Tuesday, February 1, 2011

Institutionalized Abuse and the Treatment of Patients with M.E. and CFS

Recently, as I read back through the psychiatric studies used to back the therapies of CBT and GET, 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.

The British have been the worst abusers for years, in part because British psychiatry already has categories that fit a definition of CFS. In particular, the British have used "neurasthenia," harking back to an 1869 textbook that coined the term. The textbook is fascinating - the author makes the claim that girls who study science in high school risk either "neurasthenia" (a chronic nervous condition; the vapors; nervous breakdowns) or "hysteria" (defined here as a shrunken womb) because the body cannot develop both the mind and the reproductive organs at the same time.

How this ended up being accepted as a reputable source is beyond me, but then reviewers seldom actually look at the footnotes in a scientific journal - particularly footnotes that fall in the category of "survey of the literature." I believe that Simon Wessely and Stephen Straus, who both referenced Beard's "American Nervousness," slipped one past the profession there.

Neither neurasthenia nor hysteria are in the American Psychiatry Association's bible of diagnoses, DSM-IV. Thus far, adult Americans have been spared the worst abuses that have faced patients with M.E. or CFS in the UK.

However, a new category is being prepared for DSM-5. It is called Complex Somatic Symptom Disorder, or CSSD. The description reads just like the CDC's Fukuda (1994) definition for CFS, plus they've added in a pain version for fibromyalgia patients. So we all need to pay attention to what happens when psychiatrists believe that "CFS" symptoms are the physical manifestation of a psychological problem. The result is a classic abuse pattern.

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 diagnosis 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. 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 happened 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 the rare instance that a parent might actually be deliberately making the child sick to get attention, it wouldn't be a fancy neurosis called "factitious illness by proxy." We would be dealing with a sadistic sociopath! Clearly this theory hasn't been thought out completely - but is that because once thought out, institutions would lose this threat over parents? Once a psychiatrist confirmed that parent was not a sadistic sociopath, that would be the end of it. Thus, the Institution created a category that they can control.

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.

So say those working in secret to create the category of Complex Somatic Symptom Disorder (CSSD) for the APA's new DSM-5.

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

God willing, things will change.

Mary M. Schweitzer, Ph.D.

Note: For a fascinating read on how British psychiatrists believe patients with CFS should be treated, go to the website on CFS for professionals by King's College, London. For a new essay on the nightmare this has caused patients there, read The Mental Health Movement: Persecution of Patients? by Malcolm Hooper.