there, probably more than you realize, so after playing with the shortened format you may find new forms of expression.

My voice in these blogs is different from my professional scholarly voice - I've been doing this in one form or another since my family "gave" me a website in 1996.

You do need a digital camera or a blackberry or other type of cell phone that takes videos. Perhaps there is a way to get the use of one.

As for the book, I wrote that while a LOT better on Ampligen. I can't really do much work on it in the shape I am in now.

But - I can write blog posts.

%^}

Mary

[Anastasia]

I don't know, Mary. The challenge to express oneself while having this experience is great. Executive functioning is such a useful thing to have in any medium which requires organization -- writing, film. You find a way - at great cost, I know - I'm using you for inspiration.

Namaste, Mary Schweitzer

[Mary Schweitzer]

Namaste! It's been a while since I hesrd that. Nice to hear it again.

:^)

Mary

[Mary Schweitzer]

That was very kind. How are you doing being able to express yourself srtisticslly or throgh film?

It does help to have this small space that is mine. Or perhaps ours. :^)

Mary

[Anastasia]

Mary, I feel your anguish. Please remember that we are all commenting on a brilliant little essay written by a very skillful writer. I, too, have been published and have written for various media. And, in my last career, I was a documentary filmmaker. It's terrible not to be able to access that part of oneself.

Please know that you've still got the chops. It may be agony to use 'em but you've certainly got 'em.

[Andrea Martell]

Thank you Mary..I'll put it on my to do list an make a note to reference blog. I work a little each day as activist, giving what spoons I can spare to this cause. I am glad to have found you and this group.

[Andrea Martell]

IThank you so much. :) How would you like to have it attributed. I usually email people and ask, so I can send you a msg here if you want???

[Mary Schweitzer]

I would prefer you reference th whole blog if you use it:

http://cfsknowledgecenter.ning.com/profiles/blog/list?user=32qw535d82un8

Thanks again for the thought.
Mary

[Mary Schweitzer]

Thank you, as long as it's attributed.

I used to have a BRAME logo and link on my main website:
www.cfids-me.org

Mary

[Andrea Martell]

Mary, is it possible for me to reprint this in my blog at http://blog.blueribboncampaignforME.org. I will reprint with links back to here, or wherever you wish them to go.